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Jypsy - Autism

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The following is an excerpt from Jypsy's story about her son Alex:

In the Beginning...

Alex was born right on his due date (as his older brother had been), on December 15th, 1987. I expected he would be the opposite of my first child and he certainly was. He was a "perfect baby". He nursed every 4 hours (Jesse every 20 minutes), he cried only when you held him (Jesse cried if you didn't hold him). I think this might have been intimidating had he been my first child, not wanting to be held, but I never felt rejected, it was just a nice little break for me. At first I thought he slept right through between his 4 hour feedings but discovered he would wake and silently look all around before falling asleep again and waking with an "aa aa" to let me know it was nursing time. He had a portable crib that soon became his world. We could take him anywhere, put him in it and he was totally content. He was a thumb sucker (and for a while a blanket toter) and at 10, he still sucks his thumb.

When Alex was 3 months old I developed Iritis (inflammation of the iris) and was put on prednisone eye drops. At this point Alex stopped gaining weight as he should. When my prednisone dose went up he gained little or none at all. When my dose went down he gained better. He was tagged with "failure to thrive" and no reason could be found. It was felt the eyedrops were such a tiny dose they could not affect him.When he was 16 months old I went off the drops. He finally began to gain and I finally convinced the Drs involved the steroids were the cause. Having said all that, this had anything to do with his autism. He was born autistic an his personality never changed through all this.

At some point Alex would wake in the night and not be able to get back to sleep. He did not want to nurse or be held or touched. He just wanted to go back to sleep and couldn't. I picked out a beautiful instrumental lullaby tape and began playing it when he went down for a nap and to bed at night as a sleeping "cue". Worked like a charm. Then when he awoke in he night I just went in and put on the tape. The tape and the portable crib went where he went until around 2.

Speech went right past Alex but his hearing was incredible. He did not respond to his name or "no" but he would hear the little squeak the dishwasher door made from 2 rooms away and would run to rummage through the dishes there.

Soon our house started about chest high and went up. Alex was barred from the kitchen and upstairs but within the rest of the safe environment he was totally content. He went through a paper ripping stage...no paper was safe. He was relentless in his quest to find and rip paper so we took the "burn out" approach and "fed" him paper (the day before's newspaper, junk mail), for 3 months and he finally got it out of his system. The bag of ripped up paper I collected every evening was used to light the woodstove the next morning. (More on obsessions and compulsions below)

Diagnosis - The Irony of it all....

My first introduction to autism was in my late teens when my best (only) friend Sally got a job working 1-1 with a 4 year old autistic boy. She was totally captivated by him and I met him a few times, taking him for respite weekends to her cottage and such. I heard much about him in the time she worked with him.

In early 1980 while traveling with my eventual husband, I wrote her from Canada's west coast and told her of my intentions to come back to Prince Edward Island with him and live happily ever after. I also told her we'd have a bunch of kids and an autistic one so she could move here and work with him. (I pulled off my end but she never did make it here). When she met Roger later that year we both joked about his autistic traits and how between the two of us we could produce an autistic kid.

It is for those reasons Alex was diagnosed as early as he was and also that he wasn't diagnosed sooner. On the one hand I SAW the autism there, one the other it would be far too ironic. My husband was a late talker and for that reason I gave him until around his second birthday until I really pushed the autism issue with my family Dr. He was about 18 months old when I told my Dr. he was autistic. My Dr., never having seen autism, didn't know. At 2 I pushed for assessments and finally at 3 my diagnoses was confirmed by a pediatric neurologist. At that assessment, "on examination, he actively avoided eye contact. He ran around the office and flitted from 1 toy to the next. He had no interest in either his mother or myself but when he found my calculator he became enthralled and repeatedly went back to it." When the Dr. asked me if he lined things up I knew I'd finally met someone who had a clue. Like many autistics Alex liked to line things up.(*anything at all*)

Jypsy's story is continued in her website: Oooops Wrong Planet!! Syndrome...

Jypsy ©1998



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