I first entertained thoughts about Autism back in the 1990's. You didn't hear much about it back then and most of my family and friends were sure I was wrong--that my child did not have Autism. There was something, though....sensory issues, few words, a quirkiness. The school system evaluation didn't agree with me, either, and I had no idea that an educational diagnosis could be different from a medical diagnosis. We took the word of the school system as one opinion and went on our merry way. Something was definitely going on; we just were not sure what to do about it.
I did a lot of research back in those days-searching for answers and for hope for the future. Thankfully, despite my failure to obtain a diagnosis and appropriate therapies, it all worked out just fine. We did our own thing, using the information I found during my searches and I'm happy to say, my quirky little kid has grown into a very intelligent, talented, and respectful young person. Out of respect for all involved, I won't write about the details, but I wanted to mention it all just to share the hold Autism has on our family.
In the spring of 2007, I had a beautiful, happy fourteen-month-old boy who was walking, running, kicking a ball and saying many words. He would gaze into my eyes and his grin would send sparks straight through my heart, to land deep inside my soul. He was the surprise child I had no idea I wanted. It was...lovely.
By eighteen months, his gaze was slipping and his words were few. By two years, he would no longer follow my point or say "Mama". I knew what was happening, but I denied it for months. I had already done the research--I knew what it was. And still, I let my heart rule my head. It couldn't be! My son was already 1 in 100--He was born with complex Congenital Heart Disease. There was no way he could be 1 in 100 for Autism. NO way. That would be too cruel.
Because he remained fairly social, our pediatrician agreed. "No, he's too social." At nearly 2 1/2, we finally met with our State's Early Intervention program for assessments. Two months later we had visited a speech pathologist, an occupational therapist, a physical therapist, a behavioral analyst, a psychologist, and a developmental pediatrician. We had a diagnosis... Autism. Thankfully, high-functioning (PDD-NOS).
The past four years have been filled with therapies, nutritional supplements, special needs preschool, hope and prayers. We made adjustments, going from long-time homeschoolers to placing our younger children in public school so we could begin a home therapy program, and then, special needs preschool. We took therapy homework very seriously. We learned sign language and used pictures to communicate. My son has made great progress. He is talking! He's even reading! And he is an artist...
He began mainstream Kindergarten this year--regular ol' full-day typical kindergarten.
A few weeks after my little one's Autism diagnosis, a visiting ABA therapist (we were blessed to have ABA therapy in our home through Early Intervention) commented on some of my concerns about my then seven-year-old son. Always a sweet child, he was struggling those first weeks of public school and I wasn't surprised. In addition to being sweet, he also had a difficult time with change and was super sensitive in every way. He could not read, even after two years of homeschooling. He was also a bit immature for his age, but spoke with great formality and intelligence. He was a puzzle! He was meant to be the baby of the family and was nearly five years old when his little brother was born. We had indeed babied him. The ABA therapist wasn't so sure about that. She suggested I talk to our pediatrician about an evaluation.
This hit my like a hammer. I never, ever, EVER thought about Autism when I looked at this child. And I thought about Autism a lot. I just didn't see it. But, there it was. Six months after his little brother's diagnosis, he was diagnosed with Asperger's Syndrome, which is also an Autism Spectrum Disorder.
20-40% of people with Autism also have seizures or seizure-like activity, even if there are no signs of actual seizures. This child is one of them. Anti-seizure medication and assorted therapies have made a huge difference in his ability to function. He is doing well, but still struggles with transitions and social situations. We're busy working on his challenges.
If you made it this far.....whew! What a story, right??
This is our family's story. There are many, many families with very similar stories. We are thankful to be in the realm of higher function and also for the therapies and support we have available to us.
We are blessed!
To learn more about Autism, visit Autism Speaks.