By Karen P.
From the minute he was born, people told me my son was different. He developed too quickly in some ways, too slowly in others. He was wildly intelligent when he was interested and infuriating when he wasn't.
Full of energy, like any healthy little boy, he preferred to spend his time and talent alone, in a world of his own creation. My husband and I were props or, more likely, obstacles in his adventures. Roger is our son’s name. He read before he was two, taught himself new languages for fun, and could tell you about any ecosystem in the world, the animals who inhabited them, and the evolution of the world we saw.
But it was never the world he saw.
People meeting Rog would comment on how brilliant or quick he was but then added the “different” as a qualifier. Not a nameable difference. Not something you could see. Something you felt. Different.
And they are right. Rog is different. Though it didn’t matter until he entered school and those who “knew better” told us it was a problem. It was not a problem to us. He's kind and gentle, but he never played with the other children—a problem, they said. He didn't like circle time or hearing stories read aloud and would get up to leave if anyone dared to sing Happy Birthday. Nothing bad per say. Just different.
We went to a neuropsychologist to learn this difference has a name: high-functioning autism. We were told we shouldn't worry (we weren't) and he could probably live a normal life (he has), but we needed to learn how to handle the differences. Because parents, particularly fathers, can struggle with children like Rog, part of the diagnosis process could include family counseling. Often marriages give up from the stress of children with special needs. People who knew better were concerned that my husband was one of these fathers.
At the first family counseling session, a lovely, compassionate young woman looked at my husband with concern and asked how he was doing with this life-altering news.
"GREAT!" he said. "Before, when I did something weird, my wife would ask why I’m doing that. Now that we've learned more about autism and our son, when I do something weird my wife says, ‘yeah that makes sense'. Our marriage is stronger, I understand myself more and I'm not as ashamed of being different.”
He said, “It’s the best thing that could have happened to our marriage.”
At the time, I resented the people who knew better for trying to make my son feel out of place because of his differences, for the endless meetings. and having to explain repeatedly that while I they knew more about Autism, I knew more about Roger.
I got to know specialists at our school. I went in daily to make sure our son had the PT he needed because the school didn't have any on staff. I went down when he was frustrated and didn't know how to communicate with anyone but me. He skipped second grade, left third grade early, and I kept him home for 4th grade, spending days homeschooling him and emailing the school to create a Special Needs program that didn't revolve around kids with learning disabilities.
When I let him go back to school, I made it clear it was on a trial basis—they had to earn the right to have Roger back. Now, I was the person who knew better, and I took my seat at every IEP meeting prepared to make my case every single time. I found local resources; the Parent Information Center Advocacy Program was a lifesaver for us. I went to IEP meetings for other children to serve as advocates for their parents. Wherever I could, I told our story about how we worked with the school to create a team for Rog.
I stormed the Superintendent's office more than once when I couldn't get traction with the Special Ed team. And Roger thrived. Really, thrived. His gentle nature won over kids who previously mocked him. That he didn't care what the others thought of him became an inspiration to others. His sister complained constantly that Roger was some sort of a rock-star and asked her what it was like to be his sister. He was still different, but it became a cool kind of difference. Not that he cared.
Now that we're on the other side of it, I'm sort of grateful for the people who knew better. They forced me to become an expert and an advocate. Learning about my son helped me to learn about my husband and made our marriage stronger. Today, when I see people who are different it brings me a special kind of joy.
Differences are what makes life interesting.
Have a STORY of YOUR OWN? Send it to us at yourvoice@nhchildrenstrust.org. We’d love to hear how you used YOUR VOICE to meet your family’s needs.
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