Plinth Blog Special Needs Parenting


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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Having a Child with Down Syndrome, Part CX: Call It Sleep

For Thanksgiving, we went to visit family. This involved getting packed Wednesday afternoon and taking off on a 3 hour drive. Both kids were super excited. I set up Alice for bed in her room, which had a TV in it. I made it clear that when she woke up, she could read books or play with her iPad, but no TV. Sure enough, Thursday morning and 5:00, she turns on the TV very loud. I got myself in there real fast and turned it off. "Daddy, but why?" I explained and said she could play with her iPad. I went back to bed. "Daaaadddy! Daaaadddy!" Great. I grab my book and head into her room. "I need you here." Really. I stayed and read while she went back to sleep for a while, but the damage was done to her sleep schedule.

The rest of the day, Alice was not her best (nor was I, but I'm the adult) and I spent most of the Thanksgiving intervening in Alice's habits which all percolated up to the surface: grabbing things impulsively, touching people without their consent, perseverating, and so on. Guh. It was not pleasant.


Friday morning, Alice slept well and when she did get up, she kept herself constructively entertained. Since nobody else was quite ready, I decided to reward her by taking her out to Pie In The Sky, a nice little coffee shop in Wood's Hole. Alice had egg and cheese on gluten-free toast. I had a bagel with smoked salmon and cream cheese. Over and over, I reminded her that she was getting a reward for being nice and considerate and doing the right thing.

This morning, up too early, I caught her getting into something she knew was not OK, so back to bed. A few minutes later, "Daaaddddy! Oh Daaaadddy!" I read her the riot act and she went back to bed and to sleep, but again, the damage was done. Another day of suboptimal behavior. For both of us. So much for the positive reinforcement the day before.

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Having a Child with Down Syndrome, Part CIX: Performance Anxiety

Copyright © 2016 Stephen Hawley, all rights reserved.

I've mentioned this before. Many parents go through anxiety about their child's performance in events. We silently say the parent's prayer:

Dear Lord,

Please let it not be my child who eff's things up.

And if it is my child, please let it be either hilarious or not noticeable.

Your choice.

Alice is active in a local organization of Saints called Whole Children. Whole Children is an organization that was started by moms of kids with disabilities who were looking for programs to enrich the lives of their children, but couldn't find things that were appropriate. Alice is involved with two programs currently: Joyful Chorus and theater. Today was a performance of Joyful Chorus with a local school chorus and joined by Sarah Lee Guthrie and Johnny Irion. Alice had some issues with another young woman in the chorus, but nothing that was out of the ordinary for the group.


Alice is in there. See if you can spot her. I could hear her singing, clear as a bell and she fit in. It was also nice that the church was absolutely packed with people who had come to hear this performance. Both Sarah Lee and Johnny were professional, kind, and looked happy to be backed up by a group with such vigor.

Here is what was in the program:


Welcome to Everyone Has a Voice

Whole Children's Joyful Chorus

In Concert with Sarah Lee Guthrie and Johnny Irion

Thank you for joining us for this exciting afternoon of music and friendship.

This concert started as a dream more than a year ago when a group of Whole Children parents and staff were talking about the idea that the disability rights movement was really the last faction of the civil rights movement. People with intellectual disabilities and autism are often invisible in our society, and their human rights are often overlooked as a result.

As often happens at Whole Children, that observation let to brainstorming. How can change this? How can we change the world, even if it's in just our tiny corner of it here in Pioneer Valley?

We are do fortunate to have Sarah Lee Guthrie and Johnny Irion join us today in out effort to sing out for a country where this land is truly "made for you and me."

Woody Guthrie was a champion for the little guy, the marginalized, and the disenfranchised - giving voice through his music to those who were otherwise silenced. His wit, humor and homespun lyrics keep him relevant and accessible, even today. These values are clearly embodied in the work of Sarah Lee and Johnny and are a fitting match for our chorus.

Thank you for your support of this musical venture. We hope that this concert serves as a reminder that the whole community is stronger and better off when everyone has a voice.

This project is supported in part by an award from the National Endowment for the Arts.

On a personal note, it was good to hear and wonderful to see Alice participating, but at the same time the current state of politics has affected me so much that I found that my inner joy of music has left me. I need to find a way to get that back.

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Having a Child with Down Syndrome, Part CVIII: Even Even More Physical Therapy

The best kind of physical therapy, as I have said before and before and before is the kind the masquerades as something you really want to do, but are in the process are forced to use muscles that you  might not normally want to use because it's work. So when it makes sense, we try to sneak as much of it as we can into Alice's life. Her right side is the stroke affected side and Alice hates to use her right hand. So we do things like put her napkin in her right hand which makes her use it and helps her keep her face clean on her own. Independence.


I put broccoli on Alice's shopping list today and I pulled a plastic bag for her and gave it to her and walked away. Have you ever tried to open one of those bad boys one handed? It's a pain. Alice did it on her own. She held the bag and put in broccoli and was very quick to remind me that she needed a tie for the bag. I gave the bag a spin and put it in her gimpy hand and put a tie in her right and pulled out my phone to take the picture above. There you go. Two hand independence with a modicum of scaffolding. Sneaky physical therapy.

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Well, This Has Been Interesting

I had to have a tooth pulled on Friday. Can't say I enjoyed the process or the aftermath, but I do like the periodontist. In trying to figure out the timeline for getting this done, I had to explain about Alice and that she was in the Nutcracker, which meant that I'm in the Nutcracker. Fortunately, my dancing is not particularly athletic and they want me to take things easy. But in explaining it, I showed him a picture and said that she has Down syndrome. His response, "She does?! Congratulations!" I mention this because this is exactly the response you should have.


I was supposed to be silent for 3 days, which with two kids has been challenging. We all learned ASL, but as it turns out, the order of people who remember the most sign language in our family are:

  1. Me
  2. Alice/Evie (it's close)
  3. Stuart

And there was certainly a gap between 1 and 2, which just made everything frustrating for everyone. I kept notepad apps handy on my phone and tablet and a pen and a stack of note cards. I had to do some shopping so I carried around a card that already had "Can't talk; oral surgery" written on it. That just makes things easier, but the social experiment aspect is hilarious. There was the pharmacist who treated me like I was deaf and used more gestures and fewer words. Several people talked quieter. Others didn't change how they treated me.

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Down Syndrome Awareness Month 2016 – Day 31 – Hallowe’en

Alice lives from holiday to holiday. She has had the major holidays stacked 3 deep since mid September. Hallowe'en was at the head of the list. She has been talking about what she has gone as in the past and what she was going to be this year as well as E and Stuart. Non stop.

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Alice was the Mad Hatter and she had a great time heading out in the neighborhood with E and her brother. I stayed at home and handed out candy.

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