Posted in Kids

Not to focus on the negative, but…

This has been a challenging summer with Ethan. With him home during the day his differences are driven home time and again.

With a “regular” child, they hit milestones and then pass them. They build one skill on top of another and build on top of that until they are an adult and your job is finished. That’s not the way it is with Ethan. He is completely blind. He is “developmentally delayed”. He has “very high functioning” autism. He doesn’t chew.

I usually get him going in the morning, although he is capable of getting himself up out of bed and going downstairs on days that we sleep in. I help him get dressed. I brush his teeth (a fight each and every time). I put his shoes on. At this point I don’t ever see him wearing regular lace sneakers because of the dexterity needed. Velcro rocks, people.

Downstairs I get his food out, although he might be able to do that himself and I’m going to try that this evening. I pour his PediaSure and coax him to drink it. Fighting almost every single time. If I have the patience (and honestly, that’s rare), I help him to self-feed. Otherwise I feed him yogurt or oatmeal or pudding.

If it’s a school day, I ask him what book he wants for the bus (he reads out loud) and endure the crocodile tears and fit if I can’t find it. Having a blind child look for a lost book is somewhat on the frustrating side, and his lack of reasoning ability doesn’t allow him to understand that if he loses the book he can’t have it. That just doesn’t compute.

His “very high functioning” autism makes for a social child that interacts with his world, which always surprises people. New situations (or doctors) have him with his hands over his ears and unwilling to interact.

The biggest aspect of his autism is lack of reasoning. He is unable to answer “why” questions. Period. And reasoning with him is pointless. We have yet to find a punishment that works. Right now if he hits or kicks one of his siblings (every.day.of.his.life) he has to stand in the corner. If he chants “But I wanna come out!” over and over (every.day.of.his.life) he has to go to his room. If he argues with us “Ethan you can’t watch TV” “Yes I can!” he goes to his room.

At almost 8, emotionally and socially he is about 4. I babysit a girl once in awhile who is four and they get along pretty well. His siblings? Not so much. He hits them, kicks them, verbally ‘copies” them (I thought we missed that boat, but no) and constantly bothers them. All of which does not make for happy relating on their part. And again, “Ethan why did you hit Bennett?” “Because I hit Bennett” is his usual reply.

And yet….

He is a sweet, loving child. He is funny and likes to be around people. He loves to read. He loves to watch TV. He wants to participate in his world, even if he doesn’t understand it a lot of the time. For that, I am extremely grateful.

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