Having a Child with Down Syndrome, Part CXXXVII: Patience? What Patience?

On Sunday, I took Alice skating. She seemed interested and I like a good excuse to get her away from the TV.

Since she can’t manage skates, we borrow a sled hockey sled from the rink. Hauling her out on the ice is a bit harrowing since the transition is tricky. I’m on the ice, skating backwards, hauling 130 pounds from a high friction surface to a low friction surface.

A woman seeing us remarked, “I wish I could have one of those!” I replied, “well, the price is pretty high” “Oh? How much?” “You have to have a stroke at birth.” And then we skated off.

After a couple laps, I made a point of apologizing for being snippy. Some days I just don’t have the patience.


Having a Child with Down Syndrome, Part CXXXVI: Breaking Patterns

Alice is absolutely a teenager. She wants more independence, intentionally ignores us, has yelling fits, and so on. Exactly what you would expect from many teens. The pattern is trying because her judgement about many things is just awful and a parent has to step in. It’s trying for her. It’s trying for us. I’ve been looking for ways to break patterns and see what happens.

We were putting together a shopping list today for a trip to Costco and rather than cue her on spelling, for one item, I said, “don’t you have some in the fridge? Why don’t you get that and copy it?” So she got up and grabbed one and transcribed it. I had to go get something from the basement and when I came back up she said, “Dad, dad-Pop Corners! And pointed to her list. She had noted that we were running low on Pop Corners (a gluten free snack she likes) and had copied it from the package without me there. We didn’t really need more right then, but this was harmless so I praised her for thinking ahead and went with it.

In Costco, we made good on the list in short order, but it was getting to be a struggle because Costco has lots of snack items out on demo and Alice would eat them all given even half a chance. I instead to break that pattern and pointed out how quickly we were going through the list saying “Alice, we are KILLING IT!” which she loved and repeated with all her Alice exuberance. Other shoppers turned heads. So what? We were killing it.

Alice is really liking her high school program and there is an activity group called best buddies that she likes to do things with. They’re doing an event called ‘Friendsgiving’ so Alice and I made a gluten-free cranberry ginger bread sticky cake to send in. I talked to her about it earlier in the day to ensure that’s what she wanted and we made it together. She put ingredients into pans, stirred some things on the stove and did a lot of reading of the instructions. It should be delicious.