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.


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.


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.


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.


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.


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.