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Having a Child with Down Syndrome, Part CXLVIII: Perseveration

This is something that I wrote up on twitter last night, but I thought I’d put it here for posterity.

What it’s like to live with someone with frontal lobe damage. My daughter had a stroke at birth. It made a wreck of her frontal and parietal lobes and her pons. One result of that is perseveration. This means that frequently she gets stuck on things and won’t let go.

For example, she will repeat her daily schedule until she gets attention for it. You think, “oh, that’s not bad. All you do is say ‘right’ and she’ll move on.” Oh you sweet, naive child. Where it gets problematic is in a few categories:

  • when something is coming up, but it’s not today
  • when she injects fiction into her schedule (what she wants vs. what’s there)
  • when her schedule changes

An example of the first is a vacation. In the before times, CostCo had a great package for a vacation that we took. The problem is that Alice has zero sense of time. For the two months prior we had to redirect her multiple times per day that she didn’t need to pack. That gets old so very fast. Why don’t you just not tell her? Not possible always. She is likely to go to a sleep away camp this summer to learn independence. This is a big deal and the camp needed to meet her. So she knows and is excited. But that’s sweet, right? Kids should be excited to do things like that. Sure! But we get that multiple times per day now. Is it really that bad? Yes. When she has another task and instead empties her drawers to pack. Now that needs to get cleaned up. But you can use a calendar to help her see the passage of time! Been there, done that. It doesn’t help.

An example of the second is when you have to take her somewhere (say a doctor’s appointment) and she demands, “and now we go to a fancy restaurant”. Easy. Use a patient response, “aw, what a sweet idea! We can’t go to a fancy restaurant every day. We’ll have lunch at home.” But it doesn’t stop because she gets stuck on that and just keeps repeating the demand. And it’s not a request. It is very much a demand. I don’t know if she’s trying to wear us down or not, but she will keep pushing until you lose your temper.

Then there’s the schedule change. Things change. It happens. But Alice doesn’t shift gears well. For example, her school schedule is fairly consistent, but on 2 days she has services so she misses 1 period. Even though she has had this the whole year, she flips out that she doesn’t have 3rd period, even when she gets reminded several times in the morning. Really upset. Like tantrum upset where she is out of school for the rest of the day upset.

So that brings us to tonight. Alice was supposed to do a Zoom meeting with Best Buddies, a group of kids at school that get together and do activities with kids with special needs. Alice set up the Zoom link and waited. So I offered to help. She probably pulled the link from an old email and it was stale. I offered to help. NO DAD! I SIT AND WAIT! I tried to explain that she probably had the wrong link and I could help her get the right one. Nope. I’m in Best Buddies dad! Uh-huh. I explain the consequences: you’ll wait the whole time and Best Buddies won’t happen. Nope. Won’t hear it. But Alice listen. Don’t you want to have Best Buddies? Yes? OK, I can help you. NO DAD! I SIT AND WAIT!

I stopped trying to help. My spouse came by and tried the same tactics as me. Alice chewed me out instead of listening. Really. And you think, don’t you just let her suffer the natural consequences of her actions? Good parenting, right? Oh you sweet summer child. The time slot ended and now her expectations weren’t met. I reminded her of what I said and how lo and behold it came to pass. Instead she bickers about the time and out and out lies to me about the circumstances. “I know you’re disappointed, but you had the wrong link and wouldn’t listen.” DAD! I TRYING TO LISTEN! No, not so much. It took 15 minutes to talk her off the ledge and that was shorter than I expected, but it was still 15 minutes of high stakes negotiation.

Why did you have to even be in the same room with her? Because when left to her own devices, Alice goes unpredictability non-linear. 10 minutes after she went up (routine), I smelled artificial strawberry. She had gotten ahold of Febreeze and unloaded it upstairs. So no, that wasn’t an option in a room where she has ready access to the stove.

So now you have a picture of what it’s like to live with someone with frontal lobe damage. It’s why I have this. It helps remind me when my patience gets thin.

a tattoo that reads "I can do this all day"

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