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----------------------------------------------------------------------
(6) Tue 2 Mar 93 9:31a
By: Gordon Gillesby
To: All
Re: MARCH FUTURITY NEWSLETTER
----------------------------------------------------------------------
This message was from GORDON GILLESBY to ALL originally in conference
MCET_TNET and was forwarded to you by GORDON GILLESBY
The following online newsletter has been received at DRAGnet.
(612/753-1943; 1:282/1007; 94:6120/1; 255:1612/106; 16:612/33) It may
be read online, downloaded from file area #2 or by file request (FREQ)
using the filename:
PCDD9303.ZIP
The table of contents has been displayed below to give you
some idea of the newsletter's contents.
- - - - - - - - - - - - - - - - -
FUTURITY
Newsletter
March 1993
- - - - -
March Issue Contents
TASK FORCE REPORT `STRONGLY ENDORSED':
INVEST IN TRAINING SYSTEM FOR DIRECT CARE PROVIDERS AND FAMILIES
RESEARCH SUPPORTS INCLUSIVE SCHOOLS:
INTEGRATION YIELDS HIGHER PERFORMANCE
HEALTH CARE SUGGESTIONS REQUESTED
FAMILY RESOURCES FROM THE ARC
NATIONAL EDUCATORS CALL FOR INCLUSIVE SCHOOLS
UNITED NATIONS SETS WORLD AGENDA ON DISABILITIES
Part Four in a Monthly Series
QUALITY FAMILY SUPPORT PROGRAMS SOUGHT
CONSUMER RIGHTS PROJECT SERVES PERSONS WHO ARE DEAF
<--> Upcoming Events <-->
-**- Lending Library -**-
(*) (*) (*) Publications (*) (*) (*)
- - - - -
Futurity Newsletter TEV (The Electronic Version)
Gordon Gillesby, editor and publisher
Published on DRAGnet BBS
Disability Resources, Activities and Groups Network
The electronic version of the Futurity Newsletter is produced from
materials provided by the Governor's Planning Council on
Developmental Disabilities as a special 501c3 project of the
Disability Rights Alliance.
Futurity is Available on Audio Cassette -- please tell your
friends and associates who do not read print that they can request
this monthly newsletter in audio cassette format. Call:
612/296-4018
(voice); 612/296-9962 (TDD).
For more information or to submit material for future Futurity
publication, please contact:
Roger Strand
Governor's Planning Council on Developmental Disabilities
Minnesota Department of Administration
300 Centennial Building
658 Cedar Street
St. Paul, MN 55155
612/296-9963
* Mail your ideas written on the back of a $20 bill to...
* Origin: DRAGnet - Disability Resources - (612) 753-1943 (1:282/1007)
----------------------------------------------------------------------
(42) Thu 11 Mar 93 8:12a
By: Robert Schoenfeld
To: Jeffrey Vandyke
Re: Help needed
----------------------------------------------------------------------
Jeff
Electric door strikes with keypad entry are commerciallly
available and may be the answer to your problem the complete system
runs about $500. including the door release(installed). Contact me
for furthur info either via this echo or telephone 800-366-4633 8am
6pm est
Bob
# Origin: Rooselvelt Warm Springs, Georgia (94:7069/1)
----------------------------------------------------------------------
(49) Tue 16 Mar 93 6:27a
By: Jeffrey Vandyke
To: Robert Schoenfeld
Re: Help needed
----------------------------------------------------------------------
-=< Robert Schoenfeld was heard to say to Jeffrey Vandyke
-=< On 03-1193 08:12
RS> Electric door strikes with keypad entry are commerciallly
available and may be the answer to your problem the complete
system runs about $500. including the door release(installed).
Contact me...
This is interesting, but I am not sure to what message you are
responding. I have built my own electric entry stuff in the past, but
it was with commercially-available garage door controls, and the user
could keep the control mounted on their chairs or bedside, wherever it
was most convenient.
Jeff
... Optimist: A wheelchair user with a trailer hitch!
* Origin: Project Enable - Dunbar, WV (ADAnet 94:3040/1) (FidoNet
1:279/14)
----------------------------------------------------------------------
(52) Wed 17 Mar 93 7:12a
By: Eileen Hausch
To: Jeffrey Vandyke
Re: Help needed
----------------------------------------------------------------------
-=> Quoting Jeffrey Vandyke to Robert Schoenfeld <=-
RS> Electric door strikes with keypad entry are commerciallly
available and may be the answer to your problem the complete
system runs about $500. including the door release(installed).
Contact me...
JV> This is interesting, but I am not sure to what message you
are responding. I have built my own electric entry stuff in the
past, but it was with commercially-available garage door controls,
and the user could keep the control mounted on their chairs or
bedside, wherever it was most convenient.
I don't know which message it was either, but the DAK catalog has the
keypad entry locks (which also have a backup key) for $99 (not
installed.) Not remote like you built though ... just the normal on
the door thingies.
* Origin: Farnham's Freehold La Mesa, CA (619)668-0288 (1:202/732.0)
----------------------------------------------------------------------
(50) Thu 18 Mar 93 9:10p
By: Earl Appleby
To: All
Re: Reach Out (1/2)
St: Local
----------------------------------------------------------------------
ABLEnews Reprint
Reach Out
March 1993
Table of Contents
Title (Type): Author (Page):
Social Club Update (Info) Holly Clark (3)
One Step Forward (Advocate) Steve Hutchinson (3)
Quote: The regaining of one's mental health can be a rocky
road to travel. One must cope with disappointments and
setbacks and the falling short of one's personal
expectations, often at times when one would like to
accomplish so much and at the same time feels so
thwarted in the achievement of his or her goals. I
would like the recovery process to be a quick and easy
process, but I find it to be more complicated and
difficult than I had imagined, a rockier road than I
thought I would have to travel....It has been said that
when you come to the end of your rope, tie a knot and
hang on. That may be just the time when it is hardest
to do that. At such times talking to persons you trust
will help to put things in perspective and to give you
a hold on things and handle the situation in a way that
you didn't know you were able to do. Learning to deal
with ourselves in a "kinder, gentler" manner is part of
the recovery process--knowing when to challenge
ourselves and push ourselves, yes, but also knowing
when we need a rest. We must reeducate ourselves in the
way we deal with ourselves.
On a Street Named Elm (Poetry) Steve Hutchinson (3)
Mothers & Daughters (Personal) Dina Dietrich (4-5)
Quote: The relationship between a mother and a daughter is
never a simple one. The mother-daughter bond is
intense, encompassing a range if emotions from deep
love to violent hatred. But it is a bond that affects
every woman very strongly during the course of her
life. We women, all of us, have been daughters, and
some of us are also mothers...In Tangled Vines, Lyn
Lifshin has edited a collection of poems about mothers
and daughters written by many contemporary women poets,
including Tess Gallagher, Marilyn Hacker, Carolyn
Kizer, Maxine Kumin, Audre Lorde, Sharon Olds, and
Kathleen Spivack, to name a few.
A Little Bit About Maya Angelou (info) Steve Hutchinson (5)
Notes on Creativity (info) Patricia Gibbons (5)
Quote: It has been found in studies that "many highly
intelligent people are not at all creative, and many
highly creative people are not especially bright. An
overview showed that the most creative subjects took a
sceptical view of formal education and had been utterly
undistinguished in classes that did not interest them."
The profile that emerged showed "a person much more
willing to trust his intuition than average and ready
to run risks." Other traits showed a highly developed
sense of individuality, independence, and strong
motivation."
The Loony Bin Trip (Info) Dinah Dietrich (6-7)
Quote: The Loony Bin Trip by Kate Millett is a thought
provoking book...There are very few examples of the
literature of madness--not many people who have lived
through madness (or psychiatric problems) have written
about their experiences. Perhaps this is a kind of
taboo on this kind of writing--perhaps because of the
public disapproval or nonacceptance of those who have
experienced mental illness, perhaps because one who has
experienced it may feel, when recovered, that it is
best forgotten and swept under the rug in favor of
"normalcy"--whatever that is....I myself have never
written about it, feeling that I would rather write
about anything else.
Where to Send Letters (Advocate) Dinah Dietrich (7)
Clozapine & Tardive Dyskinesia (Info) Dinah Dietrich (7)
Quote: Prior to the discovery of clozapine, the main
treatment for schizophrenia has been the use
of neuroleptic drugs such as Thorazine,
Stelazine, Mellaril, et al. The long term use
of these medications can sometimes cause the
development of tardive dyskenesia, which is
an involuntary movement disorder that can
affect the facial region, the trunk, and the
upper and lower extremities....The majority
of TD cases are mild, and if caught in time,
are reversible....However, for patients with
chronic schizophrenia, the discontinuation of
medication is a practical impossibility...
With the advent of clozapine, there is new
hope. [For a reprint of the complete series
of articles on clozapine, please send a self
addressed, stamped envelope to: Reach Out,
730 State Street, Schenectady, NY 12307.]
A Short Song on Thinking (Poetry) Anonymous (7)
Unitled (Poetry) Leath Leonard (8)
Evita (Review) Patricia Gibbons (8)
Silenced or Choosing to be Silent (Advocate) Michael Abair (8)
Quote: I have been in the mental health system for over three
years. From almost day one I was overwhelmed by
complaints of how mental health consumers are not
listened to. "Nobody asks us what we think we need."
and "There's never any money to treat our illness." I
have attended conferences on empowering the consumers.
They preach how officials never listen to them until
they brought legal action against them. The one thing
they never discussed is consumer apathy. Why is it that
when consumers are given the opportunity to say what
they feel, they choose to remain silent.
Elements of Life (Info) Anonymous (9)
Quote: Isolation is never good for anyone. People are social
beings and we all need other people to make our lives
meaningful. You may have some acquaintances, some
casual friends. These are friendly faces of people that
will make you feel less alone. You may have some
friends who you enjoy going out and doing things with,
or friends who want to sit and have a cup of coffee
with you, to help break the loneliness that many of us
feel. You need to work on developing a few really close
relationships...Most people might have one or two
people that they are really close to. To sit and talk
with someone who really knows and understands you and
who cares about you, someone who will be supportive and
loving, is worth all the medication in the world.
True Friends (Poetry) Deb Seel (9)
I have three pals whom I can trust
to be the perfect friend.
They'll be my pals forever
until the very end.
These friends I have are cats
so faithful and so true.
They know when I am happy,
They know when I am blue.
They come to me at night
When all is cold and dark
My loneliness is over--
in my heart I feel a spark.
To feel their fur so warm and soft
beneath my trembling hand.
Renews in me a kind of hope
and loneliness is banned.
They accept me as I am
even when I'm mad
This serves to reassure me
that I am not all bad.
They give me hope and courage
even on difficult days
Their steadfastness reminds me
bad moods are just a phase.
For with each day I grow stronger
to face klife's ups and downs
And ever to cheer me onward
are my three fuzzy clowns.
So if you're feeling lonely
if you're feeling blue
Find yourself a faithful friend
just get a cat or two!
Chuckles and Groans (Humor) Mike Abair (back cover)
Quote: There was a chess tournament being held at a major
hotel here in town. The contestants were being very
arrogant, as only chess players can be. They were
hanging about the lobby, bragging about how great they
played. The manager of the hotel got quite tired of
hearing nothing but these braggarts in his lobby, so he
threw them all out on the street. A bellhop who
witnessed the spectacle asked the manager why he tossed
them out, losing all that business. The manager
replied, "IF THERE'S ANYTHING I CAN'T STAND, IT'S CHESS
NUTS BOASTING IN AN OPEN FOYER."
F.Y.I.
Reach Out is "a monthly newsletter published cooperatively by and
for mental health consumers as a vehicle of information to their
community, as well as providing a format for creative expression
from all contributors." [Reach Out; 730 State Street;
Schenectady, NY 12307; 518-381-3995.]
* Origin: ABLEnews...your computer's window on the world. (1:262/4)
----------------------------------------------------------------------
(68) Sat 20 Mar 93 12:11p
By: Gordon Gillesby
To: All
Re: IOWA AGRIABILITY PROJECT
----------------------------------------------------------------------
IOWA AGRABILITY PROJECT: INNOVATIONS THAT WORK FOR HOME AND FARM
The Iowa AgrAbility Project is a program to help farm families
affected by disabilities adapt their homes and farms. People with
disabilities can remain in farming and can continue living in their
own homes. Disabilities may be the result of farm or non-farm
accidents, or health-related conditions such as stroke, heart attack,
arthritis, or cancer.
Farm families need innovations that work for home and farm. This
program helps families:
* Modify tools, equipment, and machinery,
* make home and farm buildings more accessible,
* find services that meet their specific needs.
-- Awareness
Demonstrations of assistive technology and labor-saving devices for
home and farm are part of a large display called "A Home for All
Ages." The "Home" features a variety of low- and hi-tech technology
and accessibility designs for a living/sleeping room, a kitchen, and a
bathroom.
Future events at which you can visit this home are the Iowa Pork
Producers at the Convention Center is Des Moines, Iowa - January
26-28, 1993; the Mason City Home Show, Mason City, Iowa - February
26-28, 1993; the Farm Progress Show, Amana, Iowa - September, 1993;
and the Iowa State Fair - August, 1994. Check with your local
extension office for these events and others that might be scheduled
in your area.
-- On-site Assistance from the FaRM Program
Staff from the Farm Family Rehabilitation Management (FaRM) Program
will offer on-site assistance in adapting home and farm operations to
accommodate specific disabilities.
The Iowa AgrAbility Project is a joint effort of Iowa State University
Extension and the FaRM Program of the Easter Seal Society of Iowa,
Inc., partially funded by a grant from the U.S. Department of
Agriculture. For further information on these projects contact:
Mary H. Yearns Therese Willkomm
AgrAbility Project Director Director, FaRM Program
166B LeBaron Hall Easter Seal Society of Iowa
Iowa State University P.O. Box 4002
Ames, Iowa 50011 Des Moines, Iowa 50333
(515) 294-8520 (515) 289-1933
InfoTech aids individuals with disabilities, parents, families, and
professionals by providing information on the availability of both new
and used adaptive devices. No endorsement of products or services is
intended. This article is from InfoTech Newsletter and may be
reprinted with attribution; letters and submissions are welcome. For
more information or to submit material for publication, please
contact:
INFOTECH
Iowa Program for Assistive Technology
Iowa University Affiliated Program
University Hospital School
The University of Iowa
Iowa City, Iowa 52242-1011
1-800-331-3027 (voice/TTY)
* All wiyht. Rho sritched mg kegtops awound?
* Origin: DRAGnet - Disability Resources - (612) 753-1943 (1:282/1007)
----------------------------------------------------------------------
(73) Sat 20 Mar 93 12:40p
By: Gordon Gillesby
To: All
Re: ARC RESOURCES AVAILABLE
----------------------------------------------------------------------
FAMILY RESOURCES FROM THE ARC
Siblings: Brothers and Sisters of People Who Have Mental Retardation
(Fact Sheet, January 1993), provides an overview along with references
for further reading about: 1) what are some of the concerns siblings
have? 2) What are the benefits? 3) what positive actions can parents
take? 4) what is being done to address concerns that siblings have?
Family Support: A Check for Quality (1993), provides a four-page,
comprehensive check list for evaluating the quality of supports
available to families. Specific quality indicators are provided in the
areas of: information and planning, service availability, staffing,
and program values. Helpful tips are provided for obtaining better
supports to families. For copies, contact the Minnesota Governor's
Planning Council on Developmental Disabilities or, Family Support
Project, The Arc, National Headquarters, P.O. Box 1047, Arlington, TX
76004. 1-800- 433-5255 (voice), or 1-800-855-1155.
This article is from FUTURITY Newsletter and may be reprinted with
attribution; letters and submissions are welcome. For more
information or to submit material for publication, please contact:
Roger Strand
Governor's Planning Council on Develomental Disabilities
Minnesota Department of Administration
300 Centennial Building
658 Cedar Street
St. Paul, MN 55155
612/296-9963
* Answers: $1, Correct answers: $5, Dumb looks: Free!
* Origin: DRAGnet - Disability Resources - (612) 753-1943 (1:282/1007)
----------------------------------------------------------------------
(77) Sat 20 Mar 93 1:34p
By: Gordon Gillesby
To: All
Re: PUBLICATION AVAILABLE
----------------------------------------------------------------------
(*) (*) (*) Publications (*) (*) (*)
Teenagers at Risk: A National Perspective of State Level Services for
Adolescents with Chronic Illness or Disability. National Center for
Youth with Disabilities, 1993.
A national study of state social, health, and education agencies
concludes that: "The single, overwhelming impression the data give is
that adolescents with chronic health care needs and disabilities are
not considered a priority--either for funding or for programming."
With the increased survival rate of youth with chronic health
conditions, coupled with the relatively low priority given to services
for teens, there is a strong challenge and need to provide social and
psychological support for children and their families beyond
childhood. "We must expand our horizons, our mandates, and resources
to assure that all we have achieved in childhood is not lost in
adolescence," the authors of the report implore. Specific
recommendations are directed to national and state agencies.
Contact: National Center for Youth with Disabilities - University of
Minnesota, Box 721--UMHC, 420 Delaware Street, Southeast, Minneapolis,
MN 55455. 612/626-2825 (voice), or 1-800-333-6293, (toll-free), or
612/624-3939 (TDD).
* Back Up My Hard Drive? I Can't Find The Reverse Switch!
* Origin: DRAGnet - Disability Resources - (612) 753-1943 (1:282/1007)
----------------------------------------------------------------------
(78) Sat 20 Mar 93 1:46p
By: Gordon Gillesby
To: All
Re: FACILITATED COMMUNICATION
----------------------------------------------------------------------
(*) (*) (*) Publications (*) (*) (*)
Facilitated Communication Resource Guide, Annegret Schubert, Ed.,
Adriana Foundation, 1992.
This guide is intended to be used in conjunction with hands-on
training, and by those already using facilitated communication.
Facilitated communication is about connecting and communicating with
people who are unable to make their bodies do what they want them to
do, to say the thoughts they have, to respond to what they hear, to
control their behavior. The method involves physical, emotional, and
verbal support to allow the person to access letters on a keyboard for
spelling. Cost: $22.00.
Contact: The Adriana Foundation, 2001 Beacon Street, Suite 214,
Brookline, MA 02146. 617/262-0387.
* Backup not found: (A)bort (R)etry (P)anic
* Origin: DRAGnet - Disability Resources - (612) 753-1943 (1:282/1007)
----------------------------------------------------------------------
(80) Sat 20 Mar 93 10:32a
By: Gordon Gillesby
To: All
Re: IPAT NEWSLETTER 0701 NOW
----------------------------------------------------------------------
The following online newsletter has been received at DRAGnet.
(612/753-1943; 1:282/1007; 94:6120/1; 255:1612/106; 16:612/33) It may
be read online, downloaded from file area #2 or by file request (FREQ)
using the filename:
IPAT0701.ZIP
The table of contents has been displayed below to give you some idea
of the newsletter's contents.
InfoTech Newsletter
January/February, 1993
Volume 7 No. 1
Inside...
this issue you'll find
articles on building a home
that's accessible from the start
and the Home for All Ages,
Plus...
BARRIER-FREE FROM THE GROUND UP
PROGRAMS FOR TRAINING
LIBRARY ACCESS FOR PEOPLE WHO HAVE PRINT IMPAIRMENTS
PUBLIC ACCOMMODATIONS AND THE ADA
FYI...
IOWA AGRABILITY PROJECT: INNOVATIONS THAT WORK FOR HOME AND FARM
USED EQUIPMENT REFERRAL SERVICE (UERS)
\\++// Equipment for Sale \\++//
\\*// Looking to Buy \\*//
- - - - - - - - - - - - - - - - -
INFOTECH
Iowa Program for Assistive Technology
Iowa University Affiliated Program
University Hospital School
The University of Iowa
Iowa City, Iowa 52242-1011
1-800-331-3027 (voice/TTY)
* 668 - Neighbor of the Beast
* Origin: DRAGnet - Disability Resources - (612) 753-1943 (1:282/1007)
----------------------------------------------------------------------
(89) Tue 23 Mar 93 5:23p
By: Earl Appleby
To: All
Re: NTASG News
St: Local
----------------------------------------------------------------------
ABLEnews Resource
North Texas Amputee Support Group News
March 1993
March Meeting (1)
Our speaker will be Robert Lujano, a student with quadrilateral below-
elbow and above-knee amputations. He'll be talking about himself and his
experiences.
Diabetic Amputee Survey (1)
Anne Pare, a student in the Prosthetic-Orthotic program at the University
of Texas Southwestern Medical Center, is conducting a research study. She
would like to find diabetic amputees to complete a short survey on foot
care. If you can help, please contact Anne at: 1114 Cherrytree Dr.;
Arlington, TX 76017 (817-468-4337).
Ask a Friend (1)
"If every active member could think of one other amputee to invite
to...(a) meeting or asked that person if they would be interested in
getting the newsletter..., I think we would all benefit...We've finished
a simple poster and have almost completed a brochure that tells who the
NTASG is and why we're here...We will get them out to the hospitals,
rehabilitation facilities, and prosthesists offices...If you have good
ideas of places to put posters and brochures, or better yet, are willing
to drop them off at these places, please let us know. There's too many
people out there who don't know about us yet! --Rob Thurlow, editor.
ABLEnews Note: We agree and encourage interested individuals to contact
the North Texas Amputee Support Group (NTASG) at the address below.
Looking for a Meeting Place (1)
NTASG is looking for a more accessible meeting place central to the
Dallas end of the Metroplex, that is free or inexpensive and wheelchair
accessible. If you know a possible place, please advise NTASG. Thanks.
Modern Wound Care (2)
NTASG's February meeting featured Dr. Ronald Scott of the Wound Care
Clinic of North Texas. Founded in October 1990, the clinic treats 600 to
700 hard-to-heal wounds annually. While careful patient evaluation and
aggressive, conventional wound care are employed, the clinic is best
known for its "high-tech" treatments using growth factors prepared from
the patient's blood. The largest single group of individuals suffering
from hard-to-heal wounds are diabetics. In the US alone, 40,000 am-
putations are performed each year as a result of diabetic complications.
New Game Legislation (3)
A bill to regulate the hunting and harvesting of attorneys....372.02
Taking of attorneys with traps or deadfalls is permitted. The use of
United States currency as bait is, however, prohibited...372.06 It is
unlawful to hunt attorneys within one hundred (100) yards of BMW,
Porsche, or Mercedes dealerships, except on Wednesday afternoons...372.10
Bag Limits Per Day:...Back-stabbing Divorce Litigators: 3; Horn Rimmed
Cut-throats: 2; Honest Attorneys: Protected (Endangered Species). --This
piece was posted to ADAnet by Gordon Gillesby. ABLEnews Note: We hope you
have a good attorney, Gordon!
Please Join Us! (4)
The North Texas Amputee Support Group (NTASG) meets on the third Sunday
of every month at 1:30 PM in the parlor of St. Thomas the Apostle
Episcopal Church at the northwest corner of Inwood and Mockingbird in
Dallas. Upcoming meetings include: April 18 and May 16, 1993.
F.Y.I.
For further information about the NTASG News or the NTASG itself, contact:
North Texas Amputee Suport Group News; 3714 Lisa Lane; Mesquite, TX 75150;
214-289-5775. Or netmail its editor, Rob Thurlow, SysOp of the National
Amputee Connection at 1:124/5109 (214-238-0928), a fine board to join our
ABLEnews conference on, I might add! --EA Jr.
...For further information, contact CURE, 812 Stephen Street, Berkeley
Springs, West Virginia 25411 (304-258-LIFE/258-5433).
* Origin: ABLEnews...your resourceful friend. (1:262/4)
----------------------------------------------------------------------
(112) Sun 28 Mar 93 12:31a Rcvd: Tue 30 Mar 11:25p
By: Jim Jones
To: Earl Appleby
Re: Re: NTASG News
St: Rcvd
----------------------------------------------------------------------
EA> ABLEnews Resource
North Texas Amputee Support Group News
March 1993
For further information about the NTASG News or the NTASG
itself, contact: North Texas Amputee Suport Group News; 3714
Lisa Lane; Mesquite, TX 75150; 214-289-5775. Or netmail its
editor, Rob Thurlow, SysOp of the National Amputee Connection
at 1:124/5109 (214-238-0928), a fine board to join our ABLEnews
conference on, I might add! --EA Jr.
Earl, as the President of NTASG I would like to express our thanks and
appreciation for your support.
Jim Jones
... Optimist: A wheelchair user with a trailer hitch!
* Origin: Nat'l Amputee Connection, Dallas TX (214) 238-0928 (1:124/5109)
----------------------------------------------------------------------
(113) Wed 31 Mar 93 11:42p
By: Earl Appleby
To: Jim Jones
Re: NTASG News
St: Local
----------------------------------------------------------------------
> Earl, as the President of NTASG I would like to
> express our thanks and
> appreciation for your support.
> Jim Jones
My pleasure, my privilege, Jim. Please keep our ABLEnews gang
posted on the latest in the Lone Star state. Thanks for your kind
words. As Clint said when he got his oscar for best director,
"you've made my day." <grin>
Keep up the good work!
Regards,
Earl
* Origin: You've got a friend at ABLEnews. (1:262/4)
----------------------------------------------------------------------
(114) Sun 28 Mar 93 11:19p
By: Rick Venuto
To: All
Re: DADA Newsletter
----------------------------------------------------------------------
Why a Regional Support Network?
Why daDA? Why Now?
by Martin Sweeney
At our last meeting the business of a purpose & goal statement, the
draft of by-laws, and the review of a funding proposal all had the
sobering effect of having each of us take a closer look at just what
it is we are starting to build.
In the discussion, it became clear that there are different
points-of-view and different needs. Some are looking for immediate
support, a place to meet and network with other dads. Some are looking
for ways to influence social, educational and legislative agendas.
Some are just looking for a safe place.
If there was a consensus it was that the form, structure and purpose
of daDA are evolving. It is not one thing. We must carefully listen to
the needs we bring to the group and consider how best those needs may
be served.
So what is daDA? Is it a support group or just another well-meaning
but still bureaucratic organization? While the debate continues, a
little history may be of some value. The idea for a regional support
network came from a conversation among dads at a local fathers support
group. One dad asked whether there was some way to share our
experience (as a dads support group) with a wider, larger group of
fathers with children with disabling conditions. How could this be
done and what shape would it take?
Our experience within the support group has been shared for more than
two years, with a relatively small group of about ten dads meeting on
a monthly basis. The strength of the group has come in large measure
from the intimacy of its smallness. So how could we translate the
value of our experience to a regional network encompassing all of Los
Angeles County? One doesn't need to run the numbers to appreciate the
dilemma of such an outreach. From that initial conversation came the
Dads & Special Needs Conference that was held last December. The
conference was a general effort to float some of the issues unique to
fathering a child with special needs. The conference was a great
success and created a momentum which has led to our current efforts to
construct a regional support network.
The interest expressed at the conference and subsequent meetings is a
response to an atmosphere of mutual support; not for structure, or
by-laws or funding proposals, but for one another. Dads have been able
to comfortably talk about issues in their lives and in the lives of
their children. There has been a clear expression to dispense with the
undue - and often irrelevant - organizational protocol. An evening
meeting cluttered with motions and quorums is not what dads are
seeking.
Here's where it gets a little slippery. We do, however, need a form
(or structure) - no matter how formal or informal - to function. The
clearer we are about how we want to function, the greater the
likelihood that the "form" will not get in the way of our purpose.
So for now, I ask for your patience. In the beginning, when you may
perhaps be the most curious, most in need, or most suspicious, please
don't be discouraged by this initial stage of organization. Some of
this stuff - purpose & goal statements, by-laws, funding proposals -
is inevitable. We will do everything we can to keep it at a minimum
and secondary to the experience and needs we share in common.
My hope is that we might be able to create a regional support network
that will serve to function as a clearinghouse of information, as a
source of networking, and as a vehicle to plan and conduct quarterly
workshops on topics specific to the needs of fathers. One purpose
would be to assist fathers - by interest, neighborhood, or schedules -
in organizing and maintaining smaller, local father support groups.
In this issue of the daDA newsletter, two dads - Gregory Burns and Sam
Bhang - share their thoughts on creating a regional support network.
Each of us brings our own personal needs and expectations to this
organizing effort. We are just beginning this process and must take
careful measure of what the person next to us has to offer. It is the
hope of this publication that other viewpoints will be expressed and
you are encouraged to do so. The goal of this publication is to
expand the dialogue and share information. If you have something you'd
like to say, an event or announcement you'd like to publicize, a photo
you'd like printed, or even a poem you'd like to share, send it along.
This publication is a tool and for it to have any value it must be
used. Material can be sent to: daDA, 6118 Del Valle Drive, Los
Angeles, CA 90048. If you have any questions call me at (213)
933-2983.
Martin Sweeney lives in Los Angeles. His daughter Eva is 10-years-old.
The Healing Power of Support
by Gregory Burns
I have high hopes for daDA especially when it comes to support. After
our baby daughter was diagnosed with "Ring 14" an extremely rare
genetic disorder, my wife and I felt incredibly alone. A physical
disorder is an overwhelming and sometimes irreversible situation but
luckily "aloneness" is a disorder that can be treated with a simple
prescription of a few phone calls.
My wife did exactly that and contacted two groups NORD [National
Organization for Rare Disorders (203) 746-6518] and MUMS [Mothers
United for Moral Support (414) 336-5333]. MUMS is an organization that
provides support to families who have children with any disorder. MUMS
also provides a disorder database which is a list of parents whose
children represent over 600 disorders ranging from rare to common.
This list was invaluable for us because it got us in touch with a
couple in Wisconsin who have a two-year-old daughter with "Ring 14."
The contact from the disorder database not only provided us with
people who could relate with our child's disorder but they also
informed us about Depakote an alternative drug (instead of
Phenobarbital) for treating seizures. So far the Depakote has worked
out very well for our daughter Camryn.
I truly believe in the healing power of support. In our case a support
group (namely MUMS) made a huge difference for us. MUMS by the way was
started by one woman, Julie Gordon, who has a disabled daughter and a
computer. I can't imagine how many people she has helped through the
organization she started.
So support is out there and is as accessible as a phone call. My hope
for daDA is that we can sow the seeds of hope like MUMS did for us.
The power of support can help break the ╥loneliness╙ factor that faces
all of us. I know it for a fact. Our family is living proof thanks to
MUMS.
Greg Burns lives in Glendale. His daughter Camryn is twenty-one-months
old.
Play Ball! - Challenger Baseball
The crack of the bat, the smell of a broken mitt, the arc of a high
pop, the taste of clover in your teeth, the grit of a safe slide into
home. Baseball. For so many of us these early memories were born in a
time and place known as Little League. It hardly mattered whether we
would ever excel or even develop a love for the game, what mattered
was the ritual. It was a time for fathers and sons (now, thankfully,
mothers and daughters too).
Little League occupies a powerful place in our culture where young
people encounter dramatic opportunities to discover themselves. The
Little League national organization╒s mission is to offer a structured
athletic activity for each child in the community, developing in its
participants the disciplines of teamwork, citizenship, and fair play.
Without much exaggeration, Little League is very much a community rite
of passage. So why not for everyone? Why not for our kids? Well, the
good news is that our kids - girls as well as boys - can and are
encouraged to participate in Little League. The Little League
organization has a Challenger Division. The most fundamental goal of
the Challenger Division is to give everyone a chance to play,
regardless of limitations. Playing with the same equipment on the same
fields, Challenger Division participants learn not only the
fundamentals of baseball, but also how it feels to be just like other
children - pulling together as a team, being cheered, and earning
awards for their achievements.
Its hard to imagine many other recreational activities more
appropriate to our children and our roles as fathers. It's a great
opportunity for your kid to meet other kids. It's also a unique
opportunity for you to meet other dads.
No, it's not the Little League of your youth or dreams, but it can
very well be the Little League for your child. There are a number of
Challenger Division teams in Southern California. Here are a number of
contact numbers you can call for further information:
Culver City
Monique Van Gerwen, (310) 398-0205
Joy Bishop, (310) 838-2912
Eagle Rock
Karin Reinhard, (818) 241-9784
Myrian Magaûa, (213) 255-7357
Reflections
by Sam Bhang
I have started this article several times and each time a whole flood
of thoughts and emotions come over me and I tend to get bogged down.
So, if I may, I would just like to jot down some reflections to share
with you. I am writing from the perspective of a father and my
knowledge has come from the familiar OJT - "On the Job Training."
I am the father of twin, 18-year-old sons, John and Kenneth, who have
both been diagnosed as "high-functioning autistic." I sometimes feel
it is unfortunate to have to label a disability, partly because that
label may create misunderstanding or misinterpretation. Autism is one
of those disabilities that is very difficult to define. Parents of
autistic children recognize the symptoms but to explain them in just a
few words find themselves lacking.
I do not feel comfortable in holding my sons up for scrutiny and
observation, It is a very private thing and it is even harder for me
to be eloquent when it comes to my own shortcomings as a dad. I know
my shortcomings and I am being tested all the time. Even though I
have these reservations, I joined daDA because I hope that I can be
helpful to any of you by sharing my experiences, skills and empathy.
And I hope to receive back from you the same. We can provide support
and enlightenment for each other. My boys are very high-functioning
in many ways and for that I am grateful. Many of their deficiencies
are in the are of social interaction. To paraphrase from the Autism
Society of America╒s definition of autism, they have "processing
delays." It takes them longer to understand a message, figure it out
and then make a response. Messages are delayed, get interrupted or
never get interpreted accurately. These deficiencies cause them
problems in conversations. They are not good in making ╥small talk,╙
as mundane as that may seem. They need to have instructions repeated
many times as they have short term memories. And yet, they can
remember names, dates, facts and situations that my wife and I find
hard pressed to recall. They learn many things by rote. My hope is
that this repetition process of learning will eventually connect so
that the memorization will be replaced by being able to think out each
problem or situations as it presents itself.
John and Kenneth have the same emotional, communication and social
needs as any ╥normal╙ children. Their problem is they are not always
able to express these needs. Disabilities cross all ethnic,
religious, economic and class lines and this should make us realize
that we are all of one community. We are all different. And we are
all the same. We can be examples for others and we can help break down
those barriers that separate us all. We should share with others,
including the parents and relatives of the non-disabled.
Perhaps we are all autistic to some degree. Communication between
"normal" people can be sorely lacking. Think about it. I get
frustrated when I cannot get through to my boys. I have things to
offer them, experiences to share, talents to pass on. But I know there
is hope. I am not going to allow for self-fulfilling prophesies.
Patience is still one of the greatest virtues. Life is not perfect.
The pursuit of perfection can often lead to paralysis.
I would like to say in closing, do not give in! Don't go gently into
the night!
Sam Bhang lives in Los Angeles. He has twin sons, John and Kenneth,
who are both seniors at Fairfax High School.
daDA
An observation by Gregory Burns
I don't belong to a lot of organizations
but this year I actually joined a men's group called daDA
daDA is a group for fathers who have children with disabilities
Membership is more fateful than voluntary
yet there is something highly unique about this group of men.
Yes, there is pain here
but there is also hope and support
because these men actually help each other
by listening and sharing and understanding.
In general, the idea of men sharing with other men
is an oddity in our times. By nature we are competitors.
We've been conditioned to think that the "ideal" man
should be a self contained tower of strength,
an all knowing all seeing combination of
John Wayne and Clint Eastwood.
Yet the irony is this,
Men can become stronger through their interaction
than through their isolation.
I don't think women are surprised by this concept
I have a feeling that they've know about it for years.
Maybe it's because they share a common enemy.
Personally I don't care who came up with the idea
all I know is that life is too damn hard to face alone
and whether we are men (or women)
we must recognized
that we are all human beings first.
RESOURCES
"Extraordinary Children, Ordinary Lives"
by Reed Martin, J.D.
Research Press, 1991
Dept. 154
2612 N. Mattis Ave.
Champaign, IL 61821
$12.95 plus shipping and tax
"Extraordinary Children, Ordinary Lives" tells the personal stories
behind ten of the leading court cases that have shaped and defined the
basic principles of special education law. Reed Martin, one of the
foremost authorities in this field, was involved in each case
recounted in the book. He feels that telling the stories behind the
cases is a logical way to help parents and professionals understand
the law.
Martin addresses important requirements of P.L. 94-142 and Section 504
of the Rehabilitation Act, as well as Congressional amendments that
have changed or broadened these laws since their enactment. He quotes
from judicial opinions and then, explains, in very practical terms,
how these decisions affect the education of children with
developmental disabilities.
This book breaks actual case law into easy-to-understand language that
offers real meaning to such important legal concepts as "appropriate
education," "related services," "least restrictive environment," and
much more. Using an anecdotal approach, "Extraordinary Children,
Ordinary Lives" highlights the importance of these case histories in a
way that reminds us that these stories are about real people and real
families.
"Easy Access to National Parks"
by Wendy Roth and Michael Tompane
Sierra Club Books, 1992
Sierra Club
730 Polk Street
San Francisco, CA 94109
$16 plus shipping and tax
"Easy Access to National Parks" enables those with physical
disabilities to enjoy our national parks - from Olympic National Park
in Washington State to Everglades National Park in Florida and from
Yosemite National Park in California to Acadia National Park in Maine.
Those with mobility problems, vision and hearing impairments, seniors,
families with young children - anyone looking for gentle, low-effort
hiking opportunities will find this thoroughly researched guide and
invaluable resource. "Easy Access to National Parks" is a must have
reference guide for accessible camping. Parks, maps, lodging,
temperatures, attractions, viewpoints, trails, hikes, lodging, medical
facilities, contact telephone numbers and more. This book is worth
every penny. A must buy book.
"A Parents" Handbook on Developmental Disabilities
State Council on Developmental Disabilities
2000 "O" Street, Suite 100
Sacramento, CA 95814
First copy free
While I don't yet have my copy, this book was brought to my attention
by dad and Area Board X board member Ben Adams. I'm sending away for
my copy today. Hell, the price is right!
daDa is a quarterly newsletter for fathers with children with
disabilities. Contributions are welcomed. Articles, poetry, letters,
even photos of your kids. Please send all contributions to daDA, 6118
Del Valle Drive, Los Angeles, CA 90048. (213) 933-2983 or fax us at
(213) 933-2984. daDA is a nonprofit something or other organization.
Next Meeting
Thursday, March 25
7:00 p.m. / Board Room
Shriner's Hospital
3160 Geneva Street
Los Angeles, CA 90020
For information call (213) 933-2983
Rick V.
* Origin: Helping Hands (1:102/433)
----------------------------------------------------------------------
(120) Wed 31 Mar 93 11:11p
By: David Andrews
To: All
Re: April Braille Monitor Available
----------------------------------------------------------------------
The Braille Monitor for April, 1993 is now available for downloading
or file request from NFB NET. It can be had under the file name
BRLM0493.ZIP or BRLM0493.TXT.
The Monitor can be downloaded from NFB NET by calling (410) 752-5011,
n,8,1 at 300, 1200, 2400 or 9600 baud. You can also file request it
by using the magic file name monitor from Fidonet 1:261/1125.
This month's edition contains news about a new Editor for the Braille
Monitor, (you will have to read the magazine to see who it is.) There
is also an article by Dr. Kenneth Jernigan called Concerning History
and the Braille Monitor as well as excerpts from the April-May Monitor
from 1957. There is also an update of a piece called Who are the
Blind Who Lead the Blind and an article called Baby-Sitting by Barbara
Walker. There is a convention update from Dr. Jernigan, an article
called Convention Attractions which is information about a variety of
activities which will take place before and during the 1993
convention, and much much more.
Happy reading!
David Andrews
* Origin: NFB NET Baltimore, MD (410) 752-5011 (1:261/1125)