Monthly Archives: September 2015

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.

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.


So Yeah, I’m Band Geek

Copyright © 2015 Stephen Hawley, all rights reserved.

When I was in kindergarten, I went to a school that was a couple blocks away. My oldest brother was in 4th grade and often, when he came home he would have one of his friends with him. Late in the school year, he came home with Wayne Arnold, who was starting the band program and had his trumpet with him. He took it out of the case and I marveled at the brilliance of the Olds Ambassador in front of me. I asked him if I could hold it and he let me. It was heavy. I remember that I intentionally didn’t ask if I could play it. I thought that was going too far, but I knew at that moment that I was going to play trumpet.

Music has been a big part of my family. All of us have a certain amount of musical talent, although my mom and my oldest brother (both pianists) got the lion’s share of the talent. I’ve had solid passion for trumpet for most of my life and even though I accepted in college that I didn’t have the ability to be a professional player, I’ve kept at it. I’ve played everything from Baroque to Big band and liked it all. I’ve also found that it is important to make music. If I don’t, I get sick, first emotionally, then it carries over.

It’s been a pleasure to share this in a small degree with Alice. Today we sat down again for another 10 minute practice session and this time I recorded a little bit of it. We started again doing some buzzing exercises:

Then we went on and did some Simon Says for fingering, and finally some honking on the horn:

I’m very happy that she’s getting joy from playing. I get joy from playing and vicarious joy is nearly as potent.

I can’t say exactly what it is about playing music that is so powerful for me. It might be that it’s so intensely personal and emotional. It might be that with an instrument I can actually sing – I’ve hated the sound of my own voice both speaking and singing since I was young. It might be that with an ensemble there can be a richness in harmony that is greater than the sum of the parts and raises goosebumps. I don’t know that Alice will hear a Bach fugue the way I do, but seeing her smiling and laughing and clearly enjoying a shared experience is precious.

French Horn Practicing

Copyright © 2015 Stephen Hawley, all rights reserved.

No pictures today.

Alice and I sat down for some more French horn practicing. I’ve taught other people to play, but this is different. It’s always different when it’s your own child, more so when your child has a disability.

One of the challenges of Down syndrome, which we’ve been hearing about from speech therapists for years is to have and maintain breath support. I can tell you from having Alice yelling at me or her brother that she has breath support. Consistent breath support is vital for playing a brass instrument.

In order to do help Alice learn, we’ve been sitting down for sessions that last no more than 10 minutes. We start by taking the mouthpiece out and doing buzzes. I’m not concerned about what sound she makes as long as it is prolonged and not a short burst. She can do about a second, maybe a little more. Lots of high fives.

Then I have her put the horn together. It’s important to learn how to put it together without getting the mouthpiece stuck. Learning to put the mouthpiece in with a gentle twist will cut down on the number of trips to the music store for an appointment with a bobcat.

Then I let Alice play notes. I help make sure that she has a good embouchure and encourage long notes.

Since we started, Alice is making noises that sound like notes and I’m very proud.

Is This a Carnie Thing?

Copyright © 2015 Stephen Hawley, all rights reserved.

We took the kids to the Tri-County fair today. Apparently, it is the longest running fair in the US, at 198 years.  We’ve been to at least 8 of those, and honestly, I was hoping to give this year a miss. For better or for worse, my son spotted signs and activity on Saturday and we found a block of time to go today.

21202068956_11164781b2_oThis year, we got the kids bracelets for rides and they took advantage of them fully. I think this is the first year that all the rides were fully accessible to both kids. Alice said the roller coaster was her favorite and it shows. E and I didn’t really have to go on many rides with them, which I think is fine by both of us. While the kids were on one ride alone, I said to E, “let’s make this a really scary ride for them” and started kissing her. Adulthood has its privileges.

We were walking past some of the games and Alice, being Alice, started a conversation with one of the carnies running a basketball game and he let Alice play for free. No, ‘let’ is too gentle. He encouraged her to play until she made a shot and gave her a choice of some stuffed animals. Weird. This goes against everything I’ve come to know about fairs: nothing is free. I thanked him, still trying to figure out the hook.

We did our annual ride on the Ferris wheel, which I always like.


As does Alice. When that was done, we went to the area where they had the fun houses and passed a few more games. This time, another carnie spotted Alice and that she was carrying a prize and offered to let her play until she won and he would trade her toy for a larger prize. I’m still confused. I’m writing it off as one of those unexpected nice things that people just do. It reminds me of the time I was in the food court of a mall and a stranger out of nowhere walked up to me and Alice and said, “God bless you for all the hard work you do.”