Today is World Autism Day. Today, and every day, my world is autism.
The first time a doctor mentioned autism to me I was shocked. Sure, my two year old had been born premature, undergone heart surgery, failed his hearing tests and didn't speak. Yes, he had spent months in and out of the hospital, almost died from a bacterial infection, and had to be fed every three hours, round-the-clock until he was 13 months old. None of those things shocked me like that diagnosis.
My initial reaction was disbelief, then anger. I went home and called his physical therapist and occupational therapist - people who were with him every week and knew him well. They, too, disagreed with the diagnosis and I felt vindicated! I wrote the doctor a two-page letter telling her she didn't know my child and it wasn't fair for her to label him after an office visit. I continued to fight and deny it for another year until a psychiatrist did extensive testing and had me fill out questionnaires for, what seemed like, days. His conclusion? Autism.
There is an underlying level of guilt that comes with parenting - always questioning whether we are making the right decisions for our kids. I have never felt more guilty in my life. Not that his interventions would have been any different, because he was already getting help. But, I had not accepted that my child had autism. If I couldn't do it, how could I expect society to?
What I can tell you, is that once I accepted my son for who he was, I was able to see a strength and beauty I hadn't seen before. He suddenly made sense to me. And, once I understood the things he struggled with, it made every milestone that much more significant. It has been such a joy to celebrate his achievements.
My son is almost 15 now. He's in a great school, getting assistance from an excellent team of educators and clinicians, and making incredible strides. This is not to say that it's easy. He still struggles with self-regulation, self-advocacy and sensory processing, just to name a few. He made honor roll, but can't always participate in school activities due to behavior. He can build an intricate circuit in minutes, but he takes three hours to write a sentence. Anything new is scary for him.
But, we will work through it all because accepting his autism means giving him opportunities to excel. It means giving him chances and seeing him shine. It means watching a beautiful mind do unimaginable things.
I have a child with autism. He is my world.
To learn more about Nationwide Children's Hospital's Center for Autism Spectrum Disorders, click here.
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