Having a Child with Down Syndrome, Part CXXVIII: Building Appropriate Independence

Independence is a scary thing with Alice. Ideally we’d like her to be able to do as much as she can on her own, but the problem is that she doesn’t always have particularly good judgement. For example, if she wakes up at 4 in the morning, she thinks it’s a good idea to get up, grab some ice cream and then go watch Pee Wee’s Play House. Independent? Yes. Wise? No.

Alice has been on a cereal kick recently (gluten free rice chex). E started teaching her to do most of this on her own. She puts out a bowl of dry cereal, a cup of milk, a cutting board, a banana, a knife and a spoon. At this point, Alice grabs her own napkin, sits down, puts milk on the cereal, peels the banana, cuts it up, puts it on the cereal and eats it. This is totally awesome and is a good life skill. Pouring her own milk into the glass? We’re not there yet. Pour her own cereal, not quite.

So when, at 6:00AM this morning, I heard the cupboard open, I interrupted my conversation with E and darted downstairs. Alice had gotten out the cereal and a bowl and was getting ready to start pouring. I interrupted her and got her to  a point where she could take over. Phew. Dodged that.

Today we did our usual shopping regime, but when I sat down to make the list with Alice, I had her pick some of the meals and think about what we would need. At appropriate times when I asked her a question she thought about it and replied, “I don’t know.” This is really hard for her since over the years the pattern has been “an adult asks you a question then you answer it no matter what.” Saying ‘I don’t know’ is new. After picking meals, we talked about what we needed to get for those meals and she typed them in. While in the store, she was naturally picking out what we should get next and was making good choices most of the time. When we got about 2/3 of the way through, she was listing off everything remaining on the list. Excellent process!

Our days are not without issues. Before we headed out she went on a crying jag and was lying on the floor weeping. For no apparent reason. I led her out of the house, tears running her down her face and got her in the car while her personal storm passed. On the drive to the store, she told me “I’m not crying any more daddy. I just happy.” I told her that it was OK to be sad and that she could be sad without crying if she wanted to. I’ve also gotten my share of bald-faced lies followed by “but mommy told you”.

And while I don’t know if the judgement will ever get here, I’m certainly grateful for today’s oasis of excellent behavior.

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