[misc.handicap] Downs Syndrome

Pat.Goltz@f3.n300.z1.fidonet.org (Pat Goltz) (02/13/90)

Index Number: 6721

Guess what, folks!
  I just talked to my only sister, and she told me that her newborn has 
Downs Syndrome!
  We had a wonderful conversation about all the things we were going to 
do to help him become a capable person out there in society when he grows 
up.
  I would appreciate it if you all would tell me what you know about 
resources for this particular situation, and what you know from your 
personal experiences.
  I'll keep you all posted on how he does. Here's report number one.
  He's currently 4 weeks old. He is smiling and cooing, and likes to pay 
attention to faces, and he responds to people with his smiling and 
cooing. He likes to look at pastel colors. He has a monkey-rattle that 
has lots of different colors and textures, and he likes to grab this 
thing. So far, he's ahead. His main difficulty seems to be lack of muscle 
tone, but there seems to have been significant improvement even in this 
area.
  I was able to give my sister some good resources. Since I am thinking 
about it, I'll share them with you here. There are several efforts that 
concentrate on this type of difficulty, and how to handle it. The one on 
the cutting edge is an organization called The Michael Fund. It gathers 
funds and supports research into how to solve the problem of Downs. The 
primary researcher that is being supported is Professor Jerome Lejeune of 
Paris, who discovered the cause of Downs. Their headquarters in the 
United States is in Export, PA. I won't post the address yet because it 
has been years since I thought about them, and I want to make sure I get 
it right.
  Another effort that has dealt with Downs is Glenn Doman's Institutes 
for the Achievement of Human Potential, which is located in Philadelphia. 
He was working with a fellow from a Latin American country who wrote a 
book about the achievement of Downs youngsters in his country. He has 
kids who have learned violin through the Suzuki method who are really 
good, and he has some youngsters who can read several languages. One girl 
could read about four of them, and she was only five or so. I find his 
approach a little too rote, but what he does can be combined with some of 
the methods I believe in to produce really fine results.
  I'll tell you more next time.
  Keepin' the Faith!
  Pat

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Bill.McGarry@hnews.fidonet.org (Bill Mcgarry) (02/13/90)

Index Number: 6762

Hi Pat,
 
My seven year old son, Alexander, has Down Syndrome (the official
name is now Down Syndrome rather than Downs.)
 
There is a National Down Syndrome Congress.  They publish a newletter
and can also put your sister in touch with a local support group.  
Their address is:
  1640 W. Roosevelt Road
  Chicago, IL 60608
  1-800-232-NDSC
  1-312-226-0416 (Inside Illinois)
 
At four weeks, your sister's baby should be ready to start therapy
and she should be in touch with the state agencies.  The earlier therapy
starts, the better.
 
I will write more later.
 
Bill