When our son Johnathan was in the first grade, he had a friend ride the bus home with him and have a play date. Scott, our autistic son, had never expressed a desire to have a friend over, but on this day, he came to me and said, “Why can’t I have a friend come over, too?”
I asked him, “Do you have a friend?”
Understand that at this point, Scott still couldn’t distinguish boys from girls, and children other than Johnathan didn’t come with names. We believe, to him, his 2nd grade classmates were just a sea of faceless noise-makers. But, he surprised me by answering, “Sure! Thomas!”
Thomas and Scott had shared classrooms since kindergarten. Like Scott, Thomas has an autism diagnosis. So, I contacted Thomas’ mom. She was thrilled to have Thomas invited over to someone’s house for a play date and as soon as schedules allowed, we got the boys together.
That began my friendship with his mom. We were two moms of special needs children trying to navigate the school system, insurance companies, and social skills, and we realized, subconsciously, that we needed each others’ friendship and support. I have wonderful mentoring friends, both of whom have older autistic children, who have been a constant source of support and encouragement for me. I was blessed to be able to offer the same kind of friendship to Thomas’ mom, and to share with her what my friends had taught me.
A few months later, we were invited to Thomas’ birthday party. This was the first time Scott had ever been invited to a school mate’s birthday. He was so excited to get to go.
Thomas takes part in a program called STRIDE, which is a special needs extra-curricular activities program in his community. He’s able to play soccer, basketball, and participated in the Special Olympics. So, at his party, there were several special needs kids and their parents.
For the first time ever, I sat at a party surrounded by complete strangers and completely relaxed. I didn’t worry that Scott would say something completely off-base, possibly even insulting, to one of the adults. I knew if he did, they’d get that it is just a black-and-white boy with no filter. I didn’t worry that he didn’t want to take part in any of the party activities and how the other kids or parents would think he was “weird”. He was absolutely and totally accepted when he walked into that house and nothing he said, did, or didn’t do would be taken in a negative light.
I watched a mom with a non-verbal son wearing a helmet sit in that room and relax. I watched Thomas’ mom enjoy a house full of people who had come to celebrate her son’s birthday and relax. These were our people. Our children seemed to understand each other. Johnathan, who is two years younger than Scott, has lived his life with an autistic brother so he thought nothing off about how the kids played or how they interacted — or didn’t interact.
We have a supporting and loving extended family. We have good friends who love us and love our children. We have an amazing church family with excellent teachers in the children’s department. I’m not taking anything away from any of those people in our lives who know us and love us who don’t have special needs children. But what I learned that day is that there’s something to be said for a community – a like-minded, shared community – that cannot be duplicated.
The community comes with a sense of understanding that doesn’t have to be spoken, with empathy that has no strings attached. Parenting a special needs child can be very lonely, very scary, very disheartening — and when you enter that community by way of a meeting or party or just coffee with other parents like you — for a time the burden, while it may not be lifted, is lighter — and at times even shared.
Last December we moved from that town and are now two hours away. Thomas’ parents have made the drive here two or three times, and we’ve made the drive there two or three times. Our boys are still friends who look forward to seeing each other.
Over Christmas, we went to a party at Thomas’ house. He didn’t know we were coming, and the look of joy on his face when we walked in the door made the two-hour drive worth it. Immediately, the boys headed up to Thomas’ room. For over two hours the played and played, and I practically had to drag them away from there.
This school year, Scott has made a friend named Hunter. The other day, I heard Johnathan ask him, “Who is your best friend? Hunter or Thomas?”
Scott, seemingly appalled, replied, “You can’t categorize friends that way, Jeb! You just have to cherish them for who they are.”
That simple statement brought tears to my eyes. There was a time when we wondered if Scott would ever even know how to have friends. I never thought that instead he would so simply and profoundly inspire me to remember to cherish my friends for who they are, in the special needs community and out.
I’m so grateful for your visit, today.
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Oh my gosh, you always have me crying. Either from laughing or from touching posts like this. I hate that you guys had to move away from his peeps. Though I am thrilled to have met you.
You are a fantastic mother and your family cracks me up. You so always have me aware of how horrible our dinners are. Haha miss your face.
Parenting a special needs child can indeed be lonely and scary, Hallee…scary as hell. I’m so glad you found your community…and that Scott is finding his.
What a wonderful post, Hallee. I agree that parenting a child with special needs can be very lonely. I’m so glad you found a community where you can talk to other parents who get it, and that Scott found a place for him, too!
Our son also has autism. We had a great support structure and then moved a couple of years ago. We’re still trying to find out place here, and so is he. It hasn’t been easy.