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My speller recently turned 22 years old, and as a mother to two autistic young adults, I can’t help each year but be reminded of the long and winding road that has brought us to our present day. My boys and I grew up together, really, learning in the trenches of a revolving door of therapy sessions all about autism, each other, and how we were going to navigate this life of ours.
In hindsight, the way birthdays–and in a broader sense, all celebrations–have been approached in my household over the years has been the opposite of presuming competence and respecting autonomy, only I didn’t see it that way.
I think to those young days after the diagnosis of my older son when therapists would help me to wrap up average household items–a TV remote, a rubber spatula, or a small framed picture-in
order to teach my speller how to act with joyful surprise when he opened gifts on his third birthday. The theory was that he was unable to know that the tradition of wrapping and unwrapping presents was fun because he lacked the ability to learn socially.
Dutifully, I did as I was told because I wanted to be a good mom. I wanted to do what was best for him, but I didn’t know a thing about autism. I didn’t think I knew what was right, so I looked to the professionals around me for guidance. With love, I wrapped those kitchen sponges from the sink and the tape measure from the junk drawer, and I presented them to him like they were prized Pokemon.
The truth about our daily lives was that my boys had to work many hours a day in order to learn to do what most people learned automatically. They started therapy as babies, and my fear was that they would look back on their childhoods one day and feel no joy. So I threw myself into creating the joy. Perhaps it was my own way of coping, but things like that are difficult to see when you are in the middle of it all.
Those special interest birthday cakes—you know, the ones that we parents want in order to make memories for our kids? Oh, I made them, and I perfected them free of gluten, casein, corn, soy, and eggs and still managed to make them taste…well…okay. And, so what if the interest de jour was vacuum cleaners? If peers liked superheroes and got superhero cakes, well, then, my vacuum-loving son was going to have a Hoover upright birthday cake with lots of candles!
Each year, I stood both boys before those candles, often restraining them in some way to prevent them from running away while we all sang. Year after year, I would be the one to blow out the candles, telling myself that, just like with the presents, maybe they didn’t quite “get” what people do on birthdays. I thought that I needed to model for them that this whole process was fun.
From top to bottom, our house would be decorated with balloons and streamers in the birthday boy’s favorite colors. It was nearly impossible to navigate without running into something hanging from a doorway or banister or scattered on the floors.
I wanted them to feel celebrated, and, in my quiet moments, I knew that they didn’t love all the things all of the time. Their deer-in-the-headlights looks did not go unnoticed. There were years when my speller would throw unopened presents out the front door or shut them inside random
cabinets. Many, many times, the presents were never opened. But, still, I continued to “create the joy.” Even if birthdays did not look the way I thought they would, I kept trying because I wanted them to feel loved.
We remained stuck in that very place for years.
But, this year was different. This year, I have a line of communication open with my speller, so I took the opportunity to ask him about what he would enjoy for his birthday. What I learned was that he liked very little of it. After all the misguided ways that people have tried to show him the fun of birthday celebrations, he finally had a way to say that it wasn’t fun for him at all. The process of wrapping presents? He called that “stupid.” And he said that any notion that he would feel unloved without those things on his birthday was just “silly.”
Gosh I love those expressions, and while I had serious doubts about letting his birthday pass by without doing much, I thought that I owed it to him to try.
More than two decades into parenting autism, this birthday I was called to create the joy differently. Per his request, I did something that I never would have dreamed of doing, and I ditched most traces of celebration. Gifts were not wrapped. There was no cake. I did not put up a single item of decoration. The day was unceremonious and quiet.
It was very uncomfortable for me. It felt like I was showing him that he didn’t matter. I fought the urge all day to run to the pantry and whip up a quick cake or to burst into his room while singing, “Happy Birthday.” (Imagine how it must feel to spend your birthday on edge for the next
“surprise” that might burst through the door at any moment!) But, at the end of the day, I noticed something. While I was sitting in my discomfort, the look on his face was actually peaceful. In all his years, I honestly don’t think that I can once describe him as peaceful on his birthday.
Slowly, I realized that the problem all along had not been that he did not appreciate the elements of celebration. The problem had been that my way of celebrating had been misguided. A lifetime of what I had thought were acts of love actually presumed incompetence in him. They supported the notion that he has been unable to understand and form an opinion about happenings in his own life.
This year, by not creating a birthday celebration for my son, I actually gave him the greatest gift of all: autonomy.
Amy McMunn is a native West Virginian living in Rochester, N.Y. Much of her parenting experience has called her to reprogram what she has previously learned about life in order to make this world a kinder place for her two autistic sons. Together with her older son, a nonspeaker and speller, she is working to introduce S2C to their local area through her new practice, Letter & Board: Spelled Communication Solutions.
