My 10-year-old son Billy and I were headed to the local pond to go swimming, just the two of us, which we both love to do. We were ready, in the mid-July heat, with our suits already sticking to our skin. But in the beach parking lot, while pulling out our towels from the car, lightning flashed. I knew the lifeguards would close the beach. I told Billy we couldn’t go after all, and he hit me, hard.
A woman was walking by when it happened. She gave me such a horrible look that tears came to my eyes — the emotional pain overwhelmed me. What kind of terrible parent allowed a boy to hit her?
I choked out, “He’s autistic,” and her face melted. I could see that she understood, and felt terrible for me. I’m not sure what was worse, the first look of judgment, or the second of pity. I cried all the way home. Decades later, I still remember the pain, not in my arm, but in my heart.
How odd that I didn’t know the woman and never saw her again, yet I still cared so much.
Irrational, of course, but for me, one of the hardest parts of raising a special child was the shame I felt — I know I shouldn’t have felt it, but I did — when others saw that my child was different, not up-to-snuff. The looks of kindness and sympathy that I got from other parents were almost unbearable.
Thankfully I had the support of a strong family, who knew that Billy’s odd and sometimes aggressive behavior was not my fault — not caused by bad parenting, or by a home environment that sanctioned that kind of behavior. Early on, I learned how important it was to keep my relatives informed about what was going on with Billy. During the time that we were desperately seeking a cure, or at least a diagnosis, I shared all the news, and copies of every report, with my mother. She read everything thoroughly and helped me digest and understand them.
When I noticed that my dear and loving mother-in-law was making unhelpful comments, I realized that I was not being fair to her — I wasn’t telling her everything that I was telling my mom. From then on I sent her every report, and made sure that everything I shared with Grandma Dody, I shared with Grandma Patsy.
It made a huge difference. By keeping my mother-in-law in the know, I got another wonderful support person on my team, who I could talk to and commiserate with. Lesson learned. Information is money, access, and power. But most importantly, it is inclusive. If we don’t tell the people we love what is going on, they are shut out. If we don’t tell our friends, they drift away.
But what about our wider circle of friends, our community? The irony is that if we don’t tell our friends, they drift away, but if we do, we may be unnecessarily labeling a child for life. Sharing information to the wider world is tricky business when you have a young child who is not developing normally. Stigma is very real, and can follow a person around. It so happens that there are a lot of different ways for a human being to develop, and it may be that the child is just fine — or with therapy will be just fine. The last thing a parent wants to do is label a child unnecessarily. So therapists are brought in, there are many sleepless nights, but not much is said to the outside world. The parents walk a tightrope.
Of the many things that have gotten easier as Billy and I have aged, the biggest one is that he is calmer now. A close second is that the shame has diminished. Now we know who we are and are no longer trying to be someone else. What a relief.