When my son was first diagnosed with his developmental disability, one of the biggest struggles for me was that our future turned into one giant question mark. Of course, one never knows what the future holds in any life, but this was a radical uncertainty. Suddenly it was if he talked, not when. There are milestones, checkpoints, rites of passage that almost all children experience and all of those had been called into question.
My son's particular genetic syndrome is, like so many disabilities, a continuum. There are many similarities, but for every rule you can find an exception. As a a person who likes to plan, that was very difficult for me. I was holding a tiny little six-month-old baby in my arms, but I had no idea what he would be like when he was two or five or twenty five. So, I read all of the stories I could about children with disabilities. Whether they had my son's genetic syndrome or some other disability, I wanted to hear about them all. If you didn’t have normal milestones, what did you have? It was an honest, searching question.
Parents of disabled children often write about how yes, there are struggles, but there are deep joys as well. I wanted to know about those joys. I wanted something to carry me through the uncertainty and all of the difficult times to come. I knew our joys wouldn't look exactly the same as another family's, but I wanted to know about them all the same, perhaps as an assurance that we would experience them too.
Now that my child is nine, I have experienced some of those "parent of a disabled child" joys. Lots of them, in fact! While it’s vulnerable to share these joys, I also think it’s right to share them. So, if you're looking for some hope, here are some of our most recent joys and triumphs.
1. My grandmother passed away recently, and as I broke the news to my five kids, there was not a dry eye among us. We took a little time to just mourn her loss and talk about how happy she would be in heaven, and then one of my children suggested we pray a decade of the rosary for her. The trouble was none of us could get through a Hail Mary! Charlie becomes remarkably calm and sweet when other people are crying, and he led the rosary beautifully. I thought about all of the speech therapy sessions we have attended, all of the years wondering if he would ever learn to talk. Here he was leading us in prayer when the rest of us couldn’t speak.
2. Charlie has always struggled to tolerate video chatting. It’s not just that he has a difficult time participating meaningfully in a call, it’s that even just being in the room with someone who is video-chatting can send him into a behavioral crisis. When school moved to virtual instruction, I was so worried about how it would turn out. The first month was really hard, but I am so happy to report that he recently stayed on his classroom zoom session for our goal time (a half hour) and was happy and interactive the entire time! It was truly amazing to watch him work towards this goal.
3. Though Charlie struggles with aggression and meltdowns, he is incredibly popular at his school. He knows SO many teachers, workers, and students and so many of them tell me how much he makes them smile. When he was diagnosed, I read about the behavioral difficulties with fear and trembling. I knew we would love him no matter what, and I hoped that his siblings would be able to see beyond his disability and love him as well. However, I’m ashamed to say that I assumed that he wouldn’t have many friends. I thought that kids and even adults would see his challenges and get scared, keep their distance. Though Charlie does struggle with social behaviors, it fills my heart with joy to see him walk through the halls of his school and see that he has a community that knows and loves him.
4. Charlie gleefully insists on helping with the dishes every single night after dinner. I tried to shoo him away for a long time, but he kept insisting. He is impulsive and can be a bit clumsy due to low muscle tone, but we’ve had remarkably few accidents since I’ve relented and allowed him in the kitchen. When he was younger, he attended a Montessori school for a couple years. The Montessori method emphasizes that using “real” materials helps children learn how to take care of things, so in Charlie’s classroom, they used glasses for their water. He broke a glass almost every single day that entire school year. His teacher was a friend of ours and assured me that it was fine, but if you had told me that he would be successfully loading our glasses and plates in the dishwasher in a few years, I never would have believed you!
. Jane Stanley is a wife and a mother of five children. She reads, writes, and homeschools in Central Virginia.