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Wednesday, October 21, 2009

My first years

I was an interesting child those first years (actually, I was always interesting). Right from the beginning, I was different even within the confines of my disabilities.

A neighbor of ours had Down Syndrome. Mom and dad always thought that I would grow up to be like him – self sufficient within the constraints of my affliction although delayed - but I had different plans.

In the beginning, mom and dad joined support groups like PATH (Parents Available To Help) and the CDSC (Connecticut Down Syndrome Congress). They enjoyed the company but each time it became apparent that we didn’t quite belong. The other kids would be crawling around, sometimes walking, experimenting, reasonably attentive and cognizant of the other kids (always of course within the constraints of their disabilities) … Their parents would talk about the advances their kids had made and their accomplishments since the last meeting. But mom and dad could never really participate in those discussions because I pretty much stayed the same and even regressed a little. As other kids played, I would sit in my chair, head propped up (because I couldn’t hold it up myself) and kind of stare off into space (and of course I had to be fed every hour). Mom and dad would eventually realize that I was “special” even within the description of the “special needs” of a group and so those groups became a point of depression for them. Slowly, we lost touch with the people in the groups. Slowly, mom and dad stopped talking with other parents – if it wasn’t depressing for them, it was depressing for the person on the other end of the phone…. Parents who just had a Down Syndrome child wanted to hear about the “wonderful” and “all but normal kid down the street”, not me who never progressed and had innumerable health issues. Eventually, we even lost touch with that little girl from NBSCU and her parents.

Thinking back, not all that long before I was born, a Down Syndrome baby would have automatically gone to an “institution” unless the parents fought it. But when I was born, the drive to keep kids like me at home and mainstream us was really just “finding it’s legs” and everything was “rah-rah” for the handicapped and “let’s show everyone how ‘special’ special kids are and how they enrich your lives so everywhere you turned there was an uplifting story about “kid’s like these”. Dad remembers a movie that was on shortly after I was born, Tyne Daly as a mother of a Down Syndrome baby who was very much like me but Tyne Daly, being the ever wonderful and devoted mother, gave up her career to spend hours bathing her child in Jello… and …. Low and behold, the baby instantly realized it full potential as a contributing member of society. The makers of Jello were no doubt pleased and dad used to think that if only he had bathed me in Jello ….…….Wouldn’t have made any difference though since, on top of my other issues, I turned out to be Texture Sensitive too. I probably would have been traumatized instead of helped by the experience.

Speaking of movies, when I was 18 months old, I was also a TV star. A local TV station (WTNH) was doing a special on disabled children and had contacted Dr. LaCamera, because of his work in Birth-to-Three, for a referral to a family with a special needs child. He referred them to us and in 1993, I wound up with a twenty minute segment in a show called “Beyond the Dream”. (You would laugh now if you saw it: for starters, dad had hair!.)

I enjoyed my first years….I loved it when Marty, Rhonda and Ruth came. And mom hadn’t worked since she and dad learned I was “special” way back in the first trimester. Mom was always there. Dad was there as much as work allowed. Sis was always there to play with me ……

1 comment:

  1. I know something of the frustration, no, isolation that you felt as parents. I have felt those feelings too while learning to deal with my oldest's problems. No one can truly understand unless they have been there, but even then, everyone's situation is unique.


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