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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27Jul/150

Hey, Good Samaritan, You’re Awesome!

I went out for a training run today, but I had gotten caught up in work things and ended up going out around noon instead of 10:00AM. This was a problem as it was 15 degrees hotter when I went out instead of when I intended to go out and I hadn't drunk enough water. I had done my first 2 2/3 miles and had turned around to head back taking a walk break. I was already tired and my mouth was dry. A biker who had passed me a few minutes ago was stopped up ahead and offered me a bottle of water. I must have looked that bad. I took a hearty swig and said thank you, returning the bottle. He said, "no, go ahead and keep it." I said that I was picking up to a run again soon and that I couldn't carry it. He asked me where I was headed and we agreed on a spot towards the end where I could pick it up.

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And yes, there was ice in it too.

Thank you anonymous, thoughtful Samaritan!

It's just 20 days until the 2105 Falmouth Road Race. Hopefully it won't be this hot on race day.

Remember to donate to the MDSC who I'm representing, if you haven't!

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21Jul/152

Having a Child with Down syndrome, Part LXXXII: Musical Adaptation

Copyright © 2015 Stephen Hawley, all rights reserved.

Alice is looking forward to middle school. Very much so. It helps that summer school for her is in the town's middle school, so she's getting a taste for it a little early.

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In prep for middle school, the elementary school highlighted the availability of the band program to middle schoolers. I asked Alice if she wanted to do this and she said yes, very enthusiastically. I asked her what instrument she would like to play and she said, "French horn! It goes toot, toot, toot!" When she said that, I relaxed a lot. Alice is not just left-handed, her right hand has very little fine motor control and barest gross motor control. This is all left over from the stroke she suffered when she was born. There are precious few instruments that can be played under these conditions: left hand for the fine work and a little support from the right. French horn is one of the very few. Trombone can be played by flipping the slide over, but Alice would need something like a P-Bone to cut the weight, but even then the slide will be too long for her and would need a stick or a trombone with a folded slide. Trumpet can be played left handed, but Alice would need a stand to hold it for her. There are some adapted woodwinds, but they're all custom.

Alice's speech therapist expressed some concern about Alice being able to make a buzz to play. I have already had her buzz on a trumpet mouthpiece, so I know the ability is there. I spoke to the band director and listened to her suggestions and concerns. She is fantastic and is looking forward to helping Alice to meet her abilities. When I left, the biggest question was whether or not Alice could handle playing a full-size horn. I found that there are two common sizes which are more or less the same size - single and double. There are also two uncommon sizes: piccolo and 3/4 (or compact or kinder).

Since I have played trumpet for (eep!) 29 years and love the smaller-sized horns, I have a fair amount of experience with what happens when you try to shrink a brass instrument. All brass instruments are an exercise in compromise and as the horn gets smaller in size or in bore (the diameter of the tubing), the instrument gets harder to play and harder to play in tune. I contacted friends I know who play French horn to find out if they have had experience with either. Nobody had.

The local band instrument store did an open house at the middle school which was for signing up for rentals. I asked one of the reps (daughter of the owners) questions that stumped her, but it opened a dialog. I asked them if they had or could get their hands on either of these horns so we could try them out. To their credit, they said they'd have a look. As it turns out, they did. They had a Besson 602 hidden in their stockroom and we set up an appointment for Alice to come down with me and try them out. I tried them out too.

Here's Alice with the Besson:

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Her fingers aren't on the keys, but they will fit and there is an adjustable pinky hook which makes for a good grip. Alice can hold this on her own and needs very little help (although we're going to have to work on care). The fit is about as good as you could hope for.

I tried it out. It's, frankly, a terrible instrument. Student instruments are the product of cost-cutting and this is no exception. The tone center is bad and the intonation is laughable. It might get better with some slide adjustments. Maybe.

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This is Alice with a Yamaha single horn. Her fingers barely span the keys and there's no way her pinky will reach the hook. Without a stand to support it on the side, there will be no way for her to hold this instrument independently and have a solid embouchure.

Given a barely playable instrument and an unplayable instrument, the choice is clear.

So we rented both of them.

Wait.

What?

Yes. Alice is going to learn to play on the 3/4 horn and I'm going to learn the single horn side by side. Horn is not a huge stretch for me. For the most part, I'm going to be the parent who sits down with her and works a little bit on technique at home.

I don't have high expectations that Alice will be a French horn player. I do expect that she will get the experience of playing a French horn and will grow from that experience. Then again, if you asked me when she started ballet if she would stick with it as long as she has (it's been 6 years now), I would have laughed.

The moral here is: understand your options, tap into expertise, talk to people who have a different view, be open to be surprised.

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16Jul/151

Having a Child with Down Syndrome, Part LXXXI: More Sibling Relationships

Copyright © 2015 Stephen Hawley, all rights reserved.

Stuart and Alice have a simultaneously typical and atypical sibling relationship. They go through phases where they love each other to pieces (requited or not) and phases where they bug the bejezus out of each other (again, requited or not). This is completely expected and completely typical. Yes, we have to intervene and sorry Stuart, sometimes we have to favor your sister, but we try to be fair and when possible we try to be an advocate for her rather than taking her side. A lot of that is translating her words into her intent and ensuring that it is heard. Other times we have to be heavy handed and send one or both of you to the locker room because you took it too far.

IMG_20150716_130345This morning, the kids were getting along pretty well and we were sitting on the stoop waiting for the bus to take Alice to summer school. Stuart insisted on being outside and he was particularly enjoying the time with us. Then there was this from Stuart:

It's different to be Alice's brother because she's weird. You know, because she has Down syndrome.

Now in this case I understand that he's expressing his frustration. He's done this before - there were times when he just wanted to run around the back yard and play tag, something that Alice could never really do to his satisfaction. Playing tag with Alice is a one-sided game. This pattern has and will continue to repeat, adding to his frustration. I was going to jump in and smooth this over a bit, but Alice beat me to it.

Not weird, Stuart. It's perfect.

And with these five simple words, I knew that Alice had just taken a big step into the world of self-advocacy. She heard what he said, digested it and responded in a very factual, calm way. There was no anger, no spite, no apparent hurt, just a clear statement of who she thought she was.

Stuart took the response in stride - no bickering (yay!), and went on to talk to her and me about daddy long legs (aka, harvestmen), which are arachnids, but not spiders. They fall into their own category, Opiliones. The picture above was taken while Stuart was very patiently trying to help Alice pronounce 'Opiliones'.

I'm proud of both my kids.

 

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13Jul/150

Having a Child with Down Syndrome, Part LXXX: This Is New Ground

Copyright © 2015 Stephen Hawley, all rights reserved.

To be honest, parenting is all new ground. A child is born and like so many parents before and after, you discover that the owner's manual doesn't apply or doesn't exist. For me, we're entering new ground. I grew up in a family of three boys of various degrees of cluelessness in terms of girls. I don't think I had any serious crushes until I was in maybe 6th grade, maybe? I have recollections of a girl in my homeroom that I had a small crush on, but nothing substantial really. The first serious (and unrequited) crush was in 8th grade. For the most part, I had no idea how to really talk to girls and it was rough.

Alice has several crushes. Several serious crushes. I knew about these in the past year because she when she talked about her classmates, and usually it was just a rote list of friends, when she got to the names of several boys, she would get stars in her eyes and sigh, "Ohhh, Pablo" or "Ohhh, Henry." We, of course, communicated this to her teachers to make sure that they knew what was going on.

Today we went swimming and Henry was there. Alice saw him and was calling out to him constantly. She finally got his attention and had a brief conversation. Thankfully, Henry is without a clue. Of course, this is a signal for Alice to persevere. She watched him intently as he jumped off the diving board, called out to him, kept trying to get him close to her. It got to the point where we had to intervene several times in order to try to get her to back down. This situation was a serious impedence mismatch between the two and was starting to become a public issue. We had to move Alice away. When E tried this, Alice slugged her. And that lead to some time-out-ularity when we got home. Alice was clearly angry and it just got worse as she bickered with us about her behavior. "I need Henry."

I don't honestly know what the right approach is on this one. New territory. We're trying to stress that this is not how boys and girls talk to each other. Probably, the right thing to do is figure out a way to present how we do talk to someone we like a lot and how to keep it simple and not overbearing. It's challenging because Alice is very quick to perseverate over little things. What do we do about something so serious as a boy?

On other news, Alice was invited to two birthday parties on Saturday. One was a much younger neighbor and Alice was decidedly not acting her age when I came to pick her up and take her to the other party which was with one of her classmates. I was a little worried about how that would go, but as I have mentioned before, her classmates are terrific kids and treat her very well.

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When Alice arrived, her friends greeted her very well and engaged her at her level. When her friend Sam was opening presents, Alice was very excited and encouraging. Of course, right here Alice is staring at Abel, one of the few boys at the party. Ohhh, Abel.

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6Jul/150

Having a Child with Down Syndrome, Part LXXVIV: Every Day is Not a Step Forward

Copyright © 2015 Stephen Hawley, all rights reserved.

Alice has not had the best of weeks. She has decidedly moved backwards in toileting and we think that it has a to do with her being in "Elbow Camp". Elbow camp is a 3 week program that we have been doing for many years wherein Alice and other kids with similar issues spend each day wearing a cast on her good arm and are required to do all kinds of activities with her stroke-affected hand. This year, we think that Alice has been depending on other people to do the clean up after toileting and this has carried over to home where she's had a number of "accidents". It's not been pretty and we thought that this issue had been solved years ago.

Every day is not a step forward.

Every day is not a success.

Every day is not sunshine and butterflies.

We do what we can with what we have in front of us and try to position things to get better, but not everything is within our ability to improve.

A bright spot to keep in mind, which is shared with all parents, is that there are a number of words that every child mispronounces. Most we correct.

Some, we don't bother.

Here are two that we don't bother with:

  1. Packpack (backpack)
  2. Armpips (armpits)

We have been struggling with Alice to have a better sense of personal boundaries. We're worried about other people taking advantage of her naivete so we have to be very careful to make sure that she understands that there are body parts that she only shows to parents or her doctor. That list includes:

  1. Boobies
  2. Hoo-hah
  3. Butt
  4. Armpips

We didn't include armpips, Alice did. For some reason, she thinks that armpips are taboo. I think it carries the name nuance as 'bare naked' did when I was a kid, or as we have said in this house, 'nakey butt'.

Moving on, struggling forward.

 

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22Jun/151

Happy Father’s Day

I've been a father for 12 years now and they have been some of the most challenging 12 years of my life. I get compliments from people on my parenting, or more precisely, our parenting, since I'm just one member of a very tired team. Honestly, I don't know what to say other than "thanks?" I mean, I'm dead tired most of the time, run out of patience on a daily basis, make mistakes at least that often, question my choices, and consistently drop plates that I'm trying to desperately keep spinning.

I think that also my difficulty in accepting compliments is that I don't have a basis of comparison other than looking at what my Dad did for me and my brothers. He had quite the set of challenges of his own. Mike was rocketing off into new things like a evangelist-in-training. Pat was a quiet genius feeling pressures from Mike and me. I was the youngest, desperately seeking attention. Dad balanced the three of us and our needs, whether it was Mike in piano or scouting, Pat in computers or all-state chorus, or me with trumpet and soccer.  Of course it was never so simple because we each had so many other interests, some that overlapped and others that didn't.

And of course the endless dad jokes.

And now at this stage in our relationship, my dad is as supportive as ever of all of us and is a terrific listener.

How am I to judge?

If anything, I think I'm not patient enough, too tired, too frustrated, too quick to judge, and too selfish at times (usually from being too tired).

Today I took Alice to Kimball Farm for a father's day event sponsored by Mass D.A.D.S. and organized by Jeff Roback. It was a rainy day, but we still went and I met up with my friend Jeremy, who I had worked with about 16 years ago. We're finally in the same state, we should see each other, right? Alice and I went, Stuart declined, preferring to stay at home with E. Alice loved going on the bumper boats and playing in the arcade. I enjoyed catching up with Jeremy and meeting his family.

And now as the day winds down, all I can think is that if I am a good father, it is because I had a strong model. Thanks, Dad.

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20Jun/150

Having a Child with Down Syndrome, Part LXXVIII: Fifth Grade Graduation

Copyright © 2015 Stephen Hawley, all rights reserved.

Alice had her 5th grade graduation today. In her school district, there is one Junior High School for the entire district, which is fed by four elementary schools after 5th grade, so this is a big transition and they celebrate it.

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The gym filled up quickly with parents and all the kids and the fifth graders processed to Pomp and Circumstance. The principal gave separate speeches to the kids and then to the parents. Then she called each fifth grader up to get their certificates. Parents and kids cheered for each child.

IMG_20150619_093042790_HDRWhen Alice was called, the cheering got louder. A lot louder. Wow.

Alice got her certificate from her teacher and took her place proudly.

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The class sang a song and then marched out.

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On the way out, I thanked her teachers and especially thanked the principal and gave her a big hug. She has built a great school and Alice has a great set of classmates. This is why inclusion is important.

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