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My 7 1/2 yr old son Ryan has Arnold Chiari 1 malformation/Autism and Recently dxs
with Williams Syndrome. We first discovered Ryan had AC1 after having a MRI
at the age of 2. Ryan was always a sickly baby.he was colicy for the first 6
mons. Had problems with weight gain,he couldnt keep his food down. He was
late in all development areas,weak upper and lower muscles tone and poor
balance. Ryan was getting headaches since infancy. Your probally wondering
how I could tell a infant was getting this head pain. well If you can
picture a tiny baby putting his hands to the back of his head and giving out
such a blood curdling scream you'd know too.The pain appeared quick and
sudden and lasted seconds at a time. This happened often. It broke my heart.
Ryan had a EEG which came back normal(that was no picnic,seeing your small
child wrapped up in what looks like a small straight jacket to keep him
still with electrodes taped to his head.He was scared and cried allot. I had
to put aside my own shyness and sing to him to soothe him. It helped) The
next step was the MRI and there it was Arnold Chiari 1 malformation.Ive been
looking for more info on it and there just isnt a whole lot out there.What I
did find was not good news,Ryan was evaulated By Easter Seals and was
eligable for services.( I also found out I was pregnant again in the middle
of all this chaos) Ryan attended a program for special needs kids called ARC
in Montgomery County in Pennsylvania,where he got Speech Therapy,OT and PT
services But Ryan is doing better now. He's never needed surgery and the
headaches have lessened over the years.Each year we notice his immune system
improves a little more. At age 3 1/2 we moved to Lewistown Pennsylvania,
Ryan attended a program for special needs kids (TIU)Tuscarorra Intemediate
Unit, He received the same therapy he was receiving from the last place.Then
due to his developement delays he was DXS with Autism. He learned to talk at
age 4 1/2.The use of the PECS program helped allot. Ryan is now 7 1/2 yrs old, On(Oct.12,1998) was dxs with Williams
Syndrome. Ryan is In a Self Help Skills class in Highland Park Elem. And he
is doing a great job. He receives OT,PT and Speech,And is still using PECS.He recently started receiving Discrete Trial in the class room. Im so proud of him. But I cant help but wonder what the
future will bring him. But I will not dwell on that and will live for the
present and take it one day at a time. Ryan is such a pleasure. He loves all
music, from band all the way to heavy Metal.You should hear him sing. He can
be quite the ham. Always has been a very happy child.Ryan doesnt care much
for climbing.
and oddly doesnt care for sweets. He has problems gripping things too narrow
with his hands, avoids eye contacts, drives me nuts with the video's and his
obsession for magazines. Loves to visit amusment parks, just to view the
rides. He's also obsesses with ceiling fans and trains. I dont know what Id
do if I didnt have a camcorder to make videos for him. I recently taped a
live pow wow. Indian drums and dancing. He plays it over and over again.
bought him a drum when we were there. He keeps the beat to the video and
sings along with the indians.You should of seen him go out to the middle of
the arena and dance with the indians. He's not shy at all.Well its been a year since I made that video and Ryans number 1 obsessions is with Native Americans,their dance and music. With the new Dxs
of Williams Syndrome.Ill post all the steps we take as we venture into
another Dxs. Starting with a Trip in the beginning of Nov to see a cardiologist. And see what shape Ryans Heart is in. I pray they find nothing wrong . 12/02/99 Ryans got whats called an innocent heart mur mur and were told its nothing to worry about.
I still worry tho.
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