I have a little boy who absolutely delights in the alphabet. At barely over a year old, he could recite a list of words that started with every letter of the alphabet. He would say their phonics sounds, “Ah Ah airplane, apple, astronaut . . .” and then, “Buh Buh balloon, baseball, bird. . .” until he reached Z. Then he would do it backwards.
I have a little boy who hasn’t done that for years. The last time he did that he was two years old, but I know it’s still in there.
I wonder, all the time, how much more he knows now. I do know he loves to snuggle and has the most beautiful falsetto voice I’ve ever heard. In two weeks, my little guy will be four years old.
He doesn’t speak any novel sentences, but sometimes, he will clearly quote movie lines. One day, while I was pushing him fast in the jogging stroller, he yelled, “Don’t try and stop me!” (that’s a line from Kung Fu Panda 2). Hearing him quote that line at an appropriate moment filled me with so much joy that I could barely feel my feet hitting the ground for the rest of that run with him.
At age 18 months, my son was diagnosed with autism. Since I had known for some time that he was autistic, the diagnosis was just a step. People told me I shouldn’t be sad, or even worried. I’m still trying to get over being denied the space to grieve for my little guy. People told me that we were the best kinds of parents for a child who needed extra help finding his way. People told me that there were lots of therapies that would help, schools that would help, diets that would help, books that would help. People told me we didn’t need any help and that he would be fine. Again, and again, they told me we shouldn’t be sad or worried. They told me, instead of being sad, I should appreciate my sweet little boy.
They made me feel like I didn’t appreciate him even though my heart was broken because of how much I loved him. They made me feel like being sad was evidence that I wasn’t appreciating the little boy in my arms. I felt sad because I didn’t want things to be so hard for this baby I loved so dearly. I felt deeply shamed by my sadness.
The thing is, the therapies didn’t help him. The attempt at diets didn’t help. He didn’t just magically start talking, sleeping, or eating. My boy retreated farther and farther into himself that year and nothing we tried was reaching him. Some nights he would stay up all night and scream. Some nights we took turns sitting with him while he shrieked and kicked and hit his head. Some nights we still do. He wouldn’t wear clothes or eat foods. Because of his food aversions, he somehow subsisted on only blueberries for an entire year. A feeding therapist would come and encourage him to touch new foods, but that attempt at desensitization never seemed to elicit any change. I didn’t know what was making him sad or even if he was sad. Maybe he was crying because he was in pain. Maybe he was afraid, or bored, or frustrated. The only thing I had to offer him were hugs.
From one part of the autism community, I learned I wasn’t allowed to talk about the hard parts to anyone. They said, if I talked about the sad parts then it was only because I wanted attention. Talking about the sad parts meant I wanted to make it about me. I wasn’t allowed to talk about his struggles because that would be exploiting his privacy. If I loved him, I would only talk about the positives. I would focus only on the positives and I would, above all, never make what was happening in our lives sound dire or sad.
From another part of the autism community, I learned I wasn’t allowed to talk about the positives. They said, if I only talked about the happy days then I wasn’t being honest about how hard autism is. They said, If I just talked about the positives then no one would ever really know the struggles our kids go through every day. Talking about the positives was being superficial, and I was doing a disservice to my child who needed real help and honest attention.
I wasn’t allowed to talk about any of the new things my little guy could do because that was implying his worth was related to his abilities. I wasn’t allowed to talk about the things that my little guy couldn’t do because that was fatalistic and depressing. I learned that to say one thing is limiting, hopeless, cruel, and intrusive. I learned that to say the other thing is to be dishonest, insincere, ableist, and fake. I was taught that the only thing truly safe is silence.
Some days it feels like the silence is an eight foot tall fence around our lives. Some days I hope people can try to forgive me if I say the wrong thing. Some days are hard. Some days hurt. Please don’t assume that the hard days only hurt because of my expectations for my son. That they only hurt because of all the things I want that I am missing out on. You see, I also have four neurotypical children. There is no part of parenthood that I am missing out on.
The hard days hurt because they are sad. I feel sad when my little guy can’t tell us what he wants. When he screams and hits his head repeatedly because he is so frustrated. When he is trying so hard to tell us what he wants but the only thing he can say is “rectangle.” I feel the worst when months go by and he doesn’t try to tell us anything at all. I don’t want him to be lonely, or scared, or hungry, or in pain. I especially don’t want him to feel those things and know that there is no one in the world he can really tell about it.
I feel sad when we can’t go places as a family because of the noise, the people, or the confinement. When I see another boy my little guy’s age give my baby girl a kiss or a hug, my heart hurts a little. You see, she loves her big brother and has been trying to get a hug from him her whole life. Your little boy doesn’t even really know her and gave her one like it was nothing. It hurts when people say, “what a good boy!” when neurotypical children are expressive of their feelings like that, because that implies my son is “bad” for being unable to. I feel sad when my little guy will only sprinkle dirt, or chalk, or the fine grit by the side of the road. When it goes on for a long time, I worry that I have lost him forever somewhere. I wonder how he is. I feel afraid when he rejects a food because he only eats a few as it is. I worry that we will have to try a feeding clinic. I worry that the clinic will cause him to eat even less, or that he will eat less if we don’t try a clinic. I worry about putting him in preschool next year because maybe it will be too ABA or too demanding, or not demanding enough. Or, maybe it will make him feel scared or sad. I worry about not putting him in preschool and stifling his future. I worry about doors left open and windows raised high enough for him to fit his head through. I worry about hot stoves, hot pot handles, running towards roads, and any body of water.
I worry about a future I can’t predict. I worry about this silence I can’t see our way through.
Some days I can’t climb out of the sadness because I want so badly to talk to my son. To hear anything that he is thinking. To know his concerns and his questions, to comfort him.
Some days are easy. Some days, despite everything he struggles with, he starts his day with the most contagious joy. He finds a window with morning sunlight streaming in, and plays for hours in the warm sunbeam casting a shadow on the wall. On those days I feel nothing but happiness for this special little boy who shares our lives.
Some days he jumps on his trampoline in the warm breeze and giggles up at the clouds. Somedays I am sure everything will be ok.
I feel happy when he smiles because the word “smile” really can’t encapsulate what he does at all. His whole face becomes dimples and sparkling eyes. Did you know that smiles have a sound? Well, they do. His do. And it is one of my very favorite sounds in the world.
I feel happy when he knows we are driving to a park that he loves. He squeals and laughs as he dances his hands in the sunlight. When we finally get there, he runs ahead on his familiar path. He always goes to the little creek with a bridge first, then runs alongside the wetlands, and then finally runs on the trail that weaves through the woods.
I feel happy when my boy sees me from far away. Really sees me. When he walks over to me and reaches his thin little arms up to be held. When he puts his arm around my neck and pulls me in close so that he can do Eskimo kisses.
Then I feel like the luckiest mom in the world. Because, I am. All of these feelings are swirling around my life all the time. Sometimes, the coin-toss that is my day lands on sad . . . or on happy . . . or on just plain exhausted. So, please forgive me if I say the wrong thing.
I don’t want to be afraid of giving people space to feel sad, or happy, or scared. Afraid of giving myself or others the space to say the wrong thing. Feelings, both good and bad, are just the passing filters of the prism that is our time here. I want to believe that if we hold space for all of the colors of our experiences to be in the same room together, if we give them space to show up as they really are and get to know them, then we will be able to see eachother, and ourselves, more clearly.
Love Beyond Words 