When my little boy turned a year and a half, he changed. He was this perfect little thing, so cute and loving, silly and playful. He was reaching all his milestones just a bit later than other kids, but who cared? He was my precious baby, it didn’t matter. Until suddenly, he wasn’t late reaching his milestones, he was stalled. His motor skills stopped progressing, his attention span slipped and all of a sudden all those words that we so lovingly taught him were gone. Just gone.
You can’t imagine the worry when your baby suddenly can’t call you mama anymore. Why he’s suddenly not looking you in the eye and why you need to repeat everything a thousand times until he finally focuses and hears you. You can’t imagine the confusion of trying to get him to say a word that he had learned months ago, only to realize that he doesn’t know it anymore. You can’t imagine it, unless you’ve lived it.
It took a long time to figure out what was going on. Our pediatrician at the time was absolutely useless and brushed away all our concerns. We were young and naïve and assumed that if the doctor wasn’t worried, maybe we didn’t have to be. That’s what we told each other, although inside we both knew we were scared.
When we finally reached beyond the doctor to seek help, things started changing. My little boy got into Early Intervention and they determined he needed speech therapy and occupational therapy to develop his fine and gross motor skills. Our world turned into a web of words we’d never heard before with speech delays, IEPs and therapists.
And still, we knew it wasn’t enough. There was still something missing that we didn’t understand, and that word, autism, had been floating around in our heads for a while. We didn’t want to believe it though. If he only had a speech delay, he’d grow out of it. But the other thing… There’s no growing out of that. We were scared for his future. But you know what? Trying to avoid the confirmation of what we knew in our hearts to be true was not helping him, or us, or anyone. My husband finally convinced me to get him to a different doctor, and we found the answer we knew was there.
Autism. Sensory Processing Disorder. Possible Obsessive Compulsive Disorder. At the time it was nothing but a relief to hear someone say it out loud. Knowing what is going on is important in advocating for my son, and understanding him.
But in all my time online, reaching out and trying to connect with other people raising autistic kids, I kept seeing one thing. “I’m thankful that my kid has autism because…” It is a good sentiment, it really is. And I totally get it. I don’t wish I never had my son, and if I could go back in time I wouldn’t do anything differently (besides getting a diagnosis sooner) but personally, I can’t agree. I’m just gonna say it.
I’m not thankful for my son having autism.
I’m not thankful for sensory processing disorder. I’m not thankful for OCD. I’m not thankful for the fact that a simple noise can send my son into a meltdown. I’m not thankful that he can’t get comfortable in a shirt with a tag on it. I’m not thankful that he can’t read or watch something unless it’s perfect from the very beginning. I’m not thankful that his sensory issues are making potty training impossible. I’m not thankful for his struggles, for his fears or for the heartbreak he doesn’t even know to feel yet when kids say he’s weird and run away from him.
I’m thankful for my son.
He is a beautiful, crazy smart, silly boy with a huge heart that makes his mommy melt. He takes care of his sister, he gives me the best hugs, and when he’s really happy, his eyes light up brighter than anything else in the world. And when I think of all the things he goes through, all I think of is how his meltdowns take away his smile. They take away the light in his eyes and fill his brain with fog. They change him from loving brother to a distressed kid who will push his sister down to get away from her. They make it impossible to talk to him, to reason with him, to love on him. When he’s struggling, there’s no amount of being “thankful” that will help him. There’s no amount of being “thankful” that will help me either.
My little buddy will be six years old in a couple months, and I know we’ve got a long way to go. I know that as he grows up, he will learn how to handle the stresses in his life in a healthier way. I know he will change some things he does, mimicking his behavior in certain situations to fit in better. I know that, underneath all the struggle, one day he will be okay. I just know that he will grow up to be an amazing man that my husband and I will be nothing but proud of. So maybe one day I will be able to say with total sincerity that I’m thankful for his autism. But right now, seeing how hard every single day is for him, it’s hard to appreciate anything that hurts him so much. Maybe one day I’ll be able to look past the bad, and see the good things it has done in his life. Because I know there will be plenty.
But at this age, with this much struggle, saying so would be a lie.