When you have a kid with autism, it’s vital to connect with other parents of autistic kids. Being a mom can be lonely business, particularly when you don’t work outside the home. It’s very isolating. Have an autistic child, and that isolation is almost unbearable. And sadly, you can feel most alone when you’re with other people because the the difference in your experience is magnified.
When Maddie was a baby, I formed a small mother’s group. We all had babies within a few months of each other. We got together each week for lunch, which was really easy when our babies just slept in their little carriers. It got more challenging and more fun when the babies starting walking and talking and sort of interacting. As you know, Maddie’s milestones didn’t come anywhere near matching the expected timelines. She didn’t smile much, but she was content. She didn’t sit up successfully until eight months, roll over until 10 months or crawl until 12 months. Meanwhile the other kids were mostly on track, busy little people with places to go. I wasn’t especially upset because I just figured she needed a little more time. Whatever.
But it was the talking that really set us apart. “Guess what Sydney said yesterday!” “Jason said the funniest thing!” My reply, half in jest: “Maddie screamed!” I wasn’t especially worried, but as time went on the gap widened, and I was just sad. I was missing out on all those fun things, all those rewards that finally come as your child becomes more and more interactive. If I was at the grocery store and a woman in line behind me tried in vain to get a smile out of my stone-faced kid, I would say, apologetically, “It’s not you.” I accepted it, but I was just a little sad.
And now, as girls her age are becoming young women, Maddie is still largely a girl in a woman’s body. While other parents are worried about whether their kids are getting straight A’s or making the competitive soccer team or being fulfilled in their friendships or going vegetarian, we are still at what feels like square one. (Okay, maybe not one, but you get the idea.) Those are valid things concerns. We all love our children and want the best for them, so wherever they are, we want to help them grow. Nobody understands that better than a parent of both a “neuro-typical” child and a child on the spectrum. For my son, I get to worry about that stuff. He’s super self-sufficient, a bright and motivated student. He has a group of wonderful friends with whom he rides bikes and play video games and shoots hoops and laughs hysterically. He has a full life and most certainly has everything he needs. There have been a couple of bullying situations we’ve had to handle, and those were rough, but otherwise it’s pretty smooth sailing (not that he’s not demanding in his own way). So I do get to worry about the dynamic between his friends, or did he get an B+ or A- in a class, or why he doesn’t want to play Little League anymore.
On the other hand, we have plenty of food to eat, everybody is healthy, and we will never be without a home. So my worries are all relative. I know that. I also know that on the outside my life probably looks pretty blessed, and compared to many people on this earth, it absolutely is. But this is the life I lead, and I’m trying my best to navigate it as gracefully and gratefully, as openly and honestly, and authentically as I can.
One of the most important aspects of my life is having meaningful friendships with so many women I admire, who are kind and thoughtful and intelligent and funny and helpful and devoted moms, many who have achieved or continue to achieve great things outside the family realm, and all of whom achieve great things within it. I love them. I think the quality of my friends as human beings must reflect me, and that is so comforting. And they understand, they really do. But understanding and living it are two different things. The whole “walk a mile in his shoes” kind of thing. I do have a couple of friends who truly get it because of their own parenting challenges, and we know each other in a way nobody else does. I’m so grateful for that.
There is an organization in our school district called It Takes a Village PTA, a school-district-wide organization for parents of special needs kids to congregate and support each other as we all walk through the public school system. I never joined. I resisted for many years because my child didn’t have an IEP (even though she most certainly should have) and didn’t yet have a diagnosis. She was different and a challenge, but I didn’t think of her as a special needs kid exactly. So I didn’t connect with a group that probably would have helped me so much. Maddie was diagnosed by her psychologist when she was 9 1/2. I was caught a bit by surprise because we hadn’t sought out an evaluation, but Maddie and her psychologist spent enough time together that the diagnosis became clear. (A story for another post, for sure!)
All of a sudden I went from being the parent of a challenging kid to the mom of a child with a diagnosis. Then the confusion, sadness, fear, and general feeling of being lost set in. In a moment I went from being a mom to being the mom of an autistic kid. What an unexpected turn of events.
In the meantime, I have floundered in a way very much alone, bolstered in part by my sister who has an autistic child herself. We understand each other even though our daughters couldn’t be more opposite. I’m grateful for her. And for my whole family, who know Maddie so well and have a kind of understanding only family can have. My husband gets it, of course, but he’s not in the trenches like I am. On a day like today, when I feel challenged beyond my capabilities, when I am at the end of my rope, I can feel pretty alone.
I suppose that’s what this blog is for. It’s a way to connect us all, whether we walk in each other’s shoes or not. I hope I’ve made a connection or two today.
The Year of Living Hopefully 