Having a Child with Down Syndrome, Part CXXXIV: Three Nice Surprises

Alice and I did our shopping today, as is our wont. We made our list, which was a bit of a trial. I’m trying to have Alice type in the list all by herself instead of transcribing it, but Alice’s spelling is not so good and there appear to be a number of missing steps in the scaffold necessary for mastery. I’m trying to get her to sound out what she’s spelling, which I’m hoping will help bridge the gap to the word assistance on her iPad. The problem is that Alice wants to type in the starting sound and the ending sound skipping everything in the middle without vocalizing. When I can convince her to vocalize, things go much better.

We have a routine, which I have detailed in the past, but today Alice threw an interesting curve ball. When we got to the produce section, she told me that she was getting lemons and limes and that I should get the spinach and the mushrooms. “We split up.” OK – I have no problem with that, but it was brand new for her to suggest a divide-and-conquer approach to shopping. I got the two items she told me and she got hers.

Surprise number two: Alice told me, “wait right here – I get the broccoli.” Again, I have no problem with this, but keep in mind that Alice had a stroke and her right hand doesn’t work as well as her left. So imagine trying to open a typical grocery store plastic bag under those circumstances. I said nothing and Alice did it all by herself. She didn’t exactly pick the best broccoli, but we’re working on that.

Surprise number three: Alice picked a box of cereal for the week (store brand Rice Chex, gluten free). Before she put it in the cart, she spent some time reading the recipe on the back for a snack mix. It was crappy: starch, more starch, some grease and salt (powdered ranch dressing). She read through the entire recipe. Unfortunately several of the ingredients had gluten, but there were substitutes we could find. I pointed out the gluten and told her that we could find substitutes if she wanted to make it. Why? Two reasons: authentic activities that involve reading and following directions are more powerful when your child¬†wants to do them and second Alice had a rough Thanksgiving – a lot of maladaptive behaviors – and there’s power in saying ‘yes’ instead of ‘no’ when she’s clearly working. She seemed confused that the recipe made a snack and was not for breakfast and decided that she didn’t want to make it. That’s fine.

Given that we a rough time over Thanksgiving, it was really a joy to get these three surprises today.


Having a Child with Down Syndrome, Part CXXXIII: Comic Con Part Deux

Back in August, Alice and I went to Boston Comic Con, which was a great event for both of us. Several years ago, we went to Rhode Island Comic Con as a family and I thought this might be a good one to try with Alice. I asked Alice if she wanted to go and she said yes, so I bought tickets. Years before, I bought a pattern for 19th century set of tails (and lost the directions) and decided that I was going to make them into a Harley Quinn suit. In the meantime, Alice decided completely independently that she wanted to be Harley Quinn for Hallowe’en, so we both had the same costume for this, which I’m totally cool with.

Like before, there was a fair amount of pre-planning and talking about behavior. Without this, Alice would be all over every cosplayer with no restraint. We gave her phrases that she could say that would help her interact with people. Simple things like, “I like your costume.” “Can I take a picture with you?” and if someone asked her for a picture, “I need to ask my daddy.”

We arrived and parked and found that the line — and I swear I’m not making this up, because I just used gmaps pedometer to verify — was over a mile to get into the center. We arrived slightly after the doors were set to open and it took an hour and a half just to get into the arena. It was cold and Alice and I were both in costume.¬† Alice was patient and extremely well-behaved for that time. It’s hard to imagine any kid managing that well, but Alice did.

I let Alice pick where we should go first and she decided that we were going to the mini kid’s con on the top floor. The content was well beneath her, but there are only so many battles to fight in one day. We then hit the main floor and wandered around. We stumbled onto the “celebrity” area and oddly enough, a lot of the guests were not swamped. Considering that there were 10’s of thousands of people in the building, this was hard to imagine. Chris Sarandon was all alone, so I decided that Alice should meet him. I was a little leery because Alice perseverated on The Princess Bride for years and re-opening that particular can of worms might be problematic. Alice was somewhat overwhelmed, but then she saw the glossy photos and the gears started to turn. “Hi, my name is Alice and this is my daddy, Steve. You were in The Princess and the Bride.” Chris was nice and patient. I thanked him for his work and for being kind to my daughter and we moved on.

Next we ran into Brent Spiner. He and I had a nice conversation and he was also very nice to Alice. In many things, Alice can be a litmus test. If you’re genuinely patient and kind to Alice, you’ve demonstrated your worth.

We continued to wander and Alice picked out people for pictures.

I don’t think we’ll go back to Rhode Island Comic Con – it was too crowded, the crowd management was not so good, the organization was awful (there were a few artists scheduled to be there and I couldn’t find them – no maps, no help, there app had no information – awful) and the food options were truly horrible for anyone with Celiac disease.

Again, most of the reason for success was pre-planning, lots of talking with Alice about expectations, giving her agency, trying to say ‘yes’ as much as possible.


PSA Comparison

I saw was pointed at this article from Ad Week that featured this PSA from the Canadian Down Syndrome Society:

I like it. I deeply understand what they’re trying to say because I’ve experienced it. I’ve heard many well-intentioned sorrys. The societal issue at hand is that our current society loves healthy new babies. Newborn infants represent future potential. We’ve been taught that people with Down syndrome don’t have future potential or that there is something wrong with them. Sorry (that you don’t get the same dreams as other parents). Sorry (that you won’t experience the pride of other new parents). Sorry (that your child won’t amount to anything).

This ad gets that point across by having young adults with Down syndrome say all kinds of things that are shocking and inappropriate, making the point that even offensive words are better than sorry.

Here is my favorite Down syndrome PSA:

I cry every time I watch this. It’s very sweet. The goal here is to try to remove the unspoken parentheticals that follow the sorry.

What’s different between the two, really, is that “Anything But Sorry” is made for the 99% of the population (in the US at least) that aren’t affected by Down syndrome. It is indirectly for the 1% of us that are affected by it. Whereas “Dear Future Mom” is directly for the 1% affected and indirectly for the 99%.

Both ads are very human and very much speaking a message of hope.

Right now they are hard messages for me to internalize because Alice’s trajectory at this point is pretty clear and it’s not great. I don’t have a lot of hope for her independence at this point. I wish I did, but I don’t. That doesn’t mean that I stop caring or that I stop trying and working with her. I focus on life skills: shopping, planning, cooking and I hope that there things pay off a little.

I am happy to see work like this because it’s clear that people care enough to try to make the road ahead smoother for people with Down syndrome.