Plinth Blog Special Needs Parenting


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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Having a Child with Down Syndrome, Part CXXI: More Self Care

Alice has been having an challenging time taking a shower in a reasonable amount of time. We made a decision last year that as a teenager, Alice should take a shower every day. Alice clearly doesn't want to do this and does everything that she can to drag the process out. This past week, she set a personal record of taking two hours to get through the process and that's with repeated reminders from us to get on task ("OK, OK! I doing it!"). We had tied success in getting the job done tied to an activity after showering. Nope. No good.

After that night, E&I both decided that we've had enough of that nonsense, so we tied her performance to a food reward, since recently Alice has been thinking mostly with her stomach. I don't like using food as a reward. I really don't, but 2 hours in the shower? No. Just no.

And for the record, what's up with this? Clothes scattered on the floor, door open, and she's in the shower. Well, 1 out of 3...

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Having a Child with Down Syndrome, Part CXX: Try to Say Yes

This morning started with conflict between me and Alice. Alice has a big problem with impulse control. If she sees something that she wants to touch, even if she knows that she shouldn't, she does. This is a perpetual problem and we haven't had a lot of success with it. This morning, Alice went into her brother's room. I noticed that his door was open instead of closed and let him know that I was going to close it. Before I could get to the door, Alice came out looking tremendously guilty. Time out-ularity ensued.

I should point out that at this point in Alice's life, she spends a lot of her time-out yelling at me. For the most part, I believe that this is a tantrum and that a tantrum loves an audience, so I usually let it go, but this is also at odds with my belief that Alice should be allowed to make a choice in the matter. If she keeps up with the yelling, her timeout will last longer. I let her know once, twice, OK fine, at this point this is on you, Alice.

Finally, she took her timeout and was released. She came down and I was working on our menu. While I was doing this, she took out a cookbook and put on an apron and let me know that she wanted to make cheesecake.

Not this recipe. Lime cheesecake on the next page. Huh. My immediate reaction was to say 'no' because of how she acted this morning, but she was showing a fair amount of initiative, so I decided to reward that. I sat her down and put the menu in front of her and we started doing a new thing. I started showing her how to make a shopping list from a menu. We looked at each item and went through what we needed to make that meal and added the items to the list. Then I pulled the cookbook out that she had grabbed and started going through each of the ingredients. Alice read them and then spelled them for me. I didn't ask for that. She did that on her own. Nice! I also asked her to pick things from the global shopping list to put on her shopping list. That also worked out well.

In the store, I got one of those nice parenting moments. Alice went to the deli counter and ordered some cheese and after she got it, I heard her say to herself, "Nailed it!" as she put the cheese in the cart. I had to turn my back so she didn't see me laughing.

Once we got home and after I put the groceries away and we had lunch, I set up a mise-en-place for the cheesecake and we got to work on it.

This is Alice putting in an egg into the custard. It's not a complicated recipe and that works well for her. Most of it is "dump and mix". Through the process, as much as possible I had Alice read the recipe and the instructions so she knew what was coming up next.

It was not an ideal cheesecake (it was really made for a 9" pan, not a 10" pan, so it was a little low and a little rubbery), but it was all the more satisfying because of Alice's pride in doing it. And this is the benefit for trying to say 'yes' in a situation when you really want to say 'no'.

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Having a Child with Down Syndrome, Part CXIX: Self Care

First bit (not about self-care), I had given Alice a snack today after school: her usual, corn chips and guacamole, or in Alice's words, "broccoli-moley". I had turned my back and Alice grabbed a tangerine, peeled it and ate it. Now, if you've been reading this blog you know that Alice had a stroke and her right hand doesn't work so well, especially fine motor. Imagine trying to peel a tangerine under those circumstances. Right. Hunger is quite the motivator.

When we set up Alice in her room in this house, E set up an Ikea desk and vanity complete with a caddy for personal care items including a hair dryer. E taught Alice to use the hair dryer, but Alice has trouble doing that independently. She dries her hair on one side really well and the back and the stroke affected side not so much. She also holds the drier right against her scalp, causing herself burns. Seriously.

So what do you do? Change the technology.

E picked up one of these older hair driers and  Alice is doing fine with it. It takes her a little longer, but that's not a bad thing.

Every step helps her get better at taking care of herself on her own. Now if she could only take a shower in under 45 minutes.

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Having a Child With Down Syndrome, Part CXVIII: Secret Handshake

Alice is a very touch oriented child. She seeks touch as a constant reward and doesn't follow social conventions for personal space, which is a constant uphill battle. School has done a good job of substituting high-fives for hugs and has gone a long way to help educate her peers as well so that the boundaries are firmer.

In a similar vein, Alice and I have our own "secret handshake" for accomplishments. It goes: high-five, knuckles, elbows (see above), shoulders.

It's goofy, but I like it for that very same reason.

Shhh...don't tell.

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