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Having a Child with Down Syndrome, Part CXXX: Birthdays

We have three birthdays pretty close to each other here, Alice and Evie especially close. For Stuart and Alice, we try to let them have completely separate "friend" parties. In other words, Stuart has his party with his friends and Alice is nowhere to be found and vice versa. We also try to have a bigger party for one and a lesser party for the other and alternate years. Stuart, I think gets this. I don't think Alice does, but from her point of view, it's still a party. This year was Alice's small party and we asked her to pick 3 friends for a trip to Herell's for ice cream.

She picked three friends and two were able to make it for the party: Luna and Jaq, and Alice was super happy that they both could make it. It was busy downtown with the March for Our lives protests, but that's a very small price to pay for living in a liberal, politically active area.

Luna was very happy to be there and had a special present for Alice, which was a friendship necklace. Alice got one half of the necklace and Luna had the other. Luna was so excited and sneaky - she had her necklace hidden under her bandana and so badly wanted to show it, but waited for Alice to open her present first.

It was very sweet and I was very close to crying.

I'm glad that Alice picked these friends. It was nice that they came out for her.

Earlier in the day we did the shopping and because today was E's birthday, we went to pick out a birthday card for her. For times like this, I try to give Alice a pretty free rein. I pointed her at the 'Birthday for Mom' section and set her loose. She looked over a half dozen or so before settling on one. I had to encourage her to read all the words to make sure that the card was really what she wanted, and then we were all set.

All in all, while it was a very busy day, I think everything worked out very well.

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The Lion and the Beast

There's a local organization called Whole Children that Alice is involved with. It's an organization that provides enrichment programs that are geared with children/young adults with disabilities. Every year they do one program to put on a play, which is usually a mashup between two or more other stories. This year, it was the Lion and the Beast. Alice was cast as Babette, the feather duster. Alice had a great time and nailed all her lines.

And every play every year ends with a dance party, because why not?

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Having a Child with Down Syndrome, Part CXXIX: Lab Work

Alice has Grave's disease which messes with her thyroid. To check to see if the medication she's taking is working, she needs periodic blood tests. Alice doesn't like blood tests and I had to take her. When she got home from school, I immediately ushered her into my car and headed to the hospital and explained what was going on. Alice said, "I'm afraid of needles." I praised her for using her words and told her that she could tell the nurse that too. I also promised her that if she was brave and did a good job we would go to the comic book store and she could pick out a comic book at the local comic book store, Modern Myths. I don't like food as a reward, so a visit to a comic book store seemed like a good alternative.

We got there and checked in. Alice told the nurse she was afraid of needles and the nurse let her know that she would use the smallest needle that she had. That was nice. I was going to ask her to use a butterfly needle, but she was already on it. Nice. She came back with another nurse to help.


This smile didn't last long. The next 15 minutes were spent talking and trying to calm Alice. They had a hard time finding her vein in the right arm and took several stabs before they gave up and switched. Alice addressed each nurse by name and was very assertive. "Hands off, Jenna!" I don't have any pictures of the during or immediately after. I was too busy being dad. Alice needed kind words and reminders to be brave and hugs at the end.

And here we are. Alice picked out a Disney Princess comic book and we went home much happier than we were before.

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Having a Child with Down Syndrome, Part CXXVIII: Looking for Inspiration

Without a doubt, it's difficult to be a parent of a child with disabilities. It's a difficult to be good parent any day, but throw in disabilities and things get so much more complicated and so much harder. Some days are easy and rewarding and some days are...well.

I am not perfect by any means. I make mistakes. I get frustrated. I get angry. I lose hope. At times like that, I reflect and I look for inspiration. Sometimes inspiration comes from Alice herself. Sometimes it comes from seeing her interacting with her friends. Sometimes it comes from seeing other parents. Other times, I look for ways to create inspiration.

Last summer, Alice and I went to a couple comic conventions. I had an ulterior motive in going besides the actual convention. There is typically a section in the convention called "Artists Alley" which is several rows of tables of artists showing off their work. Many of the artists are there to sell their work and many of them offer commission work as well. I decided that I wanted to see if I could arrange a commission from one or more artists.

What I was looking for was a piece that met a theme of "how would a super hero treat Alice or how would Alice treat a super hero". Describing this to artists was difficult in that I found myself choking up. The artists I spoke with were all very patient and kind, but few were willing to take this commission, and I understand. It's scary. It's personal. It's exposed.

One artist I spoke with that day was Tana Ford. I didn't broach a commission, but I liked her work and got her contact information and sent her an email. She seemed willing and excited to approach the idea. We went back and forth about some of the broad ideas and cost and she went to work. She sent me a scan of a pencil sketch and I was in tears. It was spot on. She inked and colored it and sent it off to me.

What does this mean? Mjolnir is the hammer that Thor wields. Only those who are worthy are able to do so. Nobody unworthy can even move it. But Alice can.

I have the work framed and it is on the wall over my desk. I look up at it frequently as a reminder that even on days when Alice is regressing in behavior or even on days when Alice is being stubborn that she is still worthy. Worthy of kindness. Worthy of care. Worthy of patience. Worthy of love. And this piece helps me. Not perfectly. Not absolutely, but it's better than a pat on the back. I hope that I can arrange this with other artists as well.

"Steve", you ask, "do you have any handy tips on how I can do this too?"

Why yes, yes I do.

  1. Be clear about your wants and expectations - communicate to the artist what you want and what you don't want. In my case, I wanted to leave a lot of the specifics intentionally vague, but I tried to communicate my reasoning: I'm not hiring the artist to be micromanaged. In fact, I feel that I'm hiring an artist for their imagination and skill and I don't want to taint that.
  2. When negotiating price, look at the price and try to figure the hourly rate and if you think a skilled artist should be paid more and you can afford it, offer more. Yes, this is opposite of what our capitalistic society promotes, but keep the phrase "starving artist" in your mind.
  3. If the work is being done outside of a convention and the piece needs to be shipped, offer to pay for both packaging and shipping.
  4. Be sure to thank the artist and to say good things about them to others.

I had a wonderful experience with Tana and and I'm grateful that she not only accepted the challenge, but ran with it and I'm grateful to have a reminder and an inspiration when I need it.

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Having a Child with Down Syndrome, Part CXXVII: Contrition

Alice makes lots of mistakes. Who doesn't? Alice is fairly quick to apologize, but her apologies are hollow because they rarely inform her future behavior. This is frustrating for everyone. Inevitably, she gets into some else's belongings, gets handed a punishment and Alice apologizes, but we know that she is just going to do it again because it's her.

Not too long ago, Alice got into something of E's. I honestly don't remember what, but it wasn't hers and therefore not OK. Alice and I had a discussion about it and she seemed to understand that she was going to be in trouble when mom found out, so she grabbed a notebook and some pencils and got to work:

She was, in the moment, honestly sorry for what she did and wanted to make things right. She made a card and put in a lot of effort in the messaging and the penmanship. Did it help? Ehh? Probably not, but as a parent I like to see that she did all this on her own.

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Having a Child with Down Syndrome, Part CXXVI: It Takes a Village to Perform in the Nutcracker

Alice and I returned to the Pioneer Valley Ballet's annual Nutcracker production this year. Alice and I were both cast in the party scene as "Party Adults". This was a new part for her and and a returning part for me. We started rehearsals in October with discussion and questions back and forth with the directors. Should we front load choreography? How many performances should Alice do? Most of these were answered with "let's presume competence and be ready to change if we need to."

On the way to the first rehearsal, Alice was chewing me out the whole way there. You know, like a typical 14 year old. When we arrived, all that went away and she got into the process of learning and the joy of dancing. She was smiling and having the time of her life. Once we changed and got back in the car, she immediately started ripping into me again. And I enjoyed that because I could see that she knew that there was an appropriate context for each behavior and that she loved dancing so much that it was OK to even have to dance with me, such a horrible person.

Rehearsals progressed and Alice refined her dancing and it was clear that she had learned her part, even correcting some other people. If she was confused, she asked appropriate questions.

I knew there was something special here, so I connected with the MDSC and went through the process of putting together a press release about this. I was contacted by Lindsay Kalter from the Boston Herald and talked to her at some length about Alice. The Herald sent out a photographer who showed up for a costumed rehearsal at the theater and took some wonderful pictures.

Ms. Kalter wrote a wonderful article about Alice.

This past Thursday, we had dress rehearsal. Alice was getting anxious about the process and started perseverating about it. She couldn't get her head around the entirety of what was going on and was stuck. I grabbed a piece of paper, sat down with her and wrote out everything that was going to happen, even though it was pretty much that same every day:

  • Thursday
    • Arrive at the theater
    • Put on costume
    • Put on makeup
    • Performance
    • Take off makup
    • Take off costume

She took the schedule to her room and read it to herself several times to make sure it would all work.

The wig was a new thing for her. The standard ballet hairstyle is hair pulled back in a bun. The costumes often involve things attached to it --in this case, a sack of curls. Alice has short hair so a bun is impossible. At home, we slicked back her hair with a product called Gorilla Snot. It's a hair gel that has two great features: it dries super hard and washes out pretty easily. We used this on my son when he decided that he wanted a mohawk several years ago. Turns out to work well for making Alice's short hair into a helmet. E and I were both at a loss for how to put the wig on so we enlisted the expertise of people backstage.

The performances all went well for Alice. We had a couple things that we could have done better, but what show doesn't have those moments? As Alice did more shows (7 in total including the dress rehearsal), she got better and better about stage acting and getting into her role. I had to give her whispered instructions at points as reminders, but all the majors things she did on her own.

Since the performances were all 2 times per day and because Alice and I were in the first act early, I tried to establish a rhythm following our schedule that would involve leaving the theater between shows. When Alice gets bored, she starts getting into anything that looks interesting and that is usually not hers. This is not cool. The first show had a funny schedule, so it would have been hard to leave, so instead we stayed. I sat Alice down and let her burn the battery in my phone looking at all my pictures. She still got into something in the dressing room later because I let her stay in there too long after the second show. My bad. I made a simple change. I made it clear to Alice that she wasn't staying in the dressing room. Once she did her job, she needed to come out. I also repeated the instructions to her so that every responsible adult in earshot knew that was the expectation and they could help her meet that goal. The timing worked out well. In the time it took her to put on her costume, I could get most of mine on and then we could sit down for makeup together. In the time it took to get her wig on, I could get the rest of my costume together. That left us with a 10-15 minute window for surprises. For example, on the last show, she got poked with a hairpin when her wig went on and tears followed. That's manageable, but it took time to settle her back down. Before each show, we went up to the stage and looked around and then I put on our lipstick. Every time we stepped off stage, a high five and a compliment from me and a lot of unsolicited support from the other kids in the production and parents.

On the last performance, we did our show and while Alice was getting her things together, I jogged upstairs and found one of the directors in the wings. She complimented Alice and I told her how proud I was of her work. I gave her a thank you card signed by Alice and me and a hug. As we parted, she said "we'll see you next year." Yes. I think you will.

E, my son, my folks, my brother (who took the better production photos here) and his wife, and E's mom and a family friend were all in the audience for the Saturday show. It was wonderful for the support and for Alice to be able to share something she really loves and is meaningful to her. It was so heartwarming to get stopped by people downtown when we were between shows to be told how much they liked it (Alice is known by so many people in town, it's astonishing). The backstage help was priceless, between makeup and costuming and wig.

On top of that, there was the whole rest of the production that went on without us.

I do not consider myself a dancer or an actor, nor do I have a great deal of experience with ballet, but from the participation in this show, I have a much greater appreciation for what goes into the show and how much hard work the PVB does to make a quality production.

I will always be grateful for PVB's efforts to include Alice in a significant way in this production.

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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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