Having a Child with Down Syndrome, Part LXXXVII: Balancing Act

Copyright © 2015 Stephen Hawley, all rights reserved.

I’ve been having internal issues with Alice recently. A lot of it stems from some regressive behaviors which have been compounded by low expectations of people in the general public. I’ve also been looking at how she’s been progressing in school compared with her peers and it’s depressing. She’s included, she’s participating, but it’s clear that she’s not really getting the material. With all of that I worry about her independence. I mean, how long are we going to continue making sure she bathes properly?

And then we get some really weird things.

For example, we were at a wedding a week ago and Alice was absolutely in love with dancing.


And here is Alice in her element. She’s in a social situation and is having the time of her life.

We went to see Pan this past weekend and on the way home, we were listening to the radio and they were playing an American Authors song, Best Day of My Life:

Alice’s 5th grade class learned this song for the grade school graduation some 5 months ago. Alice was singing along and she was more or less on key, in sync with the song and had the words.

And herein is the balancing act: how do we find the balancing point of making sure she learns the things that will be important for her to live independently as well as the things that she wants to learn? How do we find the balancing point for knowing who to trust and dance with and who to stay away from? What’s worse is that all the balance points are shifty little buggers.



Having a Child with Down Syndrome, Part LXXXVI: More Cooking

Copyright © 2015 Stephen Hawley, all rights reserved.

I’ve talked about this before, but I think it’s good to bring it up again. Cooking is a basic life skill that is important for living independently. It’s also important, I feel, to set an example for good, homemade food. For the most part, we try to have vegetable heavy meals with some meat and a treat here and there. Since we’re in fall in New England, I thought today would be a good day to make an apple pie with Alice. For this, we used two kinds of apples: honeycrisp and macoun. Neither are traditional pie apples, but I figured they would work out just fine.

As Alton Brown has spoken about setting up a proper mis-en-place, “organization will set you free.” I measured out the sugar, cinnamon, corn starch and spices and let Alice mix them up. I cut up the apples and chopped some dry cranberries and then had her put the sugar mix on top and I mixed them up. Then we took turns filling the pie shell.



I put on the top shell and Alice helped pinch the crust down. I cut out a simple dough shape, cut a few holes in the top and put it in to bake. It came out quite well.


The crust is gluten free. I was assured by my family that it was a delicious pie (I’ve sworn off sugar a few months back). I served it with faux banana ice cream, which is frozen bananas, a small amount of milk and some vanilla, run though a blender.

Alice loved the entire process, from putting on her apron to mixing and filling and of course eating. I can tell you from experience that without the single organizational step, this process is much more difficult. Alice wants to help, so when I’m cooking, I try to have some steps in my back pocket that Alice can do. A few months back I heard Wil Wheaton talking about how to be an awesome dungeon master in role playing games. He said that it’s important to figure out a way to say ‘yes’ instead of ‘no’. Cooking with a child with special needs is the same thing. How can I figure out how to say ‘yes’ when Alice asks, “May I help please?” It can be something as simple as putting silverware on the table or as complicated and measuring and mixing. If I’m cooking from scratch with no recipe, it might take me an extra couple minutes to put all the seasoning into a small dish for Alice to add into the dish instead of me adding them in piecemeal. Those extra couple of minutes are an investment in her future, or at least I hope so. Yes, it takes me very little time to, say, make something from a boxed mix and a lot longer for Alice to read all the words and to help her follow the instructions, but getting that teachable moment will be so important when I’m not around.


Having a Child with Down Syndrome, Part LXXXV: Cuts, Boo-boos, and Owies, Oh My!

Copyright © 2015 Stephen Hawley, all rights reserved.


Boo-boos and owies are a fact of life, even at my age. When you are cognitively delayed, getting injured can be challenging. Yesterday, Alice caught her finger in the car door. I get this. Around about the same age, I did the same thing on the way to a band concert. I had the added ingredient that the mom who was driving the carpool started to drive away while my finger was pinned in the door and as I pounded on the window with the other hand to get her attention.

It took about a half hour to calm Alice down. She was angry and was lashing out at everyone around her. I got told to get lost several times. Once I was able to calm her down, I addressed the band-aid situation. I tried the parent trick of a false dichotomy: “do want a princess band-aid or a Hello Kitty band-aid?” “I don’t want any band aid!” Oh well, it lasted 12 years – that’s a pretty good run for a manipulation technique. I tried the “let’s try to make this your idea.” trick where I explain the consequences of not doing what’s best and ask her what we could do to avoid that. No dice. Finally I did the “you need to do A or you can’t do B”, which I like to avoid. In this case, it was “you need to wear a band-aid or you can’t go to modern dance.” That worked. Phew.

To her credit, once she was in dance class, she did a great job and seemed to have forgotten the insult to her body that had happened not so long ago.

This is the same process that you would do with any kid, but in Alice’s case, it takes a lot longer and you have to give her several free passes on the yelling with repeated, very calm “I know it hurts, but I don’t like being yelled at.” messages.

On the plus side, yelling is a great way to build breath control. Just saying.