Rerun alert: I’ll be publishing some (edited) articles from the old blog this week, as I re-adjust to the schedule of working. I hope some of you who missed these will enjoy.
I cannot speak for Henry. I can’t tell you exactly how autism affects him, because I’m not him. I can’t tell you how Henry feels when he is having an intense episode of anxiety. Only he could do that. What I can tell you is what I observe, which is a boy overcoming obstacles on a daily, sometimes hourly, basis.
The autistic brain processes everything differently than the typical brain. Sights, sounds, smells, touch, texture, words, feelings, thoughts. Everything. Imagine waking up every morning to a world that you see in extreme detail. You don’t miss what everyone else misses. They see the forest, and you don’t just see the trees; you see every leaf. Your unique gift is that you see everything, feel everything.
Additionally, maybe your clothes bother you. Maybe the temperature hurts you. Maybe the flourescent lights in your school or workplace give you an incessant headache. Maybe smells cause you to vomit. Sometimes you can’t focus on your work because the world is wreaking havoc on your brain and body. These are just some of the ways autism affects people; there are others, and certainly these effects range in severity.
You wouldn’t know it to watch Henry in his classroom or playing at recess or riding bikes and scooters with the neighborhood pals. You would know it when, suddenly, he is affected by something you never saw. Sometimes Keith and I see it coming, sometimes his teacher sees it coming, because we are really clued into his triggers. Still other times, only Henry knows the meltdown is on the way.
What I know is that he has learned to self-regulate, but there was a time that his body needed so much proprioceptive input, he couldn’t sit still when we read bedtime stories. He often bounced up and down, writhed around, and climbed on my head. This didn’t mean he wasn’t listening; it means he was helping himself listen. If I skipped a line in a familiar story, he immediately corrected me. If I stopped reading, he urged me forward. He was absolutely listening.
What I know is that new or not-routine situations can sometimes, but not always, cause him anxiety. Being rushed by classmates’ hugs at the classroom door is overwhelming and embarrassing, so being late to school for a dentist appointment is simply not an option. Performing in front of a group of parents is his nightmare, but last year he managed it like a champ – not loving it, but doing it anyway without disaster.
What I know is that I need to listen when he gives us a firm “no.” Even at the young age of 5, he was more self-aware than most adults. People must think we are a little nuts when we comply, but we’ve had enough missteps by now to know when he says no to a suggestion, there is a legitimate reason.
I still cringe when I think of a time when, flustered, embarrassed, and anxious for reasons having nothing to do with him, I tried to force him to do something he didn’t want to do. And I instigated a meltdown. And then I punished him for melting down, because I thought it was just a tantrum. It wasn’t. He was scared. I would jump in a time machine right now if I could; it’s one of my lowest parenting moments.
At least I can say I am learning. Recently we attended a breathtaking children’s performance of The Lion King. Afterward we wanted a picture with our friend who portrayed Scar. Henry said no to the picture. Once upon a time I would have done a lot more coaxing, but not now. I get it.
These precious people with the magnificent brains are more brave and more tenacious than we’ll ever know. Being the mom of one has pushed me to step outside my comfort zone in ways I never expected. His life is not about me, not in the least, and he’s not my inspiration pornography; nonetheless, I’m thankful for the role Henry has played in making me a stronger person.