Plinth Blog Special Needs Parenting

20Aug/150

Various and Sundry

Copyright © 2015 Stephen Hawley, all rights reserved.

hello

 

I had a doctor's appointment today and I had to take Alice with me. On the way into the office, Alice was reading everything. This is great - she's seeing her environment and taking in meaning and context.

We sat in the waiting room and I got called by one of my favorite nurses and when she lead us to the scale, Alice looked at her and said, "oh, hi Liz! My name is Alice!"

Whhhhuuuuh?

The nurse, Liz, had a tablet computer with a sticker on the back with her name on it. Alice spotted that and put 2 and 2 together. It kind of reminded me of the way that Jeff Daniels' character in the movie Something Wild liked to address waitstaff by the name on the name tag.


 

Tonight I went to community band with a French horn to try it out.

I've played trumpet for 38 years and have had the luck of having played the following brass instruments for a decent amount of time each: trumpet, tuba, baritone, cornet, piccolo trumpet, flugelhorn, Eb trumpet, and trombone. I hadn't really played much French horn until tonight. Interesting. If you've not played brass instruments before, it's difficult to describe how they're different. In fact, I would venture to say that many trumpet players don't get it right when switching around between flugelhorn and cornet which are in the same key and have the same range as a trumpet.

The metaphor I think that works best here is that playing trumpet is like doing calligraphy with a moderately stiff nibbed pen.

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You expect a certain range of responses from a certain range of pressures and the results are very predictable.

This is not what French horn is like. French horn is like a Japanese calligraphy brush. It functions very much the same way as a calligraphy pen in broad terms, but you can't treat it that way - or if you do what you get is not at all in character for the instrument. From my point of view, there was a required subtlety in control to keep notes from jumping. Certain things I routinely do on a trumpet just didn't work the same way on a horn. I have learned to naturally bend notes up or down with my lip to get notes better in tune. Can't do that in the same way on a horn. Interesting.

Why am I doing this? My intent is to sit down with Alice two or three evenings a week for 10 minutes and work on some basic playing technique with her to get her comfortable with the instrument and see how she takes to it and to help support what is being done in school. What better way to understand the experience than to do it myself.

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16Aug/151

2015 Falmouth Road Race Wrap Up

Copyright © 2015 Stephen Hawley, all rights reserved.

The 2015 Falmouth Road Race is over. I finished, albeit slowly. It was a hot day on the course and even though I drank a half gallon of water and wore a hat, I was still feeling not right at the finish, so I went straight to the medical tent to get looked at - I had a 102.7° fever. They plopped a towel that had been soaked in ice water on me and inside of 15 minutes, my temp dropped to 97°. I drank a bottle of Gatorade and felt much better.

For all you who supported me with donations and all you who supported me with advice (and Ken, who walked the last two miles with me), thank you so very much.

I was nearly the top fund raiser. Nearly because Saturday morning, I was on top, but the number two passed me by before noon. And that's OK, because the MDSC is the real winner here. 26 runners raised about $38,000 for Down syndrome awareness. As a privilege, I was allowed to make a brief speech at the luncheon for the runners the day before and I felt it was fitting that Alice could say a few words too. We sat down together and I transcribed her words about her life. We practiced her speech daily. A few minutes before, it was clear that there was no microphone, so I told her that she should use her outside voice not her inside voice. She did just that and spoke clearly.

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Here is Alice's speech, which is a list of things important to her:

Hi,
My name is Alice.
I'm 12 years old.
I like to read my books and play with my toys.
I like to watch TV and play with my iPad.
I like my friends, Edie, Maeve, Pablo, Riley, and Henry.
I like to dance ballet with Cassie and my friends.
I love my family.

Here is my speech:

Good afternoon! Thank you Maureen for helping to ensure that the MDSC is a fantastic organization. Thank you Jacquie for all your hard work organizing all the details of the road race.

That was my daughter Alice. I'm Steve Hawley. My spouse Evie and I have been involved with the MDSC since Alice was born and this is my third Falmouth Road Race under the MDSC banner. I'm going to talk about the process of preparing for the race and how it's very much like our daily job: raising a child with significant challenges and needs.

I'm an avid runner. I've been running as a hobby for (mumble) 30 years and I have a tremendous love/hate relationship with running. You see, I love running. My body hates running. The previous two races, in spite of my efforts at training and preparation, I've been humbled by a distance that was so easy when I was younger. It's hard coming to terms with this and every year I've modified my plans, steeled my resolve and still not quite made it. In my frustration, I've taken to calling this race “my seven mile coping strategy.”

It's hard when you're peeking up the skirts of 50, have damaged circulation and achy joints. I'm not looking for pity – I'm setting the stage.

Thank you to my loving wife Evie, who knitted me a Deadpool hat for winter training. I learned that I can go out in temperatures down to 24 degrees and stay comfortable, even though I come back with ice in my mustache. And thank you to my son Stuart, who waited patiently for me on days when I was a stay at home dad, but had to train.

Unfortunately, my body refused to cooperate. This year I had a knee injury, a back injury, and I experienced the frustration of over training. Every time I went out, I kept thinking “why am I doing this? Why am I working so hard when I'm suffering and failing so much? Couldn't I just collect the donations and call it good?” But that's not me. That's not who I am.

Let me stop here and tell you a brief story.

I'm going to talk about an interaction I observed with my kids one day while waiting for the school bus. Now Stuart, I'm going to let you know that you may feel embarrassed by this, and that's OK – I think that everything that you said was honest, thoughtful and polite and I would never fault you for that and I love you more than you know.

My kids have both a very typical relationship. There are times when they get along great and times when they grate against each other, but because of their respective challenges, it can be frustrating for everyone. On this morning, Stuart said to me, “Dad, it's different to be Alice's brother because she's weird. You know, because she has Down syndrome.” At this point, I was running a number of responses through my head trying to pick the most appropriate thing to say. Alice beat me to it. She said, “Not weird, Stuart. It's perfect..” At this point, I knew that Alice had just taken her very first step into self-advocacy and she had done it completely on her own. I never imagined that she would take this big step so soon.

As all of you know, Down syndrome is a staircase condition. If 100 people all fell down the same set of stairs, you would have 100 different injuries with a lot of commonality. When Alice was born, she had a stroke. A blood clot had broken free from the placenta, went through her atrial septal defect (that should sound familiar to about half of you) and lodged in the frontal and parietal lobes and her pons. As a result, it took 4 long years and a lot of PT before Alice could walk. If you had asked me on that day if I thought that Alice would ever dance ballet, I probably would have laughed, but 8 years later, she has been in 5 productions of the Nutcracker and at least 3 other productions. In fact, Alice convinced me that the Nutcracker was so much fun that I did it last year too.

So back to the race. I thought to myself, “what is it that we expect of Alice? What do we expect her to do every day? How do we try to set things up so she will succeed?” We expect her to try her best. We try not to expect her to do things that will be a failure out of the gate. We build scaffolding and tear it down over time so she can do things on her own.

And the answer to my own question came to me clearly. Not so much for the 'why' because that's easy. Why run? Because I love to run. No – this is really the harder question: how. How do I do this? Do your best. Don't exceed your limits. Set goals that your body can handle and follow through with them.

My first Falmouth Road Race in 2012 featured Frank Shorter, a hero of mine, welcoming everyone at the starting line. I recall him saying, “I'm running the race today too and a lot of you are going to pass me. Promise to tell me that I'm looking good.”

Tomorrow, a little past the 3 mile mark, just where Oyster Pond road meets Surf Drive, you'll see my family out cheering for the runners. If you stop, I'm sure Alice will be happy to give you a high five. I know I'm going to get one.

I'm going to ask the same thing as Frank Shorter. I'm going to finish tomorrow. Certainly in the bottom 5%, which means that most of you are going to finish well ahead of me. If you see me, don't tell me that I look tired or worn out. Don't tell me that I'm looking good. Instead, tell me that's it's perfect.

Again, thank you for supporting me.

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3Aug/150

Having a Child with Down Syndrome, Part LXXXIII: Dance Like Nobody’s Watching

Copyright © 2015 Stephen Hawley, all rights reserved.

On the way back from visiting with my in-laws, we stopped on the road for a late lunch at a place with gluten free options (by the way, if you're on the road and have a family member with Celiac disease, the Gluten Free Registry is a tremendous help). They were either short-staffed or someone in the kitchen was out in the weeds because our meal was taking a very long time to prepare. At one point, Alice was bored and kept trying to figure out how to get the attention of the people next to us. Rather than having to keep stopping her, which will just end with at least one of us angry, I heard that the music on the sound track had a good beat, so I turned to her and said, "hey Alice, let's dance!" and we did some serious booth dancing - anything you can do with your arms and upper body with lots of White Man's Overbite on my part.

wmo

 

Artist's Conception of My "Dancing"

When the song wound down, I saw that some people across the restaurant spotted us and were quite entertained. They all gave us enthusiastic thumbs up, which Alice and I both returned.

So yeah, dance like nobody's watching.

At least until you notice that someone's watching.

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