Plinth Blog Special Needs Parenting


Having a Child with Down Syndrome, Part CXXXV: Independence

We so very much want Alice to be independent. The problem with that is that her judgement is often not so good. The funny thing about all our work for independence is that the fruits of it pop up in the oddest ways. To wit:

This is today's entry on the calendar we have on the fridge. Alice wrote in, "ELLA ME TO THEATER". At least, I think that's what she wrote. It was a good idea. It didn't happen, but it was still a good idea.

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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.

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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.

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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.

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Having a Child with Down Syndrome, Part CXXXII: Dentistry

Shortly after Alice was born, I made a beeline to a bookstore to stock up on books about Down syndrome. The internet was still in relative infancy and there were not a lot of reliable resources to look into. Books were and still are a fine resource. In the future I will probably put together a whole article about that, but today is not that day. One of the better books had a whole section on health issues and included this phrase about teeth: "may come in late and in unusual order."

For Alice, this was absolutely the case. Her teeth came in way late and didn't start with the usual top and bottom front two. It has also carried through. At 14, in her most recent trip to the dentist we were told, "we'll make an appointment for pulling and if they come out before then you can cancel the appointment." Keeping in mind that Alice had had 8 previous baby teeth pulled, I felt it prudent to keep the appointment no matter what. Alice did lose two teeth in the intervening time, but it wasn't clear that these were the ones.

This morning, I took her in. In the car, Alice said, "hard tools". OK - that's a weird phrase. "which hard tools, Alice?" "the dentist." "What about the dentist's hard tools?" "Daddy, I'm scared of the dentist's hard tools."

For Alice, this is astounding. She has a wheelhouse of topics which include, movies, tv shows, friends, ballet performances and so on. This was so far out of that conversational comfort zone, that I knew it was important to honor it. So how do you handle this? Simple, like any other kid. You acknowledge the fear and then put it into a tangible realistic context for them. "Oh, I see! You're scared of the dentist's tools. You're right - sometimes the tools can hurt, but you know the dentist and you know that she likes you very much and doesn't want to see you hurt, so she's going to be so careful with you, OK?" "OK, daddy. I do that." That reply doesn't make sense on its own, but in Alice speak it's an acknowledgement and in internalization of what you said.

So when Alice was getting prepped, I let the hygienist know what was going on and I repeated it for the dentist as well. The dentist came in and looked Alice over and found that she had lost the two teeth that she was worried about, so she took a moment to gently poke around and found that there are 5 other teeth that are on their way, but no worries - we'll just check them at the next appointment. Alice was very happy.

I dropped her off at school and just before, I asked her if she wanted to go in on her own or have me go in with her. "On my own. I'm fine, daddy."

And you know what? She was. She got out, put on her back pack and walked to the front door on her own, which is fantastic.

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A Little Light on a Gloomy Day

I've held onto this for a while, mostly because there isn't any great depth to it, but it seemed that today could use a little bright spot.

Alice brought home a puppet that she had made in school. There was no context to it from school, so I assume that she had made it as part of a social studies project. Alice was playing with it and quietly singing to herself. If you've spent any amount of time around someone with Down syndrome, you've noted that their speech is not always clear. Even as parents with keen ears, E & I probably have 2 moments a week of not being able to understand at all what she's trying to say. Sometimes it's important, other times not so much.

As she played with the puppet, I heard her singing this over and over:

Now watch me whip

Now watch me nae nae

This is from a song by Silentó that apparently Alice knew. I had no idea. I didn't say anything. I just enjoyed the moment.

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

I've done a lot of blog entries here on cooking with Alice. This shouldn't be surprising. In the hierarchy of needs, food is pretty high up so true independence will involve being able to cook for herself. Although I'm not confident that Alice will get there, we do try to set things up for her so she get more and more experience doing things. Last Wednesday, we had to do an afternoon shuffle where I had to take a little time off of work to be with her. I decided that we would make dinner together. I had Alice get out the cookbook we needed and I directed her to the page. She turned to it (eventually, but hey - number literacy!) and I let her read the recipe: Apricot Chicken Wings. "What do we need?" Alice read the ingredients for me and I took them out. Then I set up a quick mis-en-place (organization will set you free!). Alice had an exercise in patience while I cut up the wings, but I can do that pretty quickly so no big deal.

Alice did most of the work of making the sauce: reading the recipe and adding the ingredients to a food processor. Alice did a good job. I fried the wings, but I'm thinking that next time she can do it. The pan is hot and there are grease spatters, but the biggest worry is really making sure that she doesn't operate the stove on her own. I put the cooked wings into the crock pot, Alice poured in the sauce and turned it on. Mission accomplished.

What makes this work for us is that I already have the recipe in my head so I don't need to read it. Giving Alice the responsibility of reading the recipe does three things. First, it slows her down. Second, it prevents a lot of her impulsive behaviors, because she's busy reading. Finally, it's literacy. All good things.

As a side note, at our last house the original stove was some 30 years old and at one point a part failed and I couldn't get a suitable replacement. While a replacement stove was on order, I dealt with the lack of a stove by buying a slow cooker. For a number of classes of recipes, it is absolutely indispensable. Unfortunately, a lot of typical recipes fall in the category of "3 can casserole" cooking and are just not that good. I found the book "Not Your Mother's Slow Cooker". Not everything is a winner, but most of the recipes like the Apricot Chicken Wings are far better than typical ones. While many are not gluten free, a lot of those adapt naturally.

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Falmouth Road Race Wrap Up

This was my third road race and I think it's going to be my last, but more on that later.

To start, this year you helped me raise nearly $3000 for the MDSC. This is a fantastic thing and I couldn't possibly be happier with the results. I'm especially touched by my co-workers who descended in droves to donate. The entire team of runners for the MDSC raised over $56,000. This is awesome.

Here's what the road race is like for me as an MDSC fund-raiser: E's mom lives in Falmouth, so we go down on the Friday night before. Saturday morning, I head to Falmouth High School to pick up my bib and check out the running trade show. Midday, the MDSC hosts a luncheon for the runners. This is a nice time to touch base with other parents and see what other parents are experiencing. They give the runners their singlets and a nice gift bag. When I picked up mine, I announced to the other runners where they could stop for a high-five from Alice on the route.

On race morning, E takes me to the junior high where they have shuttles to Wood's Hole where the race starts. I bring some food with me and about a half hour before the race, eat as much as I can and drink as much water as I can manage. I hang around the back of the pack because I'm slow until the race starts. I usually cross the start line about 40 minutes after the race has begun. This year, I had a nice chat with a woman who was pretty sure that this was going to be her last FRR since she was 80 now. She barely looked 70. I was very impressed.

I had trained for over a year for this race and got to the point where I was running three of these races per week. This was the best I had done in training and I got wiped out around mile 3. I can't say why other than the first 3 miles are hilly and it was extremely hot and I couldn't cool down. I walked the rest feeling very nauseous and dizzy. One of the reasons why I love this race is that in the last mile, there are tons of people who are done with the race who saw me and said, "You got this, Steve!" I heard that a lot and it helped. I struggled my way to the finish at a slow jog and then went straight to the medical tent. They put me in a wheelchair and took me to a pad on the ground where they took my temperature, which was 102.8F. This is not so good. They helped me to a cot then covered me with towels that had been dunked in ice water until my temperature came down. On the good side, the doctors didn't put me in an ice bath (and yes they had those set up). On the good side, I wasn't running a 108F fever like the woman who ended up heading to the hospital after an ice bath. I chugged a quart of gatorade and a pint of water and when my temperature and BP were stable, they let me go with a new, dry shirt. I walked 3/4 mile to a nearby store, called E and waited for her to take me back to her mom's house.

I had time to think about this. I finished about 10 minutes slower than my training pace. I felt like crap for 4 miles and for the second time I finished the race in the medical tent. The conclusion is simple - much as I love running, this race is just too dangerous for me. I have a family that depends on me and it is in everyone's best interests to make sure that I stay in good health. This means that I keep running for sure, but just not this race. Two trips to the medical tent is enough for me. I can and will find other ways to help the MDSC that aren't so risky to me and my family.

If you donated, thank you very much - you're the bomb!

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Having a Child with Down Syndrome, Part CXXX: Comic Con Success

One day recently when I was in my local Comic Book Store, Modern Myths, I saw a flyer for Boston Comic Con. I knew that E and Stuart would be out of town on that week, but I thought it might be a good end of week event for Alice and me. I bought tickets and started to make plans for how to best manage this with Alice. There's a lot to unpack here, so bear with me.

First, if you're looking for how to do this with your child with disabilities, then your best guide is is how well you know your child. Alice is a very social child with a deep love of fantasy and movies. She also has only so much stamina and can get easily overwhelmed from excess stimuli and can have difficulty overriding her desire to touch things and people. A week before the con, I talked to her about what we were going to do and when and what we would see there. A day before, I reminded her of it and we talked about what we would be likely to see: artists, their pictures, people in costumes, sessions and so on. We talked about how it was OK to look, but if we wanted to take pictures we had to ask. We practiced a simple script for asking politely. We talked about not walking off. We talked about listening. We talked about using words. We talked about that the event was going to be crowded and noisy.

The next morning, we got up and had breakfast and got ready to go. First parenting trick, I took from E, have sharpie, will travel:

I wrote my phone number on her arm just in case we got separated. Next, packing. Con food can be problematic and expensive, so I packed a snack, a bottle of water, and some gluten-free hamburger buns. Alice decided that she wanted to bring some magazines with her in the car, so she grabbed a stack and we headed off. In the car, we reiterated the talk we had the night before. Alice remembered a lot of it.

When we got there, we talked about lines and waiting, and patience. We looked at the schedule and talked about what we would do. I wanted to meet with some of the artists, Alice wanted to go to a cosplay makeup session, and we had a photo op scheduled around midday. I titrated the snacks into Alice so she would make it after the photo op and we enjoyed seeing all the people in costumes.

Alice was terrific. She told me when she wanted to look at something or someone in costume. When she wanted a picture, she asked and the cosplayers were very kind in that regard. Most of them were very taken with her like Aquaman:

He gave her his trident to hold. And then there was Thor:

This man was huge - probably 6'5" and we took a couple pictures and when I suggested that Alice might be worthy to wield Mjolnir, he acted completely surprised that she was.

We scheduled down time. We went to some sessions about makeup and cosplay body image. Alice listened, but probably didn't get much out of them other than the opportunity to be in a much quieter room and to sit for a while and quite honestly, that's not nothing.

We also did a meet and greet with Felicia Day. I explained what would happen. I showed Alice pictures of her. Alice said, "She's so pretty and she's smart and she likes to wear costumes."  Felicia Day, who is an actress, runs Geek and Sundry, which is an online presence for entertainment productions for and by geeks. One thing that stands out in her organization is the large number of women in prominent roles. While I'm sure I don't know all the detail, what I see is someone who actively opens doors for women who are more likely than not to have had doors shut. This is a great thing.

When it was our turn, Alice ran in and went for a hug. I stepped to the other side of her and expressed my thanks and the reasoning that when she opens doors for other women, she is likely indirectly opening doors for people like Alice. Think about it, if someone creates an opportunity for you where culturally and historically you've had them taken away, wouldn't you be more likely to pass that on? Alice started to bolt off, but Ms. Day said, "Oh my God! That's so nice!" as I was catching up with Alice. As I caught her, I turned around Ms. Day was setting up for the next group, but she caught my eye and we exchanged brief smiles of, I think understanding.

(Mental note, Steve, when you put your arm behind your back it makes your stomach pooch out)

As the day went into afternoon, Alice was clearly tired and I suggested we go. She agreed and we started our long walk back to the car. We stopped for water and looking ahead at the distance (it was about 1/4 mile), I set landmarks for places where we could stop. At one point Alice said, "I need to take a break. I sit down and drink water and enjoy the air." She told me one foot was bothering her, I took off her shoe, orthotic and sock. The sock had bunched up a little bit, but her foot looked pretty good, so I had her put her sock back on and after some water, we moved on.

During the day, I applied near-constant specific praise to Alice: good using words, good big voice, good following directions, and so on. Lots of high-fives and fist bumps. Lots of hugs. I let her pick where we went and what we looked at. I gave her a fair amount of leeway while still setting appropriate bounds.

I don't know your child, but you do. With that knowledge, planning, consideration and understanding you can have a successful trip.

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Having a Child with Down Syndrome, Part CXXIX: Tiered Rewards

This week, E and Stuart are away on a vacation visiting the Florida grandparents. We did this because as Alice and Stuart get older, what they want to do and what they can do has become more divergent. In addition, we know that Stuart can often get the short end of the stick because of his sister's disabilities. To address that, some time with his grandparents without his sister will make a difference. Alice and I are together and we needed a way to give Alice some more incentive to be better behaved. I won't say well-behaved because quite honestly, her baseline is pretty good.

These days, Alice very often thinks with her stomach. So for her a big reward is going to a restaurant. So we picked Friday for that as a possible reward. The problem is that you don't want something like that to be a go/no go situation. That makes it high stakes and that ends up being hard on everyone. E has used tiered rewards in the past and that has worked well. I'm doing a variant on that. I made a set of cards for Alice, each acting as a rubric for the day:

Her 6 goals per day are:

  1. Not yours? No touch.
  2. No baby TV
  3. Shower - no playing
  4. No bickering
  5. No sneaking
  6. Follow directions

Now, I don't really like this list. Typically you want these goals to be written in the positive not a negative, but I was tired and Alice is OK with it. Most of these goals are a challenge for her, but she's capable of all of them. No sneaking sounds odd, but it's not. It means no sneaking food and no sneaking downstairs to watch TV. I've tiered it so that she needs to get at least 4 checks on a card. If she does, then I put a check on our menu list. If she gets 4 checks, on Friday she can pick a restaurant and we'll go eat dinner there. If she gets 3 checks, I'll pick the restaurant. If she gets 2 checks, we get take out. If she gets 1 or fewer, just a regular meal at home.

If you do this with your kids, you should expect that either the first day or the second day will be a total bust. I don't know why this is. Maybe on day one, the kids are just acting on novelty and on day two they decide to screw the boundary just to make sure it's really there and then when they see that it's their choice to make things succeed, they turn around.

Day 1 was great. Day 2? Not so much. In fact, Alice botched almost all of them. When we finished the review, and she was very honest about it, she said "It's OK, I do better tomorrow." And honestly, this was one of the most wonderful things she could say. She didn't dwell on not getting the checks, she turned to what she needed to do in the future. A younger Alice would have tried to check the boxes when I wasn't looking.

Of course, she started today by trying to sneak TV while I was showering, but she owned up to it and we went over the rules again. We'll see how it turns out.


Reward earned and enjoyed.

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