Blog For Down Syndrome

This story appeared in The Washington Post last Saturday http://www.washingtonpost.com/wp-dyn/content/article/2006/02/10/AR2006021001963.html I don’t know any of the details other than what appears in the article. I have to say though I fear it’s another example of school districts not providing the needed classroom supports for children with disabilities.

When our son was 3 or 4 years old we started suspecting that there was more to his overall disability picture than Down Syndrome alone. He displayed autisitc tendencies like not wanting to experience physical touch, being obsessed with “sameness” and displaying sterotypical repetitive movements. Since both my wife and I have previous experience with working with disabled individuals we could see it but it was difficult to express our concerns to medical and education professionals. Even harder was trying to explain it to friends and family. You sometimes feel like that people think you are grasping for other reasons to explain the lack of developmental milestones. We are fortunate to have great pediatricians, access to world class medical facilities and a top rated private school for children with disabilities. Over time we were able to get our sons dual diagnosis added into his official records and IEP. This has helped us alot in obtaining supports that we not have otherwise been able to qualify for. I recently came across a well written article by Glenn Vatter on this very subject that was written in 1998. Click Here to read the entire article. Here is the synopsis:
Synopsis

As many as ten percent of persons with Down syndrome may also suffer from autism. Exact data is difficult to obtain. Many cases go undiagnosed, or are diagnosed at a later age. Many diagnosticians are unawares that the two conditions may exist or are reluctant to apply the second diagnosis. Autism diagnosis is much more complicated than Down syndrome; there is no blood test, genetic marker, facial features, or other characteristics that apply to all autistic persons. The diagnosis is subjective, depending on meeting observations of certain behaviors. Diagnosis and treatment of autism is much more critical than for Down syndrome. Without early detection and intervention the life of a person with autism may be much more limited than that of a person with Down syndrome and often results in autistic children living in a residential school rather than at home because of inability of the parents and the school system to cope with the child’s behaviors.

I knew the day we were chosen to adopt our son that something especially unique had happened in my life. That first day at the adoption agency in Massachusetts as this tiny baby with down syndrome was lying in my arms, quietly staring up into my eyes, I knew that some kind of magic was at work in my life. What a beautiful boy.
This web site is about down syndrome in general. Mostly our experiences, what we are learning about parenting a child with a disability, the educational system, the medical system, family, society, fear, anger…..

We. We are a 14 yr. old young man, spirited, active and loving, with down syndrome and autism, Donna my wife and great mom and me Rus aka Dad…. or as our son says Mi and Da.

It is our hope to share our stories and learn from others through this blog. This being our first entry you won’t find much but stay with us. We feel like we have alot to share and alot to gain from others.

There was a boy
A very strange, enchanted boy
They say he wandered very far
Very far, over land and sea
A little shy and sad of eye
But very wise was he

And then one day,
One magic day he passed my way
While we spoke of many things
Fools and Kings
This he said to me

The greatest thing you’ll ever learn
Is just to love and be loved in return.