Plinth Blog Special Needs Parenting


Just Dance

I caught Alice playing Just Dance yesterday. Besides being worth a smile, I really liked how closely she was attending to the game. I wish Alice would play it more than she does because it is a visually driven game (people with Down syndrome tend to be visual learners), it is active, and Alice loves dance.

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Having a Child with Down Syndrome, Part LXXXIX: They’re a Different Generation

Copyright © 2015 Stephen Hawley, all rights reserved.

I touched on this briefly, yesterday and in the past: the current raft of kids are very different from when their parents were kids. They have grown up with changes in gay rights and have grown up with inclusion. They've grown up learning to accept and celebrate differences. My generation - not so much. Kids with disabilities, especially cognitive ones, were either taunted or beatified. The teasing was almost certainly because we could either get a reaction or didn't have to worry about them fighting back.

It's weird seeing the generational differences. Today, E and I had a meeting and I was wearing a Bruins sweatshirt that I picked up at an MDSC hockey game. The man we were meeting with asked me if I was a Bruins fan and I explained about Alice. I watched him closely when I said, "Down syndrome" and saw his brow knit in concern and he said, "oh, I'm sorry." And I do not fault him for his reaction. Though he is an educated man, he is as much a product of his own generation as I am of mine.


This is something that Alice brought home from school. It's a project that is being done in class. I don't know any more about it from what you see, but I assume that 7 of her classmates gave her compliments. They could very well have been out of pity, but given this group of kids and how I've seen them act, I doubt that very much.

To quote The Who, "the kids are alright." From my generational perspective, I expect worse. I'm waiting for terrible behavior. I'm waiting for reports from school. I'm waiting for Alice having a horrible day and us left to figure out what happened through forensics. Instead, we consistently get this kind of thing. Part of it is Alice. She is outgoing, trusting, and genuinely likes other people. And her friends get that and reciprocate.

How awesome!

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Not a Huge Update

Alice and I have had a very busy several weeks. We are both in this year's Nutcracker which eats up Saturday, and a good chunk of Sunday is shopping.

This past Sunday we went to the MDSC Hockey game. We've been going for 7 years. Alice really enjoys going and especially likes the free skate that they do beforehand.

Me and Alice in the StandsIn previous years, we've put Alice in a chair from the arena and pushed that, but she's getting too big for that and as the plastic chair gets cold, the legs are prone to breaking. This year, I contacted Amelia Park, a local ice rink that allows people with disabilities to use sled hockey sleds that they have on site. I asked if they would be willing to lend us one for the day and they quite kindly let us borrow one. This is so much better for both of us. Once again, the players we talked to were very kind.   Alice and Bruce CrowderFrank Simonetti asked Alice if he could sign her hat and Alice said yes. Then the other players signed it too. Above is Bruce Crowder adding his name to the brim.

During the free skate there were a number of younger boys who were zipping around at high speed being little hooligans. This is inevitable. More speed than good sense. What was surprising was an older boy named Luke who came up and talked to Alice and asked her questions and listened to her answers. He was polite and patient and, well, nice. We ran into him a few more times later in the day and it was more of the same. You're awesome, Luke.

On a separate note, Alice's go-to phrase for years for when she wants something has been "need help please." This is starting to change and it's charming: "Daddy, can you do me a big favor please?" Wonderful.

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Having a Child with Down Syndrome, Part LXXXVIII, Perseveration

Copyright © 2015 Stephen Hawley, all rights reserved.

Perseveration. Yeah. I don't know if this is a Down syndrome thing or an Alice thing. Alice perseverates on things. It's not always predictable, but when it happens it's endless. You know how your typical kid gets a copy of the most recent Disney/Pixar movie and watches it again and again? You know how you used to like Frozen until you started to swear that if your heard "Let It Go" one more time, blood would flow from your ears? Yeah. That's nothing.


This is Alice on the Monday after Hallowe'en. She immediately focused on Christmas and Thanksgiving. "Thanksgiving is on Thursday?" "Not this Thursday, Alice." "Is on Thursday?" "In more than three weeks, Alice." "Then Christmas?" "That's in December. It's November." "Is Thanksgiving on Thursday?" "No, on this day. (pointing to the calendar) This day is Thursday this week and then you go this many weeks until Thanksgiving." "And then Christmas?"

At this point, E and I have discussions about when we are going to reveal treats. On the one hand, we like to reward the kids and to let them know when something fun is coming up. On the other hand, we don't want to mention something earlier than when we want to hear about it day in and day out from Alice.

Still, I can take advantage of perseveration. The school bus arrives at around 7:15. We need to step back 5 minutes for putting on shoes and coat, and then a loose 5-10 minutes for reward time, then a half hour for self-care, then 20 minutes for breakfast. Than means that Alice needs to get up at 6:00. I go into her room and give her a nudge. "Today is Monday?" "Yes, Alice." "Is school day?" "Yes, Alice." "Is home day?" "No, Alice." Now, I don't know how you get your kids out of bed, but with Alice, I've found that I can stand back and say, "I'm waiting for my morning hug!" and that will get her out of bed.

Patterns. Alice likes consistent patterns with predictability. Alice likes the same things, again and again. Alice is so worried about this that she perseverates and asks the same questions again and again. It's hard to maintain patience and then responses like, "How many times do I have to answer that?" slip out. Oddly enough, Alice has a stock response to that rhetorical question. "FIVE." Slightly more constructively, I can instead try, "Alice, did you ask this question already?" "Yes." "Did I answer it?" "Yes" Then asked and answered."

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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.


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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.

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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.

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Down Syndrome and Text Books

Copyright © 2015 Stephen Hawley, all rights reserved.

Alice has two copies of text books, one for home and one for school. This is a good thing. Some of the texts are as weighty as my college calculus text book, which covered 2 semesters. Now, modern text books are different now than they were, partly due to changes in printing technologies and partly due to a desire to make the books look more appealing to the kids, which is a good reason for the general population, but not so good for Alice.


Well, take a look at this span of pages:


Visually, this is a very busy set of pages and that's a problem if your main way of learning is visual. We know that Alice is a very visual person and is easily distracted by things and that is an issue with this book. So in helping her read, it's important to cover up a lot of the page and let her concentrate on the words instead of the visual chaff. Being adaptable in the moment is a skill that we cultivate.

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Having a Child with Down Syndrome, Part LXXXIV: Glasses

Copyright © 2015 Stephen Hawley, all rights reserved.

Glasses are problematic for people with Down syndrome. Concomitant with Down syndrome are a smaller mid-face, a smaller nose, and no bridge. These are all ingredients for a face that doesn't work well with typical glasses. Considering that low tone affects the muscles that help focus our eyes, we can expect our kids with Down syndrome to need glasses.

Alice's vision is not so bad, but by the end of the day, she definitely needs them for reading. So what do you do? You go to Specs4Us, a company that makes frames that are designed specifically for people with Down syndrome. The company was started by Maria Dellapina, an experienced optician with a daughter with Down syndrome. I'm very happy that the company exists because the glasses they make are perfect on Alice. She thinks so too.


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Another Malapropism, But We Corrected This One

Alice has a number of malapropisms that we don't bother to correct.

Tonight during dinner, Alice added another one: Oprah.

We corrected this one.

"Okra, Alice. oaK-ruh."


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