Plinth Blog Special Needs Parenting

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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14Jun/150

And If You Think It’s All Sunshine and Butterflies…

Copyright © 2015 Stephen Hawley, all rights reserved.

How to tell you have a tween in the house:

Alice turns on all the lights in the kitchen and dining room.
Me: Alice, would you please turn out the lights in the kitchen? There's nobody in there and it saves money.
Alice: No.
Me: Alice, there's nobody in the kitchen. Please turn out the lights, it saves money.
Alice: No.
Me: Alice, since there's nobody in the kitchen, don't you think it would be a good idea to turn the lights out?
Alice: Fine.
...
Alice: Butthead.

Timeoutularity ensues.

Later, Alice tries to get me to do an in-app purchase on her iPad.
Alice: Daddy, sign here.
Me: What is it?
Alice: Daddy, sign here.
Me: Nice try, Alice.

Alice fires up the music app, which can't be locked out, right in front of me.
Me: Alice, please give me your iPad. You have an iPad time out.
Alice: NO!
Me: Alice, were you using the music app?
Alice: No.
...
Alice: Yes.
Me: Ok, that's an iPad time out. If you behave nicely, then you'll get it back sooner. If you behave not nicely, then it will take longer.

Alice: Fine. I tell mommy about that. Mommy said, "never, ever do that again!"

E comes down stairs in perfect timing.

Me: E - did you say that Alice should never, ever get an iPad time out?

E: No.

Drama ensues, followed by timeoutularity.

Alice is now up in her room yelling at me that she's going to call the police and, "you're in trouble mister".

On another note, I've also trained her to respond to "Alice, drama?" with "Is this a dagger I see before me?"

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14Jun/150

Having a Child with Down Syndrome, Part LXXVII: Scaffolding

Copyright © 2015 Stephen Hawley, all rights reserved.

When you have a child with cognitive or physical delays, scaffolding is the cornerstone of independence. Some kids you can just metaphorically throw off the dock and they'll swim (or they'll even throw themselves off the dock). Alice can't be thrown off the dock. Instead we use scaffolding. We try to thoughtfully prepare support that allows her to succeed at a task, then gradually tear the support down until she doesn't need it. This has been one of my long-term goals with shopping. Some day, I hope she will be able to shop for groceries all by herself. But rather than assume and leave this to chance, I've built up scaffolding to help her. Alice's main tool for shopping is her clipboard.

027I keep a stack of note cards in my car for making lists for her. This is scaffolding since writing her own lists is far beyond her planning and motor skills. I decided to move some of the big scaffolding out of the way and add in some smaller bits. I did this with technology. I bought an Epson receipt printer (this was a mistake - more on that later) and a Raspberry Pi with a WiFi adapter and set it up as an AirPrint server.

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I chose the Epson printer because it has Linux drivers and and the Raspberry Pi is a Linux machine. Epson, however, provides only x86 or x64 CUPS drivers laptop/desktop machines and the Pi uses an ARM, so I needed source code, which Epson also does not provide, nor did they respond to my inquiry with anything more than a polite "sucks to be you". Fortunately, I guess, this type of task overlaps very heavily with my professional skills so I spent the equivalent of three work days worth of evenings and weekends writing my own CUPS driver, which is here if you want it.

First, I write out a list for her. Wait a minute! Don't I already do that? Yes, that hasn't changed. Yet.

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Then Alice transcribes it into her iPad:

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And then she prints it

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And puts it into her clipboard, ready to go shopping.

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Why is she using a clipboard? Why not just bring her iPad with you? Because when (not if) Alice drops the iPad from the shopping cart, or leaves it behind, or it gets stolen, we are out the cost of an iPad and replacement iPads aren't as cheap as the printer. I could have used our inkjet printer, but that printer is usually out of ink and I have little incentive to replace it as my son has been dedicated to his hobby of printing us out of house and home. Since this only prints in black and white and in narrow little strips, there is little incentive for wasting media.

Meantime, Alice really likes the process and was very happy to have succeeded at it.

It's interesting to note that as Alice is typing, she is chunking. I noted that she naturally grouped double letters, but she also chunked the final 'se' in 'cheese', so it's not just doubles. Neat!

 

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