I looked over at Little Man on the way to school this morning with tired, worried eyes. He stared out the car window, headphones on, head bopping to whatever video game music was playing on his phone. We’ve had some big highs, and some super lows the last couple of weeks. As much work as it’s been for me getting him back into the school routine in a brand new school, with a new teacher, new classmates, new schedules, new everything, I couldn’t help but wonder what it’s like for him.
What is it to live in his world? I wish I had a better grasp, a greater understanding. What is it like to live in a world in which sounds are too loud, smells are overwhelming, flavors are too much or too little, new is too new, “normal” is used to describe someone else. I wondered what it takes out of him every day to resolve a brilliant 11-year-old brain with the social and emotional skills of a five-year-old. I wondered what it was like to feel a certain way, but not be able to properly describe that feeling. What is it like to have to fight to sleep every night? What is it like to need so desperately to know what’s coming every day?
I worry about my other two kids too. What parent doesn’t worry about their children, how their lives will go, how best to protect them and help them grow into successful, happy adults? But my goodness….in this moment, I can hardly see past this one day for my Little Man, much less to a brighter future when the work is less, comes more easily, and the world and everyone in it aren’t quite so overwhelming for him. My heart just aches for him, and wishes to take all the hard stuff away. It’s not helping my emotional state I haven’t slept well all week.
There are so many times I see him struggling, trying to use all the tools he has to get through, and I can’t help but think it shouldn’t be this hard for my baby boy. It isn’t fair what comes naturally to so many he has to learn, and re-learn, and re-learn again. This part of autism is my nemesis. This is what I would take away for him if I could. I don’t know what’s going on inside his head. So many times, he doesn’t have the words to tell me. If I knew what it’s like for him, maybe I could make it that much easier. But I don’t know, can’t know, so we keep doing what we’re doing.