Interior Decoration

Friday wasn’t our best day. Joey’s routine has been completely disrupted—therapies have stopped and started with his birthday, and everyone had Thanksgiving and the day after off work. On Thanksgiving, while I was kneading dough for rolls, Joey insisted that we needed to get in the car: “Car. Shoes. Car. Okay.” When I explained that we were staying at home today, he burst into tears.

Friday was rainy—a rarity, here—and I tried to make it fun. I pulled out the dress-up bins; we made a tent out of bed sheets. But Joey was crabby and tired. (I suspect that he is going through a growth spurt, as his general crankiness and exhaustion have gone along with eating a ton.) Finally I put Kit down for a nap and Joey starting insisting that he wanted “that”; just saying “Dat! Dat!” while flapping his hands wildly and growing more and more upset. I asked him to show me, and I explained that I didn’t know what “that” was, and he just got more and more upset. I tried to put him down for a nap, foolishly—he doesn’t nap anymore, but he was just so tired. But after fifteen minutes, I got him up and then he immediately started getting upset with me again.

“Buddy, do you want to take a bath?” Joey was thrilled; he rarely gets a chance to bathe without Kit, and while a bath with Kit looks like fun (he shouts and splashes and just generally has a noisy good time), Joey likes to lie back in the water and relax. Once in the bath, alone with the water and his bath crayon, he seemed happier than I’d seen him in days.

I spent a great deal of Thanksgiving morning scraping poop out of the carpet and off of the furniture in the boys’ room. Joey has been taking off his pajama pants and diaper at night for a while now, but while there has been pee to clean up, this was a whole different matter. Before I steam cleaned the carpet, I ordered some escape-proof pajamas that another mother of a special-needs child linked me to over a year ago, when we had another period of nighttime nudity. I didn’t buy them then because they were very stigmatizing in appearance; since then, I am happy to see, the manufacturer has started making pajamas that look very much like normal pajamas, albeit with the zipper in back.

An older friend of mine whose autistic son is in his mid-20s advised me to enjoy this time when we look like other families, and to avoid making Joey stand out while it was avoidable. I don’t know how I feel about that advice; it is coming from a lot more experience than I have, certainly. But when people don’t know that Joey is autistic, they just see a little boy who won’t look at them or talk to them, and who throws shocking tantrums over trifling matters. And that could be any three-year-old, I guess, but it has been my experience that when people learn that he has a diagnosis, they are either understanding or obviously uncomfortable—and if they are going to be uncomfortable, I want to know it. I recently joined a new moms group, and at my first group play date, it came up and I mentioned that Joey is autistic; the woman I was talking to said, “I don’t know very much about autism. You’ll have to educate me” and she seemed perfectly at ease, and I relaxed a little.

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3 thoughts on “Interior Decoration

  1. You poor thing! I hope tonight goes better and that the pjs do the trick. Glad you joined a moms group with a potentially nice new friend.

  2. the woman I was talking to said, “I don’t know very much about autism. You’ll have to educate me” and she seemed perfectly at ease

    I want to hug this woman! What a perfect response. Completely appropriate, opening the opportunity for dialog. I hope that there is friend potential in her.

    As for the poop issue, that has to be over the top frustrating. Poop episodes with an infant are overwhelming. A toddler incident would bring me to tears. I am sorry that is one of the things you are dealing with.

    Just so you know, I cherish every word you share here. I feel like I am your friend next door who looks on with empathy but can do very little to help. Thank you for writing and sharing. Your struggles are the education so many of us need.

    ((((bighugs))))

  3. Hi! I’m pretty thankful that my 2 yr old went through the poop-painting quickly…but there were times I safety pinned his zipper closed. There are also ways to just turn footy pajamas around, if you snip the sock-part off. :-/ Hope this stops soon for you, too!!!

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