Plinth Blog Special Needs Parenting


Having a Child with Down Syndrome, Part CXX: Try to Say Yes

This morning started with conflict between me and Alice. Alice has a big problem with impulse control. If she sees something that she wants to touch, even if she knows that she shouldn't, she does. This is a perpetual problem and we haven't had a lot of success with it. This morning, Alice went into her brother's room. I noticed that his door was open instead of closed and let him know that I was going to close it. Before I could get to the door, Alice came out looking tremendously guilty. Time out-ularity ensued.

I should point out that at this point in Alice's life, she spends a lot of her time-out yelling at me. For the most part, I believe that this is a tantrum and that a tantrum loves an audience, so I usually let it go, but this is also at odds with my belief that Alice should be allowed to make a choice in the matter. If she keeps up with the yelling, her timeout will last longer. I let her know once, twice, OK fine, at this point this is on you, Alice.

Finally, she took her timeout and was released. She came down and I was working on our menu. While I was doing this, she took out a cookbook and put on an apron and let me know that she wanted to make cheesecake.

Not this recipe. Lime cheesecake on the next page. Huh. My immediate reaction was to say 'no' because of how she acted this morning, but she was showing a fair amount of initiative, so I decided to reward that. I sat her down and put the menu in front of her and we started doing a new thing. I started showing her how to make a shopping list from a menu. We looked at each item and went through what we needed to make that meal and added the items to the list. Then I pulled the cookbook out that she had grabbed and started going through each of the ingredients. Alice read them and then spelled them for me. I didn't ask for that. She did that on her own. Nice! I also asked her to pick things from the global shopping list to put on her shopping list. That also worked out well.

In the store, I got one of those nice parenting moments. Alice went to the deli counter and ordered some cheese and after she got it, I heard her say to herself, "Nailed it!" as she put the cheese in the cart. I had to turn my back so she didn't see me laughing.

Once we got home and after I put the groceries away and we had lunch, I set up a mise-en-place for the cheesecake and we got to work on it.

This is Alice putting in an egg into the custard. It's not a complicated recipe and that works well for her. Most of it is "dump and mix". Through the process, as much as possible I had Alice read the recipe and the instructions so she knew what was coming up next.

It was not an ideal cheesecake (it was really made for a 9" pan, not a 10" pan, so it was a little low and a little rubbery), but it was all the more satisfying because of Alice's pride in doing it. And this is the benefit for trying to say 'yes' in a situation when you really want to say 'no'.

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Having a Child with Down Syndrome, Part CXIX: Self Care

First bit (not about self-care), I had given Alice a snack today after school: her usual, corn chips and guacamole, or in Alice's words, "broccoli-moley". I had turned my back and Alice grabbed a tangerine, peeled it and ate it. Now, if you've been reading this blog you know that Alice had a stroke and her right hand doesn't work so well, especially fine motor. Imagine trying to peel a tangerine under those circumstances. Right. Hunger is quite the motivator.

When we set up Alice in her room in this house, E set up an Ikea desk and vanity complete with a caddy for personal care items including a hair dryer. E taught Alice to use the hair dryer, but Alice has trouble doing that independently. She dries her hair on one side really well and the back and the stroke affected side not so much. She also holds the drier right against her scalp, causing herself burns. Seriously.

So what do you do? Change the technology.

E picked up one of these older hair driers and  Alice is doing fine with it. It takes her a little longer, but that's not a bad thing.

Every step helps her get better at taking care of herself on her own. Now if she could only take a shower in under 45 minutes.

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Having a Child With Down Syndrome, Part CXVIII: Secret Handshake

Alice is a very touch oriented child. She seeks touch as a constant reward and doesn't follow social conventions for personal space, which is a constant uphill battle. School has done a good job of substituting high-fives for hugs and has gone a long way to help educate her peers as well so that the boundaries are firmer.

In a similar vein, Alice and I have our own "secret handshake" for accomplishments. It goes: high-five, knuckles, elbows (see above), shoulders.

It's goofy, but I like it for that very same reason.

Shhh...don't tell.

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Having a Child with Down Syndrome, Part CXVII: Hidden Figures

This is one of those times when I'm not sure where to put this. Should this go here or should it go on my technical blog? I made a choice to keep them separate because I figured that people who came looking for special needs information would likely have no interest in software issues and those interested in my meanderings on software and programming would glaze over at the special needs parenting things.

Yesterday, we went to see Hidden Figures, a historical drama that covered a window of time of three African American women who worked at NASA at a time when a computer was a person who did computations. The three women, Katherine Johnson/Gobel, Dorothy Vaughan and Mary Jackson, all took different steps to success within NASA, each encountering race barriers along the way.

I very much wanted to see this movie for the history aspect of people who helped shape the foundations of programming and the software industry, especially by those who aren't in straight white male group that currently predominates (for example, Alan Turing and Grace Hopper). In this way, the movie disappointing. It presented Katherine Johnson/Gobel as knowing analytical geometry, but soft pedaled the math. What I saw being shown as "math in action" was not more than algebra or pre-calculus and I can get that on sight, I'm thinking they skimped. And yes, coding is not the most interesting thing to watch, but rather than a few brief lines about FORTRAN, it would have been nice to see some of the actual process that includes creating and verifying the code to do flight dynamics. Still, beggars can't be choosers and the bigger picture in this movie was how badly people of color were treated in a US with segregation. In the words of Dorothy Vaughan, "I changed what I could, and what I couldn't, I endured."

We went as a family along with a friend of Alice's from school and her mom. Alice sat next to her friend and I don't think she was getting a lot from the movie and was a little bit bored. At one point to add historical detail to the story, there were brief period clips from news interspersed. At one point, I heard Alice say, "Martin Luther King!" and yes, sure enough there he was.

This morning, I asked Alice who he was - what did he do?

Alice straightened up a little bit and said very deliberately, "I have a dream." I gave her a big hug.

And I couldn't be more proud of her and of her school.

I have a dream, too. I have a dream that people will judge my daughter not by their assumptions and her disabilities, but by the size of her heart and her capacity to love. I know that many of her peers in school already do that, and I'm proud of that too, but I'm worried when the president elect of the United States has openly mocked Serge Kovaleski and has nominated Jeff Sessions for attorney general, who among his long list of short-comings, disparaged the value of IDEA on the Senate Floor by saying “We have created a complex system of federal regulations and laws that have created lawsuit after lawsuit, special treatment for certain children, and that are a big factor in accelerating the decline in civility and discipline in classrooms all over America. I say that very sincerely,” (see also this recent Forbes article). He is, of course, wrong, but his words and his opinions are dangerous to the thousands of students with disabilities who deserve a free, appropriate public education.

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Having a Child with Down Syndrome, Part CXVI: Math and Shopping

Alice is not so good at math. She hates doing it to the point of pretending to be unable to do in order to get out of having to try. It's going to seriously limit her ability to be independent. As such we try to focus on practical math. What is it that can learn to do that will help her out on a day to day basis? Once again, enter our friend the grocery store (see here and here).

I've been putting some things on her list for which there are multiple choices and we've been talking about which costs the least. This past weekend, I put "cereal" on her list and Alice picked out Rice Chex (her current favorite), and did this completely on her own:

Yup - that's right. Price comparison. All on her own. I was very proud of her.

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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.

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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.

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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.

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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.

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Having a Child with Down Syndrome, Part CXI: And The Crowd Goes Wild

Alice and I went grocery shopping today, the way that we usually do. Today's list was small so I put a few curve balls on the list including avocado and as an afterthought, I put a 3 next to it.

When we were in the produce section, Alice said, "Whoa! Whoa! Wait, wait! I need to an 'x' on it." "It doesn't need an 'x', Alice." "No an 's'!" and that's what she did:


And this is the first time Alice has corrected grammar in front of me. Awesome. She got an immediate hug and high-5 before I took the picture.

Also, when she got cereal, she went right to the Rice Chex and similar products (which are gluten free) and started looking at one and reading the price, so I had her price check the other two and asked her which was cheapest and she picked the right one. Again, awesome.

I wish this hadn't been buried in a day of perseverating about Christmas and demanding treats, but you take what you can get, and this was a pretty nice consolation.

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