Having a Child with Down Syndrome, Part CXV: Steps Towards Self-Advocacy

It’s been winter break and Alice has been ill-behaved. To be quite honest, both Alice and E have been getting on each other’s nerves and E has clamped down hard and Alice has been giving her the metaphorical finger. It’s been rough for both, especially since I didn’t have a whole lot of time off and couldn’t run interference so much. During the week, I took Stuart to lunch one day and decided that today should be Alice’s day.

We went to the Roost in Northampton, since this is different from the usual places that Alice goes and I thought they had decent gluten free options. It’s OK – they did have some things that I knew that Alice would eat. Alice made her decision and we went to the counter.

Alice stepped up and said, “I have a gluten allergy.”

It was clear as day to me, but not to the woman behind the counter.

“Try again, Alice, I don’t think she understood.”

“I have a gluten allergy and I want grilled cheese.”

“OK, grilled cheese.”

“Alice, I don’t think she understood, please try again.”

“I have a gluten allergy and I want grilled cheese.”

“Right, grilled cheese.”

“One more time. Slow and smooth.”

“I. Have. A. Gluten. Allergy.”

It was clear that she wasn’t being understood, so I figured 4 times was enough and I intervened.

The important thing here is that Alice, unprompted, spoke up for herself and her needs when ordering food, which is a big deal. I’m very proud of her for doing that. In spite of the other behavioral issues we’ve seen, this is a big practical win. Secondary was the inability to be understood. I think that we need to fix this in two ways. The first is to see if we can change what she says to “I have a gluten allergy. Do you understand?” The the second is to have her say that up to three times and then give her a card to get out that has those words on it. In theory, she could lead with the card, but that’s not how most people communicate, and I discovered during a brief period when I was unable to speak because of dental surgery that many people react to being handed a card with a clear reason explaining what’s going on by treating you as if you’re deaf, so I’d like the card to be a fallback and not a primary approach.

We’ll see.


Having a Child with Down Syndrome, Part CXIV: Money Awareness

Oh, poor Alice. She doesn’t really get money too well. To be more precise, she doesn’t understand the value of money. It’s hard to tell whether she knows the difference between the value of a one dollar bill and a twenty. So how do you begin? Honestly, I don’t know; so like many things, I make them up as I go along. E needed a break and needed to get the kids out of the house, so we decided to go see Moana (hey – Lin Manuel Miranda – wonderful music. My kids were entranced). Because it’s a movie, Alice immediately bargained to get more. “I get popcorn and Diet Coke?” then after I gave her the +2 Look of Are You Shitting Me, she added, “please?” I said, “sure, but you have to pay for it with your own money.”

I called up the Cinemark theater where we were going and explained that I was trying to teach my daughter the value of money and could they tell me how much a small popcorn and drink cost. They told me and I started pre-teaching her. Alice got her money and we did a short game of “is this enough?” and “is this too much?” until she had an amount that would give her a reasonable amount of change. I talked through the process a couple more times because repetition is important.

When we got to the theater, I did a little more repetition while we waited in line.

And she ordered, paid and collected her change. Step one, completed.


Having a Child with Down Syndrome, Part CXIII: Alice is Busy

Both Alice and I had Nutcracker, this fall into the winter. Alice also in two programs through Whole Children. The first is a drama program and the second is Joyful Chorus. The latter is directed by Nancy Janoson, who I know from Florence Community Band. For the past several years, the Community Band has had a holiday concert with the Joyful Chorus. I have not been able to participate the last 3 years because Nutcracker is scheduled on that same weekend. Alice only had 1 ballet show to do. I had 6, so she got to go to the concert.

Alice has great fun with the group and Nancy has the patience of a saint. When I’ve seen her working with the group, it’s clear that she sees the kids for what they can or could do and not for what they can’t and that is magnificent.


Having a Child with Down Syndrome, Part CXII: Backstage Dad

This week is “theater week” for the Nutcracker production done by the Pioneer Valley Ballet. It’s been quite a long road – Alice has done ballet for more than half her life. Here’s a video that was shot from one of her early recitals. In many of these performances, I’ve been both an on-stage dad and a backstage dad. E has been a backstage mom, helping with costumes, make up, show running or wrangling.

Here’s a picture of me and Alice after a recital when she was 6.

In this recital, I was asked by the studio to dance alongside Alice to help her focus. That meant that I attended two rehearsals before the recital with Alice and the rest of the class to learn the routine. I’m dressed in black so as not to stand out quite so much.

I should interject here that I’m hardly a dancer. I can do a saucy cha-cha and a little bit of swing and I used to have a decent fox trot, but quite honestly, I’m not especially comfortable in my skin doing this. A lot of it has to do with how I relate to music. I am most assuredly a musician and I hear music in a way that is very structural. I can tell you quickly what the time signature is of a piece of music and I can find the down beat naturally, but move to the music? Not so much.

Alice has been in the Nutcracker every year since the picture above was taken and has been a reindeer, a gingerbread cookie, a holly tree and this year a petit gateau.

This year and for the last two years, we’ve done something different. Alice can be a challenge backstage. She has a lot of difficulty controlling her impulses to get into other people’s belongings and to get into their personal space. When she was younger, a lot of the girls had similar issues because developmentally, that’s where they’re at. Alice hasn’t changed in that regard, though. So rather than burden another parent too much, we’ve arranged things so that I play a part in the Nutcracker and on Alice’s day, I’m backstage with her making sure everything goes smoothly.

This year was an excellent year for her in terms of behavior and performance. She was in the second half of the show. I was in the first. When it was time for me to put on make up, I asked her if she wanted to help me and she did, so she sat next to me and held my makeup bag and pulled out each item when she was asked to and I didn’t need to intervene: foundation, blush, eye shadow, eye liner. Alice knew what each was and got them out.

I did my performance as a “Party Adult” and hoped that Alice wouldn’t get into too much trouble while I was on stage. When I came down, I found out that Alice had decided to put on her own makeup while I was on stage. To her credit, she put each element on where it belonged, just not with the coordination that one would expect from a typical 13 year old. And you know what – it’s just fine. I didn’t make a big deal of it, we just waited for her call and had the make up people “touch it up a bit”. Time was running short and we got the call from the stage manager to drop everything and get ready.

This was a bit of an “oh crap” moment because (1) Alice doesn’t deal with abrupt changes in expectation well and (2) she wasn’t in costume yet nor could I find her costume. Fortunately, a woman appeared out of nowhere with a costume for her and I helped her in it post-haste. This is not typical. Usually, I let Alice don and doff her own outfits because we want her independent and, trust me, Alice will do whatever she can to get other people to do things for her if she can get away with it.

To my chagrin, the pants were cut for a girl and not a young woman. Alice is most certainly developing the curves of a woman and I had to lift her of the ground to force the pants on. Alice got in line and was starting to lose it because she didn’t have lipstick on. Pro-tip: don’t make promises you can’t deliver. I told Alice that she would go on stage with lipstick, just get in line with the other girls and I would get the lipstick for her. I had just enough time to find it in her bag and put a couple dots on her lips, which satisfied Alice and the letter of my promise and off she went.

Alice was on stage for all of 3 minutes before coming back down, but I lavished her with praise and hugs and went through the process of getting her cleaned up and changed. She was very excited and very pleased with her performance.

For my part, theater is a mixed bag. At heart, I’m an introvert. I like people well enough, but I find social time to be a draining reward, whereas I find alone time to be recharging. This year (and last year), I started growing my “Nutcracker Beard” in September, which means I totally ignore my beard until theater week and then I hack it into a period appropriate style. Last year I was cast as the butler and I decided to be austere in the role and I chose mutton chops.

This year, while on a rare date with E, we browsed through some 18th and 19th century beard styles together and settled on this:

Once I cleaned it up, it passed pretty well for period. And because I like you all so much, I’m updating this to include a picture of me in full costume and make-up:

Both Alice and I enjoy theater. I’m not sure exactly what Alice likes about it. It could be the social aspect (she is very much a people person). It could be the magic of theater. It could be the joy of moving to music. I don’t know, really. For my part, I enjoy the loose frame of the show and the improvisational opportunities as well as the freedom to create a character who is not me.

When I was in high school, I admired the work that my peers did. My friend, Gary Schwartz, did several plays, including The Diary of Anne Frank. I was jealous of his willingness to put himself front and center. It took me years more of playing music to shed stage fright and anxiety, but now at the ripe age of 50, I care less about the fear of not attaining perfection in performance, but more for the opportunity of living in performance.

And it is a joy to see Alice getting that so much earlier and so naturally.