Plinth Blog Special Needs Parenting

27Feb/171

Having a Child with Down Syndrome, Part CXXII: Patience

Ed: Yeah.  No disrespect or nothing, but like how long is this going to take?

Master: Tae-Kwon-Leep is not a path to a door, but a road leading forever towards the horizon.

Ed: So like, what, an hour or so?

Master: No, no.  We have not even begun upon the path.  Ed Gooberman, you must learn patience.

Ed: Yeah, yeah, patience.  How long will that take?

I took my kids to a movie today and met up with a friend of ours and her son. I think for both of us parents it was to get some respite. Yesterday was an 18 hour day and I figured I'd probably get at least a half hour nap during the film. Alice, of course, was very excited about the movie and grabbed her purse because she wanted to get popcorn and a soda. Like many other things, I tried to make sure that this experience would be as independent as possible. This means that Alice does all the talking and has to respond to the questions and does as much as she can without depending too much on me.

The other parent remarked to me that she was impressed at how patient I was with Alice. This stopped me cold and I couldn't really respond to it well as I've had very little patience with Alice recently, so I did my very best to deny the compliment or at least write it off as routine.

And because I overthink things a lot, I tried to figure out where my patience actually was in this. A lot of what I was going on was steps and scaffolding that we have done for years with Alice, but I think where my patience was today was not with Alice but instead with the young man working the register at the theater. Alice, more or less, knew what she had to do. He knew what he had to do, but not in this context. So instead of really being patient with her, I was instead patiently training him to work with Alice in this transaction. I made eye and head motions to direct his attention to her and not to me and to ask questions to her and not to me. At one point, I said directly, "this isn't my transaction; this is hers." to refocus him. It all worked out well. But I'm pretty sure that my patience was with him and not with my daughter. Or maybe it's just patience disguised under familiarity with Alice. I'm not entirely sure because, after all, I wasn't firing on all cylinders and was still looking forward to my nap.

So yeah, patience? Can I get that now?

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  1. you are amazing


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