Having a Child with Down Syndrome, Part CXLI: Even More Cooking

Alice now has a personal care assistant (PCA) most afternoons, which is great because I need to work and E is in school, so we need to have the coverage. There are times when that doesn’t always work out, like today. Alice’s PCA called in sick, so I had to cover. It happens. The trick to this is to accept that there’s no way for me to continue with my work and that I need to focus on how to spend the time with Alice. Together we made a list of things to do in the afternoon which included a bunch of cleaning tasks and making dinner. I had a frittata on the menu which I do without a hard and fast recipe. The trick was figuring out how to break it down into tasks that she could do both safely and effectively and the tasks that I would do:

Alice Tasks

  • Grating cheese
  • Cutting up asparagus
  • Beating eggs
  • Mixing eggs and milk
  • Mixing ingredients
  • Pouring ingredients into pan
  • Sprinkling cheese

My Tasks

  • Cutting up onions and garlic
  • Trimming asparagus
  • Cooking vegetables and bacon
  • Cutting up bacon (she could have done this, but it was still hot and it was getting a little late to wait)
  • Putting pan in the oven
  • Timing/removing pan when done

This worked out very well. Grating cheese when you have a stroke-affected hand is hard and takes some time. Alice did a good job. It also gave me time to sweat the onion and garlic.

Cutting up asparagus was a challenge, but I gave her a pair of kitchen scissors and that went smoothly. It helped that she really wanted to do the task.

Beating the eggs and mixing was old hand for her. She was starting to go a little non-linear and needed some minor redirection. The rest was familiar and easy.

Notice how she hides her weaker hand when it isn’t needed? Hmm.

At any rate, with Alice the trick is to set her expectations (we made a list), break tasks into smaller pieces and to have a mix of challenging/easy, and try to make sure that it’s something that’s fun.

If you go back through the archives, you’ll see a lot of cooking exercises that we’ve done together. There’s a simple reason: this is daily living. She needs to be able to build a set of skills that hopefully she can generalize and manage on her own.


Having a Child with Down Syndrome, Part CXL: Reminders

It’s been almost 17 years that I’ve been Alice’s dad. Parenting in general is a challenge. Parenting a child with multiple disabilities has been a real bear of a challenge. There are some days when it’s easy and those are a gift. There are other days that just grind you down. While Alice has been going through adolescence, there have been more “grind you down” days, for sure.

I decided that I needed a reminder for myself to help me be the kind of dad that I want to be, so I chose this:

Essentially, it’s a nod to doing Captain America cosplay with Alice as well that I identify with the character, but most important when I feel ground down, I can look at it and get a solid reminder that the strength is there.