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Archive of the Special Education Message Board Folder:
Down Syndrome
June 30, 1995 - November 25, 1997
FILE NAME:  downsyn1.txt
391 messages - 122 Pages

SUBJECT:  A great book!  Date:  95-06-30 15:37:10 EST
From:  Boulevard

I'm a mom to Austin, age 8, with Down Syndrome, and a practicing public
school speech/language pathologist.  I've just finished reading Libby Kumin's
book - "Communication Skills in Children with Down Syndrome" and think it's
wonderful from both perspectives - parent & SLP.  If you are a new parent, or
an SLP with questions about how to work with or provide parental
support/suggestions, this is a great resource!

SUBJECT:  Re A great book!  Date:  95-06-30 18:21:52 EST
From:  KarenL2888

A beautiful lady wrote it too! And she has an AOL account to boot!
Love you Lib! Karen
PS...we have Pat Oelwein online too , author of another great book, Teaching
Reading to children with DS
Love you too Pat!

SUBJECT:  Re:Down Syndrome Surgeries  Date:  95-07-14 20:21:15 EST
From:  EOlive8407

I am the mother of a 18 yr old Down,s daughter. My daughter was born two
months early with a very severe heart proplem.  At a year old she went under
open heart surgery, she had an ASD, VSD, and a PDA repaired and the doctor
gave her a ten percent chance to survive the surgery, but she made it .  But
then she had a stroke that left her right side paralazed, and two weeks later
I took her home.  Through the years she has had many ear infections, and had
tubes but in twice which did not help at all .  She is on constant
antibiotics for ear infections.  She also had foot surgery done .  And
because she still has a leaky heart valve she needs to be on antiobiotics
when any surgery is done.  It has been hard on my daughter through the years
but we take one day at a time.






SUBJECT:  Eolive  Date:  95-07-16 13:21:21 EST
From:  KarenL2888

Welcome to our online group.  We would love to meet you in a chat online some
evening.  My son is 14 and the joy of my life.  Welcome! Karen

SUBJECT:  Day
1-Piracetam  Date:  95-07-24 12:34:32 EST
From:  Kaemac

I am new to this area, and possibly this subject is already in this forum.
There was a segment on Day 1 last week about Down Syndrome and how a mother
used various Herbs(?) and the drug Piracetam to help her DS child and she
improved.  Just to let you know, you can send a SASE to:TRI 1324 N. Burnside
# 6 Gonzalez LA 70737.  You will recieve info on this.
Good Luck!!

SUBJECT:  Re: Day 1-Piracetam  Date:  95-07-29 01:59:10 EST
From:  Ty Reg

For others who are interested, I know that earlier this year there were posts
from Dixie Lawrence, who was featured on the Day One that was recently
repeated with an update, at keyword disabilities, learning disabilities, Down
Syndrome folder.

There are WWW pages with the information, also:

http://fox.nstn.ca/~roger/Nutri-Chem.html

and

http://wvlink.mpl.com/users/casten_t/downsyn1.html

The subject occasionally comes up at the Down Syndrome Chats I frequent on
Monday and Wednesday nights. It's an interesting topic.


SUBJECT:  ARCHIVED MESSAGES  Date:  95-08-02 04:14:30 EST
From:  Ratatat

!!!!!!! N O T I C E !!!!!!!

PREVIOUS POSTS HAVE BEEN ARCHIVED INTO THE SPECIAL EDUCATION LIBRARY FOR YOUR
DOWNLOADING CONVENIENCE.

Ratatat
Assistant Host, Special Education

SUBJECT:  Re: ARCHIVED MESSAGES  Date:  95-08-14 01:36:23 EST
From:  Ty Reg

What a wonderful idea! I look forward to reading up in the special ed
library.

Could you give directions on how to find this area?

I'm sure there will be great activity following the NDSC convention in
Washington DC this month. I'd love to read about it here.

SUBJECT:  Directions to
SpEd Library  Date:  95-08-14 08:25:43 EST
From:  Ratatat

<<Could you give directions on how to find this area?

I'm sure there will be great activity following the NDSC convention in
Washington DC this month. I'd love to read about it here.>>

Sure!  Use Keyword TIN:  then click Resource Pavillion.  Scroll down to the
Special Education Forum, and double click.  You will see the Special
Education Library - double click on this, and all the files will be in front
of you.  Use scroll and MORE to see all the files.

Also, check the folder:  Renovated Message Board for directions about
downloading.

SUBJECT:  Re:Directions to SpEd Library  Date:  95-08-14 22:47:09 EST
From:  SusanS29

Another, easier route is:

Keyword PIN

"Special Education"

Then you'll see the library as one of the choices.

SUBJECT:  Re: Directions to
SpEd Library  Date:  95-08-18 03:10:29 EST
From:  Ty Reg

Thanks! It's a great area. I was very interested in the Chat Logs of the
Inclusion Chat, also.

SUBJECT:  Re: Directions to SpEd Library  Date:  95-08-18 20:13:10 EST
From:  SusanS29

I don't think there are any chat logs from the Inclusion Chats as they are
informally organized.

SUBJECT:  Re: Directions to SpEd Library  Date:  95-08-20 17:33:37 EST
From:  C1ndysue1

Inclusion chat logs should be found in the disability area....ask Karenl2888
to double check.

For all newbies here there are several chats for DS.  Here is the list:

Sunday nights at 9:00 EST in private room DS BABIES

Monday nights at 12 midnight EST in Better Health and Medical Forum (also
known as the west coast chat).

Tuesday nights at 9:00 EST in the Better Health and Medical Forum.  At 10:00
we move to the private room Down Syndrome and have been known to stay there
for a few more hours!

Wednesday nights at 9:00 EST in private room Up Syndrome

and of course the Inclusion chat on Thursday nights at 10:00 in the Better
Health and Medical Forum.  This chat is not specific to Down Syndrome or
school.  This is really a good chat!  This chat also moves to a private room
at 10:00 called Down Syndrome.

There is also a chat for people with Down Syndrome in a private room.  Right
now they are on summer break and will resume their chats in September.

There are more BB's listed in the disability section, too.  Look under
general discussions and learning disability.

I also keep a mailing list for general information.  I don't send out long
memos (maybe once or twice in the last18 months).  I send out topics and
dates for the Tuesday chats, convention info, etc......  I also send out
Email from others who request that I forward to the whole group.

SUBJECT:  Re:
Forwards  Date:  95-08-22 01:54:19 EST
From:  Ty Reg

CindySue,

I would like to be included on the mailing list for forwards for the whole
group, and the memos with topic information.

I have a Down Syndrome online newsletter, and an online Inclusion newsletter,
and am looking for teachers and other staff for input and resources.



SUBJECT:  NDSC Convention  Date:  95-08-25 17:57:29 EST
From:  Ty Reg

This weekend is the National Down Syndrome Congress Convention; I would like
to have the access information posted on where we can write to get tapes of
the workshops and other information. I can't wait to hear about it!

SUBJECT:
DS, ADD and Ritalin, etc 1 of 3  Date:  95-09-04 03:49:26 EST
From:  Ty Reg

I was wondering if there is any interest in a discussion of Ritalin in
treatment of ADD with students who have Down Syndrome.

These are the comments I have read to date:

Responder 1 <<Regarding Down syndrome and learning disabilities, you may be
interested to know that in England, the term "mental retardtion" has been
retired, and all children with DS are seen in the category of LD.

That opens a can of worms for the old mindset, because LD kids are almost by
definition a mixed bag, and have to be considered individually for school
planning. Certainly, those kids with DS who are treated as LD, have the same
types of responses to specific therapy as do non-DS childen.

    Regarding ritalin, I think it is heavily over-prescribed in DS, for
reasons I discuss in a post on down-syn. To be fair, I think it is even more
over-prescribed in non-DS kids (for many of the same reasons). That's some
kind of equity, at least.>>

Responder 2<<I have found that there is extreme variability from one child to
the next in the dose required and interval between doses required to treat
ADHD.  Dosing must be very much individualized and not calculated based on
weight, etc.

It is also my observation that a dose will last longer sometimes that others,
i.e. when a child is not having to concentrate or attend a dose can last
longer than it may during a particularly grueling morning at school.  It
seems a bit like the gas in your car or an insulin dose, the more you need to
use it(i.e. working hard at school or in the case of insulin eating a lot of
sugar) the faster it burns up.

After a while, parents can tell what is the best dose and how often is must
be given.  Short of having the child live with you for a few days, there is
no way for a doctor to make that determination as well as a parent can.>>

Responder 3<<<Absolutely interesting and important because untreated ADD/ADHD
can have a significant impact on a person's life.

I have a copy of the DSM criteria for ADD/ADHD if anyone is curious.  Since
different meds seem to be coming under discussion, there is a ADD/ADHD med
summary around, that I can get a hold of. This was not done by a
professional, but by a parent.

Over a number of months she compiled a summary of parents experiences with
different meds used with/for the treatment of ADD/ADHD.

She does not pretend to any scientific expertise or basis.  As many of the
parents on the ADD-Parents list have found practical personal experience can
be as telling as a PDR when it comes to a syndrome that seems to be so little
understood
by so many.  For example, Ritalin is notorious for rebound, parents have
successfully shared many ideas and strategies for reducing this effect.

Of course it should be understood that such a document is not intended
to prescribe, but it can serve as a useful aid for parents and MDs who
are new to understanding ADD/ADHD.  BTW, I have already forwarded a
copy of it in the past to a MD, met through the internet who was curious
and got nothing but positive feedback on the usefullness of the document.

So now consider this, just like a child with a Learning Disability, a child
with Down Syndrome may need additional teaching stategies and support during
the school years in order to succeed.  AND just like a child with LD, if the
child with DS has his ability to learn additionally impaired with a syndrome
such as ADD/ADHD, the struggle will be just that much greater and harder.

Some time ago a very wise lady, who has a son with DS commented to me, that
she felt that kids with DS and kids with LD are more similar than different
in their educational needs.  As I have watched this list for over a year now,
I do believe this is true.  Certainly the strategies for scholastic learning
bear striking similarities AND as for the concerns and struggles with the
school system  . . . .>>>
<end of 1 of 3>

SUBJECT:  DS, ADD, Ritalin etc 2 of 3  Date:  95-09-04 03:55:57 EST
From:  Ty Reg

Second of Three:

Responder 4<<<<It does, indeed have the potential for unpleasant side effects
but when used by someone who knows what they're doing and properly monitored
it can dramatically improve the lives of children with ADHD.  The unpleasant
side
effects are rare and have not, in my *extensive* experience, harmed a child I
have treated.

About 5% of the children I see with ADHD do not respond to or tolerate
Ritalin but do benefit from one or another of the alternatives. A careful and
thorough medical and developmental evaluation will result in the correct
diagnosis and virtually eliminate the inappropriate use of Ritalin.

The prevalence rate of ADD/ADHD in the school aged population is between
6-10% with not all requiring medication to deal with the symptoms. We use
school surveillance to monitor for over or under-ascertainment and consider
rates of under 4% or over 5-6% to warrant a further look.  If you feel
Ritalin is overused in your community, a good quick and dirty way to check is
to ask for the number of children getting Ritalin or Dexedrine in school,
divide by the number of children enrolled, and get a percentage.  A high
(greater than say 7%) figure should trigger a study by the school. I'll help
design one if you like.

There was a time when I was reluctant to prescribe Ritalin.  Now, I feel it
is medical neglect to deny it to a child who suffers the symptoms of moderate
to severe ADHD. The condition, undiagnosed and untreated, is a devastating
and invisible handicap that can result in dramatic personal and professional
underachievement and unhappiness.>>>>

Responder 5<<<<<Dexedrine (dextroamphetamine) is an alternative to ritalin.
It has a longer acting time in the body but is sometimes harder to dose than
ritalin.  There are no studies that I know of comparing ritalin with
dexedrine in a
controlled setting.

By the way, if anyone's interested, there have been two studies in the last 6
years that show that the percentage of children with DS that develop signs
and symptoms of ADD is the same as in the general population: about 5 to
8%.>>>>>

Responder 6<<<<<As a parent of a child with ADD - I have seen the discussion
"to medicate or not to medicate" many, many times. Certainly wholesale
medication of any child with any ADD/ADHD medication just to try to improve
their cognitive and attentive abilities has dubious merit.

However there are many children who DO benefit from the various medications
used for ADD/ADHD.  These are children who have their ability to learn
impaired by the symptoms of ADD/ADHD.  I have seen many parents of children
with ADD/ADHD, who fought long and hard against medicating their children.
They
tried many alternatives with limited or no success and when they finally
opted for medication their primary feeling was regret that they had not done
so sooner.

For many children with ADD/ADHD, the final choice is the inculsion of
medication.  For almost any child with ADD/ADHD, medication is NOT the only
"solution", behaviour modification and individualized education planning is
also needed.
I do have to add a few caveats;

end of 2 out of 3


SUBJECT:  DS, ADD, Ritalin etc 3 of 3  Date:  95-09-04 03:56:04 EST
From:  Ty Reg

Third of three

FIRST - Yes, there can be unpleasant and even dangerous side effects with
some of the medications available for ADD/ADHD - however this is also true
for many drugs and with careful medical monitoring, side effects can be
minimized. There are a number of ADD/ADHD medications available; it is not
uncommon to have trials of different medications (and combinations of and
levels of medications) before an optimal choice (with least side effects) can
be made. Unfortunately some children go through this more than once as either
side effects show up or a previously successful regime requires modification.

SECOND - Medication for ADD/ADHD is not always successful for a limited
number of children (and adults) with ADD/ADHD. A prime example of this is a
Dr. E. Hallowell, who with another doctor has written two of the most
definitive books on ADD/ADHD in recent years.  Even though medications do not
work for him, he
knows and advises that they do work for many.

THIRD - for children with ADD/ADHD (like children with DS) there is no
miracle cure, but there are many things that you can do that will enable the
child to make the most of his/her potential abilities.

My child (like many with ADD) had reams of testing and a variety of methods
of individual teaching strategies were tried.  However he still struggled to
meet each goal and many goals met, seemed to vanish again.  What the
medication does is enable the child to focus and to benefit from any
behaviour modifications and teaching strategies. With medication  Josh, in
the past year and a half, has managed to learn MANY times what he learned in
his first six and a half years
of school and kindergarten. He has made previously impossible gains and
successes in learning.  He is also a much happier child now, because he can
succeed at what he tries so hard at.  Even his strengths (art) seem to have
benefited.  (I suspect relief from frustration is at work here).

In summary don't throw out the idea of an ADD/ADHD medication if you think
that your child has the complication of ADD/ADHD symptoms. Do learn more
about ADD/ADHD, if you suspect it.  There have been posts from parents of
children with DS AND with ADD/ADHD on this list in the past; it is not an
impossible combination.

If you become more convinced that ADD/ADHD is an issue for your child then
get him/her to a doctor that specializes in ADD/ADHD.  There is an
international organization CHADD that has offices/representives in probably
all the states and provinces of Canada and the US.  From CHADD you can get
more information on ADD/ADHD and on how to find doctors in your area that
specialize in ADD/ADHD.  For further information you might try reading any of
the following books:

Driven to Distraction by Edward M. Hallowell MD & John J. Ratey MD
Answers to Distraction by Edward M. Hallowell MD & John J. Ratey MD
You Mean I'm Not Lazy, Stupid or Crazy?! by Kate Kelly & Peggy Ramundo>>>>>>

Responder 7<<<<<<<Actually, ritalin is a very good drug for ADD.  It is a
psychostimulant and thereby stimulates the brain cells to make more
norepinephrine, the neurotransmitter that is deficient in ADD.  It sort of
"fills the tank,"  helping the child (or adult) to concentrate better.  It
has few short term
side effects and no long term side effects, and has helped thousands of
school children succeed in school.  In the correct doses, it should NOT make
a child "spacy" or "zombie-like."

I do feel that behavioral modification is a necessary part of treating ADD,
as well.>>>>>>>

End of comments, 3 0f 3


SUBJECT:  Re:DS, ADD and Ritalin, etc 1 of  Date:  95-09-04 08:20:06 EST
From:  Ratatat

<< Regarding ritalin, I think it is heavily over-prescribed in DS, for
reasons I discuss in a post on down-syn. To be fair, I think it is even more
over-prescribed in non-DS kids (for many of the same reasons). That's some
kind of equity, at least>>

I don't know that this is true.  We should ask ourselves if there is more
breast cancer today, or if the diagnostic tools are better.  I think the same
can be said about ADD.

<<It does, indeed have the potential for unpleasant side effects but when
used by someone who knows what they're doing and properly monitored it can
dramatically improve the lives of children with ADHD.  The unpleasant side
effects are rare and have not, in my *extensive* experience, harmed a child I
have treated.  >>

I just want to emphasize here the unpleasant side effects are RARE and that
all are reversable by stopping the medication.  Ritalin is not addictive,
there is no withdrawal - so stopping the medication can be immediate and
safe.  Also, about 75% of the people with ADD respond positively to Ritalin.
This is why it is the first tier medication prescribed for ADD.

<<For many children with ADD/ADHD, the final choice is the inculsion of
medication.  For almost any child with ADD/ADHD, medication is NOT the only
"solution", behaviour modification and individualized education planning is
also needed.>>

A very WISE statement.  The medication helps the child be more available to
learn from the modifications and accommodations provided.  It provides them
with the mental focus to learn from their environment and the education being
offered.

<<Yes, there can be unpleasant and even dangerous side effects with some of
the medications available for ADD/ADHD - however this is also true for many
drugs and with careful medical monitoring, side effects can be minimized.
There are a number of ADD/ADHD medications available>>

Dangerous!?!?!?  Ritalin and Dexadrine are very very safe medictions.
Ritalin in particular is the single most studied pediatric medication.  And,
in the therapeutic doses prescribed it is very, very safe.  A third tier
medication, Cylert, is also safe for most children, but because of a very
rare event of a build up of enzymes in the liver for some children, blood
levels are taken every six months or so to monitor this.  If there is an
elevation in the enzymes, then the Cylert can be discontinued.  No effects
are irreversable.

<<<Actually, ritalin is a very good drug for ADD.  It is a psychostimulant
and thereby stimulates the brain cells to make more norepinephrine, the
neurotransmitter that is deficient in ADD.  It sort of "fills the tank,"
helping the child (or adult) to concentrate better.  It has few short term
side effects and no long term side effects, and has helped thousands of
school children succeed in school.  In the correct doses, it should NOT make
a child "spacy" or "zombie-like.">>

Ritalin primarily effects the neurotransmitter, Dopamine.  It helps regulate
the production, storage and flow of this brain chemical.  Sort of like a
harbor master making sure that the boats coming in and out of the harbor do
so in the right numbers so the harbor works effectively.  When the harbor
master is away, the boats can create chaos in the harbor.

SUBJECT:  Re:DS, ADD
and Ritalin, etc 1 of  Date:  95-09-04 10:03:49 EST
From:  SusanS29

"Some time ago a very wise lady, who has a son with DS commented to me, that
she felt that kids with DS and kids with LD are more similar than different
in their educational needs.  As I have watched this list for over a year now,
I do believe this is true.  Certainly the strategies for scholastic learning
bear striking similarities AND as for the concerns and struggles with the
school system  . . . .>>>"

Having taught both children with DS and children with learning disabilities I
have to disagree -- that is, if the LD students have been taught well. They
are different kinds of learning impairments (a matter of type as well as
degree). Some "LD" techinques are nothing short of good teaching and will
work with all. Others are (or should be) customized to the child's unique and
unusual learning style. But the two groups are far more different than
similar when considering learning needs.

SUBJECT:  Re:DS, ADD, Ritalin etc 2 of 3  Date:  95-09-04 10:05:18 EST
From:  SusanS29

"About 5% of the children I see with ADHD do not respond to or tolerate
Ritalin but do benefit from one or another of the alternatives. A careful and
thorough medical and developmental evaluation will result in the correct
diagnosis and virtually eliminate the inappropriate use of Ritalin."

Only 5%? That means you have 95% success with Ritalin? That's the highest
success rate I've ever heard. I hope you will consider writing an article or
something about how you accomplish that. It's quite remarkable. (Pat on
back)

SUBJECT:  Re:DS, ADD and Ritalin, etc 1 of  Date:  95-09-04 10:10:59 EST
From:  SusanS29

I would just point out to all these excellent point that very rarely there
*are* potentially dangerous side-effects to both Ritalin and Dexedrine. They
are rare but real.

On the other hand one baby aspirin every other day put my husband in the
hospital. He had a silent ulcer, and the tiny amount of aspirin caused it to
bleed.

Even baby aspirin in tiny doses, in an adult, can be dangerous in rare
circumstances.

SUBJECT:  Re:DS, ADD, Ritalin etc 3 of 3  Date:  95-09-04 10:12:04 EST
From:  SusanS29

"My child (like many with ADD) had reams of testing and a variety of methods
of individual teaching strategies were tried.  However he still struggled to
meet each goal and many goals met, seemed to vanish again.  What the
medication does is enable the child to focus and to benefit from any
behaviour modifications and teaching strategies. With medication  Josh, in
the past year and a half, has managed to learn MANY times what he learned in
his first six and a half years of school and kindergarten."

YES.

People don't realize (because we talk so much about behavior) -- ADD CAN
INTERFERE -- DRAMATICALLY SOMETIMES -- WITH MEMORY FORMATION.

That's what learning is -- memory formation. The effects can be
devastating.

SUBJECT:  Re:Eolive  Date:  95-09-09 00:01:09 EST
From:  Abra829H

We are still taking it day by day , but she is doing great.  My daughter is
enrolled at McKinnon school and she loves as I do.

SUBJECT:  Mosaic Down's  Date:  95-09-13 20:15:20 EST
From:  Frogguy7

Have a newborn in our district--2 months with Mosaic--My kn owledge is
limited to old info from grad school.  Any suggested resources?  Incidence?
Thanks for your help

SUBJECT:  Re: Mosaic Down's  Date:  95-09-16 05:12:19 EST
From:  Ty Reg

Here are some online resources and information about babies with Down
Syndrome:

Open Window online newsletter, WBwDS
DS Online Support, [e-mail]

Down Syndrome WWW Home Page
http://www.nas.com/downsyn/

National DS Congress email    [e-mail]

Down Syn list serv,   [e-mail]
(Available at keyword newsgroups using search word Down-Syn)

Your Baby has Down Syndrome video $18
The Mackenzie Sara Noca Charitable Trust
1510 Greendale Drive
Pittsburgh, PA 15239
[phone]

"Count Us In" by Jason Kingsley and Mitchell Levitz. 1994. ISBN
0-15-622660-x
Harcourt Brace, 465 S. Lincoln Drive, Troy,  MO   63379 Phone [phone]

BOOK: Communication Skills in Children
 with Down Syndrome: A Guide for Parents;
Libby Kumin;  ISBN Number:  0-933149-53-0 .
Woodbine House, 1-800-843-7323

BOOK: Teaching Reading to Children with Down Syndrome, A Guide for Parents
and Teachers
Patricia Logan Oelwein; ISBN Number 0-933149-55-7
Woodbine House, 1-800-843-7323

_Babies With Down Syndrome, A New Parents' Guide_, ed.  by Karen
Stray-Gundersen, Woodbine House, ISBN 0-933149-64-6

Love and Learning
Joe and Sue Kotlinski,
P.O. Box 4088, Dearborn, MI 48126-4088
Parents of a child with Down Syndrome have developed a teaching technique
which enabled their daughter to read over 1000 words by age 5.  This method
utilizes videos, audio tapes, and books to help develop language, reading,
and comprehension skills.

Down Syndrome is a chromosomal anomaly that occurs in 1.3 per 1000 births.
For some unexplained reason, an error in cell development results in 47
chromosomes rather than the usual 46. The extra gene material slightly
changes the orderly development  of the body and brain. About 5000 babies
with Down Syndrome are born in the United States every year. The national
population of individuals with Down Syndrome is estimated to be 250,000.

About 80% of babies with Down Syndrome are born to mothers under the age of
35. About 1 in 400 babies born to women over 35 have Down Syndrome.

There are three major types of Down Syndrome. Babies are most likely to have
Trisomy 21, meaning presence of extra genetic material on the 21st pair of
chromosomes resulting from an anomaly in cell division during development of
the egg or sperm or during fertilization. About 95% of people with DS have
Trisomy 21.
About 4% have Translocation, where the extra chromosome 21 broke off and
became attached to another chromosome.
About 1% have Mosaicism, where only some cells have Trisomy 21.


SUBJECT:  Down Syndrome  Date:  95-09-19 14:32:08 EST
From:  NSchm32697

I am a graduate student at The Johns Hopkins University in Baltimore, MD
researching mental retardation.  I would like help and information with
professional and parent organizations addressing the needs of this
exceptionality (description, address, requirements for membership and annual
dues if any).  I also need services available for this population beyond the
age 21.  I can be "emailed" at nschm32697.  THANK YOU.

SUBJECT:  Re:Eolive  Date:  95-09-19 23:21:32 EST
From:  Abra829H

My daughter Heather is 18 yrs. old., and has Down's. I would like to chat
with someone who also has an older Down's adult, especially those with multi.
medical proplems.

SUBJECT:  Re:Eolive  Date:  95-09-20 18:02:56 EST
From:  Abra829H

TO KAREN I WOULD LOVE TO CHAT ONLINE SOMETIME, MY DAUGHTER HEATHER HAS DOWNS
AND IS EIGHTEEN YEARS OLD, WITH MULTI MEDICAL PROBLEMS.  AS THIS IS MY FIRST
COMPUTER I AM LOST ON HOW TO JOIN IN ON THE ONLINE CHAT.  BUT I WOULD LOVE TO
LEARN HOW TO BECAUSE BEING A SINGLE MOM OF TWO , ANDC HAVING ONE CHILD WITH
DOWNS I FEEL I HAVE ALOT TO SHARE.  MY DAUGHTER HEATHER GOES TO MCKINNON IN
SAN JOSE,CA, BUT LAST YEAR SHE WENT TO CUPERTINO HIGH WHERE THE TEACHER WAS
ABUSING HER.  IT WAS A VERY UPSETTING TIME.

SUBJECT:  Re:Eolive  Date:  95-09-20 20:16:18 EST
From:  KarenL2888

Getting to the chats....
Click the GO TO in the top line, and select Keywords.  In the Keyword box
that comes up type HEALTH.  When the health forum opens, click on the box
marked CHAT.  We are there Tuesdays at 9PM EST and Inclusion Chat is
Thursdays at 10PM EST.  Nice to meet you, and Welcome!  Karen

SUBJECT:  Young
Parents  Date:  95-09-20 20:55:33 EST
From:  ALee100171

I'm now 24 but had my son, Tommy, when I was only 21. I'd like to know if
there are any other young moms out there that got the surprise of their lives
so soon in life too. They say at that age my odds are better at winning the
lottery than to have a Downs baby. Guess I'm just one of the lucky ones!!
Angie

SUBJECT:  Re:Young Parents  Date:  95-09-20 21:28:25 EST
From:  Boulevard

Angie, I had just turned 28 when Austin was born.  He's 8 now....and I'm
29....    ;)   -Nancy

SUBJECT:  Re:Eolive  Date:  95-09-20 21:53:05 EST
From:  SusanS29

Abra thank you for posting, but please use both upper and lower case letters.

Thanks!

SusanS29-Host

SUBJECT:  Down Syndrome/Cochlear Implant  Date:  95-09-22 20:41:31 EST
From:  SLangan101

Hello, we have an 8 yrs old daughter with Down Syndrome and she  has
a profound hearing loss.  She was implanted 3 years ago with a Cochlear
Implant and she is doing just fine.  Would like to speak with anyone with a
child who has a hearing loss.

SLangan101

SUBJECT:  Re:Down Syndrome/Cochlear Implan  Date:  95-09-23 11:49:57 EST
From:  SusanS29

SLangan I would like to ask a question of you. I know a young man (college
age) who has profound, but not complete, hearing loss. He and his family are
thinking about a cochlear implant.

Was your child's hearing loss total? I thought -- at least when the cochlear
implants were first developed -- that they were only for those who were
totally deaf, with no hearing whatsoever. Has that view changed, do you
know?

SUBJECT:  Help for behavior problems  Date:  95-09-30 09:10:41 EST
From:  Active Mom

I teach EMH and I currently have a DS student.  This is my 3rd year with him
and I will have him 2 years after this one.  I am very concerned with his non
compliance and would appreciate any info anyone might have on this subject.
He seems to know that there are no consequences to his misbehavior, as from
the Director of SpED we are not allowed to call parents for extreme
behaviors, ie... stripping naked, deliberatly pooping on the floor, asking me
to kiss his penis, throwing his shoes at the principal, and this is just the
tip of his iceberg.  I really fear for his future if we can't help him now.
He is 10 years old.  I have a new principal who is doing a great job and
really trying to make a difference, but I need advice from those who might
know.  Please e-mail any help available, including good books or magazines if
you know of any.  Thanks   jacquie, or Active Mom

SUBJECT:  Re:Help for behavior
problems  Date:  95-09-30 22:30:29 EST
From:  Ty Reg

Dear Jacquie

Thank you for posting this message to the DS board!

As a parent and advocate, I have to say that the parents of this child must
be notified of his behavior. I believe in light of the sexual content the
actions you describe, the child should be referred to Child Protective
Services and also recieve mental health counseling. These behaviors are not
within the norm for any 10 year old and signal to me that this boy is
suffering from severe trauma. These behaviors are not typical of children
with Down Syndrome and indicate a need for help far beyond what you might be
able to give at school.

If for not other reason, you should call a team meeting for this student if
he feels there are no consequences to his behavior. All children need the
security of adult intervention when they stray from the bounds of civilized
expectations. Treating him differently than we would a child without DS is at
the very least a violation of his civil rights.


SUBJECT:  Re:Help for behavior problems  Date:  95-10-01 19:06:39 EST
From:  Sherry Sch

This child has some severe problems that HAVE to be addressed.  It sounds
like you need some related service support ie: a behavior specialist. I also
would like to point out... if this was my child, I as a parent would want to
be made aware of the existence of these behaviors at school.   I think you
should call a team meeting and get everyone on this student's team involved
and try to address these problems from every domain.
Good Luck.
Sherry

SUBJECT:  Re:Young Parents  Date:  95-10-01 19:19:47 EST
From:  Sherry Sch

I was also 21 years old when my son Dan was born with DS. He is now 13 years
old and of course I am not a young thing anymore.   When I think back... geez
21 is very young to be experiencing motherhood for the first time and yes
having Dan in my life caused me to finish my growing up in a hurry.   Having
Dan in my life change the course or road I was taking in life. So at least by
being young I have had lots of time to experience and enjoy the wonderful
change in course I have found myself on.
Sherry Schroeder

SUBJECT:  1996 Down Syndrome Quilt Project  Date:  95-10-02 17:26:09 EST
From:  LAvril

The requests for a '96 quilt have been overwhelming.   With almost one year
to complete this project,
everyone who wants to participate should have ample opportunity. If
you are interested...please don't wait for DS QUILT '97 as there
are no plans for that project at this time.

TITLE:  I can do anything

CONCEPT:  Square needs to be created by a person with DS!

SIZE:  You will send me a piece of fabric (preferably 100% cotton)
that is at least 6.5" square.  If you are not able to measure
accurately , please send a larger piece and I will cut it to size.
Design area is 6" square.

IDEAS:  Square should represent a learned skill or talent.  The
possibilities are limited only by your creativity!  Here are some
ideas to get you started:
Skill                    Square

Tying shoes              --Sew a tied shoe lace to the square.
Painting/drawing         --Paint or draw on the square.
Writing                  --Write name, letters, numbers on the
                              square.
Stringing beads          --Secure a string of beads to the square.
Photography              --Transfer a photo to the square.
Sewing-(Machine)         --Sew a square.
Ironing                  --Iron an iron-on patch to the square.
Shopping/money management--Secure a purchased item to the square.
Buttoning buttons        --secure a button  and buttonhole to the
                              square.
Sewing-(Hand)            --Sew something on to the square.
Embroidery               --Embroider on the square.
Reading                  --Transfer a book page on to the square.
Gardening                --Secure dried flowers onto square with
                              vinyl overlay.
Collects rocks, shells,  --Secure item or transfer photo of items
  baseball cards              on to square


ESSAY:  Essay should be written in the first person ("I did this",
"I learned to do that").  Essay can be brief and should include
name, city, state, age, skill represented on the square.  Please
also include a photo of the person and one of the square.

COST:  I am requesting a submission fee of $5 per square to help
defray the costs of creating the quilt.

DEADLINE:  Squares will be accepted all year.  Deadline for
submitting the squares is June 01, 1996.  Quilt will be unveiled at
the '96 NDSC.


If you have any questions please e-mail me at [e-mail]

or

you can reach me at (and send your squares to):

Laura Avril
4456 Brittany Drive
Lisle, IL  60532-1045
[phone]

SUBJECT:  Re:1996 Down Syndrome Quilt Proj  Date:  95-10-05 09:40:48 EST
From:  GIVING U

PLEASE GIVE ME MORE INFORMATION ABOUT THE QUILT PROJECT.  I HAVE SOME YOUNG
ADULTS THAT WOULD LIKE TO BE INVOLVED     GIVING U

SUBJECT:  Re:1996 Down
Syndrome Quilt Proj  Date:  95-10-07 06:05:11 EST
From:  Ty Reg

You might want to email LAvril directly about the Quilt. I will send her a
note asking that she check for responses to her posts here.

I'm sure she would appreciate any insight you have on how to increase
participation by people with Down Syndrome, ie having essays dictated, or
other accommodations that allow participation by people with diverse
abilities.

It's good to have you online!

PmW

SUBJECT:  Re:Young Parents  Date:  95-10-11 19:51:01 EST
From:  HERRINTON

I was 26 when I had Ryan and I thought that was young!  I do know another
Mom, who is now 50, who was 21 when she had her son with DS.  Needless to
say, things were quite different then.  She was/is a real advocate and he is
quite a star.  He has done beautifully, works full time in a bank, travels
with a sped. group, is looking to get engaged, etc.  You never know!!

SUBJECT:
Re:Eolive  Date:  95-10-12 00:10:50 EST
From:  Abra829H

I just discovered how to get to the on-line chats, hope to talk to you on the
next one.

SUBJECT:   Linbdamood-Bell  Date:  95-10-14 13:17:45 EST
From:  Trudrich

I have an eleven-year-old child with Down syndrome.  She has underlying
speech and lan guage difficulties.  We would like any information on
Lindamood-Bell, Orton-Gillingham, Slingerland, Spalding methods.  We don't
want to "patch" with single I.E.P. objectives.  We want to teach the
underlying skills so that she can perform many life functions.

SUBJECT:  Linda
mood Bell  Date:  95-10-14 13:31:00 EST
From:  Trudrich

Does anyone have any information on the outcomes  or experiencec with this
program?

SUBJECT:  Re: Linda mood Bell  Date:  95-10-16 20:55:06 EST
From:  Ty Reg

Hi

I will look for this information and get back to you!

Send a note to [e-mail] for information about online resources for
families of kids with DS.

It's good to have you online!

PmW

SUBJECT:  Just a reminder  Date:  95-10-22 20:04:01 EST
From:  C1ndysue1

Hi.....I just want to remind everyone here that there are several more
message boards here on AOL for Down Syndrome.....in the disability forum
(keyword disAbilities)....check general discussions and learning
disabilities.

Also there is an excellent Web page called the Family Empowerment Page that
my hubby created......there are links to all the other web sites, too.  Check
this out......http://www.westvirginia.com/downsyn/

He welcomes all suggestions and ideas.  If you have any just send me Email
and I will forward to him.  2 years ago (when my son Mattie was born)  there
wasn't much available online....now there is so much info that parents and
professionals can find in just minutes:D

I also keep a mailing list here on AOL....if you want to be included, just
send me Email at c1ndysue1.  I have hundreds of names and love to add more!
I don't send out long letters...mostly chat topics for the month and general
information.

Hope to see you at the Tuesday night chat soon:D

Cindy
BHMF Down Syndrome Facilitator

ps you can often find people in the private room Down Syndrome late nights,
too.

SUBJECT:  reading program?  Date:  95-10-29 12:04:12 EST
From:  KKNCREW

I have a 5 year old son with Translocation Downs Syndrome.  He is an
inclusive Kindegarten class at our public school.  He taught himself the
alphabet (upper and lower case letters) by watching Sesame Street, and
playing on the computer.  He is ready to read now, and we've been teaching
him re: the methods explained in the book "TEACHING YOUR CHILD WITH DOWN
SYNDROME TO READ".  It is, however, mostly based on sight words, and we
thought more of a whole language approach would be better, and would also
work along with the regular school program.  We are considerong investing in
the READER RABBIT Program Interactive Journey.  He loves the computer, and it
combines a computer program with books.  Does anyone have any experience with
teaching reading to a 5 year old with DS, or the afforementioned program, or
Translocation Downs . . . . .HELP   We are new to AOL and are searching for
answers!

SUBJECT:  Young Parents  Date:  95-10-29 12:06:32 EST
From:  KKNCREW

I had my son when I was 29.  He was our second child, and it was quite a
shock to us.  He's 5 now, and It's been a real interesting 5 years.  We have
subsequently had 2 other sons, also.  So now we have 4 boys - 8,5,3 1/2, and
4 months

SUBJECT:  Translocation Downs  Date:  95-10-29 12:08:40 EST
From:  KKNCREW

Our Son was born with Translocation Downs Syndrome.  Not many people seem to
know much about this rare form of DS.  Anyone else in a similar situation I
would love to hear from you.  Our son is 5 now, and attending regular
Kindegarten (Full Inclusion)  He seems to be doing quite well.

SUBJECT:
Re:reading program?  Date:  95-10-29 19:54:07 EST
From:  SusanS29

Reader Rabbit is an excellent but inexpensive program. Given his response to
Sesame Street I would certainly give it a try!

SUBJECT:  Re:Young Parents  Date:  95-10-30 02:56:45 EST
From:  Ty Reg

Four boys! Wow!

I had my son with DS when I was 32. Eighty percent of the kids born with Down
Syndrome are born to moms under the age of 35, because so many moms are
giving birth in that age group, it doesn't matter what the odds are. My son
will be 12 on Tuesday. I was quite surprised when he learned to read in first
grade {{{blush}}} but I used all the techniques Pat Oelwein described, plus
Davidson's Reading and Me, and the Kotlinski's Love and Learning tapes.

He had a great aide who gave him credit for knowing phonetic sounds as he
could articulate them, and of course he wanted to learn to read because his
NDA classmates were learning (about a third of the mainstream class, all
boys, were a bit behind him...) and of course we read at home.

Please do write to PMWilson and ask to be put on the mail list for families;
she will give you a list of other parents of included 5 and 6 year olds, and
all sorts of other information.

This is a great area for help from teachers and other professionals - do scan
the other folders here and you will see what I mean. It really rekindles my
faith in professionals to read what is available, folks who care enough to
share *after* work hours are over.

There is a great WWW page for Down Syndrome at
http://www.nas.com/downsyn/

and a DS list serv, too (see below). Take what you read in other places with
a grain of salt, though - double check everything with people you respect and
trust. Some folks get subsidized for having particular opinions, and change
them as funding changes. It's not very helpful, but of course, it's the real
world.

Here's the list serv info - you can check it out at keyword newsgroups with
the search word Down-syn, you add it and then read it at Read my newsgroups.

To subscribe, send message to
[e-mail]
with a Subject of No Subject
and a message of
subscribe down-syn <put your first and last name here>
You may leave the  list at any time by sending a
"SIGNOFF DOWN-SYN" command to
[e-mail].

Good luck! It's great to have you online!


SUBJECT:  Re:  Up Syndrome Chat  Date:  95-11-01 20:59:27 EST
From:  KKNCREW

I found the chat board, but no one was there!?  When is the best time to sign
on for a chat?

SUBJECT:  Re:  Up Syndrome Chat  Date:  95-11-03 02:02:34 EST
From:  Ty Reg

The Up Syndrome Chat on Wednesdays lasts only an hour, but you might find
other families anytime in the private room Down Syndrome, which is where we
go after the public chats that are held in the Health and Medical Chat room
at keyword Better Health.

The Inclusion Chat on Thursday nights is lovely (7pm Eastern) and the next
chat will be the West Coast timed chat, midnight Eastern but 9pm for us left
coasters

Better luck next time!

PmW


SUBJECT:  Re:  Up Syndrome Chat no more  Date:  95-11-04 07:16:38 EST
From:  Ty Reg

The Wednesday night UpSyndrome chat has been discontinued - it will certainly
be missed! Many thanks to the wonderful host who developed the most welcoming
and informative room on AOL for DS.

PmW



SUBJECT:  Re:Young Parents  Date:  95-11-05 18:53:08 EST
From:  TScan86146

i HAD MY SON FOUR MONTHS AGO AT AGE 28.  I thought I was the youngest mother
ever to have a DS child.  Nice to meet you Angie.

SUBJECT:  Re:Young Parents  Date:  95-11-05 19:00:06 EST
From:  TScan86146

WOW!  Thanks for the story about a DS adult.  I am inspired.

SUBJECT:  Re:Young
Parents-TSCAN  Date:  95-11-06 19:05:30 EST
From:  Boulevard

..I, too, was 28 when my son was born eight years ago....And now I'm 29    ;)
-Nancy

SUBJECT:  Hello from Atlanta  Date:  95-11-07 08:46:42 EST
From:  BRITWRAP

Hi,
    My wife and I (Gayle and Brit) would like to become involved and ask as
many questions as there are answers. We also want to share what we know about
our 9 year old son Joshua.  We hopefully will
attend the chat on Tuesday night. Also, Cindy, please put us on your email
list at BRITWRAP.
Thanks in advance  ; )
Brit and Gayle

SUBJECT:  Re: Hello from Atlanta  Date:  95-11-10 03:48:56 EST
From:  Ty Reg

Hello Atlanta

Welcome to AOL. Some online resources you might find helpful are:

Open Window online newsletter, WBwDS
DS Online Support, [e-mail]

Down Syn list serv,   [e-mail]
To subscribe, send message to
[e-mail]
with a Subject of No Subject
and a message of
subscribe down-syn <put your first and last name here>
You may leave the  list at any time by sending a
"SIGNOFF DOWN-SYN" command to
[e-mail].

World Wide Web: Down Syndrome WWW Home Page
http://www.nas.com/downsyn/
From this page there are links to other DS WWW pages,
with information in several languages

National DS Congress email    [e-mail]
The NDSC will have a WWW page in late 1995

Tidewater Down Syndrome Association, Virginia
http://www.infi.net/~jwheaton/dsnet.html

Japanese DS Group in Japanese or English.
The English version is
http://ss.niah.affrc.go.jp/~momotani/dowj1-e.html
The Japanese version is
ttp://ss.niah.affrc.go.jp/~momotani/dowj1.html

THE ARC'S HOME PAGE          http://fohnix.metronet.com/~thearc/welcome.html

OurKids WWW Archive: former postings of the
Our-Kids listserv (diverse diagnoses)
http://wonder.mit.edu/our-kids.html.

Also, the Parents Helping Parents page is
http://www.portal.com/~cbntmkr/php.html

TASH email:  [e-mail]
Executive Director Nancy Weiss   [e-mail]

The National Down Syndrome Society will have a
WWW page in early 1996.

I look forward to hearing more about your adventures raising Joshua. I am
usually at the Monday night West Coast Chat (midnight Eastern) and the
Thursday night Inclusion Chat (10pm Eastern) at keyword Better Health, in the
Health and Medical Chat room.

It's good having you online

PmW

SUBJECT:  Re: David Syndrome  Date:  95-11-12 08:10:32 EST
From:  Ty Reg

I thought you folks might enjoy reading SMigotsky's post from yesterday about
*David* Syndrome.

It's at keyword disAbilities, General Discussions, in the Down Syndrome
folder.

<<<It is sinking in to me FINALLY... that David is more just David (who is
unique and precious) than he is a Down Syndrome child. Does that make sense?
.... Six months ago I would have wanted the best educational plan for a down
syndrome child for David as if what was best for a down syndrome child would
be what was best for David. I labeled David with "Down Syndrome" as if that
was the most important thing. Of course, he has Trisomy 21, but the "stuff"
on that extra chromosome are NOT the same on David as on ANY OTHER DOWN
SYNDROME CHILD ... In a way, David no longer has generic "Down Syndrome", he
has his own unique syndrome--David Syndrome which is one of an infinite
variations of Down Syndrome...>>>

I've snipped a bit of it here to give you an idea of it. David is 30 months
old, with a 10 month old sister. I loved it!

SUBJECT:  Re:Translocation Downs  Date:  95-11-12 21:34:41 EST
From:  Simonedtf

My niece was born 4 months ago with translocation Downs (the doctor said
Trisomy-21 in #14).
He also said that this type of Downs makes up only 3% of Down's cases. I'm
presently trying to read up on this. I would like very much to share any
info. Please E-mail me if you have discovered anything.

SUBJECT:  Dolphin Human
Therapy  Date:  95-11-13 02:10:02 EST
From:  Kidking122

Does anyone have info or experience with Dolphin Human Therapy.  This is in
Florida and is run byDr. David Nathanson.  Would appreciate any input.  My
son Brendan is 12, and very limited in expressive vocabulary.  We are looking
into this therapy, but it is very expensive.

Thanks - Shar

SUBJECT:  Re: Hello from Atlanta  Date:  95-11-14 02:34:25 EST
From:  SKeane100

Hi Ty!  Thanks for the list.  I'm fairly new on AOL and one of the reasons I
joined was to get more information about Down Syndrome.  I have a 6 year old
daughter, Kelly, that has Down Syndrome.  Your list has really helped.
Thanks.
Sandy Keane

SUBJECT:  Family Empowerment Web Page  Date:  95-11-19 01:36:56 EST
From:  C1ndysue1

Just a note about the address for the Family Empowerment Web page my  husband
created several months back......there is alot of info on education on this
page.  You can also link with other DS web pages.  You can see many of the
children who are represented here on AOL by their parents participation.
Enjoy!!!!!

http://www.westvirginia.com/downsyn/

If you want your childs picture displayed, contact KarenL2888.  She will scan
it for you and then Email it.  You will then have to forward to me with
permission to add to the web page.

SUBJECT:  Re: Family Empire Web Page  Date:  95-11-19 17:37:37 EST
From:  Ty Reg

The Arc WWW page at http://fohnix.metronet.com/~thearc/welcome.html
has reliable information for families raising children with Down Syndrome and
professionals seeking support and resources

The original Down Syndrome WWW page at http://www.nas.com/downsyn/
was created from reputable subscribers to the DS list serve with
international resources and translations in several languages and features
photos of individuals with DS doing in all sorts of activities

Another reliable and informative DS page is found at URL:

http://www.infi.net/~jwheaton/dsnet.html

I understand other families are making their own pages with information and
resources on Down Syndrome every day - this technology is great but please be
aware that anyone can promote whatever viewpoint they wish and there is no
way to discover if private interests are paying to have their products
promoted - so check out a variety and enjoy!

SUBJECT:  Re:Dolphin Human Therapy  Date:  95-11-21 14:26:09 EST
From:  Ty Reg

Here are some messages about Dolphin Therapy that were posted on the Down-syn
list serv, some forwarded from the Autism list serv. I hope they help!

[e-mail]

If you have web access you can check out dolphin therapy at

http://www.usyd.edu.au/~okx/dolphins/dolphins.htm


Dolphins Plus
Dr. David Nathanson
10737 S.W. 104th Street
Miami, Florida, USA
Phone [phone]

Dolphin Human Therapy
13605 South Dixie Highway #523
Miami, Florida   33176-7252
Phone [phone] and 305-451-1077
FAX: [phone]

(When I wrote to the 10737 S.W. 104th Street address, I got a letter back
from the
13605 South Dixie Highway #523 address.)

I also have the name Deena Hoaglend on file -
67 Bass Avenue, Key Largo, Florida.
Phone:  [phone]
but I did not receive a response.
(For all I know, they could be the same organization.)

Child-Dolphin Outreach Program
Gulfarium in Ft. Walton Beach FL.
For more information you can contact
Robyn Strickland at 904-244-1555
or write to: Gulfarium;
1010 Miracle Strip Parkway;
Fort Walton Beach, FL, 32548
*Attn. Child Dolphin Outreach Program.

The letter I received says that Dolphin Human Therapy is held Monday through
Friday each week at Dolphins Plus in Key Largo.

Here is the opening paragraph of the literature I received: I'm quoting...

"What Is Dolphin Therapy, and Why Is It Effective?

        The theory and research behind dolphin therapy is that children or
adults will increase attention as a result of a desire to interact with
dolphins.  A behavior modification procedure -- i.e. interaction with the
dolphins -- is used to reward the person for correct cognitive, physical, or
affective response.

Thus, the general purpose of the program is motivational, although specific
objectives for each child may include behaviors related to speech, language,
gross or fine motor development, rote or conceptual thinking, etc. Ideally,
the program "jump starts" the child and complements and reinforces therapies
or other procedures used in more traditional helping approaches.

Realistically, children cannot interact with dolphins on a schedule similar
to the schedules of other therapies. Therefore, the objective of dolphin
therapy is to motivate and increase confidence, so that the child/adult will
benefit even more from the help of other professionals."

There was also, apparently, a '1988 study presented in September, 1988 at the
XXIV International Congress of Psychology in Sydney, Australia and published
in 1989 in the book Clinical and Abnormal Psychology (Elsevier Science
Publishers).

One paragraph in the lit sent to me also says:

"Now, the five day per week program at Dolphins Plus serves a wide range of
disabilities, including mental retardation, head and spinal cord injories,
sensory handicaps such as blindness and deafness, neuromulcular and
musculoskeletal disorders, and many others.

Generally, the only children who do not do well in the program are those
afraid of water or animals, and those children diagnosed as functioning in
the severe range of autism."

I also was sent some info on Dolphin Therapy from the Geneva Centre in
Toronto, but alas, I cannot find it.  It is somewhere in the 'Bermuda
Triangle' of my file cabinet.

<I am not the original message writer of any of these resource postings, but
I *do* have a Bermuda Triangle situation with my files, too ;-).  Hope this
helps

[e-mail]

SUBJECT:  Down Syndrome Chat???  Date:  95-11-21 18:53:21 EST
From:  SusanS29

If any of you are interested in having a regularly- scheduled chat on the
topic of Down Syndrome, please e-mail me (do use e-mail and not post here, as
it will simplify my record keeping greatly).

If we have significant interest, there is the possibility that TIN can
organize one.

Remember -- email, please! :)

SusanS29, Host--Special Education Forum

SUBJECT:  Mental Retardation  Date:  95-11-22 15:57:35 EST
From:  SoulnLov

I am in need of a journal article about mental retardation and counseling
students.  Please E-mail me if you have some information.

Thank-you
Soulnlov

SUBJECT:  Re:Mental Retardation  Date:  95-11-24 00:43:32 EST
From:  Ty Reg

You might find it useful to check out The National Arc's  WWW page at URL

http://fohnix.metronet.com/~thearc/welcome.html

or send email to [e-mail]

Also, TASH might be a good resource for you. Their email address is
[e-mail] (their yearly convention is next week in San Francisco)

Good luck!

[e-mail]

SUBJECT:  Re:Dolphin Human Therapy  Date:  95-11-29 00:15:23 EST
From:  Kidking122

If you know of anyone that has had exposure to the Dolphin Human Therapy in
Florida please contact [e-mail].  We have been told that it has a
high success rate in increasing DS children's communication.  It is very
expensive, and we want other's viewpoint before travelling a long way, and
spending money that can be spent better in other ways to help our child.  Let
us know what you know!  Appreciate it!

Rick

SUBJECT:  Re:Dolphin Human Therapy  Date:  95-12-03 16:21:18 EST
From:  Ty Reg

Here are some messages about Dolphin Therapy that were posted on the Down-syn
list serv
(Bill McGarry maintains it, the message address is [e-mail]),
some forwarded from
the Autism list serv. I hope they help!

[e-mail]

If you have web access you can check out dolphin therapy at

http://www.usyd.edu.au/~okx/dolphins/dolphins.htm


Dolphins Plus
Dr. David Nathanson
10737 S.W. 104th Street
Miami, Florida, USA
Phone [phone]

Dolphin Human Therapy
13605 South Dixie Highway #523
Miami, Florida   33176-7252
Phone [phone] and 305-451-1077
FAX: [phone]

(When I wrote to the 10737 S.W. 104th Street address, I got a letter back
from the
13605 South Dixie Highway #523 address.)

I also have the name Deena Hoaglend on file -
67 Bass Avenue, Key Largo, Florida.
Phone:  [phone]
but I did not receive a response. (For all I know, they could be the same
organization.)

Child-Dolphin Outreach Program
Gulfarium in Ft. Walton Beach FL.
For more information you can contact
Robyn Strickland at 904-244-1555
or write to: Gulfarium;
1010 Miracle Strip Parkway;
Fort Walton Beach, FL, 32548
*Attn. Child Dolphin Outreach Program.

The letter I received says that Dolphin Human Therapy is held Monday through
Friday each week at Dolphins Plus in Key Largo.

Here is the opening paragraph of the literature I received: I'm quoting...

"What Is Dolphin Therapy, and Why Is It Effective?

        The theory and research behind dolphin therapy is that children or
adults will increase attention as a result of a desire to interact with
dolphins.  A behavior modification procedure -- i.e. interaction with the
dolphins -- is used to reward the person for
correct cognitive, physical, or affective response.

Thus, the general purpose of the program is motivational, although specific
objectives for each child may include behaviors related to speech, language,
gross or fine motor development, rote or conceptual thinking, etc. Ideally,
the program "jump starts" the child and complements and reinforces therapies
or other procedures used in more traditional helping approaches.

Realistically, children cannot interact with dolphins on a schedule similar
to the schedules of other therapies. Therefore, the objective of dolphin
therapy is to motivate and increase confidence, so that the child/adult will
benefit even more from the help of other professionals."

There was also, apparently, a '1988 study presented in September, 1988 at the
XXIV International Congress of Psychology in Sydney, Australia and published
in 1989 in the book Clinical and Abnormal Psychology (Elsevier Science
Publishers).

One paragraph in the lit sent to me also says:

"Now, the five day per week program at Dolphins Plus serves a wide range of
disabilities, including mental retardation, head and spinal cord injories,
sensory handicaps such as blindness and deafness, neuromulcular and
musculoskeletal disorders, and many others.

Generally, the only children who do not do well in the program are those
afraid of water or animals, and those children diagnosed as functioning in
the severe range of autism."

No prices were quoted in this literature but I imagine it's TRES expensive!

I also was sent some info on Dolphin Therapy from the Geneva Centre in
Toronto, but alas, I cannot find it.  It is somewhere in the 'Bermuda
Triangle' of my file cabinet.

(I did not write any of these messages myself but do have in common a Bermuda
Triangle in the file cabinet... PmW/Ty Reg)

Down Syn list serv,   [e-mail]
To subscribe, send message to
[e-mail]
with a Subject of No Subject
and a message of
subscribe down-syn <your first and last name here>

SUBJECT:  Soap Opera prenatal
diagnosis  Date:  95-12-06 23:18:28 EST
From:  Ty Reg

Hey, I heard today that Holly's unborn baby on The Guiding Light is diagnosed
with DS! Maybe we will have a little girl with DownSyndrome growing up in a
soap family ;-).

Here's hoping!

SUBJECT:  Suggestions Welcome!!  Date:  95-12-27 20:19:34 EST
From:  Swiftsure

Looking for advice to help Rory "behave" a little better during his Physical
Therapy sessions!

Our 18 month old son, Rory, has become quite the terror during his PT (and
less often OT and ST) sessions.  He now begins his crying as soon as his PT
walks through the door and gets quite worked up (he's a very smart boy and
knows exactly what is up).  When she is finished (or can't stand the crying
anymore) she says "OK Rory we are all done", he makes the sign for all done,
composes himself and gives a big smile.  It seems he really likes her - he
just hates the hard work.   How to we help him behave a little better?  I
wonder if he is too young for bribes - and anyway, I am worried about opening
that can of worms!  He loves praise but that doesn't work with PT (does with
OT and ST).  Any suggestions are welcome.

Thanks,
Gillian

P.S.  Besides this little issue, Rory is doing great!  He is speaking, knows
5 signs, crawls (in his own way) and continues to win the heart of everyone
he meets!!  He loved Christmas.  He played for a little while with each toy
or book he opened then would turn back to the tree and make the sign for
more!  :-)



SUBJECT:  Re:Suggestions Welcome!!  Date:  95-12-29 06:45:13 EST
From:  VProux

Greetings,
I am the parent of a ten year old child with DS who in his early years
underwent similar training. Most of the time he was fine about it but as you
have discovered has a mind of his own and would act up before and during his
therapy becoming quite stubborn.
I would talk to him at time other than when we were at therapy or going to
therapy about the therapy. I would talk to him about how important it was for
him to learn to speak and communicate and that talking correctly (as
possible) was the most important tool he would ever develope. I would talk to
him just as I am talking to you, I do not know how much opf our conversation
he would understand but the next time we went in to therapy I reminded him of
our conversation and he seemed to do better.
Also I have no problem with bribes. Just another tool that if used carefully
and with love can be very effective.

Good Luck, Victor

SUBJECT:  Re:Soap Opera DS character  Date:  95-12-29 06:47:09 EST
From:  VProux

We are ardent All My Children fans, but will begin to watch Guiding Light for
possible DS involvement.

Thanks for the tip.

SUBJECT:  Re:Suggestions Welcome!!  Date:  95-12-30 10:43:17 EST
From:  Swiftsure

Thanks for your suggestion...I will work on more explaining - I think that is
very important.

Rory (18 mos)had a successful PT session Friday! No crying what so-ever.  We
tried something new - we sang songs all the way through the session (45
minutes) and kept Rory focused on something other than the hard physical
work.  We also gave Rory a little reward at the end of the session and lots
of praise during!  He loved it - and happily we all lost our voices instead
of Rory!

Thank you for the advice! We really appreciate our on-line friends!

Best in 1996!
Gillian



SUBJECT:  Parents of 2 children w/ DS  Date:  96-01-03 21:50:51 EST
From:  THammeke

Greetings from McLean, Va. We are the biological parents of two children with
DS. we would like to chat with any other similar parents. Thanks.

SUBJECT:
Re:Parents of 2 children w/   Date:  96-01-04 06:47:41 EST
From:  KarenL2888

Greetings from McLean, Va. We are the biological parents of two children with
DS. we would like to chat with any other similar parents.
Thanks.>>>>>>>>>>>>>>>>>>>>
There were other parents online with two kids recently.  I cannot recall at
the moment who.  Have you posted this to the NEWSGROUPS area in the down-syn
list? There is a lot wider range of people there since its accessed by people
around the world and using thousands of online services.  Just go to keyword
Newsgroups, select search, type down-syn and click add.  Then you can post,
read, monitor or subscribe.  Your choice!
Are the children Trisomy 21 or are they Mosaic or Translocation?   How old
are they?  Id love to hear about them!
Karen, mom to 0ne with DS, 15, and two with NDA 17, 12
NDA=Not diagnosed anything....the listserv term for "what is normal
anyway?"

SUBJECT:  Re:Soap Opera DS character  Date:  96-01-06 21:14:17 EST
From:  Swiftsure

Has Guiding Light announced yet if Holly's baby will live?  I spoke to their
offices prior to Christmas and they said they had made the decision but had
not yet aired the episode - so wouldn't tell....

SUBJECT:  Re:Suggestions
Welcome!!  Date:  96-01-06 21:15:23 EST
From:  Swiftsure

Rory had a successful PT session for the second week in a row!  More singing
and playing, lots of praise.  Thank you all again for your input!

Gillian

SUBJECT:  Of Interest for Down Syndrome?  Date:  96-01-08 18:13:36 EST
From:  Ty Reg

It seems like we could make up our own programs with any voice recording
software already available - like Spell A Word. We could just accentuate the
hard to process sound - this is something a speech therapist suggested I do
to help with articulation at home.

Re: Forwarded message about the Language Learning Software written up in the
paper and seen on TV news (from the OurKids mail list):

<<<.....The URL for more info on the language learning software:
http://www.ld.ucsf.edu/

....I just called the 1-800-890-0445 number for  the language learning folks,
and got a very nice recording inviting one to get on their mailing list,
noting they are being deluged with calls, and that they are a research center
and not ready to do individual evals or to release their software...>>>

Friday, January 5 in the Baltimore Sun.

Computers Play Role in Teaching Language

Using computer games, CD-ROM books and audiotapes, a team of language
researchers has developed a therapy that they say has the potential to
correct language-learning disabilities that affect as many as 7million
children in the US.

Such children, who have trouble understanding and using the spoken word,
typically go on to develop the reading problems characteristic of an
impairment of reading ability called dyslexia.

Current therapies involve intensive, expensive, one-on-one interventions and
may continue for years.

The new approach, which uses computers to train the brain to recognize
hard-to-hear sounds, has been shown to accomplish in a month the same goals
that conventional therapy achieves in two or more years.

The techniques, developed at Rutgers University in New Brunswick, NJ, and the
University of California in San Francisco, are described in two papers in
today's issue of the journal 'Science'. The Charles A. Dana Foundation funded
the studies.

The new therapy is based on more than two decades of research into the causes
of language=learning disabilities by neuropsychologist Paula Tallal of
Rutgers. She reported last year that the major problem in perhpas 85% of
these children is that their brains simply do not operate fast enough to
distinguish many different sounds.

When an individual hears a sound, "brain cells require a certain amount of
time to respond, recover and be ready to respond again," Ms. Tallal said.

In normal individuals, this response occurs very quickly, on the order of 30
to 40 milliseconds. For language-learning impaired children, the process
takes 100 milliseconds or longer.

But many speech sounds, particularly the so-called stop-consonant syllables
such as ba, da, ga, pa, ta and ka, have a very short transitional period in
which the initial spoken consonant sound changes to the vowel.

The initial "b" in ba, for example, lasts for only 40 milliseconds before
switching to the "ah" sound.

Because the brains of the language-learning impaired children do not respond
rapidly enough, they have great difficulty distinguishing these sounds,
Ms. Tallal has found. This language-learning disorder translates into
dyslexia as children enter school and learn to associate speech sounds with
letters.

Based on this insight, neuroscientist Michael Merzneich and his colleagues at
UCSF used computers to alter speech, accenting the stop-consonant syllables
so they stand out from the rest of the speech and lengthening them so that
the children could recognize them.

Using the altered speech, researchers developed video games that reward the
user when he or she recognizes the stop-consonant sounds and respond
appropriately. As the user's proficiency increases, the syllables are
progressively shortened until they are recognized in real time.
AOL looking for a response

SUBJECT:  Re:Suggestions Welcome!!  Date:  96-01-08 18:13:56 EST
From:  Ty Reg

Way to go Rory!

SUBJECT:  Re:Young Parents  Date:  96-01-14 17:01:52 EST
From:  TThomas482

Im only 21yr.old i had my child with dow's syndrome when i was only 16. I
thought for sure my
husband and i were the only one's. I'm so glad were not. I have to say we
were really scared
when the doctor came in my room and told me, i did'nt know what down's
syndrome was.
I would love to talk more well write more to you about it that would be
really great.
email me if you would like.
[e-mail].

SUBJECT:  Re: Young Parents  Date:  96-01-15 04:21:25 EST
From:  Ty Reg

Welcome! It's great to have you online. I will send some information about
online resources for families of kids with DS and some great places on AOL
(including this one).

pmwilson, [e-mail]

SUBJECT:  Gentle Teaching  Date:  96-01-15 04:25:45 EST
From:  Ty Reg

Forwarded from the Down Syndrome list serv <[e-mail]> is the
email address
  Date:    Sun, 14 Jan 1996
From:     Pouwel van de Siepkamp" <[e-mail]>
Subject: Home-Page Gentle Teaching

For everyone who is interested in Gentle Teaching we now have our Home Page
to visit. Please do so and give us your comments to improve the home-page and
the information provided on it. It is at URL
http://www.knoware.nl/users/gentle/

Pouwel van de Siepkamp
John McGee

SUBJECT:  Sibling Support Project  Date:  96-01-15 04:27:36 EST
From:  Ty Reg

The Sibling Support Project's Web site address is:
http://www.chmc.org/departmt/sibsupp

SUBJECT:  Re:Guiding Light  Date:  96-01-17 06:45:15 EST
From:  KarenL2888

Yes! They are keeping the baby!  I understand the writers are all excited
about it (which may mean when they get bored, the baby will meet a typical
soap opera end, but theres always hope).  Karen

SUBJECT:  Teacher  Date:  96-01-17 19:00:29 EST
From:  Active Mom

Hi, I'm a teacher  with  a student who has DS.
I'm looking for information about DS.  My student is currently having some
behavior problems, including BM's in his pants, and very bad language towards
teachers.  I'd like some book titles, and andy organizations, that I can
refer the parents to, I know they are getting frustrated.  Actually, his
behaviors, except the BM's, are not new, he has been non-compliant, for as
long as he has been in school.  I've had him as a student for 2.5 years, and
will have him another 2.5 years, and I need to learn something new so that I
can help him and keep my sanity.  If you can help please e-mail me, I have a
hard time getting to this room.  Thanks for any help.  Jacquie

SUBJECT:
Re:Mosaic Down's  Date:  96-01-17 21:37:35 EST
From:  MJenk75505

I would like to chat with someone who has a daughter with Mosaic Down
Syndrome.  My daughter is 6, we found out she had Mosaic when she was 4.  She
also is ADD and taking Ritalin.  It has done wonders for her.  This is our
first year with inclusion.


SUBJECT:  Re: Teacher  Date:  96-01-18 23:43:58 EST
From:  Ty Reg

The behaviors you describe are not attributable to the Down Syndrome, unless
the difficulties with the BMs are due to an obstruction or lack of nerve
endings that occur occasionally in kids with DS. This usually shows up very
early, so I would guess this young man's problem is due to another medical
complication.

I am assuming that this young man is in a segregated classroom and will be
kept there in the foreseeable future? Often times peer intervention is
successful in changing segregated kids' behaviors, as is giving him an avenue
of expression when his articulation or communication fails him (or as the
behavioral consultants say, *all behavior is communication.*)

I would suggest you or the parents contact TASH at [e-mail], or
1-800-463-5685

and the special education WWW site at
http://www.webcom.com/pleasant/sarah/teach/sped.html

The Inclusion WWW page is at http://www.inclusion.com

Your message reads like you should get some respite so that your frustration
with this student does not carry over into his school experience.

Good luck



SUBJECT:  Re: Teacher  Date:  96-01-18 23:46:00 EST
From:  Ty Reg

He may have had a bad experience in the public school restroom that led him
to avoid it at all costs (a strategy nda students often employ, with greater
control of bladder and bowels, however).

SUBJECT:  Re:Guiding Light  Date:  96-01-19 20:39:35 EST
From:  Swiftsure

I heard the author became interested because of the Special Olymics - maybe
the charater will last to compete for the gold!!!

SUBJECT:  software  Date:  96-01-20 10:39:22 EST
From:  JBoyle1775

I'm looking for suggestions for software programs which would be appropriate
for my ten year son with ds who has some limited reading abilities. (Anything
with scary monsters would surely capture his attention.) Thank you.

SUBJECT:  Re:
Teacher  Date:  96-01-22 07:51:43 EST
From:  Ty Reg

Forwarded message from another parent:

Jacquie:

I could probably write quite a return note to you about the various issues
you described with your student but, for the sake of time, I will address
one: the issue of bowel problems.

We dealt with just this issue with our daughter: bowel movements at school
and not infrequently in the bathtub at home. After analyzing the situation
and realizing there seemed to be a correlation between physical exertion
(i.e., monkey bars at school or other playground activities, swimming pool,
etc.), I approached our pediatrician about this problem. Come to find out it
was physiological. Our daughter had had many years of constipation from being
on diuretics for her heart and the pediatrician surmised she had distended
her colon as a result. Lacking good muscle control, she was not aware when
the bowel was as far down as it was and would then physically exert herself
OR relax in the bathtub and out it came.

After using stool softeners (Equalactin is the one that comes to mind) and
foods with a laxative effect, we were able to relieve the stress on the
muscles in her lower colon, allowing her colon to return to normal size, and
she was able to control her bowels. We have not had a problem since, although
it existed for many months prior to our intervention.

Low and behold it was not behavioral! Many times there is a physiological
explanation for A LOT of "problems". I would thoroughly explore this avenue
before assuming it to be a "noncompliant behavior".

Additionally, I have found over the years that "noncompliance" is "nearly
never" what it appears to be. This is where I could write a book. Please, for
the sake of this student, seek out someone who can do a thorough functional
(behavioral) analysis with a clear understanding of the issues surrounding a
child with a disability.

There are various issues which could be "rearing their ugly head" in a shape
of "noncompliance", such as boredom, environmental issues, health
considerations (ears, eyes, etc.), language/communication, and, lastly but
most importantly, segregation. Please look at the various issues that could
be *root* of (what is superceding) the problem.

Best of luck!


SUBJECT:  Re: software  Date:  96-01-22 08:02:11 EST
From:  Ty Reg

Hi

If you have CD Rom, the Broderbund Living Books are very popular and well put
together for readers at all levels (and of course, the computer will read it
all to you). Other programs that my son enjoys are Spelunx, Kid Pix and Kid
Pix Companion,  The PlayRoom and The TreeHouse.

Good luck!

Pam W
SE of Seattle

SUBJECT:  Resources  Date:  96-01-28 03:42:33 EST
From:  Ty Reg

Here are a couple of new resources that I read about on the Down Syndrome
list serv ([e-mail]):

It Takes Two to Talk:  A Parent's Guide to Helping Children Communicate.  A.
Manolson.  The Hanen Program.  1992.  The Hanen Centre, 252 Bloor Street
West, Room 390, Toronto, Ontario, Canada M5S 1V5.  ISBN 0-921145-02-0.  Ph
416-921-1073.

Teaching Strategies for Children with Down Syndrome:  A Resouce Guide (K-6).
B. Tien and C. Hall, Editors.  Jointly prepared by the PREP Program and the
Ups & Downs Assoc. of Calgary, Alberta. Ups & Downs, Calgary Down Syndrome
Association,
1001 - 17 Street NW, Calgary, Alberta, Canada  T2N 2E5. Ph 403-289-4394.
Cost is $15 Canadian.
------------

SUBJECT:  Special Education - Preschoo  Date:  96-02-05 22:32:08 EST
From:  EGreene510

The community I live in is starting their own special education preschool
program.  I would like some ideas of what other parents think makes a good
preschool program.  Any input at all would be of help.  Thanks


SUBJECT:  Re:Special Education - Prescho  Date:  96-02-06 01:05:35 EST
From:  Ty Reg

I'd be very interested to read suggestions here, too. Some references that
might be helpful would be

BOOK: Communication Skills in Children
 with Down Syndrome: A Guide for Parents;
Libby Kumin;  Phone or Fax: [phone]
ISBN Number:  0-933149-53-0 .
Woodbine House, 1-800-843-7323
6510 Bells Mill Road
Bethesda, MD  20817
[phone]

BOOK: Teaching Reading to Children with Down Syndrome,
A Guide for Parents and Teachers
Patricia Logan Oelwein; ISBN Number 0-933149-55-7
Woodbine House, 1-800-843-7323

Stimulating speech and encouraging communication
via the use of computers:
Laura Meyers, PhD, 8505 Gulana,
#4103, Playa Del Ray, CA 90293

Love and Learning
Joe and Sue Kotlinski,
P.O. Box 4088, Dearborn, MI 48126-4088
Parents of a child with Down Syndrome have developed a teaching technique
which enabled their daughter to read over 1000 words by age 5.  This method
utilizes videos, audio tapes, and books to help develop language, reading,
and comprehension skills.


The Language of Toys:  Teaching Communication Skills to Special-Needs
Children.  A Guide for Parents and Teachers.  Sue Schwartz and Joen E. Heller
Miller. 1988.  Woodbine House, 6510 Bells Mill Road, Bethesda, Maryland
20817.
Toll Free USA 1-800-843-7323.

It Takes Two to Talk:  A Parent's Guide to Helping Children Communicate.  A.
Manolson.  The Hanen Program.  1992.  The Hanen Centre, 252 Bloor Street
West, Room 390, Toronto, Ontario, Canada M5S 1V5.  ISBN 0-921145-02-0.  Ph
416-921-1073.

Teaching Strategies for Children with Down Syndrome:  A Resource Guide (K-6).
B. Tien and C. Hall, Editors.  Jointly prepared by the PREP Program and the
Ups & Downs Assoc. of Calgary, Alberta. Ups & Downs, Calgary Down Syndrome
Association, 1001 - 17 Street NW, Calgary, Alberta, Canada  T2N 2E5.
Ph 403-289-4394.   Cost is $15 Canadian.
----------------------------------------------

Special Education WWW site
http://www.webcom.com/pleasant/sarah/teach/sped.html

The Inclusion Home Page
http://www.inclusion.com

Institute on Community Integration
http://www.coled.umn.edu/iciwww/
(linked from the DS WWW page)

Axis Consultation & Training
http://www.almanac.bc.ca/~axis/
Norman Kunc & Emma Van der Klift
[e-mail]


This is just being discussed on the Down syndrome list serv (available as a
newsgroup at keyword newsgroups with the searchword down-syn)

Down-Syn list serv
To subscribe, send message to
[e-mail]
with a Subject of No Subject
and a message of
subscribe down-syn <put your first and last name here> You may leave the
list at any time by sending a
"SIGNOFF DOWN-SYN" command to
[e-mail]
Once subscribed you may change your method of reading the list by sending a
message <set down-syn digest> to the list serv address, and all the posts
will arrive in one piece of email once a day. To unsubscribe from the digest,
the message would read <signoff down-syn digest>

===========

SUBJECT:  Re:Special Education - Prescho  Date:  96-02-06 12:34:04 EST
From:  Ty Reg

You might  find these homeschool books for Birth to Five helpful:

Slow and Steady Get  Me Ready by June Oberlander,
Available from Bio-Alpha (703-323-6142) $19.95
A complete readiness curriculum  providing five years of age-appropriate
developmental activities (age 0 week 1 and up)

This volume recommended by Head Start, US Dept of Education, and
homeschooling groups. The "slow and steady" theme is emphasized throughout,
and when materials are needed they are inexpensive or already in your home.

Oberlander says, <The best thing to spend on your children is time.>

Early Education at Home, by M. Jean Soyke,
A Curriculum Guide for Parents of Preschoolers
and Kindergarteners  $19.95

Detailed weekly lesson plans, preschool basics, plus
language activities, science, safety, and manners,
wish list of games and toys,  check lists for gross motor, fine motor,
social, body awareness, language, cognitive, and math skills.


SUBJECT:  Re:DS, ADD and Ritalin, etc   Date:  96-02-09 16:07:07 EST
From:  Mr DATJR

I have a 9 year old son with Down Syndrome and is also on Ritalin for Add. my
concerns are, when can you tell when this medication is no longer needed? Is
it matutity, information from the teacher, or how well he's doing at home?
Please help and respond.

SUBJECT:  Re:DS, ADD and Ritalin, etc   Date:  96-02-09 16:08:50 EST
From:  Mr DATJR

I have a son with Done Snydrome. Is there anyone out there that I can chat
with?

SUBJECT:  Re:DS, ADD and Ritalin, etc   Date:  96-02-10 12:20:20 EST
From:  Ratatat

<<I have a 9 year old son with Down Syndrome and is also on Ritalin for Add.
my concerns are, when can you tell when this medication is no longer needed?
Is it matutity, information from the teacher, or how well he's doing at home?
Please help and respond.I have a 9 year old son with Down Syndrome and is
also on Ritalin for Add. my concerns are, when can you tell when this
medication is no longer needed? Is it matutity, information from the teacher,
or how well he's doing at home? Please help and respond.>>

I can only respond on the ADD/ritalin/maturity part of this questions.  I
know little comprehensively about DS.  It is now well accepted that ADD is
something that lasts the lifespan - birth to death.  Though many individuals
"outgrow" the observable symptoms (hyperactivity) when they pass through
puberty, for many those changes are only on the "outside."  Problems with
variable attention and impulse control still exist.  If a child was
hyperactive, and the hyperactive component diminishes, many people
(professionals included) *assume* that the ADD is gone too.

Some individuals who have had the proper support and learned and habituated
routine, organization and coping skills can develop the ability to function
quite well as adults without Ritalin.  About 50% (or so is thought) of the
people who are diagnosed with ADD as children, still need medication and
accommodations as adults.  In addition, there are many adults being diagnosed
for the first time, because their ADD never had the hyperactivity component,
and their disorder was completely missed when children.  They were just
though to be lazy, unmotivated or stupid.

SUBJECT:  Re: DS, ADD and Ritalin, etc   Date:  96-02-12 03:45:29 EST
From:  Ty Reg

Hello,

Many more families read and post messages to the DS folders at keyword
disAbilities, in the General Discussion or Learning Disabilities sections.

There are several DS related chats and a mailing list of about 400 families
online who are raising kids with Down Syndrome, some of whom have additional
diagnoses and whose children are finding medication helpful.

There is a Down Syndrome list serv that can be read as a newsgroup (keyword
newsgroups, use the search word down-syn, add it and go back to the Newsgroup
screen and click on the selections  Read My Newsgroups; it will be Downs
Syndrome discussion group) or subscribed to in digest or individual message
form.

Down-Syn list serv
To subscribe, send message to
[e-mail]
with a Subject of No Subject
and a message of
subscribe down-syn <put your first and last name here> You may leave the
list at any time by sending a
"SIGNOFF DOWN-SYN" command to [e-mail] Once subscribed you may
change your method of reading the list by sending a message <set down-syn
digest> to the list serv address, and all the posts will arrive in one piece
of email once a day. To unsubscribe from the digest, the message would read
<signoff down-syn digest>

Good luck!



SUBJECT:  Re:DS, ADD and Ritalin, etc   Date:  96-02-12 03:47:57 EST
From:  Ty Reg

I just wanted to add that families whose children do use Ritalin also provide
support for their children to make behavioral changes and give whatever
structure is needed so their sons and daughters can be accommodated in that
way as well. Ritalin or other medications are just part of effective
treatment.

Wishing you all the best -

SUBJECT:  Spanish Info on Down Syndrom  Date:  96-02-13 23:35:03 EST
From:  Tong0lf

I am looking for information on Down Syndrome that is written in Spanish.  I
work with an Early Intervention Program and many of the parents are
requesting Spanish material.  Are there any resources out there?  Kathy

SUBJECT:
Re:Spanish Info on Down Syndro  Date:  96-02-15 05:24:50 EST
From:  Ty Reg

I will send you two articles that online families have translated into
Spanish for the DS WWW Page; there are also several families online who speak
Spanish and have offered to be resources. The National Arc WWW page also has
information in Spanish. I believe either the NDSC or the NDSS have brochures
in Spanish: The National Down Syndrome Congress: 1-800-232-6372; The National
Down Syndrome Society 1-800-221-4602

Before my family "came online" I relied on a DS support group in Los Angeles
(affiliated with the National Down Syndrome Congress) for my written
material.

These two national resources have Spanish speaking representatives: NICHCY is
1-800-695-0285 and also has great resources; as does the National Information
Clearinghouse for Infants with Disabilities and Life-Threatening Conditions
at 1-800-922-9234, ext 201.

I grew up in Florida and California and have always enjoyed the many
variations of Spanish I heard in my friends' homes. That is why I am
interested in having resources translated, although there is no doubt a
difference between something written originally in Spanish than what I could
provide translated.

World Wide Web: Down Syndrome WWW  Page
http://www.nas.com/downsyn/
This page has Spanish translations of several articles

THE ARC'S HOME PAGE
http://TheArc.org/welcome.html

These are my Spanish language resources listed in BIENVENIDOS BEBES CON
SINDROME DE DOWN (I will send it in English, also):

Por libros en espanol,
Paul H Brookes Publishing Co
PO Box 10624
Baltimore MD 21285-9945
1-800-638-3775, FAX [phone]
1. Sindrome de Down: Hacia un futuro mejoy, de
Siegfried M Pueschel, MD Phd MPH, ISBN 84-345-2429-5; $25
2. Sindrome de Down, Problematica Biomedica, dirigida por Siegfried M
Pueschel, MD Phd MPH, y Jeanette K Pueschel, ISBN 84-458-0202-X; $55
3. Sindrome de Down y Educacion, editado por
Jesus Florez, MD, PhD, y Maria Victoria Troncoso, M.Ed., ISBN 84-458-0118-X;
$26

Thanks for seeking this information!

[e-mail]

SUBJECT:  Spanish Info on Down Syn  Date:  96-02-18 23:06:12 EST
From:  Tong0lf

Just wanted to say thank you to Ty Reg for all the great information and
resources you recently sent me.  I have already found it very helpful.  I'm
just learning to use online services, so although the response might seem a
bit "clumsy" it is very sincere.  Thank you!
:)

SUBJECT:  Re: Spanish Info on Down Syn  Date:  96-02-21 00:49:18 EST
From:  Ty Reg

You are quite welcome.  It is wonderful that you are searching out this
information.

Translations of more articles are being done in Japanese, also.

SUBJECT:
functionally retarded  Date:  96-03-04 21:17:43 EST
From:  KENNYDEB

after many years of sem kids am teaching functionally retarded class: middle
school; looking for ideas and someone to share frustrations

SUBJECT:
Re:functionally retarded  Date:  96-03-04 21:28:22 EST
From:  Ty Reg

KennyDeb:

Try the Inclusion chat! So many sped teachers are feeling renewed and
inspired by building inclusive programs for kids from segregated classrooms,
it could be just what you are looking for!

Good luck!

SUBJECT:  Mosiac Down's info  Date:  96-03-11 23:54:38 EST
From:  Steph PT 1

We have a daughter who is 16 months old now.  She was born at 27 weeks
gestation, and one of the first things that I noticed were her semian(sp. ??)
creases in the palms.  No other signs at that time.  With age she has
developed the eye folds (more noticable every month),  small ears, short
stature, a space between her great toe and first toe, flat nose bridge, and a
few more signs of down's.  At 13 months corrected age her scores are:
Social/emotional = 30 months... Fine motor  = 11 months.... Self Help  = 24
months.... Gross motor  = 16 months .... and cognation = 24 months.  So she
shows no signs of delays at this time.  Could she be mosaic?? Should we have
her tested?  It makes me no difference about her diagnosis, but can she pass
this trait to her childern?  Any info would be greatly appreciated.
Stephanie

SUBJECT:  Re:bilingual-Down syndrome  Date:  96-03-12 23:09:56 EST
From:  Kaseyy

I work with a young student who comes from a home where two languages are
spoken. He is becoming confused, and not making the strides he could make in
English. Is there any information out there on how to best help a child with
Down Syndrome from a bilingual home?
E-mail to [e-mail]

SUBJECT:  Down Syndrome/PE  Date:  96-03-13 09:21:17 EST
From:  SandiH

Anyone have any information about PE special need for down syndrome kids? I
have a full inclusion student next year and I am looking for
information.

SUBJECT:  Inclusion  Date:  96-03-13 21:55:31 EST
From:  Reggie3538

I am  studying to be a special education teacher and need some help.  I am
doing a report on how regular ed kids feel about having special ed,
particularly Down Syndrome and  Moderately Mentally retarded children in
class with them. I have received answers to a survey that I posted and most
students aged 12-18 said they really didn't care one way or another.  If
anyone can comment on this topic I would appreciate hearing from you.
Thanks, Reggie 3538

SUBJECT:  student to student chat   Date:  96-03-14 13:11:10 EST
From:  MORGANSCH

To anyone -

There is a Down's Syndrome student at my school who would benefit from being
able to correspond with other students or chatting online with them.  Is
there anyway to make this connection?  We are in Connecticut, the student is
part of the special olympics program.  Anyone who has similar interests or
who is from another part of the country would be great!  Please let us know.

E. Carmelich
Library Media Specialist
Clinton, CT     E-Mail address:  [e-mail]

SUBJECT:  Re:Inclusion  Date:  96-03-14 22:14:01 EST
From:  MissBart

We include our moderate population at the middle school level.  If you would
like to send your survey copies, I would be happy to oversee getting them
filled in.  Please email if interested..

SUBJECT:  RE: Families   Date:  96-03-16 08:28:26 EST
From:  Swiftsure

Hello All !

Kind of late notice ... but.... I will be interviewed by a local high school
student that is doing a paper on Down syndrome and how it effects families.
She is the cousin to an adorable little guy in my town (6 mos with DS) so she
is very positive about DS.

In any case if anyone wants to pass along their thoughts on how you and your
families have been rewarded and/or challenged by having a child with DS - I
will pass them along to her for her report.

My little guy is now 21 mos and doing fantastic - so far the impact he has
had on us is phenomenal.  I never believed we could have such an exceptional
child - he makes our family very special and brings out the best in everyone
he touches!

Please EMAIL me if you'd like to share some thoughts!  THANKS

Best,
Gillian
(Mother to Rory - 21 mos)
[e-mail]




SUBJECT:  Re: Mosiac Down's info  Date:  96-03-20 03:10:53 EST
From:  Ty Reg

Dear Stephanie,

There are families on the Down Syndrome list serv who are raising children
with the Mosaic form of DS. They are told that many people with Mosaic DS are
never diagnosed because they do not show the physical signs or come up
against the developmental challenges that our kids with the garden variety
meet.

The address of the list serv is [e-mail]; you might want to
include your internet email address, [e-mail] (no spaces, sign on
name followed by @aol.com).

She sounds like a real cutie. It's a hard decision to make, I'm sure. I will
forward your message to my personal DS mail list in hopes that some folks
will respond about their own experiences.

Wishing you all the best,

Pam W
SE of Seattle
[e-mail], [e-mail]

SUBJECT:  Re: Inclusion  Date:  96-03-20 03:27:15 EST
From:  Ty Reg

Try contacting [e-mail] who has hosted the Inclusion chat on AOL
for a year or so; she could probably put you in touch with several families.
I believe there is another inclusion chat starting up that she could probably
direct you to, also.

Also, contact the exec dir of TASH at [e-mail] and you will learn of
similar studies (some of which were published in a recent issue of the
journal of that organization).

The National DS Society is conducting a huge study on inclusion and might
have some helpful suggestions. Their WWW page is http://www.pcsltd.com/ndss/

The National DS Congress has some great resources, also. Hope they can help!

The National Down Syndrome Congress: 1-800-232-6372

The National Down Syndrome Society 1-800-221-4602

Sending a message to the DS list serv at [e-mail] would
probably elicit some good responses, too.

Good luck!

SUBJECT:  Re: student to student chat   Date:  96-03-20 03:32:22 EST
From:  Ty Reg

Hi

There is a DS chat for people with Down Syndrome each Sunday. My son enjoys
participating and also writing email to the folks he meets there. The chat is
hosted by a mother/daughter team. Write to [e-mail] for information.

You might also look for pen pals (key pals?) via the Down Syndrome list serv
at [e-mail]

Sending a message to that address means it automatically goes out to about
400 families. Include your internet address, [e-mail]

Thanks for searching out this information for your student with Down
Syndrome.

[e-mail]

SUBJECT:  Re:bilingual-Down syndrome  Date:  96-03-20 03:33:26 EST
From:  Ty Reg

Many families are raising their sons and daughters with DS in bilingual
homes, and research indicates (similarly to nda kids from bilingual homes)
that initially there are complications, but later on the child benefits from
learning both languages.

In the case of kids with DS, the children also often learn sign language as a
third language, that encourages the development of communication and is also
a good visual cue for spoken words of either language.

Good luck!

[e-mail]

SUBJECT:  Re: Guiding Light  Date:  96-03-29 17:43:13 EST
From:  Ty Reg

Maybe the character will last to compete for the Gold in the International
Games as a Senior!  ;-)

It *is* exciting to have this story line run, and to be here at the
beginning.

SUBJECT:  Guiding Light soap  Date:  96-04-01 03:58:23 EST
From:  DNiggl

I rarely make time for T.V.  This sound interesting though...When is the baby
supposed to be born?  Do you have any background info. on where the producers
and story writers are getting their expertise? Hope it will be done with
compassion and good press.  Every cloud has a silver lining and sometimes
rainbows.

SUBJECT:  Re: Guiding Light soap  Date:  96-04-04 17:12:34 EST
From:  Ty Reg

From _TV Guide_, March 9, 1996:

Guiding Light's Next Step
   by Michael Logan

   Next month -- in what may be the bravest soap story ever told -- one of
Guiding Light's most popular characters will give birth to a baby with Down
syndrome.

"When I was first told about the storyline, I thought 'God, how devastating.
How depressing!' " says Maureen Garrett, who plays the mom-to-be, Holly
Lindsey-Reade.

"But that's not the way (head writer) Megan McTavish has written it.  This is
really thrilling, really courageous.  The kind of story that forces you, as
an actress and a character, to be a bigger person than you are."

    Holly -- who is married to newspaper editor Fletcher Reade, played by Jay
Hammer -- was told of the condition of their baby (a girl) after undergoing
amnioscentesis in December.  The couple's decision not to terminate the
pregnancy signifies a remarkable long-term commitment on the part of CBS and
producer Proctor & Gamble.  (The show plans to cast a series of kids with
Down syndrome as the Reade child grows.)

Notes Garrett, who joined GL as the fatal- attraction- prone Holly in 1976,
"There is no comparison between this and what the show could have given me to
do -- you know, yet another obsession, another neurosis, another love story.
This is so much more profound.  It's a new kind of love."

Hammer seconds that emotion: "I feel proud and very blessed that GL chose us
to play this.  It's a signal event in daytime television.  P&G wouldn't have
touched this story ten years ago."  Some viewers may still deem the plot too
controversial, but both stars agree that terminating the pregnancy would have
been even more so.

"I got several letters stating, 'If you abort this child, I am going to stop
watching your show,' " says Garrett.  Adds Hammer: "If we'd chosen abortion,
I don't think the audience would have felt they could ever trust GL again --
on _any_ subject."

Writer McTavish has wisely decreased the duo's screen time of late. "We're
giving the viewers psychic space to adjust to the idea in their own
way and time," says Hammer, who notes that fan reaction thus far has been
"cautiously optimisitic.  We're on thin ice here.  They're waiting to see how
we handle this."

The parenting of a Down syndrome child has been dramatized before -- in
prime-time movies and the 1989-93 series _Life Goes On_ -- but Hammer
believes such efforts can't pack the punch or explore the complexities like a
daily serial can.  "This storyline -- given Guiding Light's 59-year broadcast
history -- could run for 20 years.  And I hope it does," he says.

"I would love nothing more than to see Holly and Fletcher wave good-bye to
their daughter as she heads off to college."

copyright 1996 TV Guide

---------------------------

SUBJECT:  Re: Guiding Light soap  Date:  96-04-10 14:59:58 EST
From:  Ty Reg

I heard the baby is born and needs heart surgery. Does anyone know the 900
number for Guiding Light messages?

SUBJECT:  Re:DS, ADD and Ritalin, etc   Date:  96-04-14 18:33:51 EST
From:  KANeff

I have a 12 year old with DS who has been on Ritalin since 2nd grade.  I do
not like the effects of Ritalin for him - he becomes withdrawn, almost
comotose, and engages in repetitive self-stimulative and obsessive-compulsive
behaviors that are not present when he is off the drug on weekends.  Then he
is much more outgoing, witty and engaged.  He can also be much more stubborn
and he is certainly much louder - making noises, shouting out, etc.  These
are the behaviors that make the teachers at school unwilling to consider not
having him on Ritalin.  So we're sort of damned if we do and damned it we
don't.  Tried cylert and prozac to no avail, as alternatives.  Currently give
him a small dose of clonidine in the am to encourage more compliant behavior
but he has not been able to develop much of a tolerance for it, so any higher
dose puts him to sleep.  I would love an effective alternative to ritalin.
But I also believe that where these kids are placed (or not) and how they are
taught (or not) is as important if not more important.  In an inclusion
program he had problems with self-esteem and feeling that he belonged.  In a
self contained room he isn't learning anything.  In inclusion he was not
always happy but he made progress.  In a self contained room he is happy but
is not making progress.  And ritalin has been the constant in both settings.
ANy ideas?

SUBJECT:  Re:DS, ADD and Ritalin, etc   Date:  96-04-14 23:46:44 EST
From:  SusanS29

"I have a 12 year old with DS who has been on Ritalin since 2nd grade.  I do
not like the effects of Ritalin for him - he becomes withdrawn, almost
comotose, and engages in repetitive self-stimulative and obsessive-compulsive
behaviors that are not present when he is off the drug on weekends.  Then he
is much more outgoing, witty and engaged."

I'm a *big* fan of medication -- WHEN the child clearly has ADD, and when the
child CLEARLY benefits from it.

I'm not sure either is true for this child. When Ritalin isn't needed, it can
have a sedating effect -- *but that's not what it's SUPPOSED to do.

Teachers do not have the right to insist on any medication for ADD, but
*especially* when the results are negative!

If Clonidine helps but the side-effects are unpleasant, sometimes Tenex is
used instead. But ask your doctor (and make sure the doctor knows when and
how these meds are to be used.)

Does your child have a clear diagnosis of ADD?

SUBJECT:  Re:DS, ADD and Ritalin,
etc   Date:  96-04-15 01:41:51 EST
From:  DNiggl

Tolerance and Acceptance of diversity is a KEY ingredient to what is often
missing in an unsuccessful inclusion program.  Sadly, our society and culture
in general have a hard time with this for everyone in our population.  I
agree that the support and delivery of services plays a very important and
big part in how a child learns and how their self esteem evolves.
Everyone learns better and feels better about themself when they are
accepted, included, valued, and  appreciated for exactly who they
are......UNCONDITIONAL conditions.....Maybe this is an ideal vision for most
learning environments...But, I don't think it hurts for people to make room
for growth in these areas regarding other human beings.  May the Great
inclusion programs continue to display their successes and hopefully the
secret to successful inclusion will become evident.

SUBJECT:  Re:DS, ADD and
Ritalin, etc   Date:  96-04-18 20:10:46 EST
From:  Ty Reg

<<Everyone learns better and feels better about themself when they are
accepted, included, valued, and  appreciated>>

That is an ideal situation for what Abe Maslow called Self-Actualization. He
was the psych who studied successful, sane people to find out how they
reached their potential, rather than studying people with mental illness to
find more about what they have in common.

There is a good article on the WWW about Maslow at URL:

http://www.almanac.bc.ca/~axis/

SUBJECT:  Educational Programming  Date:  96-04-26 00:02:24 EST
From:  CFHaynes

A friend of mine would like to post the following:
A am a special educator who would like some different perspectives on
appropriate programming for Down Syn. children. I have a 7 yr. old girl in my
class. Her speech is largely vowel sounds and sounds like "eesh". Once in
awhile, she says a word clearly enough to be understood. Her mother wants her
to be in a class for the hearing impaired so she can learn Signed English and
be better understood by her family and classmates. She knows some signs, but
doesn't seem to be interested in using them. She also has a stubborn streak,
so I think that has a lot to do with her not developing her signs or speech.
I think she's doing well in my prog. (mild impairments). She's interacting
with the other kids to some degree and has a Sign Lang. interpreter/tutor. I
sign with her as well, and she gets speech therapy 2X/wk. I don't understand
the benefit (long term) of the H.I. prog. since the Deaf will not accept her
into their community when she's an adult. Any ideas??

SUBJECT:  How can we fix
this?  Date:  96-04-27 15:39:05 EST
From:  Boulevard

Is anyone else experiencing what I am when I check this message board -
namely, although I read it (and post to it) frequently, when I click on the
icon for reading new messages, I end up back in 1995.  Time warp!  Why is
this happening?  Is it <gasp> just me?  -Nancy (feeling rather paranoid at
the moment)

SUBJECT:  Re:How can we fix this?  Date:  96-04-28 06:22:00 EST
From:  StarNMom

I thought I was doing something wrong so I used the icon that says FIND SINCE
and I choose Read Messages in the Past - Days and I just write in 3 or 30
days so I don't see messages from long ago.

SUBJECT:  The Institutes in Phili  Date:  96-04-30 19:53:56 EST
From:  DBrownsey

Has anyone heard of Glenn Dooman and the Institutes in Philadelphia?  What's
your reaction?
I am blown away by the results!!!

SUBJECT:  RE: The Institute  Date:  96-04-30 21:03:59 EST
From:  Kaseyy

Hi,

You might want to read a book called:
"No Time for Jello" by Berneen Bratt
Brookline Books  Copyright 1989

I suggest reading this before making a heavy investment in this program. You
can probably order this book at your local bookstore.
kaseyy

SUBJECT:  Re:How can we fix this?  Date:  96-05-01 19:34:55 EST
From:  SusanS29

Nancy it seems to be a tough problem for AOL's techhies to fix.

Meanwhile, click on the calendar and put in the number of days since your
last visit.

I'm sorry; I know it's inconvenient. I hope it's fixed soon.

SusanS29, Host

SUBJECT:  Re: The Institute  Date:  96-05-01 20:03:06 EST
From:  Ty Reg

I understand that the Institutes for the Achievement of Human Potential WWW
site URL is www.iahp.org; this was posted in a DS folder at keyword
disAbilities by [e-mail] who I believe is affiliated with the
organization

Most URLs read like this: http://www.iahp.org so you might want to try that
if the original doesn't work.

I found the book Bittersweet Baby quite good in discussing different
therapies and treatments available for kids with Down Syndrome

The most important thing we can do for all our children is to keep high
expectations and support them along the way with whatever small
accommodations they may need to be successful. I believe they have more
opportunities growing up included in the mainstream of our communities; and
like all children, most of them do best with a little help from friends.

Wishing you all the best

SUBJECT:  Need Ann Lander's on Down  Date:  96-05-06 20:46:54 EST
From:  JARMB

Ann Landers printed a great column about Downs Syndrome called A Trip to
Holland.  I have a friend who just what a Downs child and I would really love
to send this column.  Does anyone out there have it???  It expressed the
emotions so well and I know would give her the hope she needs at this time in
their lives.  Thanks.

SUBJECT:  Re:Down Syndrome Surgeries  Date:  96-05-07 21:07:49 EST
From:  AStrein

I am the mother of a 5 year old daughter, with Down Syndrome.  She had eye
surgery for Nystagmus when she was 3 years old.  She has had a history of
Sinus Infections the year  of her surgery, but was never treated with
antibiotics prior to surgery.  This in return had led to her aquiring
Endopthalmitis (untreated for 5 days due to a misdiagnosis of
Conjuctivitis)in her left eye, and she eventually had to have the eye
removed.  The bacteria that caused the infection was homopholis. She has
compensated very well, and her prothesis looks and moves pretty good, but it
still breaks my heart for what has happened.  My message to all parents is to
let your pediatrician know of any surgery.  Have the surgeon  look at your
childs  pediatric records.  And I would strongly suggest to have your child
totally illness (mild or major) free, and to medicated with antibiotics a
couple days prior to surgery.  We as parents have to advocate for our
children in every way, don't assume the proffesionals know everything,
especially when it comes to Down Syndrome.

SUBJECT:  Re:Need Ann Lander's on Down  Date:  96-05-11 02:01:08 EST
From:  C1ndysue1

This was written by Emily Kingsley whose son Jason cowrote a book on Down
Syndrome called Count US IN:  Growing up with Down Syndrome...it can be found
on the following web page:  http://www.downsyndrome.com/holland.htm.  Emily
also pops in on the Tuesday night Down Syndrome chats at 9:00 ET in the BHMF
(keyword PEN) from time to time.....she is one wonderful lady!!!

Cindy

SUBJECT:  Re:Need Ann Lander's on Down  Date:  96-05-11 02:42:47 EST
From:  C1ndysue1

I tried to cut and paste this earlier...and couldn't get it to
work....finally got it!!!

c1987 by Emily Perl Kingsley. All rights reserved.

Welcome to Holland

I am often asked to describe the experience of raising a child with a
disability - to try to help people who
have not shared that unique experience to understand it, to imagine how it
would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip
- to Italy. You buy a bunch of
guide books and make your wonderful plans. The Coliseum. The Michelangelo
David. The gondolas in
Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your
bags and off you go. Several
hours later, the plane lands. The stewardess comes in and says, "Welcome to
Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm
supposed to be in Italy.
All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and
there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting,
filthy place, full of pestilence,
famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new
language. And you will
meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than
Italy. But after you've been there
for a while and you catch your breath, you look around.... and you begin to
notice that Holland has
windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all
bragging about what a
wonderful time they had there. And for the rest of your life, you will say
"Yes, that's where I was supposed
to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss
of that dream is a very very
significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy,
you may never be free to enjoy
the very special, the very lovely things ... about Holland.

SUBJECT:  Re:Need Ann
Lander's on Down  Date:  96-05-12 02:55:19 EST
From:  StarNMom

There are some other wonderful messages for new parents of babies with Downs
on the Down Syndrome WWW page with the URL

http://www.nas.com/downsyn/

Holland it there, plus one called Welcome to Babies at
http://www.nas.com/downsyn/welcome.html
and frequently asked questions at
http://www.nas.com/downsyn/faq.html  and another at
http://www.nas.com/downsyn/dshm.html  that I can't remember what it is!

It is so nice of you to help your friend in this way.

SUBJECT:  RE: EI
Assessment   Date:  96-05-15 21:37:10 EST
From:  Swiftsure

Greetings to all!

Graduating from Teaching the Infant with Down Syndrome.  Need ideas on what
is next.

We are getting ready for our EI assessment - Rory is 22 months - I can't
believe how time flies.  For our last assessment (at 15 mos) we relied
heavily on the book Teaching the Infant with Down Syndrome to see what we had
accomplished and what was left to focus on.  Now he has mastered many of the
items in the book - with some of the gross motor and a few fine, cognitive
items left.

While we will continue to focus on PT, OT and SP I now feel it is time to
move on to more cognitive/learning type items.  What I'd like to find is a
resource that helps identify areas that we can focus on to help Rory with
this next step.

Can anyone recommend a book for children who are NDA or DS  that goes through
learning milestones in a similar way to the Teaching the Infant book -
perhaps something about getting ready for pre-school or kindergarten?

Any ideas are appreciated!

Best,
Gillian
(Mother of Rory - 22 mos)
[e-mail]


SUBJECT:  Looking for Support & Info  Date:  96-05-19 23:06:40 EST
From:  KDOLL2

I am a recently divorced mother of two...  Margaret (11) and Jordan (11
months w/DS).  Looking for others to share info with.  Was active in the
local support group... but had trouble relating to the problems encountered
with the married couples.  Unable to locate a group for single parents.
Could someone send info or let me know how I could possibly start a group
myself?  I'm also unable to locate books listed above...  would be interested
in knowing more about the "teaching" books.

Thanks!

Kim.
DollK@aol

SUBJECT:  EARLY INTERVENTION - HELP!  Date:  96-05-20 02:13:55 EST
From:  Mafromhell

I am a mother of two beautiful children.  My 15 month old son has down
syndrome and was elligible for early intervention provided by the County
Office of Education.  I was not impressed by the 2x month visits from a
special ed teacher totting her "handicapped toys".  To make a long story
short, I pushed for an interdisciplinary center-based program
(OT/PT/Speech/Nurse/Nutritionist/Social Worker/Teachers)  which meets 2x
week.  Many parents are very happy with this new program, but alas, after all
of my hard work (meeting after meeting...fighting for something) Thomas'
development has actually halted in the last 4 months.
I have read tons of books on DS; I take him to physical therapy 1x week as
well as the "baby group"; I play with him: I "exercise" with him; I am aware
of the slowing of development in most children with Down Syndrome as they get
older.  But Thomas' gross motor skills and fine motor skills are not
improving at all.  He is not creeping yet, he "airsits" (avoids
weight-bearing), he cannot move from sitting to lying, and the hardest part
for me - he gets sooo frustrated now.  I know that he wants to move and yet
has trouble.  I know that my son will progress "eventually" (how many times
have I heard that PT services for DS children are unwarranted due to the fact
that you can't "fix" hypotonia? - uggh!)  but both he and I are getting very
frustrated, and I don't know what else to do.    ANY SUGGESTIONS?  Thank you.



SUBJECT:  Re:EARLY INTERVENTION - HELP  Date:  96-05-20 05:40:55 EST
From:  KarenL2888

I think what you are probably seeing is "plateau-ing".
Sometimes we get so caught up in what the child may do next, that the child
tires, and stops learning.  It is a natural growth progression, where they
need a rest, a break from routine, a time to relax.  Then, suddenly, one day,
he will learn 10 things at one time.  I remember those frustrating days when
he seemed to not be able to do anything right, and just about the time I
reached where you are now, he would take off again.  He still has these bouts
and he is 15.  I think sometimes the little guy tries so hard that he just
wears out.  Dont we all.
Heres hoping yours is short lived.
Also, please check his health.  He may have an ear infection or something
that is affecting his behavior.
Karen

SUBJECT:  Re:  Early Intervention  Date:  96-05-20 16:31:48 EST
From:  DBrownsey

Read the book "What To Do With Your Brain-Injured Child"----by Glenn
Dooman.

SUBJECT:  Pascal Duquenne, Best Actor  Date:  96-05-23 05:34:37 EST
From:  PMWilson

I have just been enjoying newspaper stories about Pascal Duquenne, the
Belgian actor with Down Syndrome who won Best Actor at the Cannes Film
Festival this year (sharing it with his co-star). These stories are linked
from the SF Bay Area Down Syndrome WWW page  by Jose Luis Pino at URL

http://ptolemy.eecs.berkeley.edu/~pino/DS/news/index.html

<<<The Eighth Day (LE HUITIEME JOUR) (French-Belgian, Drama, Color, no
rating, 1:54)
By David Rooney CANNES (Variety) - Neologists of the world may have to cook
up new words for cute after Jaco Van Dormael's ``The Eighth Day,'' the story
of a Down's syndrome-afflicted (ahem) innocent (hmmmm) who brings warmth,
humanity and color into the gray life of an emotionally stifled
businessman>>>

The Reuters' review of the movie was entitled: <``Eighth Day'' Is Too Cute>
but went on to say: <....The film does have merits, one of them being a
terrific central performance from Pascal Duquenne, who...  plays Georges, who
has been in an institution for the mentally disabled since the death of his
mother a few years earlier...>

A Reuters' story on the award: <....Duquenne has worked as an actor since
1985 in the Brussels cultural center ``Creativite et Handicap Mental''
(Creativity and Mental Handicap) and will play the leading role in a new play
starting at the end of the month. But first he wants to rest. ``I am tired of
news conferences. I want to go on with my life now...''>

SUBJECT:  Re:Young
Parents  Date:  96-05-29 13:09:43 EST
From:  BBryan8029

Angie,
  My wife and I had Lauren, now 4 1\2, when we were very young.  Melissa was
19 and I was 24. To say the least we were shocked.  After you accept the
worst, you really can see the love and warmth of these children.  I would
never trade Lauren for anything in the world.  She is so precious as I'm sure
your child is.  Like the doctor's say, you did absolutly nothing for this to
happen.  If you can find a book called "Angel Unaware" by Dale Evans read it
and read it again and let your family read it.  You can probably read it in
an hour.
      Bryan

SUBJECT:  Re:My first message  Date:  96-05-30 16:38:57 EST
From:  Dee Dee G

I am the mother of 7 year old Bethany, who is a beautiful Down Syndrome
child.  Due to an amniocentesis, we were aware that she was Down Syndrome
before she was born. She is the joy of our lives, but right now we are going
through some behavior problems with her at school, mostly sudden aggressive
attacks (hitting and pushing) on the other children.  Scoldings, time outs,
and even mild spankings have not helped at all. Any input would be most
appreciated on how to work on this problem.

SUBJECT:  Re:My first message  Date:  96-05-31 23:35:56 EST
From:  Mutualaide

Dee Dee...just a couple of thoughts....our daughter, Emily also has Down
Syndrome...she is 7 1/2 now, in an inclusive school setting and rarely (or so
I'm told) has behavioral problems.  They do, however, pop up now and again.
The first thing we do when we are informed of any agressive behaviors is ask
this question "what was going on around her/at the time?"  Next "what were
the other kids doing?"  Next  "what was she trying to communicate?"  I think
very often our children are expected to have behavior problems, hence when
something is going on that the adult in charge may not have seen/heard the
assumption is that this agressive or acting out behavior is actually a
problem.  I remind them that while what she DID was not appropriate.....maybe
it was her only way of getting her point across.  Many times I have seen her
sort of ignored; not in a bad way, but in the confusion of the moment, or
because someone doesn't understand her needs and just assumes she is in
agreement.  I don't ignore the behavior, but I  have to say if it doesn't
happen at home--it's probably because YOU can take the TIME needed to
understand and watch over what's happening.  We don't use time out, nor do we
spank....usually a good finger wagging in combination with a stern voice and
a frown do the trick....until the next time!

SUBJECT:  Re: My First Message  Date:  96-06-07 21:41:46 EST
From:  JACreamer

I work with a DS child that was experiencing many of the behaviors that you
are describing with your little one...  It was not because we did not take
the time to understand him but due to his frustration because he could not
communicate what he was feeling...we have spent a lot of time working on
feelings and also developed an extensive behavior program...because the child
bought into this program (when he didn't buy into anything else) the parents
did and we now only see those behaviors when he is ill!

SUBJECT:  Life Skills`  Date:  96-06-07 21:44:02 EST
From:  JACreamer

I am looking for a life skills program to use with a DS student going into a
full inclusion fourth grade.  He is currently working on a 2-4 year old
level... any thoughts?

SUBJECT:  Garth Brooks Video  Date:  96-06-13 21:17:20 EST
From:  THammeke

I would appreciate anyone's comments on the Garth Brook's Video "Standing
Outside the Fire".
I just saw it and I think it is wonderful.

SUBJECT:  Re:Life Skills`  Date:  96-06-15 15:06:30 EST
From:  Ty Reg 2

<<I am looking for a life skills program to use with a DS student going into
a full inclusion fourth grade.  He is currently working on a 2-4 year old
level... any thoughts?>>

Try the National DS Society at 1-800-221-4602 and the he National Down
Syndrome Congress at 1-800-232-6372; or on their WWW pages, linked from the
Down Syndrome WWW Page at URL
http://www.nas.com/downsyn/

http://www.carol.net/~ndsc/
<National DS Congress email: [e-mail]>

The National Down Syndrome Society
http://www.pcsltd.com/ndss/

For inclusion resources try the World Wide Web at:
http://www.familyvillage.wisc.edu/edu_incl.htm

The Inclusion Home Page
http://www.inclusion.com

Institute on Community Integration
http://www.coled.umn.edu/iciwww/
(linked from the DS WWW page)

Axis Consultation & Training
http://www.almanac.bc.ca/~axis/
Norman Kunc & Emma Van der Klift
[e-mail]

Alliance for Technology Access (ATA) web site
http://marin.org/npo/ata/

Other good resources:

THE ARC'S HOME PAGE
http://TheArc.org/welcome.html

Good luck!

[e-mail]
http://www.nas.com/downsyn/contrib1.html
ftp://wonder.mit.edu/pub/ok/TFtMotN.txt

SUBJECT:  Re: Garth Brooks Video  Date:  96-06-15 15:09:18 EST
From:  Ty Reg 2

I just heard that the video is available on the second video album of Garth
Brook's music videos. Families on the Down-Syn list serv have commented that
they love it, too. It's good that youngsters with DS are getting positive
media coverage - they do so much with the opportunities we win for them!

[e-mail]
Mom of E, 12 (and Z, 14)

SUBJECT:  Down syndrome/colostomy  Date:  96-06-17 09:08:05 EST
From:  PMJ 48

Does anyone know something about a bowel syndrome (rarely) asssociated with
Downs? I am
getting a new student who had a colostomy since birth and was recently
reconnected.
                                                           Paula

SUBJECT:
Re:Down syndrome/colostomy  Date:  96-06-18 02:57:24 EST
From:  PMWilson

Dear Paula,

You might find the best information by contacting the national organizations,
The National Down Syndrome Congress: 1-800-232-6372  and The National Down
Syndrome Society 1-800-221-4602

There are also good message boards about diverse diagnoses (and dual
diagnoses) at the

OurKids WWW Archive:  postings of the
Our-Kids listserv (diverse diagnoses)
http://wonder.mit.edu/our-kids.html
Email to [e-mail]

with families and professionals familiar with colostomies, and the

Family Village Project (diverse diagnoses)
http://www.familyvillage.wisc.edu/
Linda Rowley, Family Village Project Coordinator   [e-mail]
also with information on diverse diagnoses

For basic information on Down Syndrome, try the Down Syndrome WWW page, URL
http://www.nas.com/downsyn/contrib1.html

There is a group of physicians who has a Down Syndrome Special Interest
Group, with a new publication, the Down Syndrome Quarterly;
Editor: Samuel J Thios, PhD, [e-mail]
614-587-6338  Fax [phone]
Denison University; Granville, OH 43023

and also a new, free newsletter, Disability Solutions,
with a WWW page at URL
http://www.teleport.com/~dsolns
9220 SW Barbur Blvd 119-179
Portland Oregon 97219
503/244-7662
email: [e-mail]

Highly recommended books are:

BOOK: Communication Skills in Children
 with Down Syndrome: A Guide for Parents;
Libby Kumin;  Phone or Fax: [phone]
(She has an excellent newsletter: Communicating Together)
ISBN Number:  0-933149-53-0 .
Woodbine House, 1-800-843-7323
6510 Bells Mill Road
Bethesda, MD  20817
[phone]

BOOK: Teaching Reading to Children with Down Syndrome, A Guide for Parents
and Teachers
Patricia Logan Oelwein; ISBN Number 0-933149-55-7
Woodbine House, 1-800-843-7323

I hope this helps. Thanks for writing for information for support of your
student with Down Syndrome.

Pam W
Just a Mom

SUBJECT:  Re:Down syndrome/colostomy  Date:  96-06-20 19:41:35 EST
From:  HLC 594

Hi!

I believe you are talking about a condition known as Hirschsprung or
Intestinal Pseudo-Obstruction Syndrome.

I had a child with DS that had the colostomy for about a year from ages
approx 9-10.  It wasn't a problem at all.

I got alot of help from:

Intestinal Pseudo-Obstruction and Hirschsprung's Disease Society
PO Box 772
Medford, MA 02155
617-395-4255

-Holly

SUBJECT:  Running Away  Date:  96-06-22 02:03:37 EST
From:  KENDVAN

I have a 6 yr. old boy with DS that runs away at every opportunity. Does any
one else have this problem and what have you done to make it better?


SUBJECT:  Re:Running Away  Date:  96-06-23 22:50:13 EST
From:  Kaseyy

Hi,

One of my friends worked with a little girl with DS who also ran away,
especially in crowded public places. She made up a song about staying with
mom or dad; and they sang it many, many times. Eventually the message took.
Might not work for someone else, but thought I'd share it, just in case.
kaseyy

SUBJECT:  Re: Running Away  Date:  96-06-24 07:03:32 EST
From:  DownSynMom

Some children with Down syndrome seem to be wanderers or runners; there are
devices that set off alarms when the person wearing them wanders a certain
distance away that have been helpful. There are strategies for managing
risk-taking behaviors that seem to be effective, that range from simple
explanations to games to loss of privileges.

Sometimes finding out what causes a child to wander or run away is enough -
if they are looking for friends or activities and follow an impulse to search
on their own, it is a different situation from just wanting a strong response
or adventure.

Some children with DS have additional diagnoses such as adhd and treating the
problems related to the second diagnosis can be helpful.



SUBJECT:  Re: Running Away  Date:  96-06-25 09:43:26 EST
From:  NTillison

My daughter is 7 and had a ball getting out of the yard and going to the
corner gas station, mini mart to get a candy bar.  We have put bolts on the
doors and when she climbed on a chair to open the bolt, we had to put
padlocks on the fenced yard gates.  (We left the keys in the padlocks for our
own ease in entering and leaving.  She has not yet figured out how to unlock
these padlocks and I am certainly not going to teach her yet!)  Anyway, it
has given me great piece of mind around the house (although she still
occasionally makes the trek when the padlocks aren't locked.)  As far as in
public, I haven't figured that one out yet.  I'd like to hear more about the
alarm system previously mentioned.    Nancy from Tosa

SUBJECT:  Re: Running
Away-alarms  Date:  96-06-26 14:25:46 EST
From:  Boulevard

Our problem is not nearly as severe as those of other parents who have posted
here, but we've found a solution that might help some parents.  Our son
doesn't run away, but he is an early riser (by 6 am.) and enjoys going to get
the paper, letting the animals out, etc...If he decides it's time to ride the
bike, go get the mail (down the street at the community mailbox), etc,. he's
on his way.We found a security system (which we were interested in, anyway)
that allowed us to hear chimes whenever a door to the outside was opened.  It
gives me a cue that I'd better pull my robe on and investigate, which is
better than nothing!  I don't take as many luxurious baths as I used to,
especially because he invites anybody at the door to "Get in, please!",  but
I can feel fairly certain when I'm upstairs that Austin is still downstairs
(unless he starts going through the windows).  Of course, this doesn't keep
him (Mr. Amateur Chef) out of the pantry!  So, I'll keep the  Nikes handy and
forsake the teddies for the Tshirts & robes!

SUBJECT:  down syndrone  Date:  96-07-02 13:55:38 EST
From:  Mommyia

I am a kindergarten teacher who will have a child with donw syndrome in my
class this year.  I would like names of books that I could read during the
summer so that I will better understand  the child when he enters my class.


SUBJECT:  Re:Mosaic Down's  Date:  96-07-02 20:43:49 EST
From:  JASelman

My friend had a baby diagonosed as Mosaic, she responds physically as a
normal child, actually better than normal.  Her eye response is amazing.  She
has normal lines on her hands. The typical M sign and not the typical lines
of a Downs Syndrome child.  Her muscle tone is excellent. The mother, my
friend is worried that the child will be impaired,despite the positive
response of the doctors.  What are the characteristics of other Mosaic
children?  She is eager to find out similiarities in these children.
Thanks.

SUBJECT:  Re:Mosaic Down's  Date:  96-07-06 14:50:13 EST
From:  Ty Reg 2

A study on the Mosaic form is being conducted by

Dr. Colleen Jackson - Cook
Department of Human Genetics
Virginia Commonwealth University
P.O. Box 980033
Richmond, VA  23298-0033      [phone]

There will be a brochure out about Mosaic DS as a result of this study.

I understand that the Down Syndrome Medical Special Interest Group is
collecting information on Mosaic DS.

Down Syndrome Quarterly
Editor: Samuel J Thios, PhD, [e-mail]
614-587-6338  Fax [phone]
Denison University; Granville, OH 43023

I will send a collection of messages about the Mosaic form that I have
collected from the Down Syndrome list serv/Down-syn newsgroup, via email.
Feel free to contact anyone who posted there by writing to the email
addresses in the From lines.

Thanks for checking out information for your friend's family. It's good to
have you online.

Pam W
[e-mail]


SUBJECT:  Re: down syndrome  Date:  96-07-06 15:05:29 EST
From:  Ty Reg 2

Please send a note to [e-mail] and your query will
automatically go out to about 500 families and professionals with an interest
in DS.

You might want to write for a free subscription to  Disability Solutions
(newsletter) or see the latest issue on curriculum adaptations at their WWW
site:
http://www.teleport.com/~dsolns
email: [e-mail]

The editor is the original person who helped organize and support AOL
Down-Syn chats on AOL, Joan Medlin, bringing nationally recognized experts
online to chat with parents and teachers.

To write for a free subscription, the address is:
Disability Solutions
9220 SW Barbur Blvd 119-179
Portland Oregon 97219
503/244-7662

A reliable and well-informed AOL resource for Inclusive Education is Karen
Lucas (KarenL2888), who hosts the Thursday evening Inclusion Chats on AOL.

There are several excellent books that will help prepare you for your
wonderful student with Down Syndrome. The two most widely recommended are:

BOOK: Teaching Reading to Children with Down Syndrome, A Guide for Parents
and Teachers
Patricia Logan Oelwein;
ISBN Number 0-933149-55-7
Woodbine House, 1-800-843-7323

*BOOK: Communication Skills in Children
 with Down Syndrome: A Guide for Parents;
Libby Kumin;  ISBN Number:  0-933149-53-0 .
Woodbine House, 1-800-843-7323
6510 Bells Mill Road
Bethesda, MD  20817
[phone]
*(She has an excellent Newsletter: Communicating Together; PO Box 6395;
Columbia, MD 21045-6395
Phone: [phone]; or Fax [phone])

Also highly recommended is:
Teaching Strategies for Children with Down Syndrome:  A Resource Guide (K-6).
B. Tien and C. Hall, Editors.  Jointly prepared by the PREP Program and the
Ups & Downs Assoc. of Calgary, Alberta. Ups & Downs, Calgary Down Syndrome
Association, 1001 - 17 Street NW, Calgary, Alberta, Canada  T2N 2E5. Ph
403-289-4394.   Cost is $15 Canadian.

My 12 year old son with DS was the first to integrate a regular kindergarten
class in our district, and it has made all the difference in the world for
him and our family.

His teacher was very welcoming and supportive, and did not express one
reservation about his enrollment until she sent a Thank You note at the end
of the year. That's when she told me how unsure and worried she was while
preparing for having a child with DS in her classroom. He had a wonderful
year, and she was grateful for the experience, and the opportunity to know
him.

He made a big difference in the lives of his classmates; inspiring them to
learn and to help one another as they helped him. It was a great year for all
of them. Thank you for taking the time to prepare and welcome the student
with DS to your classroom. Just as any kindergartener, this one will be a
unique little package full of delights and adventures, and I hope you will
keep us informed about your experiences.

Wishing you all the best,

Pam W
[e-mail]

SUBJECT:  Re: down syndrome  Date:  96-07-06 16:52:10 EST
From:  UpsnDowns1

You would find great resources at either of the two US National Down Syndrome
organizations: the NDSS (National Down Syndrome Society) and the NDSC (the
National Down Syndrome Congress).

The NDSS just had their annual conference and there was a presentation on
their supportive education program. The NDSC will have their convention in
Miami this month and are also leaders in the support of inclusive
education.

SUBJECT:  Re: down syndrome  Date:  96-07-07 04:57:44 EST
From:  FamilyEmp

Both national organizations have toll-free numbers:

The National Down Syndrome Congress: 1-800-232-6372

The National Down Syndrome Society 1-800-221-4602

They have WWW pages, also; both are linked from the main Down Syndrome WWW
Page at URL
http://www.nas.com/downsyn/

Good luck!

Pam W
http://www.nas.com/downsyn/contrib1.html
ftp://wonder.mit.edu/pub/ok/TFtMotN.txt
http://www.familyvillage.wisc.edu/edu_incl.htm




SUBJECT:  Day and Date Friday July 12  Date:  96-07-10 12:30:07 EST
From:  Ty Reg 2

I understand there will be a segment featuring the family of the baby girl
with DS who plays Meg on the soap opera Guiding Light on the tv show Day and
Date on Friday, July 12. I bet it's a good show!

Pam W
SE of Seattle

SUBJECT:  Re:Day and Date Part One  Date:  96-07-21 14:11:40 EST
From:  PMWilson

This unofficial transcript appeared on the Down Syn list serv:

__
Narrator: the day anybody sees the birth of their child is a day of
incredible day of joy and emotion. but what if there's something wrong with
your baby, what if people tell you that your baby is not normal. does it make
that baby any less special?

well, 10-month old jackie falchier, a beautiful baby, was born with down
syndrome.  when jackie arrived, her parents were made to feel as if she were
not a bundle of joy.

they were scared and they were devastated, but today the entire family is
learning from this tiny tot. and so is the entire cast of a soap opera. this
is the story of a little girl who is an absolute guiding light for everyone
she touches.

Christy (jackie's sister):
"she's gonna have alot of jobs, she's gonna be an actress, she's gonna be a
teacher, she's gonna be good at sports.

Narrator: 9-year old christie falchier has big plans for her sister. Christy:
"she's a good kid. jackie, go back to sleep, nosy!

Narrator:  little jackie may have been born with ds, but she is already a big
star, maybe too big.

Christy:  "my mom and dad keep saying she might lose her job cause she's
getting too chubby."

Narrator:
what does this 10-month old do for a living?  (music from guiding light comes
on!).  she has a starring role on the guiding light.

(a short script from guiding light  is shown...)

Rosetta:
"as i'm watching i realize that's my little girl.  and its fun.  they just
give us so much attention.  i just feel like such a celebrity mother."

Narrator:  rosetta and patrick falchier say they were devastated when they
found out their newborn baby girl had ds.

Rosetta: "i just was on the verge of a breakdown.  my doctor put me in a
private room."

Patrick:  "the way it was portrayed to us, when the doctors told us that she
had ds, it was, we thought that they baby was dead, that's the way that they
portrayed it to us."

Narrator:  at first the falchiers were stunned, then  they say they were
outraged by doctors who robbed them of the joy most new parents experience.

Patrick:  "our pediatrician was afraid to talk to us."

Rosetta:  "we realized how cruel, the way its presented in such a crude
manner was just unfair.

Narrator:
when they brought jackie home from the hospital there were no cigars, no
balloons, no friends on hand to celebrate.

Patrick:
"instead of congratulations, we had alot of expressions of grief, like i'm
sorry your baby has ds, instead of congratulations.

Narrator:
then patrick and rosetta  received a phone call that changed their lives.
jackie had auditioned for a role guiding light created for a baby with ds - a
ground-breaking story line. the voice on the other end of the phone said
jackie landed the part.

Rosetta:
"she lights up, she just come to life, it just seems that its on cue, and it
seems sometimes as if its rehearsed..."

Narrator:
jackie plays the role of baby meg, born to fletcher and holly reed.

when the soap opera couple find the baby has ds, they deal with it alot like
jackies real-life parents.

Actress who plays baby meg's mom:
"we call her meg, she arrives on set, right before taping.  she's a wonderful
performer, she's right on the moment."


SUBJECT:  Re:Day and Date part two  Date:  96-07-21 14:14:35 EST
From:  PMWilson


Narrator:
jackie's star is rising, and so is her bank account.  this little girl makes
$621 a show. not bad for a 10-month old.  but for jackie, the biggest bonus
is the affection.

Actress who plays mom on the show:
i love acting with her.

Actor who plays dad on the show:
yeah it feels good.  yeah, when you're in the moment, when you're in the
zone, yeah, she's our kid.  and it does feel like our baby.

Rosetta:
"if only she was greeted with that much joy on her arrival at birth it would
have been tremendous for us."

Actor who plays dad:
this is when soap operas are at their best - they are a learning  experience
in an entertaining format.

Narrator:
its been a learning process for the falchiers as well.  jackie may be getting
fame and fortune but rosetta and patrick say they are getting much more.

Rosetta:
"it was profound for me, watching her progress, watching her grow into this
little person.  its just such trememdous joy."

Patrick:
"i look at her and go, how is she different from anyone else?"

Narrator:
but jackie's biggest fan is her sister christy, who see's jackie as her very
own guiding light.

Christy:
"even if its not possible, you never know, but i'm going to find a cure,
jackie's gonna work with me for ds."


Narrator:
well jackie is not the first person with ds to be cast as a member of a tv
show.  audiences fell in love with and developed a better understanding of ds
through a character called corky on the popular show, life goes on. the
actor, chris burke, showed us all that having a disability does not mean that
you cannot fulfill your dreams. and that's exactly what the actor teaches us
all today.  chris burke is with us in the studio.

Narrator:
very nice to meet you. thanks for coming.

Chris:
(handshake) very nice to be here.

Narrator:
let's talk about what it means to act.  what is it like to be a part of a
family on the cast  life goes on.

Chris:
well actually to tell you the truth, i love working with the cast, with the
crew, they were great, they were always good to me.  always included me to do
different things, and i think that's so important.

Narrator:
what do you think people learn by meeting corky, what did corky teach people
about ds?

Chris:
uh, about disabilities.  its about abilities, not disabilities, we are able
to do a lot of things.  we can overcome them.


SUBJECT:  Re: Day and Date Part Three  Date:  96-07-21 14:14:42 EST
From:  PMWilson


Narrator:
did corky get fan mail?

Chris:
actually, alot of people do get confused.  because i answer to both names, if
people think i'm corky, i say my name is chris burke. but i do get a lot of
fan mail.

Narrator:
well you should, your acting ability is wonderful.

Chris:
my acting ability, not my acting disability.

Narrator:
this may be a tough question, but i'm wondering if people ever took advantage
of you in acting because you have ds.

Chris:
actually its because, they taught me to do good things, not bad things. its
just that i've always wanted to do good things, i want people to accept me
for who i am.  and so alot of good things, not bad things.

Narrator:
so everyone was good to you then.

Chris:
oh yes, everyone was good to me.  definitely.  very important.  it didn't
mean anything that i had ds or anything.  it really shows a good message.

Narrator:
what happens when its all over, do you miss life goes on?

Chris:
oh man, i really thought how am i going to say this,  but life goes off...
i'm doing better things right now.  i'm now working for the ndss which really
means alot to me.  i'm really proud that i am their goodwill ambassdor and i
go around traveling and making speeches.

i'm also editor in chief of a magazine, called *news and views* which is for
and about people with ds and their siblings.  its a good magazine and i love
it alot.

Narrator:
well, chris burke its really an honor to meet you, and you'd be an ambassador
for goodwill for anybody. thank you very much

Narrator:
people with ds are all different.  the disability affects everyone with it in
very different ways.  so although not everyone with ds will be an actor or
actress it doesn't make them any less special.

if you'd like to know more about ds, you can call the ndss at
1-800-221-4602.

SUBJECT:  bit.listserv.down-syn Review  Date:  96-07-21 14:19:51 EST
From:  PMWilson


This appears at AOL's newsgroup scoop review on the welcoming screen for
reviews, where it will stay a week and then be available for browsing in the
archives...

bit.listserv.down-syn
reviewed by PMWilson

Just about every neighborhood in America has a few babies, children, and
adults with Down Syndrome, but when a newborn is diagnosed there is often no
indication where family and friends can find good information about the
implications and outlook for that child. The Down-Syn newsgroup has offered
instant information, resources, and support on Down Syndrome since 1993. Easy
access for extended family, neighbors, educators, and health professionals
has made it a number one resource.

Down-Syn has 450 subscribers to its listserv, which is gatewayed into the
newsgroup; among these are the top professionals and experienced parents and
advocates in the US and around the world. Topics range from support for
couples with a prenatal diagnosis through supported employment and living
arrangements for adults with Down Syndrome. There are strong feelings on many
topics, but a wide variety of perspectives and experiences are available due
to the respect individuals show for others whose opinions reflect great or
small differences.

Sibling issues, book and media reviews, heart surgery, early intervention,
and inclusive education, and humor as well as the best techniques for
teaching reading and math, and support in the tragic early loss of a son or
daughter are other topics that are discussed with great empathy and respect
for the diversity of the community.

About 5,000 babies with Down Syndrome are born in the United States every
year. The national population of individuals with Down Syndrome is estimated
to be 250,000. There are three types of Down Syndrome: about 95% is Trisomy
21, 4% is translocation, and 1% Mosaicism. About 80% of babies with Down
Syndrome are born to mothers under the age of 35.

Most children with Down Syndrome are able to learn to read and write; they
enjoy friendships, little league, and scouts and are interesting people to
know and work with as adults. Parents in the first year of raising a child
with Down Syndrome usually have a difficult time visualizing their child's
real future possibilities.

Holding a baby in their arms while reading the Down Syndrome newsgroup allows
parents to rebuild the hopes and dreams for their child that will create the
opportunities that are needed to open those doors to the future. The support
offered to families of school-age children allows them to continue as
advocates against all odds. The information on programs, support, and
opportunities for teenagers and young adults helps those families find
welcoming communities where their sons and daughters can work, live, and
enjoy their mature lives.

The Down Syndrome newsgroup is a model for others related to raising children
and supporting adults with disabilities. Being the most common diagnosis for
children with developmental disabilities, advocates for individuals with Down
Syndrome, and research into the small accommodations that can help them reach
their individual potentials, have changed the world for people with dozens of
diagnoses. I would give the Down Syndrome newsgroup an A+ in all areas.

Down Syndrome Web resources:
Site for Member-contributed articles:
http://www.nas.com/downsyn/contrib1.html

Thoughts from the Middle of the Night:
ftp://wonder.mit.edu/pub/ok/TFtMotN.txt

Inclusive Education Resources:
http://www.familyvillage.wisc.edu/edu_incl.htm
====
To send a message to other parents and concerned professionals, write to
[e-mail]
To subscribe, send message to
 [e-mail]
with a Subject of No Subject
and a message of
subscribe down-syn <put your first and last name here>
Sending a message <set down-syn digest> to
the list serv address, and all the posts will arrive in one piece of email
once a day.


SUBJECT:  Re:bit.listserv.down-syn Rev  Date:  96-07-23 05:06:45 EST
From:  DNiggl

THanks Pam...You are always there with the information......

SUBJECT:  teacher
seeking info/support  Date:  96-08-01 09:14:58 EST
From:  CLUB RUTH

Hello all,
     This year, I will be getting a student with Down's Sydrome.  He is in
4th grade and is being mainstreamed into my class through our inclusion
program.
     We are receiving services from a special education coordinator, but I
wanted to post this to teachers and families on-line:
     I'd like to know what you have found helpful in dealing with your child.
What techniques have worked best to help them focus and learn?  If you could
envision a supportive learning environment for your child, what would it be?
     I would really appreciate responses to these questions.  I really want
to develop a a good relationship with this student, one that honors who he is
and believes in his potential to succeed.
     Please e-mail me at CLUB [e-mail]

SUBJECT:  Re:teacher seeking
info/suppor  Date:  96-08-02 01:05:03 EST
From:  SusanS29

"     I'd like to know what you have found helpful in dealing with your
child.  What techniques have worked best to help them focus and learn?  If
you could envision a supportive learning environment for your child, what
would it be?"

I don't have a child with Downs but I participated in the education of such a
child outside of a special class. She was in the regular classroom about 60%
of the time and resource room 40%. That's not how it should be done. There
may need to be *some* time outside the classroom, but the school essentially
tried to create a "special class" of one student within the resource room.
That's cruel; children need classmates. In spite of that the child was happy
with her situation.

BUT what should teachers do? Praise! Praise what she can do. Is she in fourth
grade? She will probably not be able to do the fourth grade spelling list.
She may not be anywhere near that. BUT perhaps she could write the initial
consonant -- if the class has the word "principal," her task would be to
figure out that it starts with "p" and write it down -- IF that's the level
she's at.

If the class is adding math problems in the thousands, she could add just one
column (the ones).

The work *can* be modified, and then she *must* be praised for her
efforts.

SUBJECT:  Re:teacher seeking info/suppor  Date:  96-08-06 12:58:26 EST
From:  Ty Reg 2

A great deal depends on whether the student you are expecting is being
integrated into a regular ed classroom for the first time or has been
included from kindergarten, etc.

You will learn more about the student when she arrives, but it's a good idea
to set your expectations just a bit higher than everyone else's.

In second grade, my son with Down Syndrome was drilled on five of the 20
weekly spelling words assigned to his classmates. He did the worksheets in
his spelling book for all 20 words, and participated in classroom activities
for all 20. During the weekly testing, he was allowed to attempt to spell all
20.

Most weeks, he spelled 15 or more correctly; sometimes he spelled all 20
correctly. One week he spelled 16 correctly; the 4 he got wrong were 4 of the
5 that he had on his modified spelling list. That really stumped us!

For math, it's good to work from where the student has progressed, as well as
teaching calculator skills. So, while the other students are working on more
difficult problems, your student with DS (if she is not up to that level)
might want to do a row using a calculator.

Peer tutoring has been found to be of great benefit both to the student with
Down Syndrome and the peer tutors; assigning the student with Down Syndrome
to be a peer tutor to another child is most helpful. My son learned to help
children younger than himself, and is quite charming to watch as he attempts
to read a story to a 2 year old who is missing an off switch, as well as
attentive 4 year olds.

Some resources that you might find helpful are:

Teaching Reading to Children with Down Syndrome, A Guide for Parents and
Teachers
Patricia Logan Oelwein; ISBN Number 0-933149-55-7 Woodbine House,
1-800-843-7323

Teaching Strategies for Children with Down Syndrome:  A Resource Guide (K-6).
B. Tien and C. Hall, Editors.  Jointly prepared by the PREP Program and the
Ups & Downs Assoc. of Calgary, Alberta. Ups & Downs, Calgary Down Syndrome
Association, 1001 - 17 Street NW, Calgary, Alberta, Canada  T2N 2E5. Ph
403-289-4394.   Cost is $15 Canadian.

Disability Solutions (free newsletter)
http://www.teleport.com/~dsolns
9220 SW Barbur Blvd 119-179
Portland Oregon 97219
503/244-7662
email: [e-mail]

Communication Skills in Children
 with Down Syndrome: A Guide for Parents;
Libby Kumin;  ISBN Number:  0-933149-53-0 .
Woodbine House, 1-800-843-7323
6510 Bells Mill Road
Bethesda, MD  20817
[phone]
*(She has an excellent Newsletter: Communicating Together; PO Box 6395;
Columbia, MD 21045-6395
Phone: [phone]; or Fax [phone])
*Before the First Word; by Libby Kumin; Audiotape from the 1995 NDSC
convention: $7 per tape plus $4 s/h; from Professional Sound Images, PO Box
920552, Norcross, Georgia; 30092; 1-800-808-8273

----------------------------------------------
Stimulating speech and encouraging communication
via the use of computers:
Laura Meyers, PhD, 8505 Gulana,
#4103, Playa Del Ray, CA 90293

Love and Learning
Joe and Sue Kotlinski,
P.O. Box 4088, Dearborn, MI 48126-4088
(313-581-8436)
Parents of a child with Down Syndrome have developed a teaching technique
which enabled their daughter to read over 1000 words by age 5.  This method
utilizes videos, audio tapes, and books to help develop language, reading,
and comprehension skills.

Down Syndrome Quarterly
Editor: Samuel J Thios, PhD, [e-mail]
614-587-6338  Fax [phone]
Denison University; Granville, OH 43023

World Wide Web: Down Syndrome WWW Home Page
http://www.nas.com/downsyn/
From this information and resource page there are links
to other DS WWW pages, with information in several languages

National DS Congress: email to [e-mail]
http://www.carol.net/~ndsc/
USA telephone  [phone]

The National Down Syndrome Society
http://www.pcsltd.com/ndss/
USA telephone  [phone]

Alliance for Technology Access
http://marin.org/npo/ata/

Dan's Page
    http://members.aol.com/karenl2888/dan.html

http://www.familyvillage.wisc.edu/edu_incl.htm

SUBJECT:  Down Syndrome  Date:  96-08-09 11:50:32 EST
From:  DKnight112

I am looking for others with a 5 year old boy with Down's. Would like to
share information and accomplishments.

SUBJECT:  Down Syndrome  Date:  96-08-14 20:09:02 EST
From:  AIMEE 205

I will have a Down Syndrome child in my classroom this year.   I am seeking
any available information and help hints on Down Syndrome.  I teach at an
elementary level.

SUBJECT:  Re:Down Syndrome  Date:  96-08-23 01:57:35 EST
From:  PMWilson

Try these resources for teaching children with Down Syndrome and inclusion:


BOOK: Teaching Reading to Children with Down Syndrome, A Guide for Parents
and Teachers
Patricia Logan Oelwein; ISBN Number 0-933149-55-7; Woodbine House,
1-800-843-7323

The National Down Syndrome Society
http://www.pcsltd.com/ndss/
USA telephone  [phone]

Teaching Strategies for Children with Down Syndrome:  A Resource Guide (K-6).
B. Tien and C. Hall, Editors.  Jointly prepared by the PREP Program and the
Ups & Downs Assoc. of Calgary, Alberta. Ups & Downs, Calgary Down Syndrome
Association, 1001 - 17 Street NW, Calgary, Alberta, Canada  T2N 2E5. Ph
403-289-4394.   Cost is $15 Canadian.
----------------------------------------------
Stimulating speech and encouraging communication
via the use of computers:
Laura Meyers, PhD, 8505 Gulana,
#4103, Playa Del Ray, CA 90293

Love and Learning
Joe and Sue Kotlinski,
P.O. Box 4088, Dearborn, MI 48126-4088
(313-581-8436)
Parents of a child with Down Syndrome have developed a teaching technique
which enabled their daughter to read over 1000 words by age 5.  This method
utilizes videos, audio tapes, and books to help develop language, reading,
and comprehension skills.

BOOK: Communication Skills in Children
 with Down Syndrome: A Guide for Parents;
Libby Kumin;  ISBN Number:  0-933149-53-0 .
Woodbine House, 1-800-843-7323
6510 Bells Mill Road
Bethesda, MD  20817
[phone]
*(She has an excellent Newsletter: Communicating Together; PO Box 6395;
Columbia, MD 21045-6395
Phone: [phone]; or Fax [phone])

The Language of Toys:  Teaching Communication Skills to Special-Needs
Children.  A Guide for Parents and Teachers.  Sue Schwartz and Joen E. Heller
Miller. 1988.  Woodbine House, 6510 Bells Mill Road, Bethesda, Maryland
20817.
Toll Free USA 1-800-843-7323.

It Takes Two to Talk:  A Parent's Guide to Helping Children Communicate.  A.
Manolson.  The Hanen Program.  1992.  The Hanen Centre, 252 Bloor Street
West, Room 390, Toronto, Ontario, Canada M5S 1V5.  ISBN 0-921145-02-0.  Ph
416-921-1073.

The Inclusion Home Page
http://www.inclusion.com

Institute on Community Integration
http://www.coled.umn.edu/iciwww/
(linked from the DS WWW page)

Axis Consultation & Training
http://www.almanac.bc.ca/~axis/
Norman Kunc & Emma Van der Klift
[e-mail]

TASH email:  [e-mail]
Executive Director Nancy Weiss   [e-mail]


The National Down Syndrome Congress: 1-800-232-6372


SUBJECT:  Down Syndrome and PDD  Date:  96-08-31 23:56:04 EST
From:  AkRhodey

our 9 yr old daughter with high functioning DS was just diagnosed with
Pervasive Developmental
Disability,  Does any one have a child with this diagnoses?  Amy is very
verbal although
every thing she says she has heard before.  She can read the wall street
Journal but does not
comprehend.  She has memorized 100's of video tapes ,  But isnt particularly
interested in friends
or people.  She has ADHD, some OCD, is very oppositional and has wonderlust!
We have all
most all of the usual DS books but they don't seem to apply. Amy was a
preemie has had
10 surgeries (2 major) tube fed til age 2.  Medically fragile til age two.
then suddenly out
emerges a very bright beautiful little girl!  Please Email me at
[e-mail]  If this is your
childs diag or if you have resourses ideas... thank you!   AKRhodey

SUBJECT:
Parents of children with DS  Date:  96-09-08 09:02:04 EST
From:  RNerenbaum

My family are new to AOL, my wife was just looking at the education portion
of the program and is amazed at the things she has been reading.  We have a
son, Adam who is 14 with DS and have had had time with the school system and
had great time with the system.  We think the thing that made a difference is
that she did not take "NO" for an answer.  She took Adam to the School Board
Meetings,She wrote the IEP before the teacher started and everything she
wanted she got.  Last year Adam's speech teacher told her that she throught
he could do without ST and she said no and we have speech this year.  He has
every good communication skills and he gets along with all the students at
school.  Matter of fact, he has been voted most popular by his peers.  My
wife was 27 years old when she had Adam and the day she got home from the
hospital she got on the phone and got what she wanted.  An Early Intervention
Program was started with just three DS babies and I am glad to say that all
three are doing wonderful in school.  Adam is in the 8th grade and is
included in other classes, but the teachers he has are theacher who want to
teach him and that is the thing as parents we have to watch for.  I want to
chat with other concerning school and I feel the my school system has been
very supportive.

SUBJECT:  Re:My first message  Date:  96-09-09 21:00:33 EST
From:  MnopFER

first of all your daughter is not down syndrome. she is a child who HAS down
syndrome. you must be consistent with her punishment it takes awhile before
they understand why they are being punished. stick with one type of
punishment and be firm.


SUBJECT:  Re:Parents of children with   Date:  96-09-09 21:09:35 EST
From:  MnopFER

I agree you must tell the school system what you want for your child.  My
daughter is 8 and has ds. She has been fully included since kindergarten. She
is doing wonderful and has a few really good friends. Our school is very
supportive and that makes a big difference. Noy to say that I don't need to
be on top of things because I do.

SUBJECT:  Kindergartner with DS  Date:  96-09-10 23:59:08 EST
From:  Psalm51 12

hi. I am a non-certified teacher who has no experience with Down's....and in
my morning daycare, I have a 6 1/2 yr old boy who has DS....and I am at my
wit's end on what to do. I have him for 4 hours a day before he leaves on a
school bus to attend a public school kindergarten. I have written to his
teacher to ask for help with strategies with him...as he's very defiant and
becoming destructive. It is very hard to deal with, as I have 14 other
children without an aide. He LOVES music..how can I incorporate lessons that
will keep him busy, also? Any ideas, help, books, and tips would be MUCH
appreciated...Kerri York

SUBJECT:  Re:Kindergartner with DS  Date:  96-09-13 00:05:33 EST
From:  C1ndysue1

I would suggest coming to the Inclusion Chat held in the Health Forum
(keyword PEN) on Thursday nights at 10:00 ET.  Both facilitators are parents
of children with Down Syndrome and there are many helpful parents who join
in.

Cindy

SUBJECT:  Re:Kindergartner with DS  Date:  96-09-16 16:49:30 EST
From:  Boulevard

Since you are having concerns, I'd suggest you ask to be part of the
student's core team.  In many school districts, there are behavioral
specialists/integration facilitators, etc.  who can come to your setting,
observe & offer suggestions.    As far as what would work w/music, I know my
son (now 9 with DS) loved videos & sing a longs.  I created a visual reminder
that he could look at (on a 3 x 5 card) of his favorite videos/tv shows, that
the teacher could show him periodically throughout the day.  They were using
a happy face, sad face, straight face visual schedule w/him (the day was
broken down into circle time, snack, bathroom, etc...).  We'd set a goal (eg
if he had 2 sad faces, he didn't get to watch Sesame St.,,  more than that,
he didn't watch  Sesame St. or listen to his Raffi tape, etc.)...  If the
parents will reinforce this routinely at home, it should help.

SUBJECT:
Reading Topic  Date:  96-09-16 22:52:46 EST
From:  C1ndysue1

Last week in the Health Conference room, we held a chat with the topic being
reading.  Emily Kingsley was there to give out so many good tips and
suggestions...even for those of us with small kids.  The chat has been
uploaded to the disabilities software library.

Future topics will include:  Adult issues, art therapy, sibling issues,
dealing with behaviors and more.  The topics are held in a biweekly
basis...alternating with open discussions.  I do keep the mailing list for
chat topics, if anyone hasn't received email from me lately, please drop me a
line and I will add you to the list (please mail to PEN CINDY).

Cindy

SUBJECT:  Message from a Teacher  Date:  96-09-18 09:16:55 EST
From:  C1ndysue1

Thought I would share this message with you.  For those who haven't been to
http://www.downsyndrome.com (Family Empowerment Page), there is an icon where
parents and others can post messages.

Topic: Education

    I used to teach special education, and had a number of students with Down
    Syndrome. I want to encourage all families --although the physical
characteristics
    may be obvious, and may lead some people to believe people with Down
Syndrome
    can't achieve much, the realities are that they may be able to do a lot.
I had one
    student who read close to grade level, although his comprehension was a
little lower.
    One of my greatest heartaches was when his parents decided not to send
him to an
    adult program after high school, but just kept him at home instead. I'm
sure he could
    have easily worked in an office somewhere, answering phones, filing, etc.
He
    probably could have lived independently. I've also seen the difference in
children who
    got early intervention and those who didn't, as well as those who were
expected to
    behave like anyone else, and those who weren't. Just like with any other
child, if you
    expect them to achieve to the best of their abilities, they certainly
will!

SUBJECT:  Re:Message from a Parent  Date:  96-09-20 06:01:52 EST
From:  RNerenbaum

Cindy, I am a parent of a child with DS and I have to agree with you on
everything you said in your message.  If you expect a child to achieve more
they will.  Adam is one who was expected to achieve more and the more we
expected out of him the more he wanted to do.  We are now in 8th grade and
doing just wonderful. He reads very well. and has a wonderful outlook on
life. I agree that the parents of your student should have sent thir son to
an Adult program after high school and yes he probably could have worked in
an office somewhere.  When Adams was little doctors at Emory University told
us they they expected Adam to graduate from college and they still say that
when they look at test scores and look at the type of work he is doing.  Just
because one student did not go on to the work world, don't give up there will
be one who will.

SUBJECT:  RE:Down Syn & staring episod  Date:  96-09-20 21:18:30 EST
From:  Himmelsbac

I have an 11 year old son with Down Syndrome.  Four years ago a teacher
noticed that my son stares off and seems to "shut down" on occasion.  Another
teacher 3 years ago witnessed my son's staring episode and thought he had a
possible seizure (non-convulsive) as he seemed disoriented when he "came out
of it".  He had a neurological work up along with EEG that showed everything
as normal.  For the passed 2 years his teacher has witnessed periods where he
shuts down, but felt it was my son's way of saying he was overwhelmed.
Yesterday his new teacher witnessed his spell.  She said it occured in the
afternoon when he was tired.  We are not sure what to make of all of this.
I've asked the teacher to keep an eye on him and document what she sees, in
case we need to see the neurologist again.  Has anyone had children with D.S.
who have displayed similar behaviors?  What have you done?  Have you found a
possible cause?  What should we look at that may be causing this behavior in
my son?  Thanks for your help!  Himmelsbac

SUBJECT:  Re:Message from a Parent  Date:  96-09-22 00:04:07 EST
From:  PEN CINDY

Just for clarification...I did not write that..a teacher posted that on my
web page and I cut and pasted over to this board.  I do have dreams for my
child...just like I do for my other children.  I do know of some young adults
with DS who are in college now..or post high school programs where they are
still receiving a wonderful education.

Please feel free to come to the DS chat this Tuesday night where our topic
will be on adult issues...would love to have you there!!

C1ndysue1
PEN Cindy

SUBJECT:  Re:RE:Down Syn & staring epi  Date:  96-09-22 00:07:22 EST
From:  PEN CINDY

Himmel,

      Did your child have a 24 hour EEG or just a brief one?  Documenting is
a good thing that you are doing.  I don't have specific answers to your
questions since I am not a doc....I would certainly call the neurologist for
a visit though.

Cindy

SUBJECT:  DS and staring episodes  Date:  96-09-23 16:50:03 EST
From:  Himmelsbac

Thanks Cindy for your input.  I will remember to ask about a 24 hr. EEG if we
need to persue this.  Did speak to a mom who has a son with similar episodes.
She said they are triggered when he is hungry or tired.  She also said that
her son's EEGs appear normal.

If anyone else has any info or comments to help out, I'd love to hear from
you.

Thanks

Marianne


SUBJECT:  Poem about Down's and Denmar  Date:  96-09-28 10:10:48 EST
From:  KDills

I absolutely have to have a copy of a poem published in "Dear Abby" or "Ann
Landers" several years ago about Down's.  It has to do with a Mother planning
a trip to France (?) and ending up in Denmark.  Tyne Daly also read it in a
made for TV movie about a Mom advocating for her Down's Syndrome child.  I am
a SPED teacher and am producing a multimedia presentation about inclusion and
this poem came to mind.  I HAVE TO LOCATE IT!! Please help - I know this
medium is faster than the US mail!! Thanks - please e-mail me with a copy of
the poem if you know anything about it!  Thanks again! [e-mail]

SUBJECT:
Re:Poem about Down's and Denma  Date:  96-09-28 20:53:48 EST
From:  SusanS29

It's not a poem, it's an essay. The mother expected a trip to fast-paced
"Italy" but ended up with slower-paced "Holland." the rest of the essay talks
about the undiscovered joys of "Holland."

I think it was published originally in the magazine EXCEPTIONAL CHILDREN. You
can probably find it at your local library.

SUBJECT:  Re:Poem about Down's and
Den  Date:  96-09-28 22:23:58 EST
From:  KO Stuff

Hi all,

Actually it is a Trip to Holland. It was written by Emily Pearl Kingsley.
Tyne Daly played Emily in the movie, " Kids Like These ". Emily's son Jason
has Down Syndrome. He and a friend of his co-wrote a book called " Count Us
In ". Emily writes for Sesame Street and Jason was the first child with a
disability to be on it. Emily frequently joins us here on AOL for the DS
Tues. nite chats.
If you go to the website  http://www.downsyndrome.com  you will find a place
to see a copy of this poem.
Please join PEN Cindy and myself ( PEN Sandy ) on a Tues. nite ( 9pm ET ) in
the Better Health room of the PEN forum. Introduce yourselves and let us know
if it's the first time that you are there. We'd love to see you all
there......just go to keyword: PEN...then click chat rooms...then click the
Better Health icon at the bottom.
Also check the private room: Down Syndrome.....many of us are always in and
out of that room, looking for friends and family of DS folks to chat with.

Looking forward to "meeting" you all;-)

Sandy ( PEN Sandy )

SUBJECT:  Re:Poem about Down's and Den  Date:  96-10-03 00:08:18 EST
From:  C1ndysue1

c1987 by Emily Perl Kingsley. All rights reserved.

Welcome to Holland

I am often asked to describe the experience of raising a child with a
disability - to try to help people who
have not shared that unique experience to understand it, to imagine how it
would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip
- to Italy. You buy a bunch of
guide books and make your wonderful plans. The Coliseum. The Michelangelo
David. The gondolas in
Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your
bags and off you go. Several
hours later, the plane lands. The stewardess comes in and says, "Welcome to
Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm
supposed to be in Italy.
All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and
there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting,
filthy place, full of pestilence,
famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new
language. And you will
meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than
Italy. But after you've been there
for a while and you catch your breath, you look around.... and you begin to
notice that Holland has
windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all
bragging about what a
wonderful time they had there. And for the rest of your life, you will say
"Yes, that's where I was supposed
to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss
of that dream is a very very
significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy,
you may never be free to enjoy
the very special, the very lovely things ... about Holland.

SUBJECT:
Willowbrook.....25 Years  Date:  96-10-08 21:01:54 EST
From:  KTnyc

As a sister of someone with Downs Syndrome, I have produced a documentary
called  "UNFORGOTTEN...25 YEARS AFTER WILLOWBROOK"  It traces the lives of
people who lived at and families involved with Willowbrook State School.
It will be showing at Sunset Theatre 5 in LA from October 25-31...we have to
make sure that Willowbrook and all other institutions are "UNFORGOTTEN"
E-mail if you'd like

SUBJECT:  networking  Date:  96-10-14 00:38:02 EST
From:  CROWNST

i'm interested in talking with other parents around the country who have a
child with Down
syndrome....about l2 yrs old....5th, 6th or middle school....boy.....  We
live in Los Angeles
and have been challenged by the school system for years.  Our son is a fully
included
student.  Looking for a middle school where full inclusion is the practice or
is being adopted.
Look forward to hearing from you through AOL or E-Mail......CROWNST


SUBJECT:  inclusion  Date:  96-10-14 20:34:31 EST
From:  RNerenbaum

I have written before and have been reading everything that everyone has to
say about inlcusion. And the one thing I have a problem with is what is so
important about having your child in full inclusion.  I schools are having
record enrollments this year all across the country and with upto 30  or more
kids in a class why in the world would you want to put your child in a class
that size when you have a choice.  I have two other children and would love
to have them in a class of 15 or less.  Oh! don't get me wrong I like having
my child in regular classes but I can't see doing this full time.  Is it to
have them invited to a party, it is to socialize?  I don't really understand
all the up roar about this.  People in my school district understand me 100
percent when I talk about this.   I feel that I live in a very supportive
district.  I know we get everything we want.  Please would someone really
explain to be what the ultimate goal of having full inclusion?  Thank you so
much snerenbaum


SUBJECT:  Re:inclusion  Date:  96-10-17 08:38:32 EST
From:  SusanS29

"And the one thing I have a problem with is what is so important about having
your child in full inclusion.  I schools are having record enrollments this
year all across the country and with upto 30  or more kids in a class why in
the world would you want to put your child in a class that size when you have
a choice. "

Some children (even with Downs) do better socially *and* academically with
full inclusion.

I saw this with my own eyes in 1980, long before "Inclusion" was an
educational word.

SUBJECT:  Re:inclusion  Date:  96-10-18 18:45:51 EST
From:  O4KIDS2LUV

Not only do children learn more in an inclusive setting (their peers are
their best teachers), but the children with IEP's are also teaching children
without disabilities.  It's these non disabled children who are our future
business leaders.  Growing up and being exposed to someone with a disabilitiy
brings down many barriers.  These future business leaders are also future
employers.



SUBJECT:  Re:inclusion  Date:  96-10-19 01:55:45 EST
From:  CROWNST

Please don't refer to children with Down syndrome as "Downs"....thank
you

SUBJECT:  Re:inclusion  Date:  96-10-19 01:57:42 EST
From:  CROWNST

and hopefully future teachers who are more willing to provide positive and
re-enforcing educational
environments for children with disabilities who are fully included....it will
seem quite natural to
them and they experienced the benefits are children themselves.....yes!


SUBJECT:  Re:inclusion  Date:  96-10-19 02:07:10 EST
From:  CROWNST

i wish i knew where to start as to why inclusion is so important....

it's late so i'll just begin....first of all there is an assumption that a
smaller class makes for
a better class.  it seems to me that a good teacher in either size class is
really what you
are looking for.

special education classes/special day classes are not so special around the
county.
children in sdc do not necessarily get a better education....many are still
learning how
to write their names  legibly(sp?) rather than learning phonics and how to
read.....

many special day classes keep children in the same place forever....one
parent said tht
her child was learning the color blue for one year....

some special ed classes are wonderful, i am sure....; however, many do not
offer
educational opportunities that parallel those in a general ed class.....

why shouldn't special education students learn about the solar system and
Christopher
Columbus, etc.

We wonder why are children have so much trouble adjusting to the mainstream
word when
they leave school...yet, we don't allow them to practice in the real world
like children without
disabilities.

No, it's not for the parties......although that's a nice bonus when it
happens....it's for a sense
of belonging.....the right to belong.....not a privilege that is earned
because you are the
same.

children with severe disabilities who are in separate classes may not have a
sense of
belonging as the other children who are in general ed classes do.....they
know they are
separate....

i am tired and am not sure i am even making sense at this hour....let's talk
again......

full inclusion is a value....you either believe in it or you don't

there is so much to say about the positive benefits to everyone...good night




SUBJECT:  Re:inclusion  Date:  96-10-19 08:14:58 EST
From:  RNerenbaum

My son is learning about christopher columbus, he learned how to write his
nme several years ago. I know that this is not what most people think of as a
typical special education class.  If you were someone off the street and
walked into this class you wouldn't know it was a sp.ed. class. Over half of
these students are out of this class more that they are in it.  My son being
one of those.  I just like having the self contained as a support.  I look at
it as being really no different that a resource class or a speech class.
Matter of fact my son is one of the post popular students in the school.
Everywhere we go there is a student that comes up to him and speaks to him.
His girl friend is a non-disabled student.  My thing was that parents who
don't have there children in a full inclusion class seem to get more flack
from the one who have students in full inclusion classes.  I ask my son what
would he rather do be in Mrs. X class or would he rather he be in Mrs. B
class.  I really don't have to worry about pushing for full inclusion like I
have stated before I have teachers coming to me wanting my child in there
class because thye see that he can do the work.  In my eyes that is true
support from the general ed teacher.  I don't want my child in a class where
he is not wanted.  The same goes for my girls if I see that the teacher and
my daughter are not getting a long them I make the move to have the change.
Maybe you live where there is also not much diversity.  Where there are
students who are all on the same level.  I choose to live in the real world,
where my kids go to school with all culturals and that they can grown up to
get along with everyone.  In all my years in public school I have heard the
special education class referedn to the "retarded class" three times.  I make
a point to let teachers know I would like to talk to there class about
special needs and when I leave students have told me later that they have a
different outlook on disabled.  We are all not perfect we all have some sort
of disabality.  My son has a goal of working at the state capital.  In what
area, I don't know.   Who knows.

Do not get we wrong I value your points of view, but in the same respect you
have to see mine.  I still believe that inclusion is not for every student.


SUBJECT:  Re:inclusion  Date:  96-10-19 10:59:55 EST
From:  SusanS29

CROWN while I sympathize with your view, we have to remember that people are
posting as fast as they can online.

In this forum it is the policy not to criticize another's post over spelling,
grammer, punctuation or construction. Lead by example. Put it better in your
posts ("children with Downs Syndrome). But we're not  going to micro-manage
how people word their posts.
The clock is always ticking when people post, and it costs people real money
to go back and edit before clicking on "Post."

"Children First" is a great philosophy but it's not editorial policy.

Thanks.

SUBJECT:  Re:inclusion  Date:  96-10-23 21:49:14 EST
From:  CROWNST

R. Nerembaum:  hope i spelled your name correctly...although i don't think i
did.

you are lucky to have such a supportive school and i can certainly appreciate
and understand
your choice....it sounds like the best one for your son.

However, my son is not on grade level...and he would not be welcome
in/mainstreamed in other
classes....so my choices are far more limited than yours......

my choice of inclusion allows my son, what your son already has.....time in
the real world with
real people......

sounds like we're both doing the best for our sons....talk with you again
soon

SUBJECT:  Re:inclusion  Date:  96-10-23 21:53:16 EST
From:  CROWNST

SusanS29....sorry I don't quite understand what you are referring
to....although your post certainly
sounds more angry and hostile than caring and concerned....did that sound
like I was criticizing....or just expressing my feelings?????

And, as far a children with.....Down syndrome.....not Downs Syndrome....what
was it I said that
made you so upset....

Listen....I agree, time is money....bye

SUBJECT:  Re:inclusion  Date:  96-10-24 21:11:16 EST
From:  SusanS29

No one is upset, honest.  :)

On the other hand I am asking people not to critique each others' posts.

SUBJECT:
Re:Down Syndrome  Date:  96-10-29 13:46:19 EST
From:  Down Syndr

My name is Sarah Sander. I am the mother of a 7 year old son who has Down
Syndrome. I am also the editor of a magazine called "Down Syndrome Amongst
Us". It is 'the orthodox Jewish version of Down syndrome' that is being
compared to 'Exceptional Parent' magazine.
I welcome all types of contributing articles, poetry, personal experiences,
etc.
Please E-mail to my address: Down Syndr @aol.com

SUBJECT:  Parent in denial  Date:  96-10-31 10:02:46 EST
From:  DotHart

I am a special education teacher of primarily Spanish speaking children.  I
have one little girl in my class who has Down Syndrome.  Her mother is very
accepting and loving, but her father does not accept her condition.  He
favors the older, "normal" child, and even belittles the girl by calling her
names.  I am looking for clear, simple magazine articles, written for
parents, that talk about Down Syndrome, and that offer insights, suggestions,
empathy, (possibly from a father's point of view), etc.  If anyone knows of
any material in Spanish, that would be most helpful, but we can translate if
need be.  Thanks!

SUBJECT:  Re:Parent in denial  Date:  96-11-01 08:02:03 EST
From:  RNerenbaum

You might want to contact the national down syndrom office to see if they
have any information in spanish.  depending on the way the father was raised
may be the reason he is in deniaal.  in some culturas they believe that when
you have a special needs child this is a punishment for something you have
done in the past.  Also, if you have a Down Syndrome Association in your city
they may be able to help you.  i will check post later.  sara nerenbaum

SUBJECT:
Re:Down Syndrome  Date:  96-11-03 22:14:36 EST
From:  Down Syndr

Fellow Onliners! Please submit appropriate reading/writing material for my
magazine "Down Syndrome Amongst Us" - a magazine geared towards orthodox
Jewish families affected by Down syndrome. It is, however, very appropriate
for non-Jewish readers, as well.
Please contact me at Down Syndr @ aol.com

SUBJECT:  teacher seeking info  Date:  96-11-21 22:19:52 EST
From:  Jumbo332

In the next month we will be recieving a down syndrome child in our building.
I am an inclusion coordinator but I have no informatioon on down syndrome
children.  My incluion teacher would like some information to help her better
understand him. Please e-mail me with any helpful info.
jumbo332@aol

SUBJECT:  Re:teacher seeking info  Date:  96-11-29 12:52:25 EST
From:  Okuhara

Try this internet path:
www.yahoo.com
Health:diseases and conditions
Down Syndrome

This should get you to a list of references and other websights.  Hope it
helps.


SUBJECT:  Re:teacher seeking info  Date:  96-12-01 11:35:56 EST
From:  RNerenbaum

to better understand the child coming into you school, why not have  meeting
with the parents and discuss what you and the parents can do for the child.
it seems to me that you can look at everything on the Internet but that does
not give you a full picture of the child .  Remember that every child with DS
is different.  Maybe, the parents have the same concerns about you as you do
about there child.  Remember also, every teacher is different.

SUBJECT:
Re:teacher seeking info  Date:  96-12-04 22:53:20 EST
From:  PEN CINDY

There are alot of resources out here.  There is a newsletter called
Disability Solutions which had a nice article about a family who comprised a
portfolio about their son called the MAC book.  You can read this article at
this web site: http://www.teleport.com/~dsolns.  I can't express how
wonderful this idea is for the child, parents and teachers.  A must see site.

There are dozens of web pages for Down syndrome.  I can forward you a
complete list (from DrLen1 who updates the list each month) if you want, just
let me know.  You can start with this one and start surfing from there (there
are educational links as well):http://downsyndrome.com.  I'm a bit biased,
this is my site and I really like it :)

If you have specific questions, I also encourage you to come to the Inclusion
Chat held in the Health Conference room (keyword PEN, DIS or Better Health)
at 10:00 ET on Thursday nights.  Both facilitators of that chat have children
with Down syndrome and are resourceful when it comes to inclusion
information.

If you have anymore questions, please don't hesitate to write me.

SUBJECT:
Re:teacher seeking info  Date:  96-12-06 05:14:56 EST
From:  RNerenbaum

I agree with PENCINDY the Down Syndrome Web page is a very good sorce for
infor concerning DS.

SUBJECT:  Needed sample DS newsletters.  Date:  96-12-06 19:11:58 EST
From:  Nnancyn

I am condsidering writing a DS newsletter for my area.  I would like samples
from all over.  Someone offered to send me some, but I "lost" her email
address to send my snail mail one to. If you can help with DS e'mail or
regular newsletter, please email me. Thanks, Nancy

SUBJECT:  Teacher of TMR
(incl. Downs)  Date:  96-12-07 20:20:23 EST
From:  WHitchins

Eager to exchange ideas with other teachers on teaching tmr at middle school
level.  I am on a regular middle school campus and am the only tmr teacher.
I've been doing this for 11 years and have taught tmr for 16 years.  You show
me yours and I'll show you mine.  Seriously, let's share.  I find Email
easier to keep up with.   [e-mail].  Specify Wilma.

SUBJECT:  Re:Teacher
of TMR (incl. Dow  Date:  96-12-08 01:22:11 EST
From:  C1ndysue1

Wilma,

     Sharing ideas with other teachers is a great idea.  I think you will
find that the some of the best "teachers" are the parents themselves.  The
Inclusion chat on Thursday nights at 10:00 ET in the Health Conference room
(keyword PEN) is a great place for parents and educators alike to share
information.

     I am a bit curious to know why "TMR" is used at your school to classify
students.  If you have access to a DSM-IV (Diagnositic and Statistical Manual
of Mental Disorders) please read page 41.  I will briefly quote what is found
in this manual "This outdated term should not be used because it wrongly
implies that people with Moderate Mental Retardation cannot benefit from
educational programs."  The same quote can be found in the DSM-IIIR on page
32 that was published in 1987.  The school psychologist should have the
DSM-IV.

      I am hoping you are able to find some new ideas for your students.
It's great to see a teacher come to the boards to get information!!  I look
forward to reading your ideas, too.

Cindy

SUBJECT:  Re:Needed sample DS newslett  Date:  96-12-08 01:30:24 EST
From:  C1ndysue1

Nancy,

     TerriKevin writes her groups (PODS in Northern Va) newsletters which are
always packed full of information.  I also gave your screen name to another
onliner who sends out her group (Tidewater DS Association, Va)  newsletter,
which is also great, snail mail and email.  She will be getting back to you
soon.  Both of these DS groups are very active and in fact the Tidewater
Group was given an award at the NDSC convention this year.

Hope this helps and Good Luck with your newsletter!!

Cindy

SUBJECT:  Re:Parent in denial  Date:  96-12-08 01:37:42 EST
From:  C1ndysue1

Check these two web sites for information that may be in Spanish:

Mexico:  Resources in Mexico
    http://www.nas.com/downsyn/mexico.html
 Spain:    Web de las Personas con Sindrome de Down en Espana
    http://antonio.fa2.cie.uva.es/down/

Cindy

SUBJECT:  Re:Teacher of TMR (incl. Dow  Date:  96-12-10 09:20:58 EST
From:  SusanS29

"     I am a bit curious to know why "TMR" is used at your school to classify
students. "

Individual public schools can't choose the labels they use. That's done at
the state legislative level. Unfortunately they aren't obligated to change
their labels to conform to increased knowledge, so schools are stuck with
whatever labels are chosen by the state they teach in.  :/

SUBJECT:  Chat Rooms
RE: Inclusion/DS  Date:  96-12-25 01:48:35 EST
From:  Jmrw

I am a parent of a child with Down Syndrome. I work in the field of
disabilities also.  I have been a general education teacher with special
education students as class members. I have worked in the field of Early
Intervention, and now I coordinate a federal grant at a university.  I also
service as an adjunct professor for one class that is required for students
who wish to become special education teachers.  My family is new to AOL and I
am wondering if the chat lines I read about in old message board notes still
function.  If anyone has information to share please E-mail me at
[e-mail]  ... Thank you and hope to share ideas with the group soon.
Jan

SUBJECT:  Re:Chat Rooms RE: Inclusion/  Date:  96-12-25 13:43:53 EST
From:  C1ndysue1

I responded privately to Jmrw.  The inclusion chat is still there as well as
the Monday and Tuesday night Down Syndrome Chats.  You can access these by
using Keyword PEN (ctrl K), then click on chats, then click on Health
Conference.  There are several DS folders located in this area as well.

Here is the Chat schedule:

Monday 9:00 PT (PEN MARYAZ and PEN SHERRY will be there to greet you)
Tuesday 9:00 ET (PEN CINDY and PEN SANDY will be there to greet you)
Thursday 10:00 ET is the Inclusion Chat.  Eg 12 and KarenL2888 are
cofacilitators for this chat (BTW, both have children with DS)

Each chat only last an hour.  After the hour is up, you can find us in the
private room Down Syndrome.

SUBJECT:  DS PDD ...  Date:  97-01-10 03:06:59 EST
From:  AkRhodey

We have a very spunky little girl who has the above as well as behavior
challenges... Ever
Since Amy got over ( around age 2 after several surgeries and lots of work,
tube fed...)  the titles of  "medically fragile and failure to thrive"  and
at that time considered "severely delayed"... She Now  is quite the little
whipper snapper!!  Hyper sums her up best I think!  Autistic tendencies have
been discussed since she memorizes everything she sees and hears (ie videos)
she is very stuck in ritualistic behavior and she can read anything you put
before her (she doesnt comprehend tho)  The difference is that she is VERY
verbal, too much if you count the embarassing things she says to people She
mostly says things she has heard before.  Especially the mean things so
people will leave her alone.  A is not affectionate at all, she really
couldn't care less about others.  Only her daddy is important, But she
doesn't care to please him either.  A has some awesome abilities but her
behavior gets in the way.  She now takes a med to help with this.  Med is not
a stimulant, that made her even more obsessive...   Did I happen to mention
how cute she is!  Does anyone have a little cherub like Amy?  All of the DS
books we have don't seem to talk about a child like Amy.  She is 9 and quite
small, youngest of three children, inclusive ED but she'd rather not bother.
Feelings are not discussed by her she doesn't care about much, but, her
computer, videos and books! If this decribes your child please E-mail me
[e-mail]
 Thank You!   from Amy's folks

SUBJECT:  Re:DS PDD ...  Date:  97-01-10 19:49:28 EST
From:  TLVAIL

Dear AK...  Take a peek at the Asperger's board.  Anything sound
familiar?

SUBJECT:  Re:DS, ADD and Ritalin, etc   Date:  97-01-12 10:54:24 EST
From:  LesleyK105

My son, with DS, tried Ritalin, and his reaction frightened me.  He acted
spaced out and frightened.  Now I realize he was overly medicated.  However,
I knew of another medication that only needs to be given once a day, does not
tend to interfer with appetite, and does not have the typical rebound.  It is
called "Cylert."  Most people don't know about it.  My son has used it for
three years.  The last time we moved his dose up, we all noted in our
diaries, that his speech dramatically improved.  The improvement diminished
somewhat after two weeks, however, over all, it has remained improved.  It is
clearer and he can use much longer statements that communicate his thoughts
much better.  I do not know why this is, but four of us noted it
independently and three did not know his meds had changed.  His behavior
improved dramatically, also.  He no longer needs a "behavior plan."  Of
course we have learned much better ways of helping him within  his
environment, also.  Positive behavior support is a must for all kids, but
especially kids with challenges such as ours have.

SUBJECT:  Re:Young Parents  Date:  97-01-12 11:02:05 EST
From:  LesleyK105

When we were trying to adopt a baby with DS, we applied to adopt a 3-month
old baby with a bio-mom in her teens and the father was in his 50's.  That's
what we were told.

SUBJECT:  Re:DS PDD ...  Date:  97-01-13 03:27:59 EST
From:  AkRhodey

Yes TVail it has been suggested by a  child psych from Wash St U.  Have you
heard of
kids with DS and AS?  Resourses?  We are fairly new online...  Are you a
parent of a child with
DS?       [e-mail]

SUBJECT:  Re:DS PDD ...  Date:  97-01-13 19:29:00 EST
From:  TLVAIL

No, but that's what your post made me think of.  I would assume that there
would be no reason why you couldn't get DS and AS characteristics in the same
child but I've never seen it.  They are two totally different disorders.
Check out your local Autism Society for info on Asperger's of check the old
listings on that board.  Good luck and please keep us posted on what you find
out!

SUBJECT:  Re:Mosaic Down's  Date:  97-01-14 19:28:09 EST
From:  KayeFam3

Hi. I have a ten year old son with Mosaic Down Syndrome.  He is in a regular
4th grade class, recieves resource help and therapies, participates in a
challenger league baseball team, but basically appears to be a pretty normal
kid with some learning problems.  He is not like other kids with Down
Syndrome, or Learning Disabled kids, or most regular kids.  I'd have to say
that he has a unique disability, and is a very special individual!  He is a
very caring warm individual with social/emotional profile similar to other
children with Down Syndrome.  Life has different challenges for him than
other kids with DS--he has more awareness of his disability, and is very
motivated to keep up with his peers in all ways!  Hope you find this
response, I see your note is an old one.

SUBJECT:  Re:Mosaic Down's  Date:  97-01-15 15:46:41 EST
From:  RNerenbaum

Kaye, I ahve a fourteen year 0ld so with Down Syndrome and he feels the same
way your so does, but he doesn't ave Mosaic Down's.  Can you tell me an other
things you notice different in him?  If you would like you can E-Mail me at
[e-mail].

Thanks.

Sara Nerenbaum


SUBJECT:  Re:Mosaic Down's  Date:  97-01-20 15:00:09 EST
From:  KayeFam3

How to describe him,  My son is very concrete in his thinking, but on grade
level in school.  Sometimes he learns the steps, for say how to add or
multiply, without understanding the concepts until later.  I think that it is
this risk taking style of learning that allows him to keep up in school.  He
has asked some very difficult questions about his disability which show
incredible insight...Why? How? Did I hope his younger brothers would not have
DS? Was I sad he did?:(
He has asked about whether he would go to college since school is
harder...nothing easy to answer!   His reading comprehension is great, except
when he tries to read silently.   He also needs help doing his homework, just
to stay on task, not loose his focus, and put correct answers in correct
place.  His physical features don't look like DS, but he has some orthopedic,
digestive, and tone difficulties which are characteristic of DS.  In
conclusion, he is a very unique person!

SUBJECT:  Re:Mosaic Down's  Date:  97-01-21 19:05:15 EST
From:  RNerenbaum

KayFam3:

There is hope about College.  I am Gwinnett County in Georgia and we have a
College Bound Fair for Special Needs Kids.  This is the only one like it in
the United States.  I had the same feelings concerning my son going to
College and when I went one year I found that he cound go to college and ALL
the help he would receive.  If you would like more information please e-mail
me [e-mail].

Sara Nerenbaum


SUBJECT:  Re:Young Parents  Date:  97-01-24 22:57:03 EST
From:  KYTOYMOM

Hi!  My husband & I recently became members of AOL, (I know, my
brother-in-law said, "Welcome to the 20th Century!"). . . Anyway, I was just
browsing through here, & clicked on
this topic because I am a former Sp. Ed. teacher, & I have a wonderful DS
sister, Beverly.
My mom was in her early 20's when Bev was born. I was 14 months old, so I
can't remember life before her. I have always loved her dearly. . . I feel
that I am a more sensitive & caring person because of having a special person
in my life. She was a beautiful bridesmaid in my wedding 6 years ago! I think
she had more fun that day than I did! I was nervous & upset about silly
details, & she was having a ball!  My girlfriends curled her hair & put
make-up on her, & she giggled & glowed all day!  And now, my two sons, ages 4
1/2 & 15 months, have an "Aunt Bevie" whom they love to giggle, play &
wrestle with. . .My oldest (who is very bright, of course!) has never asked
any questions or made any comments about the fact that she is different in
any way.  I think (& hope!) that my children will grow up, like I did, being
perhaps a bit more tolerant & acceptant of those whom the world may determine
to be "different, odd, or less fortunant than others. . ."


SUBJECT:  Help w/ saftey!!!!!!!!!!!!!  Date:  97-01-25 18:10:12 EST
From:  JKaplan29

Boy do I need some help! I have a student with DS in my class.  She  is 9
years old and understands English and Spanish (school instruction in 95%
English and 5% Spanish due to parents request but only Spanish at home).  F.
can say approx. 15 words in english and spanish and knows approx. 20 signs
(prob  understands more but can be stubborn!) Anyway...... F. likes to RUN
AWAY from home and school.  She has no concept of saftey. She has almost been
run over by a semi.  F. is very GOOD at running! She may not try for a few
months and then given an opportunity she will take it.  SHe will hide in
strangers houses, behind objects..... The classroom and her home now have
door alarms but it is hard for her family to use because they have 7 other
children running in and out. I purchased a id bracelet and have had police
officers frequently visit the classroom so F. is no longer afraid of them.
We have not been able to determine any precursers except of course
attenction??...  F. is not motivated or does not understand sticker rewards,
charts, timeout (she fell asleep).......... I'm afraid for her saftey!  I'm
trying to get mom some parental support from a Spanish speaker.  I know that
F. rules the roost.  She copies the other student negative behaviors at home
to get her own way (which she always get).....Whew I know it is alot.  You
can post or Email me at JKaplan29.Thanks!

SUBJECT:  Potty Tips from an Expert  Date:  97-01-26 00:16:01 EST
From:  C1ndysue1

Hi all...I thought I would post this here in this area, too (the other DS
message boards are located in Disability)...Kent is a behavioral management
specialist with the Autism Training Center in WV.  He also is the father of
an adorable little boy who is 3 years old who has DS and PDD.  If you have
any questions, please feel free to email him (he's given me permission to say
this :-).

-----------------
Forwarded Message:


SUBJECT:    Toiltet training made semi-easy  Date:    97-01-24 14:41:25 EST
From:    [e-mail] (Kent Moreno)
To:    [e-mail] (upsNdowns List)

The process of teaching a child to use the toilet can be a frustrating
one. This is especially true if the child has a developmental
disability.  The protocol listed below has been used successfully, with
individuals with developmental disabilities of all ages.

In addition to the protocol listed below, It can be helpful if a child
is able to observe others using the toilet.  This may be something
which a family is not comfortable with or is not appropriate in certain
settings.  That's fine.

A major factor in the success of this program is based on the
development of an effective toileting schedule.  To determine the right
schedule for the child, data needs to be taken for at least 2-3 days on
how often the child goes to the bathroom.  To do this, dry pants checks
should be done every 20- 30 min (20 minutes is preferable).  If your
lucky, you can find diapers which have a strip which changes color when
the child voids otherwise, it will be necessary to feel for moisture.
Take special care to write down the times of the day that the child
defecates as most people defecate at approximately the same time each
day.  This procedure is called baseline data.  Once  2-3 days of data
has been gathered, it will be necessary figure out approximately how
often the child goes to the bathroom.  To do this, divide the number of
waking minutes by the number of times the child went to the bathroom.

The toileting schedule can now be set up.  As a rule of thumb, the
child should be taken to the bathroom, twice as often as the child's
average for urinating and defecating.  So, for example, if the child
goes to the bathroom an average of once an hour, the child would be
taken to the bathroom every 1/2 hour.  When setting up the toileting
schedule, keep in mind the times of the day that the child is most
likely to defecate and try to have the toileting schedule occur close
to these times.

Prior to taking the child to the bathroom, give the child a cue that it
is time to go to the bathroom.  I recommend helping the child to make
the sign for toilet until they can make it independently.  Using the
sign for toilet will not stop those children who are verbal from saying
"toilet" and will give the child a way of communicating when they have
to go to the bathroom once they have mastered the toileting procedure
thus making a toileting schedule unnecessary.

It is important that the bathroom be a very fun place.  Reserve a
couple of the child's favorite toys or books which they can only have
access to while they are seated on the toilet.  Also, music can be very
helpful. Mozart and Rockabilly (e.g. Billy Ray Cyrus) seems to work
well.

When having the child sit on the toilet, don't force it.  The
experience needs to be a positive one.  If the child doesn't want to
sit on the toilet, leave the bathroom and try again at the next
scheduled time.  Also, don't have the child sit on the toilet for more
than 5-7 minutes.  If the child is going to void in the toilet, they
will usually do it within that time frame.  If the child voids in the
toilet, make a big deal out of it, praise the child verbally and
tactilly (hugs, pats on the back...) and give them access to a small
very

SUBJECT:  Re:networking  Date:  97-01-26 00:30:11 EST
From:  Upsidjsign

In answer to other parents who wish to network Re:  DS & full inclusion,
Please contact:
[e-mail].   I have a 12 year old daughter who attends grade 5 of
our neighborhood school, is in Girl Scouts, the school choir & band, takes
piano lessons, and the list goes on........

SUBJECT:  Re:Potty Tips from an
Expert  Date:  97-01-28 18:27:15 EST
From:  TLVAIL

Thanks so much for the great info on toilet training!!  I'm going to send it
to our special ed. director who doesn't think it's necessary to have toilets
and running water in our preschool trailer! (closest is in the next
building!)

SUBJECT:  Re:Pre-School in Trainers  Date:  97-01-28 22:30:34 EST
From:  RNerenbaum

Why in the world would the parents allow the Pre-schoolers to be in a
trailer.  What State and County are you in?

SUBJECT:  Re:Young Parents  Date:  97-02-03 01:50:19 EST
From:  AVictor705

dear Angie
      Hi, I'm 22 and I just had my first child and he allso had Downs.  My
chances are just asgood as yours.  my sonis now 3 months, if yo have any info
that you could share with me that willbe greatly appreciated.

SUBJECT:
Re:Pre-School in Trainers  Date:  97-02-05 11:24:53 EST
From:  TLVAIL

I'm in NC (Raleigh area) and the place is growing so fast that the schools
are packed to the gills!!  The parents haven't complained because its' better
than our situation last year.  We shared a small area of a converted gym (had
walls but no ceiling).  We had to stay quiet (yea, right- preschoolers can be
taught in a quiet setting) because the classes around us would be disturbed.
At least now we can sing and dance and play and be nosiy!!  When schools are
overcroweded, children suffer but it takes a while (and lots of money!) to
build the needed schools so you do the best with what you've got!

SUBJECT:
Re:Pre-School in Trainers  Date:  97-02-07 07:32:58 EST
From:  RNerenbaum

TLVAIL

Is it a possiability that the School System might good into renting a site at
a local child development center?  I live in GA where we do have the
Pre-Kindergarten Program and in out schools we could not house these kids so
we have them in child development centers.  You would still be part of the
school system but the system would pay the center for the space.  What have
the parents said.  I know I would not stand for this.  You have to have
atleast one really voical parents who could meet with the others and then go
to the school system.

SUBJECT:  Re:Pre-School in Trainers  Date:  97-02-07 13:22:05 EST
From:  C1ndysue1

I can see trailors being used to house classrooms...however not for
preschoolers, and the early primary ages.  The children need easy access to
restrooms.  What is the state law on that?  Sounds like to me that some
teachers should be switching classrooms whether or not they want to do this.

My oldest NDA child was onced housed in a musty old basement in her school.
This was an added classroom for that particular grade because of the number
enrolled.  The teacher had allergies and complained (along with the parents).
Needless to say, classrooms were switched around and she ended up being in a
very nice trailor the next year.  Here she is years later at a high school
that is in the process of spending over 6 Million dollars on renovations and
additions...and she is back in a trailor again for one of her classes.  It's
growing pains!!!

I understand the crowding issue.  There is one small community near us that
has approx 500 residents.  A developer is coming in to build over 1,000 more
homes in the next few years.  The residents are already complaining about
what effect it will have on their little elementary school.  The school
system is looking into the funding for this..meanwhile, those who will live
there will also have middle school and high school aged children and I
haven't heard anything yet about how that problem will be solved.

I don't think it is necessary for preschoolers to be housed in an elementary
school. I like the idea of a child development center being used...more
possibility for inclusion that way.

Cindy

SUBJECT:  Re:Pre-School in Trainers  Date:  97-02-07 17:39:19 EST
From:  TLVAIL

I agree with all of your statements-  The problem is, I think sometimes
administrators don't see the value of our program-  One teacher said she
thought it was sad that schools had to start babysitting!!  I've been talking
to some parents about calling the director- unfortunately things sometimes
don't happen unless the parents complain.

SUBJECT:  TV Show ER This week!!  Date:  97-02-10 20:31:37 EST
From:  C1ndysue1

The National Down SyndromeSociety has learned that on Thursday, February 20,
the Emmy Award winning television show ER will feature two actors with Down
syndrome.  The story, written by John Wells, has Dr. Mark Green (played by
Anthony Edwards) and first year resident, Dr. Maggie Doyal (played by Jorja
Fox) fighting the system to get their patient with Down syndrome on the heart
transplant list.  The patient, Louise Cupertino, is played by Louise Brown.
This is Louise's first feature role, although she has past experience working
on "Life Goes On".

Later in the show, we will be introduced to Dr. Doyal's younger brother,
Jimmy played  by Blair Williamson, who also has Down syndrome.  ER is
considering having Jimmy as a recurring character. If you would like to see a
character with Down syndrome back in prime time, here is a chance to make it
happen.  The National Down Syndrome Society is calling upon its members and
supporters to help show the producers of ER the significance of featuring
individuals with Down syndrome and other developmental disabilites.

Write the producers of ER ( 4000 Warner  Bl., Burbank, CA  91522) and let
them know.  Thank them for including a story line that brings issues like
these to the general public.  Tell them why it is important to you to have
someone with Down syndrome appear in their show.  Louise and Blair can
receive fan mail, c/o the producers at ER as well.  They both would be
pleased to be contacted by others with Down syndrome.

SUBJECT:  ER Show NEXT week  Date:  97-02-10 21:20:04 EST
From:  C1ndysue1

Hey folks..my mistake.  The show is next week.  I'm just so excited..ER is
one of the few TV shows I watch.

Cindy

SUBJECT:  Downs Syndrome Children  Date:  97-02-11 12:26:23 EST
From:  Chevie55

    I am the mother of 4 Downs   children in N.Y. State.  Ages 17,11,8 and 6.
Most are healthy, one has Diabetes.  Would like to join a chat with other
parents.  Particular interest... toilet training and exercise.
                                     [e-mail]

SUBJECT:  DANCING FOR
DOWNS!!!!!!!!!!!  Date:  97-02-11 20:24:37 EST
From:  TehaniK

I AM A FORMER DANCE TEACHER/DANCER WHO IS THINKING...JUST THINKING ABOUT
TEACHING DOWNS SYNDROME CHILDREN.  HAVE A DREAM OF PERHAPS ONE DAY FORMING A
DANCE TROUPE FOR THESE KIDS.  HAVE ANY IDEAS, SUGGESTIONS ON HOW TO START?
WHAT SHOULD I EXPECT FROM THE KIDS.  I HAVE NO EXPERIENCE WITH THEM.  PS
LOOKING FOR GAL PALS WITH CHILDREN WHO HAVE SPECIAL CHALLENGES!!!  E ME WITH
INSIGHTS AND WISDOM.  THANKS TEHANI!!!

SUBJECT:  Re:Young Parents  Date:  97-02-16 18:07:28 EST
From:  A68keg

I also had a child with Downs at the age of 20...boy what a surprise for us.
Jeremy  is our third child and it was a eye opening experience to say the
least. In regards to the comment about the odds being better at the lottery
we were told the chance of this happening were 1 in 200,000. Jeremy is now 7
years old and in a regular Kindergarten class.

SUBJECT:  Re:Young Parents  Date:  97-02-17 19:23:48 EST
From:  RNerenbaum

A68keg,

I was 27 when I had Adam and the ws 14-1/2 years ago.  I was told don't worry
about anything you are going to have a erfectly healthly baby.  I did have a
health baby (nothing wrong) it was jsut he had Down syndrome.  I know that
when he was born I also was told that there were more women having babies
with Down Syndrome between the age of 15 and 25 than 35 to 40.  E-mail me
sometime I would love to chat.  Also join us on Tuesday night at 9:00 p.m. in
the Down Syndrome chat.  Keyword Pen


SUBJECT:  Re:Young Parents  Date:  97-02-18 23:54:22 EST
From:  Kanddmom

could it be that there are more children with DS BORN to younger women
because they are not tested via CVS or amnio, and therefore are not chosing
to abort as many older women do?  i have never seen any stats on this, but it
is my gut feeling that this is one factor that is influencing the numbers.  i
was 34 when my son was born.

SUBJECT:  D.S. -vocalized breathing  Date:  97-02-19 08:47:17 EST
From:  Jullaine

SLP in CT- 3 DS students on case load all have vocalized breathing and low
facial tone... behavior is distruptive to the classroom and parents are all
requesting intervention...any suggestions or tried methods and/or research.
Thanks for the help.

SUBJECT:  Re:Young Parents  Date:  97-02-21 07:08:46 EST
From:  RNerenbaum

Kanddmom- That very well may be, but I kow when I had Adam I had a mothers
feeling that something was wrong and I begged my doctor for an amnio and he
said there was no reason for one.  I wasn't at risk for a Down Syndrome
child.  Insurance won't pay for it if you are under 35 and no history of
handicapped child.   I have also been told that your alfofetio (sp) protein
can  tell if somehting is wrong.  Mine didn't mine was normal.  Research show
that less women are pregenant with babies with DS and more under 35 with.
Sara Nerenbaum

SUBJECT:  Re:Young Parents  Date:  97-02-21 17:56:13 EST
From:  A68keg

I do believe part of those statistics are because they do not like to give
amnios if you dont fit their profile. When I had Jeremy at 20 he was born
2months premature, it was ironic though that I was scheduled for  a amnio 2
days after his birth. A little late on their part I believe..it would have
been nice to be prepared.

SUBJECT:  E.R.  Date:  97-02-21 18:52:55 EST
From:  Shoos

i'm curious what everyone thought of the e.r. episode.  what really bothered
me was the fact that the doctor who had the brother with down syndrome felt
the need to have to bring her brother in for the patient to talk to.  does
this mean someone with down syndrome can only speak and/or socialize with
another individual who has down syndrome????  any character of any sort of
makeup could have come into visit with the girl.  i think this just made them
more isolated and certainly didn't advocate any sort of inclusion in any way
at all!!  i plan on writing to the show and telling them that i feel they
really did a disservice.  and was the only reason that doctor was interested
in being an advocate for the patient was because she had down syndrome and
she could relate because of her brother??  couldn't  she just fight for her
rights because she was a patient????

SUBJECT:  Re:E.R.  Date:  97-02-21 19:21:09 EST
From:  KAddams

I thought the show did a very nice job of portraying many different attitudes
towards a person with mental retardation and was very sensitive and thought
provoking. The doctor with the brother advocated for the girl because she was
already an advocate for persons with down syndrome and had knowledge and
expertise in that area. She brought her brother to visit because the girl was
lonely and missed her friends. I would assume that her closest friends would
be those people she had the most in common with - from her group home (where
she previously lived) and from recreational activities for adults with mental
retardation. Nothing wrong with that!  That's the positive spin on the
show!

SUBJECT:  Re:Down Syndrome/Cochlear Im  Date:  97-02-24 00:31:03 EST
From:  McGBeach

Have 23 year old daughter with moderate loss. She is undergoing eardrum
grafts to help with
a recurrent infection due to moisture in ear. House Ear clinic in L.A, had
suggested implants
but I was told, tremendous recouperation time, lots of pain, and risk of
total hearing loss if
unsuccessful, so I opted not to try... would love to know more of your
success!

[e-mail]

SUBJECT:  RE: ER  Date:  97-02-24 15:22:31 EST
From:  Dzew

I saw ER.  Dr. Greene fought for his patient, just because she was his
patient and not because of Down Syndrome.  I was really angry at the
psychologist and her reasons for rejection, I like the counter argument.
Especially the touching each others life.  I thought that the Mother's
reasons were well spoken and sensitive.  Her Faith was strong and she made a
choice for her daughter based on that Faith.

SUBJECT:  Re:DANCING FOR
DOWNS!!!!!!!!  Date:  97-02-28 23:17:04 EST
From:  BAutrey58

We live in Montgomery, Al and have a 3 year old daughter with Downs named
Cari.  Earlier this year there was an article in the Montgomery Advertiser
about a set of twins from Tuskegee, Al who were 20 years old and had been in
dance for many years.  They were asked to perform in Disneyworld in the fall.
We certainly plan to put Cari in dance lessons.  She is even going to model
in a local fashion show this spring!


SUBJECT:  Re:Young Parents  Date:  97-03-01 00:01:06 EST
From:  C1ndysue1

Sara and all,

     I was 30 when Matthew was born...ok..one week shy of 31 but still 30
<g>.  I also had a gut feeling from the very beginning.  My AFP came back
normal, he was a good kicker but I often commented that he didn't lay
right???  I told so many people that "this child" would be different. Here it
is 3.5 years later and yes he is different...but he is also more like his
three older siblings in many ways.

     I think the youngest mom I met online was 18 years old.  I believe the
average age is 28 years old, but the odds of a mother over age 35 are higher.
This is because most women have their children before age 35...or at least
use to.  I suspect the statistics will be changing for various reasons.  Many
moms online who were 35 years of age or older opted NOT to have amnio.

     For any young moms reading this....please continue to do whatever it is
you planned to do.  One young mom online (she was 20 at the time) continued
her education and the last I heard was ready to graduate.  Her daughter had
to have heart surgery the first year...but mom and baby survived that
stressful year with flying colors.

Cindy



SUBJECT:  Re:Young Parents  Date:  97-03-01 09:39:08 EST
From:  RNerenbaum

Cindy,

You are always so encouraging and know just waht to say.  Thanks for the
comments.

Sara nerenbaum


SUBJECT:  Dancing Cari  Date:  97-03-04 06:31:29 EST
From:  Jullaine

Hi Loved to her how invovled and full Cai's life is and obviouly will be.  In
my 19 years working with "speical' students I would like tobring a suggestion
to you ...I'm sure you already feel this way but it was typed diffrently..I
Have a daughter named Cari . She has DS.  She comes first and this will help
kep her respected at least I think so I hope yu agree just a thought..
Many of my students are enrolled in swimming after school rec and
soccer/bowling programs as well. Kids love to be active so the skys the
linit. Good Luck
and happy parenting.

SUBJECT:  Teacher of Non-vocal DS  Date:  97-03-05 00:04:29 EST
From:  LLewis3119

I have a student with the "label" of Downs.  He is 7 years old and only will
vocalize utterances, usually the ending of a 2 syllable word or a one
syllable word.  He usually will answer yeah to anything asked.  He has begun
to have behavior problems and I am wondering if it is out of frustration of
his inability to communicate.  Any suggestions, or anyone with a similiar
problem?

SUBJECT:  Re:Teacher of Non-vocal DS  Date:  97-03-05 07:20:24 EST
From:  RNerenbaum

LLewis3119

I kow from personal esperience that when my son was little and we counld not
understand him we then noticed that he was acting out.  His behavior bacame
more that I thought I could ever handle.  Once we started speech therapy and
we found out that he did have a mild hearing loss we started to see a vast
improvement.  We started to be able to understand him.

SUBJECT:  Re:Teacher of
Non-vocal DS  Date:  97-03-05 13:25:16 EST
From:  Chevie55

Dear teacher,
     My son is 8 years old , has Downs and has the same communication
problem.  Yes they do act up out due to frustration with not talking.  The
child needs an out.   My son was taught to use sign language and all his
problems went away.  He talks better with his hands then we do with our
mouths!  Try it.

SUBJECT:  Re:Young Parents  Date:  97-03-06 02:15:13 EST
From:  AVictor705

I'm answering angie.  I am 22 and just had a son with Downs about 4 months
ago.  It was also theshock of my life


SUBJECT:  Re:Teacher of Non-vocal DS  Date:  97-03-09 00:28:51 EST
From:  C1ndysue1



SUBJECT:  Teacher of Non-vocal DS  Date:  97-03-05 00:04:29 EST
From:  LLewis3119

I have a student with the "label" of Downs.  He is 7 years old and only will
vocalize utterances, usually the ending of a 2 syllable word or a one
syllable word.  He usually will answer yeah to anything asked.  He has begun
to have behavior problems and I am wondering if it is out of frustration of
his inability to communicate.  Any suggestions, or anyone with a similiar
problem?

Does this child not have a speech therapist?  If not, he needs one..and a
good augmentative communication evalutation as soon as possible.  There is a
wonderful resource for communucation skills and children with DS...it's Dr.
Libby Kumin.  She has a book out and she also has a newsletter called
Communicating Together.  To top off her work, she often presents to both
parents and professionals.  For more information on Communicating Together
(my sons speech therapist subscribed before she even had my child on her
caseload)...go to http://downsyndrome.com.  There are other experts,
too...but it is Libby that I am most familiar with.

This child also needs some really good speech and language models..is he
included with his peers?  I have heard from parents online whose children
were also that age and reported an immediate increase in skills after being
included.

You may want to try the Tuesday Night Chats in the Health Forum (keyword PEN)
at 9:00 ET...Libby pops in from time to time.  She made it last week.

Cindy

SUBJECT:  Re:My kids with Downs  Date:  97-03-09 10:59:03 EST
From:  Mosslehr

My name is Sue and I have two with Downs.  Rob is 27 and Pam is 38.  What
would you like to know?

SUBJECT:  Visual Learning  Date:  97-03-09 14:01:49 EST
From:  Chiller919

My child is an extraordinary visual learner.  She learned all of her States
and Capitals from a book written by Jerry Lucas several years ago that is all
visual links between States and their Capitals.  The book looks totally
silly, but it worked!  She is 12 years old, and as we get into more learning
situations, I was wondering if anyone knew of other resources available that
speak to the visual learning strength of a child? Please answer in this forum
or e-mail me directly at Chiller919.  Thanks!

SUBJECT:  Re:Eolive  Date:  97-03-12 01:53:22 EST
From:  CROWNST

Can someone direct me to the chat room   crownst   thx.

SUBJECT:  Re: Forwards  Date:  97-03-12 01:57:46 EST
From:  CROWNST

i would be interested in the inclusion letter...tell me more about it pls
Crownst


SUBJECT:  Re:Teacher of Non-vocal DS  Date:  97-03-14 19:14:28 EST
From:  Jullaine

I  am a Speech therapist for SPED inclusin program,elem level.... I would
intorduce basic sign
language and label his world for him.. In our classrooms we use index cards
taped in stategic places close to if not on the item.  Each card has the
printed word, sign language picture and actual picture(line drawing or photo)
of the item. We label from Apple to Zipper whatever we feel they child has
intreast in and or is part of the current curriculum.
Model words and gestures and encourage the same.  We also have a feelings
board with facial expresions the child is encouragedd to go to the board and
identify the emotion  or pick the " help" card for
furthur assistance .. good luck.

SUBJECT:  Finding the Chat rooms  Date:  97-03-16 00:53:27 EST
From:  C1ndysue1

The chat rooms are located in the PEN area (Personal Empowerment Network).
You can use keyword (ctrl k) PEN or DIS to get to this area.  Once you are
there, you will see an icon that says chats.  Click on that.  There is a chat
schedule listed.  The two Down Syndrome chats and the inclusion chats are
held in the Health Forum.  The Special Needs chat is held in the PEN
conference room (PenCari has a child with DS).

Since AOL introduced their unlimited time in December, many members are
making use of the private room Down Syndrome at other times, too...in fact
almost any night around 9:00 you can find people in this chat room.  I
encourage everyone who is new to try the private room to become aquinted with
a few people and build networks (the health forum holds 48 people...can be
overwhelming for a newbie).

For the health chats...please if you are new, jump in and introduce yourself.
Also don't hesitate to ask any questions...if someone in the room can't
answer you...we do our best to link you with someone who can.

Also, you can try to send one of us an IM by clicking on members, then click
on send an instant message.  The Pen staff members are Pen Cindy (me), Pen
Sandy, Pen MaryAZ, Pen Sherry, Eg12 and KarenL2888.

Cindy

ps There are more DS folders located in the PEN area, too.

SUBJECT:  dealing with
culteral diff.  Date:  97-03-18 00:38:50 EST
From:  JKaplan29

I have a student in my class that is from Mexico. I know the family's history
and understand why they moved to this country.  I understand that they view
their daughter as the special one. She is given her way all the time no
matter what the circumstance.  This frustrates me because at school she is
sooooooo independent and capable of the anything she chooses to do!!!!  I
just spent the weekend at the Spec. Olympics.  My student had her own
personal servent (her sister).  The poor sister ran her butt off to please
her.  She put bites of food into her mouth and even carried her around!  Now
I must admit that this students personal living skills are quite advanced!
She is 8 years old and can wash her own hair...........
Her parents have done wonderful in this area!  With out offending the
parents, how do I explain to them that she will not be cute when she is 30
years old having a tantrum!!!  I guess I should also add that their are major
saftey issues.  She likes to run away and is good at it!  She will head
straight for the road or hide in a strangers house.  I love this little girl
and want the best for her.  I have tried to talk to the parents and have
arranged for other hispanic parents of Down Syndrome parents speak to them.
Any ideas?  Do I just need to back off?  Thanks for listening! :)Janette

SUBJECT:
Re:dealing with culteral dif  Date:  97-03-18 17:12:13 EST
From:  CROWNST

JKaplan29:  I think your concern about this child is well-founded,
especially in the areas of
safety....perhaps that a good place to start...

All parents want their children to be safe...perhaps you can suggest that the
school bring in
a behavioralist to support the behavior plan for their child....then that
person can be the liason....
Cultures may be different, but most parents will hear you...whether or not
they will listen is not
something you have control over....try your best....Crownst

SUBJECT:
Re:dealing with culteral dif  Date:  97-03-19 02:27:14 EST
From:  Upsidjsign

I think that you are dealing with a cultural difference in how special needs
children are viewed. I've been teaching 25 years, and remember when sp. ed.
kids were not generally viewed as competant future citizens.  It was always
assumed that they would be supported in some way.  This viewpoint is alive &
thriving in many parts of the world.....Remember, inclusion is a very new
concept!
I would suggest that you present your viewppoints one or two at a time, as
too much is overwhelming, and coupled with culture shock, it can be like Mt.
Everest with no peak in sight.  I would highly recommend that you hold all
conversations in Spanish, or get an interpreter if you can't do this
yourself.

SUBJECT:  Re:Finding the Chat rooms  Date:  97-03-22 22:38:06 EST
From:  LHMcTalk

How would one get to Health Forums?  Is that the name of the chat room or a
location that lists the chat room.  I was able to find the PEN and the Down
Syndrome listing.  I just need alittle more info.  Thanks,  LHMcTalk

SUBJECT:
Re:DANCING FOR DOWNS!!!!!!!!  Date:  97-03-22 23:14:03 EST
From:  CMancari

BAutrey:'

I just read your post--my name is Cari and I have a 3 yo son with DS who is
the joy of my life, his name is Nick.  I love to see my name (the spelling is
unusual isn't it?) and when I do I always try to intoduce myself.  email me
anytime.

SUBJECT:  Re:Finding the Chat rooms  Date:  97-03-24 00:34:52 EST
From:  PEN CINDY

When you enter the PEN area (Personal Empowerment Network), you will see an
icon that says chats.  Click on that.  You will see different chat
forums..click on the Health Forum Room for the DS and Inclusion chats.

Cindy

SUBJECT:  Down Syndrome Research Info!  Date:  97-03-24 00:36:27 EST
From:  PEN CINDY

Dear Fellow onliners,

     As you may be aware, the Down Syndrome Online Advocacy Group was
launched in December.  This group is an affiliation of the National Down
Syndrome Society.  Membership is free to all onliners and you can be added to
the mailing list by contacting [e-mail] or [e-mail].

     Though our primary mission is to help raise money for Down syndrome
research, this is not what I want to call your attention to.
[e-mail] is the liason between the NDSS and the DSOAG.  He has had
the opportunity to attend the affiliate meeting in Chicago recently and also
a meeting in Washington, DC to discuss various issues, including research for
Down syndrome.  This is what I want to call your attention to.

     Bob is currently in the process of writing a letter to all DSOAG
members.  Though I won't speak for Bob, I do want to stress the importance of
his upcoming letter.  Many of us parents are frustrated by the lack of
understanding of research in general.  I have asked him to explain to the
membership what he has been explaining to me on the phone and online.  He
will also brief us on the meetings he has attended.

      This is a great time for some learning on our part as parents.  I want
to encourage everyone to join this mailing list.  Please, this is not the
same as a listserv or newsgroup.  This letter that will be coming out soon is
the first one since the group was launched in December.

     If anyone missed the letter that was sent out in December that announced
the launching of the DSOAG, you can find more information at
http://downsyndrome.com (top right of the page).  Furthermore, if anyone has
any questions regarding the DSOAG, feel free to contact me at
[e-mail] or [e-mail].

Sincerely,

Cindy Casten

SUBJECT:  cultural differneces  Date:  97-04-02 20:41:39 EST
From:  JKaplan29

Thanks for support.  My classroom assistant speaks spanish and the child's
mother is comfortable but very reserved when speaking to her. I did find out
that the older sister is the primary care giver for her.  We have invited her
on 2 field trips.  We bite our tongue a lot and try to give positive helpful
suggestions as our  little angle of a student manipulatitutes, cries and
demands her way from her sister.  I would like to have the sister come to
school for further "training" but I do not think the Sped Director is
thrilled with the idea.  I think that after the novelty of her visiting wore
off then the  big sister could see her doing all the independent activities
that we know she can do.  We could also teach her sister sign language.  (My
student says a few words in english and spanish and uses some signs, all of
which the family does not understand.)
(The big sister is 16 and in 8th grade at the other school in the district.
She is on the verge of dropping out because she is having a hard time in
school.  She is very traditional hispanic young lady.  She smiles a lot while
looking at the ground but does not reply.).  What do you think?  (Mom has a
child at home with a heart condition and is not able to come to school).
Thanks!!!!!!!!! :)Janette

SUBJECT:  Down - Inclusion  Date:  97-04-22 22:22:13 EST
From:  Ratatat

Posted from another folder:



SUBJECT:  Re:DOWNS - Inclusion  Date:  97-04-22 19:48:13 EDT
From:  GSikorENT

I am tutoring a Down's student. he does some math very well (i.e. addition is
a breeze) but other things he can not do at all (i.e. subtraction). He
progresses then seems to lose what he has just learned. He tries very hard,
loves to do homework. he gets frustrated when he can not do something. Are
there any special techniques or books I can use to help him learn his math?
He really wants to be able to count money, he wants to be able to get a job.
He is at the 3rd grade level and it is tough to get successes beyond this. I
have not worked with Down's students before. Is there a palce where learning
plateaus?

SUBJECT:  Re:Eolive  Date:  97-04-24 21:17:03 EST
From:  DorisFan

Hi, My Name is Judy, I also have a Down's Syndrome daughter and she is 16
yrs. old.   Don't think you are the only one that has problems.  We all do!
Our family was fortunate to have my daughter, Miranda, born without many
medical  problems.  We have alot of friends with Down's Syndrome children,
and they have been though many surgerys.   I would like to talk to you later
about your situation.   You can E-mail anytime!  I don't work outside of  the
house.  I'll look forward to your mail.

         Talk to you later,

                       Judy

SUBJECT:  D.S. VOCAL BREATHING HELP!!  Date:  97-04-27 19:28:30 EST
From:  Jullaine

DOES ANYONE HAVE ANY SUGGESTIONS FOR THIS. I HAVE 3 INCLUDED DS ELEM
STUDENTS.  THEY ALL HAVE VAIROUS SEGREES OF VOCALIZED BRATHING. THIS IS
INTRUPTIVE TO CLASSES AND NEEDS REMINDERS WE WANT TO HELP ASSIT THE KIDS TO
MCONTROL THIS AND SUCEED WITH THIER ARTICULATION , ALNGUAGE AND SOCIAL
SKILLS. PLEASE RESPOND THANKS , ANY SUGGESTIONS WILL BE VERY WELCOME.
JULLAINE

SUBJECT:  Re:D.S. VOCAL BREATHING HELP  Date:  97-04-27 21:35:02 EST
From:  RNerenbaum

You need to read a little about kids with down syndrome.  There are some kids
who have problems with breathing.  Talk to the parents concerning this.  They
will probable be able to help better than any of us.  I teach regular ed kids
and some of them have breathing problems because of Asthema.   I didn't know
this until I talked to the parents.


SUBJECT:  FEEDING PROBLEMS  Date:  97-04-30 22:47:10 EST
From:  Bubba20300

I have a 3 year old child with D.S. in my pre-school class.  He has an
extensive medical history, a long term traech (now removed), two heart
surgeries, and a G-tube for supplemental nutrition.  When he joined our
program, this past Sept. he had just had his 2nd heart surgery and was being
weened off of oxygen.  He was getting most of his nutrition via his tube.
Since then he has moved from smooth spoon fed foods to lumpy spoon fed
foods---good progress.  Takes liquids from an open cup---more progress :)
Tolerance developed for facial stimulation and imitation of oral motor
movements---still more progress.   We've even been able to get him to
tolerate brief stimulation to his inner cheeks and tongue with a
finger---very brief, but still progress.  Here is the problem:  He is totally
intolerant to having any food placed in his mouth without a spoon, therefore
progressing to a munch at this point has not happened.  We've tried gauze
dipped in liquids---no way!! Has any one had similar experiences----can
anyone advise?!?!  His private therapist is recommending a very STRONG
approach including holding him down and forcing him to accept food, etc, in
his mouth---this makes me nervous, forcing can have such negative results.
Please HELP!!!

e Mail me at [e-mail] or [e-mail]

Thanks,
          Katy
          Early childhood special educator (my most formal title)

SUBJECT:  Down
Synd & ADHD & IDEA  Date:  97-05-14 22:29:20 EST
From:  Kidkonect

I've seen info dating back to 95 on this board about DS & ADHD.  My 11 yr old
daughter has been in the regular classroom for ALL of her education thus far
(K-5). She is having a very difficult year behaviorally.  Our recent IEP is
indicating that staff will recommend a self contained placement based on the
behaviors occurring now.  We believe the escalation in behaviors is an
indication of a number of things including curricular adapts that are putting
her into more direct instruction from 1:1 aides.

My question:  I am an IL resident.  I was of the understanding that ADHD
could be identified as a separate disability (adversely affecting the
education of the child) under federal law IDEA.  When we requested this at
the IEP, we were told this did not apply to IL state law.  We are hoping that
identifying the ADHD as a separate disability (OHI) additional services to
address the function of the behavior could be provided by a behavioral
specialist familiar with mental impairment & ADHD.

Has anyone had luck in separating the ADHD for additional services in IL?

Thanks for any help or references.

Sharon C.
Email to kidkonect @ aol.com


SUBJECT:  Re:Down Synd & ADHD & IDEA  Date:  97-05-15 05:51:42 EST
From:  Ratatat

< I am an IL resident.  I was of the understanding that ADHD could be
identified as a separate disability (adversely affecting the education of the
child) under federal law IDEA.  When we requested this at the IEP, we were
told this did not apply to IL state law.  We are hoping that identifying the
ADHD as a separate disability (OHI) additional services to address the
function of the behavior could be provided by a behavioral specialist
familiar with mental impairment & ADHD.>

Many significantly impaired kids with ADHD are classified as other health
impaired.  The Department of Education and the Office of Civil Rights issued
a Memorandum in September of 1991 stating that children with ADHD can and
should be provided with services under IDEAs "Other Health Impaired"
category.

Since your child also have Down (I don't know how severely effected), she
might be categorized with the primary disability of DS, and a second
categorical classification as OHI because of ADHD.

Each child's IEP is supposed to be designed to address their unque needs, and
be provided by individuals who are specifically training in dealing with the
disability.  You child deserves to have teachers who understand DS and who
understand ADHD, and the problems that can come with them.

As long as Illinois is in the United States, it has to follow the Federal
laws, including classifying children as OHI who qualify.

In the last four years there has been an 89% increase in the number of
children classified as OHI, and the bulk of those kids were found eligible
because of ADHD.

SUBJECT:  Mom of boy entering Kind  Date:  97-05-17 02:16:56 EST
From:  Eranso

This is my first venture on the internet - I am a little disappointed that
there is not more communicating going on in here (but perhaps there is
another location I have not yet found).  I am a mom of two boys, 7 and almost
6 (in June).  My youngest son has DS.  We will be entering the world of
full-inclusion this fall.  I am a nervous wreck, but I also know that this is
the best thing for my son.  I have major contrasts in my family, as my 7 year
old is highly intelligent.  How does anyone else handle these differences?
This has been fun exploring - it would be nice to see more activity
here...!

SUBJECT:  Re:Mom of boy entering Kind  Date:  97-05-18 21:10:50 EST
From:  RNerenbaum

Eranso,There is really alot of chatting on Tuesday, at 9:00p.m. What you need
to so is Keyword:Pen,Chatroom, Health Conference Room.  If you can make it
join us we have a really good time and you can share anything you like.  I
have a son with DS who is 14 years old now and I remember when he entered
Kindergarten.  EMail me anytime at [e-mail].

Sara Nerenbaum

SUBJECT:  Re:D.S. VOCAL BREATHING HELP  Date:  97-05-26 15:08:29 EST
From:  Verbalwon

I am a mom of a child with Down Symdrome and a Speech Pathologist.  Of all
the possible difficulties children may exhibit in class, it seems that mouth
breathing would be low on the list.  You did not mention the age of the
children in your class, which might be important.  Is this a goal on their
IEP's?  Talk to the speech-language pathologist about speech and language
goals for the classroom.  There are so many medical complications that result
in mouth breathing for all children, not just children with Down Syndrome.

Because I will have my daughter in school one day I really want to encourage
you as you work with the children in your class.  Your attitude and work can
make all the difference in the life of a child.  Keep reading about Down
Syndrome and asking questions.  Best of luck.   LM

SUBJECT:  Re:Mom of boy
entering Kind\  Date:  97-05-26 15:18:36 EST
From:  Verbalwon

I too am dissappointed in the lack of activity for this message board.  You
will find other information about Down Syndrome on the WWW.  Parent groups
are more active about sharing information, even if it is misinformation.  I
hope you have found some of these resources.
My child with Down Syndrome has just started in the public school preschool.
It was hard for me to let her go.  You will make it though!
Do not hesitiate to let your child's teacher learn about your child.  Provide
new information about Down Syndrome as you find it.  Most educators want to
do a good job and will.  Ask to volunteer in any way that you can.  Your
interest may be what helps your child have a great year instead of a trying
year.  Best of Luck.  Feel free to write me too.  [e-mail]

SUBJECT:
VITAMIN SUPPLAMENTS  Date:  97-05-29 18:15:07 EST
From:  SShillingb

HAS ANYONE HERE ACTUALLY ADMINISTERED A MIXED VITAMIN SUPPLEMENT TO IMPROVE
DEVELOPEMENT OF THEIR DOWNS SYNDROME CHILD????????
we have heard vast stories of the impaired digestion of essential vitamins in
Downs Syndrome children, AND the "great tales" of miraculous improovement via
these special vitamin supplements. anyone who knows about its
advantages/disadvantages..etc.. PLEASE give me a note!!!!
[e-mail]

SUBJECT:  Robertsonian Translocation  Date:  97-06-01 16:25:49 EST
From:  TFP5090

A student who will be transfering into my class in the fall has been
diagnosed with Robertsonian Translocation.  Is this similar to Down Syndrome?
He appears to have physical features similar to a child with Down Syndrome.
His parents don't have any information, and I have already searched the web.
The documents were medically based.  I'm more interested in educational
issues,  such as range of abilities, etc.  Any information will be helpful.
Please e mail me. Thanks.

SUBJECT:  Re:Robertsonian Translocatio  Date:  97-06-01 18:48:06 EST
From:  Ratatat

<A student who will be transfering into my class in the fall has been
diagnosed with Robertsonian Translocation.>

Call NICHCY (National Information Center for Children and Youth with
Disabilities) at 1-800-695-0285.  They have national and regional resources
lists.  I know they have the listing for an association dealing with rare
disorders.

SUBJECT:  Re:Robertsonian Translocatio  Date:  97-06-04 21:41:50 EST
From:  C1ndysue1

I am also looking for a parent whose child has/had this for another parent
here on AOL...please email me if I can link you up with this parent who has
many questions.

Cindy
Pen Cindy

SUBJECT:  Re:Down - Inclusion  Date:  97-06-04 21:49:34 EST
From:  C1ndysue1

<snip> He really wants to be able to count money, he wants to be able to get
a job. He is at the 3rd grade level and it is tough to get successes beyond
this. I have not worked with Down's students before. Is there a palce where
learning plateaus? <snip>

According to Barbara Levitz and many other parents, the answer is no.  Her
son left home last year to take a job in another state.  He is continuing to
learn as he is living on his own, working in the real work force, etc.  This
person may need support to deal with more complex daily living skills when
the time comes for him transition to the adult world.

Cindy

SUBJECT:  Re:Robertsonian Translocatio  Date:  97-06-08 16:32:19 EST
From:  Verbalwon

I have read lots about Down Syndrome but was not familiar with Robertsonian
translocation (I was aware of just "translocation".), so I did some research.
On the <Down Syndrome WWW Page>, I found  an article entitled "Risk and
Recurrence Risk of Down Syndrome" that discussed the genetic forms of DS.
Most children with DS are Trisomy 21 but some have mosaic trisomy 21 (2-4%)
or translocation trisomy 21(3-4% usually Robertsonian translocation, named
for Dr. Roberts who originally described this type of translocation).
As you probably know, children with DS can vary in abilities and
disabilities.  There are 3 genetic mechanisms of DS but it does not appear
that the type can translate into how the child will ultimately perform in
school.  Each child is different.  Good luck with your new student!
I looked up the above info @ <http://nas.com/downsyndrome/benke.html/>


SUBJECT:  behavior problems  Date:  97-06-17 19:50:23 EST
From:  STEVE PATG

I have a 9 year old DS girl in my special education class who has severe
behavior problems.  She refuses to work, lies on the floor, will not move
from activities, runs away with no warning, spits, and hits (hard!).  Her
behaviors take up the majority of the school day and have a very negative
impact on the rest of the class.  She seems to have no understanding of
action/consequence and nothing seems reinforcing to her.  She could care less
about food, games, toys, etc.  It's as if she participates in life as if it
is a movie, and whatever happens happens.  I will have her for 2 more years,
but she is already becoming too much to manage physically.  She is abusive to
the other children as well.  I teach in a public school, so we are limited
with what interventions we can do, and the district will not pay to get her
an aide.  Any suggestions or recommended books that might help?

SUBJECT:
Children with Down Syndrom  Date:  97-06-27 19:44:31 EST
From:  JRehling

Hi, my name is Judy.  I adopted 5 children with downs.  Had them since
babies.  One is presently in College and I have one who is FULLY included who
also has ADHD.  Two are vision impaired and 4 are non verbal. I am a parent
advocate for the school dist.  Please e-mail me if I can be of help or you
want to chat.  In Ca,
JREHLING

SUBJECT:  Re:Down Syndrome Surgeries  Date:  97-06-28 23:05:06 EST
From:  Redstrabre

EOlive8407  I, too, have an 18 year old daughter with Downs. I know exactly
what you're dealing with concerning your daughter. My daughter has had two
eye surgeries to correct strabismus by the age of two. She has plastic
surgery done on her little finger due to an accident. She, too, had
corrective surgery done on her feet. She had long pins in both feet for 6
weeks; screws remain in her feet to this day. It's been 3 years since the
surgery. Not too long ago she fell and shattered her elbow. Her pain
tolerance is such that she picked up my 18 month old nephew with that
shattered elbow. She ended up having major reconstructive surgery the next
day and is unable to extend her elbow. If you'd like to email me, my address
is [e-mail]

SUBJECT:  Re:Life Skills`  Date:  97-06-29 19:00:36 EST
From:  Redstrabre

The term "Life Skills" covers so much.  I have an 18 year old daughter who
has Downs plus I teach in a Special Education classroom. When she was
younger, I gave her chores around the house. Her older sister had chores to
do so why should Whitney be left out.  I wanted her to know that she was no
different than the other children. Add a chore weekly----be it putting dishes
away, making beds, cleaning up in the classroom. The student can be given
errands to  run around school.  Also; we have jobs set up in our elementary
school that the students help sweep, pick up the attendance, water plants in
the office, and deliver messages if they know where that particular teacher's
room is located. It depends on how the classroom is set up as to whether you
can have a livingroom, kitchen, (a model home design basically. That'd be the
ideal senerio).
 Let me know how things go.  my email address:  [e-mail]

SUBJECT:  RE:
INCLUSION  Date:  97-06-29 19:15:16 EST
From:  Redstrabre

I have seen for myself what inclusion can accomplish not only for the special
education student but also for the regualr education students.  My child who
has Downs did not have that opportunity while she was going through
elementary but I see the benefits that my students are getting. They are
becoming more aware of what it is socially accepted and what is not. The
special education students who are "included" in the general classes may not
gain much academically but sometimes the gains they receive from the social
aspects are worth anything you can imagine. I have watched both the special
education students benefit as well as the general class  population benefit.
The teacher with whom I had co-taught with told me that she had received a
letter from a parent of one of her general education students' parents,
thanking her for giving her daughter the privilege of allowing her daughter
to learn from one of my special students.  We've had children with Downs in
the school wide talent show. My daughter had gone to that same school years
earlier and was not allowed in the talent show or even in the regular
classroom--the regular classes missed out on some good learning, I think.
That's my opinion!! What's your's?

SUBJECT:  Re: Directions to SpEd Library  Date:  97-07-06 14:38:31 EST
From:  Hsheff209

Hello! I'm an Exceptional Student Education Major, at USF @ Sarasota.  I'm
searching for a very beautifully written emotive poem re:  special children.
I think the title is "A Special Child."  Sad to say I've lost my copy and
can't seem to locate another.
Many Thanks for your help!
Hsheff209.aol
Hsheff209.aol

SUBJECT:  Re:Young Parents  Date:  97-07-10 23:11:24 EST
From:  LCM46

I had my son Jonathan 2 weeks after my 27th birthday.  I already had 2 other
children, and had 2 more after Jon.  Jon is 23 now, he "graduated" with an
IEP diploma in '94, and works at a restaurant.  I learned much later that by
using contraceptive foam as a method of birth control was probably the reason
for Jon's DS---my obstetrician cried when Jon was born!  It was a pleasure to
have Jon, tho, and although we'd rather he was "normal", he's been a great
kid!

SUBJECT:  Re:Young Parents  Date:  97-07-11 20:28:16 EST
From:  Boulevard

<<I learned much later that by using contraceptive foam as a method of birth
control was probably the reason for Jon's DS>>
I'm sorry to disagree, but I've NEVER heard such a thing!  I don't believe
there has been any research to show that contraceptive foams cause genetic
disorders --- please don't think anything you did (or didn't do) "caused"
your son's Down Syndrome.
Nancy, speech path. & mom of Austin - age 10, DS

SUBJECT:  Re:Young Parents  Date:  97-07-11 21:09:27 EST
From:  PEN CINDY

I agree with Nancy...I never heard of contraceptive foam causing DS.  Most
cases of DS are caused by a fluke of nature.  I know nothing I did caused my
sons disability. BTW, welcome to AOL!!!  Hope to see you in the Down Syndrome
chat soon.

Cindy

SUBJECT:  Re:behavior problems  Date:  97-07-11 22:38:48 EST
From:  CROWNST

Steve Patg  Sounds like this child is doing a  lot of communication through
her behavior......
and her behavior is certainly a tremendous obstacle to her being able to
educated.  As that is
the case, it seems to me that the District should be providing this child
with major behavior
interventions and protocols ....  the parents should be insisting that this
child be helped...things
aren't going to get better without a successful behavior program.  It sounds
like no one is listening.  Get the parents to insist and if necessary,
suggest they get legal assitance...
This poor kid needs help....Crownst


SUBJECT:  Re:Children with Down Syndro  Date:  97-07-11 22:39:56 EST
From:  CROWNST

JRehling:  Where in California....me too. Crownst.....I  have only child with
Down syndrome.

SUBJECT:  Re:RE: INCLUSION/ Life skill  Date:  97-07-12 21:41:55 EST
From:  DONORALOU

We have a family which will not allow their young man to participate in any
of the activities you mentioned. They feel those things are "demeaning." they
INSIST we are to prepare him for COLLEGE. He is Downs, age 18, has an I.Q of
about 75, reads at the 3rd/4th grade level. At an IEP I was part of they
stated they wanted us to prepare him to "work in an office on a compputer and
wear a suit."  I'm not a Special Ed teacher. I have had this young man in my
class three years. I'm getting him again next year. He's not very
cooperative, but his mother insists he only work on "academics."

SUBJECT:
Re:RE: INCLUSION/ Life skill  Date:  97-07-12 21:41:56 EST
From:  DONORALOU

We have a family which will not allow their young man to participate in any
of the activities you mentioned. They feel those things are "demeaning." they
INSIST we are to prepare him for COLLEGE. He is Downs, age 18, has an I.Q of
about 75, reads at the 3rd/4th grade level. At an IEP I was part of they
stated they wanted us to prepare him to "work in an office on a compputer and
wear a suit."  I'm not a Special Ed teacher. I have had this young man in my
class three years. I'm getting him again next year. He's not very
cooperative, but his mother insists he only work on "academics."

SUBJECT:  just
found this board  Date:  97-07-19 01:54:33 EST
From:  RHolkesvig

Stayed up late and found this board. I have five children and youngest
(6yrs.) has Downs, I've been a Parent Representative for CA Early Start
program for about three years serving infants and toddlers and families. I do
workshops, support goups ,advocacy , resource library and love it! I also
have been working as a Special Needs Aide for Head Start. I have found that
most parents feel they are on their own, navigating for services, finding
resouces and support . Please comment.

SUBJECT:  Re:RE: INCLUSION/ Life skill  Date:  97-07-21 02:19:31 EST
From:  CROWNST

Donoralou:  My initial concern is the way in which you perceive this person
by the way you
describe this person.  You say he is a "Downs" , age and IQ.  Is that how you
see this person?  As a disability with a certain IQ.  Perhaps the first thing
you should do is examine your
perception of this person and not this person's disability....you may see
some of the potential
his mom sees and have a better understanding of her perception versus yours,
which seems very technical.  Your new perception may create a new reality and
a better level of
communication between you and this person's mom. Crownst.

SUBJECT:  Info on
Petaluma, CA  Date:  97-07-22 16:19:21 EST
From:  Iridaea

Hello:  we have a 6-year old boy w/ Ds who is currently fully included in the
San Francisco school district, both for kindergarten and after-school care.
But, of course, now we are moving to Petaluma, Ca.  Does any one have any
experience with full inclusion, special ed., or day care there?  Or anything
else!  Thanks so much.  Please e-mail or post here, we appreciate any info!
David and Cheryl Tillotson

SUBJECT:  SAHM  Date:  97-07-25 20:08:19 EST
From:  DDMAking

I am looking to speak with other SAHM who have done the "career thing"
Please post me a message or e-mail me at DDMAking @ AOL.com.
Thanks,
Dana

SUBJECT:  My neck of the woods?  Date:  97-07-26 16:23:31 EST
From:  Redstrabre

Hi,
I was hoping that there was someone who has a child or young adult who has
Down syndrome in the San Antonio, Texas area.  If so, please contact me
[e-mail]
I would love to hear from you.  Thanks, Nita

SUBJECT:  Re:Down - Inclusion  Date:  97-08-01 14:11:26 EST
From:  AtlntisCtr

Have you heard of Touch Math?  It is a great program, and may be of use.  I
use it with LD kids all the time, and have great results.  I think they are
out of Colorado....perhaps call information for an 800 number.

SUBJECT:  Re:RE:
INCLUSION/ Life skill  Date:  97-08-01 18:56:59 EST
From:  DONORALOU

    How else should I describe him ? When I first had him in class he arrived
1/2 hour early every morning, stood in front of my door swinging his loaded
book bag at other students walking down the hall. He called girls "dirty"
names. He attacked an Asian youngster. I told the special ed teacher that he
was responsible for this young man's behavior 1/2 hour before school started.
I had to prepare for my other 4 classes. I was not going to "baby sit" his
student. We worked on the student's behavior for 9 months that year. His
mother still couldn't understand why we weren't stressing "academics" even
when mothers of other students called her to complain about his offensive
behavior. He fell asleep in my class on a regular basis because he is allowed
to watch too much t.v. late at night. She does not monitor his homework or
his sleep. She does buy him the most current clothes with expensive labels,
I'm sure to make him appear more "normal." Sorry. The problem is NOT my
perception. I have to deal with a parent who cannot accept the child she has,
and she finds fault with  the teachers and the school system because she
cannot accept that he will NEVER be "normal," "average," or whatever is the
politically correct way to say that a kid is of average intelligence. I'm
doinf the best I can in a difficult situation.

SUBJECT:  Re:RE: INCLUSION/
Life skill  Date:  97-08-03 22:32:40 EST
From:  DGPCHAZ

I agree with crownst, you should look within yourself and see if maybe the
problem or some of the problem is within yourself.  I am a parent of a downs
child, and I was a bit offended by the way you  described this child,
difficult or not, a mother will always want more for their child.....


SUBJECT:  Re:Down - Inclusion  Date:  97-08-04 08:19:27 EST
From:  Willsons

If you are able to provide more information about contacting the company that
produces Touch Math, I would be interested.
Thanks.

SUBJECT:  DONORALOU  Date:  97-08-12 23:50:50 EST
From:  DGPCHAZ

I need to apologize, I reread your message and I side a bit with you.  As a
parent of a Downs child I involve her in as many activities as possible.  She
is finally of age to be in the Special Olympics and we are exstatic.  Please
disregard my last message.  A parent should always want more for their child,
and sometimes we want too much.....

SUBJECT:  Just found you!  Date:  97-08-19 07:42:57 EST
From:  Passatt558

I have been looking for this place. I am new to the computer and certainly
new to this place. I have a 3 year old daughter with DS, and I am looking for
info & guidance.  Last August Tori had tongue reduction surgery(which has
helped her expressive language); she has an ongoing problem with mouth
posturing and drooling.  Her chin stays damp to wet all the time with  a rash
most of the time. She quickly attends when remainded to close her mouth but
even that does not help control the drooling.  Our Pediatrician gave us
glycopyrrolate to help decrease secretions but gave us a list of warnings
that was a bit overwhelming;  Can anyone help?
Thanks for having me.

SUBJECT:  Re:Just found you!  Date:  97-08-19 14:29:01 EST
From:  X52hmcx

This forum is not as busy as others in the area of Down Syndrome. You will
find some other web sites and bulletin boards when you search the web.  Just
do a search with "Down Syndrome".  I found a great newsgroup the other night,
but I can't find the address right now.  I will send it or post it here if I
can locate.  I too have a 3 year old daughter with Down Syndrome.  I am sure
that another parent will be able to give you some advice.  Happy
Searching!

SUBJECT:  Music Therapy & Down's  Date:  97-08-21 06:30:19 EST
From:  HarrietSLP

Are any of you aware of a school system that employs a music therapist to
work with special ed children?  I know that music therapy is being utilized
with autistic children but was wondering if it is also being utilized
extensively with other disabilities.  I have a friend with a Down Syndrome
child and I am also this child's SLP at school.  I presently see him for both
individual and group therapy.  We are also trying inclusion in a regular K
class this year.  He is 7 years old with a mental age of about 24 months.
Also gets OT and PT services. She mentioned music therapy to me (got info
from an autistic child's parent) and asked me if I would try to find some
info on it.  Any help would be greatly appreciated!

SUBJECT:  In search of other
places!  Date:  97-08-21 15:14:41 EST
From:  Passatt558

Thanks for the note.  I would appreciate any and all places to exchange
notes.  I am a single mom who will take any help offered on any subject
including Potty training, discussions about Daddy(Tori is adopted), limit
setting and follow-through(my weakness), stranger safety(Tori doesn't have a
fear of people). Please help.  Thanks in advance!
monica

SUBJECT:  Re:Just found you!  Date:  97-08-23 23:16:50 EST
From:  Upsidjsign

Hi
IL'm the parent of a 13 yr. old young lady with DS who had the same problem
as your daughter.  She had paratoid gland surgery at age 4. One was tied off
and the other was directed into the tonsillicular fascia through a tunnel
make in the buccal cavity.  The mandibular glands were NOT touched, to ensure
that she would have enough saliva to swallow properly and keep the teeth and
gums moist and healthy.  I contacted a maxillary facial cleft palate surgeon
for this procedure, as they perform delicate oral surgery on a regular basis.
We did not do any king of surgery on her tongue, but we did have the speech
therapist ( and us, of course) do various swallowing exercises to encourage
development of tongue, lip, palate, and other muscles used in swallowing.  It
was fun for her, and she learned how to use a blender to make all kinds of
interesting milk shakes!  I hope this helps.  contact me through aol.com if
you need further info.  Thanks!

SUBJECT:  Re:Music Therapy & Down's  Date:  97-08-23 23:29:30 EST
From:  Upsidjsign

When my daughter, now 13, was about 4, I had her attend a preschool music
appreciation program at a local Montessouri school.  The program met 1x/week
for 8 weeks.  We then played the games and sang the songs at home.  She
attended for 3 summers and had a great time.  At age 8 she started Suzuki
violin lessons (her instrument choice).  The teacher started her on 15 min.
lessons & then increased this to a regular 30 min lesson by the end of the
year. She just completed a successful year as a bass drum player in the
school band and will be doing same as she begins Middle School in Sept.(no
strings in school music program.)  :(   She also began piano lessons about 1
1/2 years ago.  She enjoys playing and performing in local recitals.
I think regular community programs designed for young children (eg.
Montessouri or Suzuki) could benefit your son if a music therapist can not be
found.  Also, there is a wealth of info on montessouri and Suzuki methods in
most libraries.

SUBJECT:  upsidsign  Date:  97-08-24 16:37:50 EST
From:  Passatt558

Hey There--
Thank you for the note about your daughter's surgery--I'll discuss it with my
daughter's Pediatrician.  Tori does not have seem to be able to control the
amount of saliva, she can control her lips--it just seems to leak out
Thanks again.
This does not seem to be a very bury place, are there other places that I can
receive input?


SUBJECT:  Re:RE: INCLUSION/ Life skill  Date:  97-09-06 16:55:11 EST
From:  CROWNST

Donoralou:  Sounds like you are very angry and mom.  Perhaps, like you, she
is doing the best
she can.  Sounds like both of you don't particularly feel like you are each
being heard.  How about a behavior plan for both school and home.  Maybe
everyone would feel more
connected to this child's behavior challenges if everyone were on the same
track.  The school
should provide for a functional behavioral assessment.  Life is far more
difficult for this child and
his mom than you may know.  Be patient just a bit longer....take a deep
breathe...and look towards what can be done.

Hope you read this with the good intent in which it is being sent.  Crownst


SUBJECT:  Re:Down - Inclusion  Date:  97-09-06 16:57:12 EST
From:  CROWNST

Wilsons/Willsons: Touch Math  1  800 888-9191  Good Luck   Crownst

SUBJECT:
Young Parents  Date:  97-09-06 23:04:00 EST
From:  Susan33912

I was also 21 when my daughter was born.  She is now 12. Just like you it was
the shock of my life. I was in a daze for the first couple of months before
reality set in. But I wouldn't change anything. Lindsey is the joy of my
life. I was lucky she was born with no heart or serious health problems, and
there is not a day that goes by that she doesn't make me laugh.  I'm not
saying she's perfect, because there are some behavior problems, but when I
look back on her birth the only regrets I have is that her birth wasn't
celebrated like it should have been.

SUBJECT:  help with behavior  Date:  97-09-07 14:41:47 EST
From:  TRUESR

We have 5 year old down syndrome students in our class who run away at every
opportunity.
We have tried time out/isolation without success. Any ideas? I would
appreciate help with this dangerous situation.

SUBJECT:  Ill. Council For Exec.
Chil  Date:  97-09-08 16:34:36 EST
From:  Sherry630

If anyone has info on the ICEC annual convention and who I might contact to
attend I would be very grateful.  I would like dates and where it's going to
be, etc. and who I should call for a registration form.  Thanks for your
help.  Sherry630

SUBJECT:  Help  Date:  97-09-12 06:31:16 EST
From:  Jacqui4kid

Hi all!  I am the stepmother of a 4 year old with DS.  My husband recently
obtained visitation rights.  I must supervise the visit because I work with
Developmentally delayed children as a teacher's assistant.  However, I mainly
work with Autism.  In researching DS, I found alot of interesting things out.
Like DS kids can learn how to read, count, and even go to a regular district
school.  Is this for all children with DS?  I have suggested a few things to
his mom and she is only concerned with the medical issues.  She states that
those "other things" aren't important, if her child is dead!!!  (God forbid).
What do I do?  Should I still make an effort to teach him, even if she won't
follow through?  This child is moderately MR, non-ambulatory, and non-verbal.
In school, they aren't even working on verbalizations or signing.  They are
very concerned with motor skills, which is okay, but aren't there other
things that we should be teaching him?  Also, anyone know of the connection
of periodontal disease, & DS, I heard something, but when I mentioned it to
his mom, she knew nothing!!!  This child hasn't even seen a dentist yet.
please help!!!!!!

SUBJECT:  Re:help with behavior  Date:  97-09-13 12:52:50 EST
From:  CROWNST

TrueSR:  I am curious as to where she is going to....when during the day does
she leave....this
information can help you figure out why she is leaving the class....any
patterns?

Her leaving is, obviously, a form of communication....the challenge, as you
are cleaver eough to
know is why?  There is a reason....there is always a reason.

I'm a great problem solver.....Crownst

SUBJECT:  Re:Help  Date:  97-09-13 12:58:17 EST
From:  CROWNST

Jacqui4kid:  What type of medical problems is the mom concerned about?  What
is it that she expects you to do during the school day re those medical
concerns.  And, yes, by all means, this child needs you more than the child
that has support at home.....he doesn't have any.

Of course you should try and educate him....your instincts are "right
on"...begin at the beginning
as you would a non-disabled child....and begin with sign language,
asap....simple stuff....hell,
I want and thank you....   thank you will help when he does something he
should you can thank
him......cookie is always a good sign, eat, drink, etc.  the
basics....bathroom...

Once he picks it up....he will use it at home and the child will lead the
mother through his growth.  Yes, yes, yes, thank goodness for caring people
like yourself....let me know if you
need any help  Crownst   good luck ...  you are on the right road.


SUBJECT:  Re: Directions to SpEd Libra  Date:  97-09-13 18:19:12 EST
From:  JR575

       I would also like to be added to this mailing list. I am learning as
much as I can as my little Marky has DS.
E-mail address is [e-mail]
Thanks

SUBJECT:  Re:Down Syndrome/New to boar  Date:  97-09-13 19:13:57 EST
From:  JR575

Please e-mail your entire address to me as I was not able to use the name you
gave, and I am very interested in learning what my options are.
DS dad in Az.
[e-mail]


SUBJECT:  Re:Help for behavior problem  Date:  97-09-13 19:27:11 EST
From:  JR575

Active mom keep looking. I accidently ran into somone online who was writing
an article on DS and their sexual behavoirs. Although my son was only 1 at
the time it really opened my eyes to the possible sexual future of my son. I
must say That I was a bit shocked at what this person had to say. I would
never have thought that my perfect little angel would be able to do such
things.
Because I have researched the subject I sypathize with you and your delema.


SUBJECT:  Re:My neck of the woods?  Date:  97-09-13 19:49:52 EST
From:  JR575

Nita I have found that the parents at therapy class are a good source for
interaction. Something I do often ,and it sometimes embarasses my wife, is
walk up to parents as I see them ,anywhere, and introduce myself. I let them
know I have a son w/DS, and ask them if they go to any group meetings, social
events, or what their e-mail address is.
Good luck in your search.  Mike




SUBJECT:  Jacqui4kid        Date:  97-09-14 21:02:42 EST
From:  JKaplan29

Do you and your husband go to the individualized education plan meetings?
Parent Teacher Conferences?  Have you met with the teacher?  I don't knowwhat
the custody agreement is but it seems to me that you should be able to have
input.  It might be a place to start.  :)Janette

SUBJECT:  Re:Jacqui4kid        Date:  97-09-15 04:30:35 EST
From:  Sara4855

I agree with JKaplan you should meet the teacher, attend conferences, and be
apart of the child's education.  this is the place to start.

Sara Nerenbaum

SUBJECT:  Any advice?  Date:  97-09-21 16:11:25 EST
From:  WendiAless

 I teach 2nd grade and have a student in  my classroom with Down's syndrome.
Does anyone have any ideas that I could use with him for discipline
(currently using time out) or activities I could have him work on
independently when I am working with rest of the class?  He is currently
working on a kindergarten level.  This is the first time I have had a Down's
Syndrome child in my classroom and am at loss for what to do sometimes
especially since I have no aide.

Thanks!!

SUBJECT:  Re:Any advice?  Date:  97-09-21 21:11:25 EST
From:  Sara4855

The thing that I have always tried to get any teacher who has had my son in
their class was to treat him as you would any other student.  My suggestion
is to check with a kindergarten teacher to see what they use for discipline.
Talk to the parents.

Sara Nerenbaum
[e-mail]

SUBJECT:  Resources  Date:  97-09-21 23:13:29 EST
From:  Willsons

I can't remember if I've seen these book titles posted on here before, but
thought people who read this folder might want to know about them.
Communication Skills in Children with Down Syndrome: A Guide for Parents by
Libby Kumin
Teaching Reading to Children with Down Syndrome by Patricia Logan
Oelwein

SUBJECT:  Re:Down Syndrome  Date:  97-09-23 05:44:25 EST
From:  JRZYLILY

I am a 50+ student at Towson University, Baltimore MD, seeking a degree in
Theatre Arts.  I am seeking information from mothers of Down Syndrome
children to use as the basis for a play about  hopes and dreams which mothers
have for their children.  Information will remain anonymous unless
contributor elects to acknowledge contribution.  Serious and delicate subject
will be handled with respect.  Would also enjoy hearing from anyone who could
further direct me to other Internet resources.  Direct any replies to
[e-mail].  Thank you.

SUBJECT:  My Bro has DS but He's cool!  Date:  97-09-26 12:46:04 EST
From:  CHUCKSNOWA

My brother,Ian, has Down Syndrom, but I think he is the coolest kid in the
world. 99.9% of the time I don't relize it I hardly ever think about it.I
defend my brother alot. one time I almost broke a 13 year olds rib just
because he called him an idiot. If you want to E-Mail me please do so at
[e-mail]
My real name is Dylan ( Dillon) age 12.

SUBJECT:  Speech Ed for DS Child  Date:  97-09-27 13:41:26 EST
From:  VTFarm

I'm a new Speech teacher & have an 8-yr old Down Syndrome boy on my caseload.
I'd like some new creative ideas for lessons that will help me to assist him
in his speech. We've been teaching him some simple sign language to augment
his language, and he loves music and singing games. Thanks for your help!
-O

SUBJECT:  2cdgraderw/d.s.  Date:  97-09-27 21:26:57 EST
From:  KATYCOM

I am a sped t.a. working with a 2cd grader to assist him in a regular ed.
class. I am interested in any advice or information on: behavioral/compliance
issues, math and specifically writing: transposition of letters/crossing the
mid-line. He is very high-functioning and I want to help him reach his
potential. Please e-mail me at [e-mail]   I don't always have time to
check the various message boards. Thanks.

SUBJECT:  Re:Jacqui4kid        Date:  97-09-29 17:53:42 EST
From:  Passatt558

Get inv_olved!!That is the best advice--read, visit school, talk to Down
Support Group in your town, call Early Intervention program in your town(it
sounds like you son will have to be taught from the beginning).
In the mean time, try basic sign that we all use--up, eat, sleep.  There are
many good books to self-teach sign. Sesame Street has a book called "Sign
Language Fun" featuring the Muppets (ISBN 0-394-84212-X).  We used it alot.
My daughter started learning sign at 12 mo, and it greatly decreased her
frustration level as she could soon tell me if she want to eat, look at book,
wanted drink, etc.  I was worried about delaying her speech but when I saw
how happy she was to be understood.
Good Luck and let me know if I can be of any help.
M

SUBJECT:  Downs and Sign Language  Date:  97-09-30 10:06:36 EST
From:  Melism1

I am looking for information/experience with teaching sign language to normal
hearing individuals who are also Autistic, MI, downs...  Please let me know
if you have any info

Melissa
Melism1

SUBJECT:  Sara Rosenfeld-Johnson  Date:  97-09-30 20:26:52 EST
From:  Cheerio763

I just read an article by Sara Rosenfeld-Johnson called "Preventing
Oral-Motor Problems in Down Syndrome."  She is a speech therapist. It was
published in "Advance Magazine."  I recommend it highly.

SUBJECT:  Re:Any
advice?  Date:  97-10-04 02:41:12 EST
From:  CROWNST

Dear Wendi:  What do you mean by disciplinr?  What sort of behaviors does
this child have?
Incentives for appropriate behavior is always a positive way to
begin.....accentuate the positive
and don't give a lot of energy to the negative.....remember....attention is
attention is attention....
children that are communicating throught their behavior need to be
understood...first you need
to determine what this child is trying to communicate....start with giving
attention....far more attention to the childs positive behavior.
Crownst

SUBJECT:  Re:Down Syndrome  Date:  97-10-04 02:42:18 EST
From:  CROWNST

JRXYLILY  What sort of information are you looking for?  Can you be more
specific...Crownst

SUBJECT:  Re:My Bro has DS but He's co  Date:  97-10-04 02:44:41 EST
From:  CROWNST

Chucksnowa:  You sound like a great brother...as a mom of a kid with Down
syndrome...I am
am proud to know that there are great kids like you out there loving and
protecting their siblings...
I assume you are the type of kid that watches out for lots of other kids that
may need some
help, also.  Keep up the great work....you sound like you are pretty cool,
too.  Crownst

SUBJECT:  Re:Speech Ed for DS Child  Date:  97-10-04 21:49:34 EST
From:  C1ndysue1

There is a great Communication Newsletter called Communicating Together.
This is put out by Dr. Libby Kumin, the expert in Communication Disorders and
Children with DS.  I LOVE this newsletter...it's packed full of ideas,
information, resources, etc.  For more information, write to LBKumin here at
AOL.

SUBJECT:  Gross Motor Skills   Date:  97-10-04 21:57:52 EST
From:  C1ndysue1

Just wanted to add this new book to the resouce this...GROSS MOTOR SKILLS AND
CHILDREN WITH DOWN SYNDROME Pat WInders is the author.

And a brag...the cutie on page 187 is mine <g>.

SUBJECT:  Re:In search of other
places  Date:  97-10-04 22:05:03 EST
From:  C1ndysue1

Want to do some web browsing??  Start here:

http://www.davlin.net/users/lleshin/ds_sites.htm

The other message boards located here on AOL can be found in Keyword Dis
(general discussions and developmental disabilities and kids).

Internet Mailing Lists (and I stole this from Len Leshin)
<snip>

MAILING LISTS/NEWSGROUPS:

   1. DOWN-SYN LISTSERV/NEWSGROUP
     Begun by Bill McGarry and is often referred to as "The List" or "The
Listserv." You may subscribe to this mailing list by sending Email to:
[e-mail] and writing:  subscribe down-syn <your real
name>.    The listserv program will automatically obtain your email address
from your message.  You will get messages one at a time; however, there is
an option to obtain a single Email with 24 hours worth of messages (the
"digest" form).  To obtain the messages in digest form after you subscribe,
send another message to [e-mail] and write: set down-syn
digests=20
     The nodak.edu listserv doubles as the newsgroup
"bit.listserv.down-syn" and may be read by any newsreader that way instead
of subscribing to the mailing list.  You do not have to be a subscriber to
the listserv in order to post to the newsgroup, and newsgroup posts are
automatically sent to the mailing list as well.   However, for some odd
reason, not all messages sent to the list make it to the newsgroup.
      Archives are available at:  ftp://listserv.nodak.edu/PUBLIC/DOWN-SYN

   2. UPSNDOWNS MAILING LIST
       The second mailing list is called the "upsndowns" list and is run by
Tim and Cindy Casten.  You must be a subscriber to read and post messages.
This list is not accessible through newsgroups.  To subscribe, send email
to [e-mail]    and in the body of the message, type:
subscribe upsndowns  <your real name>.  To obtain the digest after
subscribing, send another email to [e-mail] and in the
body of the message, type:   set upsndowns digests
       If you have difficulty subscribing, send messages to:
[e-mail] or Pen [e-mail]
       Archives are located at:  ftp://home.ease.lsoft.com/LISTS/UPSNDOWNS/
                                       =20
   3. TARGETED NUTRITIONAL INTERVENTION LIST
      A spin-off of the down-syn list, this list is devoted to the
discussion of nutritional supplements for people with Down syndrome.  This
list is not intended to be either solely pro or con the use of these
supplements but a full discussion of the products.
      To subscribe, send Email to: [e-mail]  and in the
body of the message, write:  sub DS-TNI <your real name>.  The computer
will automatically obtain your email address from your message.  You will
get messages one at a time; however, there is an option to obtain a single
Email with 24 hours worth of messages (the "digest" form).  To obtain the
messages in digest form after you subscribe, send another message to
[e-mail] and write: set DS-TNI digests
       At the present time, this list also is the newsgroup
"bit.listserv.DS-TNI", but may not be on a lot of servers yet.
       Archives are available at:  ftp://listserv.nodak.edu/PUBLIC/DS-TNI
<snip>

There are other message boards located on some web sites.

Want to chat?  Check the chat schedule at Keyword PEN and also check out the
private room Down Syndrome in the evenings.  There are also chats on the
internet...you can find more information on that at the first web site I
listed above.

Cindy
Pen Cindy


SUBJECT:  inclusion  Date:  97-10-05 20:58:23 EST
From:  Whoever9

i am doing a term paper on mainstreaming special education students.  if
anyone has anything they can help me out with please e-mail me:
[e-mail].
thank you,
rachel g.

SUBJECT:  Re:Down Syndrome/ Crownst  Date:  97-10-08 18:59:16 EST
From:  JRZYLILY

Thank you for your interest.  A non-traditional aged student with a major in
Theatre, I have had over 30 years experience as a nurse.  I am hoping to get
input from parents, (Moms in particular, but Dads are OK, too) about how you
go about coming to grips with the fact that your dreams for your Down
Syndrome children will have to be modified.  Don't we all have dreams for our
children, even though most of us know that children must, in the end, find
their own way?  I am aware of some of the physical illnesses which occur as
well.  It's not easy to ask these questions, nor find someone who is willing
to share such private information, and I'm uncomfortable asking.  My own
personal experience will suffice for the rest of my project - an anthology of
4 scenes which comprise a play about dreams :  a father's sacrifice of his
dreams for his own future due to the Great Depression, a husband's decision
to institutionalize his wife, due to Alzheimer's disease, and the shattering
of their dreams to enjoy retirement together, and the toll of PTSD on the
dreams of a young married couple.  Not easy subjects to deal with, I believe
that I have the ability to translate each piece into a something meaningful,
not maudlin.  I hope to see this project through to production in 4 to 5
years.  I work full time, and only go to school part time.  Any info on
thoughts and feelings will be appreciated.  Hope I've made myself a bit
clearer.     Nancy

SUBJECT:  Re:Down Syndrome/ Crownst  Date:  97-10-11 00:14:41 EST
From:  CROWNST

Not really,  Crownst

SUBJECT:  Transition  Date:  97-10-15 16:06:01 EST
From:  Oscarsma

Does anyone know of a college in the NOrth East that will accept a student
who has Down Syndrome?  I have a 20 year old student who has been in an
inclusive program for 10 years.  He can read at the 5th grade level (with
very basic comprehension) He can spell at the 5th to 7th grade level.  He has
beautiful printing, can type 30 words a minute, and has lovely manners.  He
has had several years of unpaid office job experience in several different
types of offices. His parents want him to have an inclusive college
experience.  Do you know of a school that will consider him.  Contact me at
[e-mail]

SUBJECT:  Feeding Problems/Low tone  Date:  97-10-16 16:11:28 EST
From:  SPITEACHER

I am a special ed. teacher and have a student with DS who has very poor
muscle tone and will only walk while holding my hand or using a walker.  She
also has a feeding problem:  very sensitive to textures and can't chew.  We
have been introducing new foods processed through a blender and it seems to
be helping.  Anyone have any ideas for the feeding or low tone.  She does
receive physical therapy.

SUBJECT:  Re:Feeding Problems/Low tone  Date:  97-10-16 23:01:57 EST
From:  CROWNST

SPITEACHER  My son also had low muscle tone and feeding problems...how old is
this child?  He had a great deal of occupational therapy and it was
extremeley helpful.   Eating was
and still is a problem....however, I cooked up a big pot of vegetable soup
and put it in a blender
and he got lots of vitamins that way.  Apple sauce, mushed fruits.  He ate
and still eats lots of
wheat bread...maybe toasted might be better for this child to keep track of
this in her/his mouth.
Cottage cheese....tofu, spaghetti.  It's hard to say without more
information, but these are some of the things that my son still
eats....chicken nuggets, pizza, spaghetti, wheat bread, milk, yogurt,
vegetable soup, spaghettios....let me know if I can help further  Crownst


SUBJECT:  Re:Feeding Problems/Low tone  Date:  97-10-16 23:03:30 EST
From:  CROWNST

SPITEACHER:  As one parent I admire, respect and appreciate your dedication
to this child.  She and her parents are lucky to have you on their team.
Crownst

SUBJECT:  Re:Transition  Date:  97-10-17 20:30:13 EST
From:  Snooks47

One school that you can check re postsecondary ed for the student with Down
Syndrome is Cape Cod Community College in Barnstable.  Ask for Project
Forward.  Contact person is Bev Kimball.  I don't know for certain that
Project Forward will be appropriate, but I believe you will find Bev helpful,
and at least it's a place to start.

Deborah Smith

SUBJECT:  downs syndrome  Date:  97-10-21 12:44:40 EST
From:  RPLINDLEY

I am currently in school and working on a term paper on Downs Syndrome.  Can
I get some of your opinions on the advantages of inclusion vs. special
classes?  Disadvantages? Also I am interested in what happens to these very
special people after they have finished their formal education in school.
What are some of the options available to them?  Also do you think situations
have improved over the past few years for the mentally retarded as far as
their acceptance into society as a whole?  I would appreciate any answers
from any of you who have experience in these matters.    Thanks from a
future regular classroom teacher

SUBJECT:  Re:downs syndrome  Date:  97-10-24 01:54:54 EST
From:  CROWNST

R,Lindley:  I think that it is great that you're doing a term paper on people
with Down Syndrome.  Before you even begin to think about the answers to your
questions, I think you need to stop and think about the way you refer to
people with mental retardation.  You need to learn about "people first"
vocabulary.  People with mental retardation are people first...not mentally
retarded nothings.  The first thing you need to do is find the correct
spelling of the topic
of your term paper.

What grade are you in?  If you respond to my fax...I will share more
information with you. Crownst

SUBJECT:  Re:downs syndrome  Date:  97-10-24 10:35:42 EST
From:  Mars000210

Hello you wrote:

<  The first thing you need to do is find the correct spelling of the topic >

Terms that are used which seem to be more accepted now are Developmentally
Delayed.

It interresting that as we use so many terms now to describe older dianosises
( labels) their is more confusion as to who has what disability.

It would be nice if there was more standardization of diagnostic terms as
well as coordination of terminology between the medical community and school
community.  Then transfer that information to the general public and the
Health professional/ school personal so that everyone has better
understanding of how to help children/ socially/ acedemiclly and medically.

Things have improved though the years children used to be called lazy/ slow
learners/ stupid.
They were the wrost lablels.

Take Care Barb

SUBJECT:  Re:downs syndrome  Date:  97-10-27 00:46:37 EST
From:  CROWNST

Mars0002l0:  I actually meant the correct spelling Down syndrome....not
possessive and not
capped...Crownst

SUBJECT:  Re:Help  Date:  97-10-28 18:50:01 EST
From:  Gnewtonc

<In researching DS, I found alot of interesting things out.  Like DS kids can
learn how to read, count, and even go to a regular district school. >

As an example, my 3.3 year old son Rory (who has DS) is in an integrated
preschool with his "Typical" peers and doing great.  Rory is learning to read
(yes he is only three) and is up to 20+ sight words.  He is the only kid
(disability or no-disability) that can read in his class.  He is signing and
talking and plays very well with his friends at school.

Please help this childs mother expect more for and from her son.  However,
try to learn more about the medical issues - serious medical issues could be
holding him back.

Best,
Gillian
Mother of Rory (3.3DS) and Evan (1.3 NDA but still special)

SUBJECT:  Re:Feeding
Problems/Low tone  Date:  97-10-29 01:06:51 EST
From:  X52hmcx

I think that consultation with an OT would be helpful.  My daughter has a few
but not many troubles with food and different textures.  We have discovered
that she does want her food to have some taste!  She enjoys spicy food!
Check with your student's mom to see if she has tried some sour or spicy
foods.  You sound like a great teacher.  Keep up the good work.

SUBJECT:  Thank
you  Date:  97-10-29 16:49:01 EST
From:  SPITEACHER

Thank you for all the suggestions regarding feeding problems and low muscle
tone.  I have figured out a few ideas for my student.  Some of his feeding
problems were behavioral.  Although he does not chew he has tried a variety
of different foods for me that he refuses to do at home.  We are working with
the parents to carry this over to home.  We are also doing quite a bit of
oral stimulation using a Nuk brush that seems to help.
The physical therapist is working with this student on walking and I am
amazed at the progress he has made in 2 weeks using a walker.  He is also
beginning to take steps on his own.  Due to the fact that in the past
everyone has carried him believing he could not walk, he is very proud of his
new accomplishment.  He uses the walker independently around school but still
refuses to at home.  I have video taped him in school and he now watches it
at home.  We are hoping that this will encourage him to do it at home.
Thanks for all the suggestions I really appreciated the feedback!!!

SUBJECT:
Nutrivene-D  Date:  97-10-30 15:25:31 EST
From:  SpchDr

I'm looking for some information on this as it applies to DS children.  I've
found a website, but it's mainly testimonials from a parent and others
requesting information.  Anyone have a good website with some hard data I can
check out?  Thanks.....

SUBJECT:  Sign Language  Date:  97-11-06 09:14:21 EST
From:  SozoRapha

I am a graduate student doing research on the effective use of sign language
as a means to help the child with down syndrome who is non-verbal or who has
poor or limited communications skills. Are there any resources that are out
there that I can use. I need help soon.
[e-mail]

SUBJECT:  Re:Young Parents  Date:  97-11-20 22:33:29 EST
From:  KNied10607

Angie,

I am a mother of a 18 month old little girl, Jenna.  I was 31 years old when
she was born.  My husband and I were very shocked because this was our second
child and our first child was perfectly normal.  Jenna however is doing so
well in an early intervention program which she attends 2 days a week.  She
is using sign language and is signing about 10 words and just recently has
begun to stand up by herself and is ready to begin to walk!  My greatest
Christmas present would be for her to walk.  Although, we think the best
Christmas is our little Jenna.  I hope this is some encouragement for you.
Would you like to talk some more please respond.

Annette

SUBJECT:  Re:Feeding Problems/Low tone  Date:  97-11-21 18:13:53 EST
From:  OromotorSP

Feeding problems in some children with Down Syndrome are frequently secondary
to weak jaw muscles, low taste bud sensation and difficulty feeling foods in
the mouth (hypo-sensitivity).  It sounds like your child would benefit from
seeing a speech pathologist who has learned to address these problems.  We
have found that if we can improve the feeding skill levels we can improve the
speech clarity.  If you e-mail me  and tell me where you live, I may be able
to hook you up with a speech pathologist who has taken my class.     Sara
Rosenfeld-Johnson

SUBJECT:  suggestions for tutoring dow  Date:  97-11-25 15:59:21 EST
From:  Tnuts21

I am tutoring a boy who is 27 and has down syndrome. My major is EH/LD.  I
need suggestions for fun activities.  He needs to work on money,time,and
social skills.  I need something fun that will keep his attention.  Please
send suggestions.  e-mail [e-mail]

SUBJECT:  Suggestions   Date:  97-11-25 16:01:33 EST
From:  Tnuts21

I am tutoring a 27 year boy with down's.  I need help in making the
activities fun and interesting.  He needs to work on social skills,money,and
time.
                                          e-mail [e-mail]