Soup Du Jour! Autism Really – Ryan
As a Chicken Soup co-author I’m always looking for your stories to share with everyone else. Not too long ago I did a “call out” to my members asking for heartwarming stories and was overwhelmed with over 2500 submissions. I know you will enjoy hearing from others so I am going to be sharing them with you on a weekly basis. Here is the third one from Jennifer Thomas!
AUTISM REALLY – RYAN
By Jennifer Thomas
It was December 8th, 1996 when my beautiful big boy Ryan was born. I was a happy mother (25 years old) of two beautiful children. I was also a certified N-8 teacher and a wife at the time. I could not have been happier.
The first month brought on an MRI with his head growing too much in the front and on both sides. My husband at the time chose not to come, as he did with the rest of Ryan’s issues. My older sister took us and helped us through it. He has hydrocephaly, where the fluid levels never rose. Thank God.
After that, his first year of life was normal to me. My older sister also had a child two months before, so we could see a difference; yet we chalked it up to a boy and a girl. He hit thirty pounds a little after 6 months. Then on his first birthday, he received the chicken pox vaccine. Immediately he spiked a high fever (106) and we ended up in the hospital for 3 or 4 days.
One month later, he was a different child. He would not say the words he already had (mama, dada, baba, cookie, etc.). He started screaming for hours (4+) on end. He would not look at you when you called him. He would do dangerous things and get hurt, without feeling it. He would not listen to a story, nor play with toys typically (spinning wheels, lining up, carrying the same thing). He would hurt himself and others and was a very big child. Another month went by and I was beside myself. This is where my little sister came into play. She was finishing up with her Speech Pathology and sent me an article in February of Ryan’s second year of life. It was about twin girls with Autism who exhibited his behaviors. She told me to get him tested. My initial reaction was that she was crazy; yet I trusted her knowledge and spoke to his pediatrician. I was then told that we could not until he was 18 months.
At the 18 month mark, I took him to the best hospital, Hackensack University Medical Center (Don Imus Building) to get the testing. What a long day for us all. The reports came back as “Severe Autism”. I cried like a baby, for my baby. They had many suggestions to do immediately. I was then 26 years old, and had no idea of what Autism truly was. I researched everything, stopped working, and began his intensive therapies within the next month.
When hit with something like this, and you want to read about it, I couldn’t. Every book began with “they will never this or that”. My dear friend Chris gave me a book called “Let Me Hear Your Voice”. That is the only book I ever read because the mommy in the book helped more than one child with a positive outlook. I was driven at that point to do the same.
I took him to two separate facilities to concur with the initial diagnosis (another hospital and an independent neurologist). They both said Autism. His neurologist told me “you need to get this now because his mind is like play dough where you can form it; however after 5 years old, he will keep whatever symptoms left). I began my hunt for his intensive therapy. I asked one of my best friends, Chris, with much begging and pleading (because we were friends and she thought it was a conflict of interest) to be his private Speech Pathologist. She agreed. Also, with advice from my little sister, hired Allegro outreach to come to the house for intensive ABA therapy. This is where Jackie Dubil came into our lives. She loved him like he was hers. She named her son after him too. I also contacted Early Intervention (which at that time did not provide ABA, yet gave him Speech once or twice a week for an hour, and OT once a month). That is all they gave him, which prepared me to deal with the public sector of special education. I supplemented it with sending him to a private preschool the second half of the day.
He received these therapies (with funding from my mother’s family – thank you) until he was three years old and had to enter the school system. Entering the school system offered either sending him far away to an Autistic school or the 2 hour a day Preschool Disabled program. I chose the latter because he needed not to be with other children with Autism and learn their behaviors.
Throughout all of this, I learned the special education law inside and out. I researched schools, therapists, and medical and holistic options. I needed the knowledge to fight for my boy to get what he needed.
He entered regular Kindergarten (1/2 day) with an aide. I went back to work (with a blessing from a dear friend) at this point. My friend, Dara was working as a special education teacher for the Commission for our county and she was leaving. I was hired as an emergency certified special education teacher, with nothing but what I taught myself.
The story can continue, and I tried to keep it short, but parents who deal with this have long stories to tell. He is now entering 8th grade with inclusion academic classes. He is doing well, playing sports, has friends, appears typical, and continues to understand his abilities.
I have to have a special paragraph for my daughter. How it affected, and still affects her is a whole different story. She is 2 ½ years older than him. She was hurt by the attention he got from everyone, and still is. I am sorry baby. It is the cards that were dealt to us as a family. You may not understand Autism fully, but you understand it at your level. I love you.
I am a special education teacher in Paterson for the past five years (and have mostly children with Autism). I divorced my husband three years ago (I thought I could beat the odds for parents with special needs children, but I couldn’t). I am raising two wonderful children in my home.
Autism is something you will never understand unless you live it! Love to all parents, siblings, family and friends that live it. Do what you have to for your children.