Plinth Blog Special Needs Parenting

1Jun/160

Having a Child with Down Syndrome, Part C: Even More Sneaky Physical Therapy

Copyright © 2016 Stephen Hawley, all rights reserved.

Wow, 100 in this series. I never thought I would have this much to say, but then again every day is a new day that brings challenges both old and new.

As I've mentioned before, Alice perseverates. It's not just a subject like vacations or camp. A couple months ago, she got a cut on her right arm, one the side just below the shoulder. Alice picked at that scab like you wouldn't believe. So I took a cue from the The Miracle Worker. Every time I spotted Alice without a band aid, I put another one on. I had to start rotating the angle because her skin got sore from tearing them off.

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And one day, I noticed that Alice had put a band aid on herself. This shouldn't have been a surprise. I had bought a bulk box that matches no skin tone on the planet. We also had a collection of "cartoon" band aids in the kid's bathroom. Alice doesn't like the generic ones, she likes the shiny ones. So when I spotted her wearing one, I knew that I had just won. She had to get the band aid out of its wrapper and peel of the backing on her own before applying it.

Yes. Self care and physical/occupational therapy. The best kind of PT and OT is the sneaky kind. It's the kind that the kid wants to do on their own. The kind that takes no nagging and reminders.

And finally that cut it healing.

 

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16May/160

Not Too Much To Say Today

Alice has been, well, Alice this past week. This means a great deal of perseveration and not an apparent amount of listening. Oh well.

A woman in our neighborhood was having a "gender reveal" party this weekend. For Alice, the magic word 'party' meant that we heard about it at least 5 times a day for the entire week. That wears thin pretty quickly. I had the honor of keeping the secret of the gender of the baby until the party. Take it how you will, this is the second time that I've been asked to do this task. People apparently trust me to keep secrets. Maybe it's because I don't find it particularly difficult.

Still, in spiite of the perseveration on the party, there was a nice highlight. Alice wore a pretty dress earlier in the week and I decided to take advantage of the morning light and take a few pictures before the school bus arrived to pick her up.

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I don't always like being faced with the inevitability of her growing up combined with skill deficits, but I couldn't help but smile at the overall package.

 

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8May/161

Having a Child with Down Syndrome, Part XCIX: Mother’s Day

Copyright © 2016 Stephen Hawley, all rights reserved.

I was looking for pictures of my mom and it took me the better part of an hour to track some down. Even so, I have no pictures of her from when I was an adult on because I know that my mom absolutely hated having her picture taken and I respected that.

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Let's start with this on. This was taken in 1983, if I recall correctly, when my brother Mike was all set to graduate from Yale. I think my grandfather took this picture, which explains why the framing includes the Apple II computer so well and so little of Mike. At any rate, my mom is very well framed and this is how she looked when cameras came out. although quite honestly, she suffered from depression for most of her life and she looked like that pretty much all the time. I'm bottom row center looking like the disaffected teen I was trying so hard to be.

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See, there she is sandwiched between my dad's parents and even in a candid photo, she still was a wistful look. Incredible. These are the only couple photos I could find in an hour of searching, so I gave up.

Instead, here's E:

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Parenthood hands you an unlimited supply of interesting challenges and every parent worries, most of which come to nothing.  Being the parents of two children with disabilities of very different natures have provided us with challenges of greater magnitude that have come with worries that have turned out to be very real.

Did I ever tell you about the time that Alice got up at the crack of dawn, put on some rain boots, grabbed an umbrella and went for a walk on her own in her pajamas? One of our neighbors brought her home.

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But even with the challenges, E managed to smile.

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This was at our third Buddy Walk, if I remember correctly - always too late in October, they end up being cold.

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Stuart has added a wide range of joy and frustration, but we've always loved him deeply and always will.

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That's a tired smile, if I've ever seen one. I don't think we'll ever have another full night's sleep and certainly not two nights in a row, but it's a smile.

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No, E's not making a face, she's trying to kiss Stuart. He's having none of that and is taking off her glasses. Both of us have had to have our glasses repaired several times from this kind of abuse.

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But still, E has always done so much to expose both kids to the joys of life, both simple and complex. Yes, I know that Alice doesn't look particularly joyful, but she just went swimming with Evie in Vineyard Sound off of Falmouth.

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I can't white wash it and pretend that every day has been happy and fulfilling, but again, look at those smiles!

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Now this is quintessential. My kids recognize that E is a limited resource and when one gets in her lap, the other reacts immediately because, "ZOMG! SOMEONE'S TAKING ALL OF MOM!" It's part of the reason why E and I haven't been able to hold an uninterrupted dinner conversation in 13 years.

And that look on E's face is why every day on mother's day for the past 5 years, I take both kids to lunch and a movie so she can have some peace for once.

Happy mother's day, E, and to all mother's who have to walk a path less traveled.

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30Apr/160

Some Miscellany

Copyright © 2015 Stephen Hawley, all rights reserved.

For the past week, I was away for a company conference. Of course I brought home goodies for the kids. One of the things I brought home was a little stuffed monkey, which I inferred from our customers is very sought after. I gave one to Alice:

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Here you can see Alice in her new Gryffindor t-shirt, holding her Xamarin monkey. I asked Alice if she named her monkey. Of course she had named her monkey.

"What did you name it, Alice?"

"Boyfriend."

"You named your monkey 'Boyfriend'?"

"Yes."

"Okay."

Getting back in the swing of things, Alice and I went out shopping today and after she was done, she decorated her list:

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Two smiley faces and a "Great Job". That's the mark of a young woman who takes pride in her work. And the fine motor control on the two tiny smiley faces was not lost on me at all.

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19Apr/160

Having a Child with Down Syndrome, Part XCVIII: Department of Redundancy Department

Copyright © 2016 Stephen Hawley, all rights reserved.

It's tiring. Seriously, bone-achingly tiring. This is what it feels like to parent a child with Down syndrome who has a couple other disabilities in the mix.

I know that every parent has a litany of phrases that you have to use endlessly with your kids to hopefully effect a positive change in your behavior:

  • Don't pick your nose.
  • Use a tissue.
  • Put your clothes away.
  • Use a napkin.
  • Shoes off in the house.
  • Close the door.
  • Try harder.

I'm particularly proud of the last one. For both kids, I made a vow to avoid the phrases "what do you say?" and "what's the magic word?" To me, those are both empty rhetorical questions. Of course, I've substituted an empty imperative, but it looks a lot different to the people around us who are used to "what do you say?".

Still, Alice is another ball of wax. The damage to her frontal lobe from the stroke has hurt her ability to self-regulate. This means that anything that looks interesting, she will pick up and mess with, even (or perhaps especially) if she knows that it's not OK. So with Alice, we have:

"Is that yours?"

"No!"

"Then why are you touching it?"

For the longest time, using the bathroom at home was:

  1. Shut the door
  2. Use the toilet
  3. Wipe your butt
  4. Wash your hands

Pick any 2 and it was usually 2 & 3. I think we're much closer to 'Pick any 3', which is an improvement, I guess.

Then we have the dinner time manners with the constant reminders to use a napkin, chew with your mouth closed, chew first; talk later, pull your plate closer to you, push the food to the center of the plate, use a fork. Then we have the parental stink-eye for an unrestrained belch.

Progress is glacial. Guh. And, yes, I know every parent repeats these or similar reminders, but seriously you just have no idea.

And yes, we also try to reward and not just nag. Note the good behavior with heavy compliments. Does it help? How would I know?

On the other hand, we went to Costco last week and a woman in another checkout line struck up a conversation with Alice. Well after it was over, she made the point of getting my attention to compliment on how well-behaved my daughter was. That's an easy thank you.

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13Apr/160

Special Times, Conducting

Copyright © 2016 Stephen Hawley, all rights reserved.

Remember when Alice conducted the middle school band? Yeah, me too.

15 years ago, Priscilla Ross founded the Florence Community Band with the goal of bringing live music to the area. I showed up at the second rehearsal and have been a regular member since then. I love music and making music and have come to accept that regularly making music is important to my mental and emotional health.

One of the good parts about being a member of the band from the beginning is that I know the director and after Alice conducted the middle school band, I teased her, "looks like you're out of a job". And Priscilla was thoughtful enough to make the offer of letting Alice conduct a piece in the 2106 spring concert. I asked Alice, because even though I know that she would likely say yes, I felt it was important for her to have a say in the matter.

At that point, the question was, "how do we make this happen so that it is a success?" It involved me making sure that Alice came to rehearsals and practiced. Priscilla did a great job coaching her and Alice, well, she was in it for the fun. Think about it - she waves a stick and 56 musicians respond. Wow!

She went through a quick dress rehearsal before the performance, and being Alice, she kept trying to angle for going out to a restaurant. No, I don't think so. Not today. Her grandmother, mom and brother were in the audience and were a bit of a distraction to her while she was on the podium, and mid performance, she stopped to turn around and sign "I love you" to them.

Although I feel that she could have done better, I recognize that Alice had a whole lot of fun.

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4Apr/160

Having a Child with Down Syndrome, Part XCVIII: Backstage Dad

Copyright © 2016 Stephen Hawley, all rights reserved.

Another spring means another ballet. Alice was cast in Sleeping Beauty as a Forest Nymph. Usually, the ballet has a parent for every group of younger kids who will help supervise, but Alice's group is fairly push button. Well, except for Alice. E and I agreed that I would be backstage dad so that she and Stuart could watch her perform. This meant that I took her to the theater, ensured that she got her make up on and kept it on, got into costume, helped her up the rickety stairs to the wings and back down again at after her time on stage.

Part of the process of being a parent of any child is being able to reliably predict what your child is likely to do and to have appropriate rewards and consequences for their actions, choosing which battles to fight and which to let slide.

In Alice's case, I knew that impulsivity was going to be a problem and that it would be best to promise a trip to Herrell's ice cream between her two performances today as a reward for good behavior. This also solves another problem of her being cooped up the basement of the theater. When Alice gets bored, she starts getting into things and I wasn't going to willingly put us both through that.

So hooray, her behavior was good and we went to Herrell's for the reward:

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And, of course, because I know my daughter, there is no chocolate in that cup. You'd think chocolate sprinkles or chocolate sauce would make a great addition to this, but for whatever reason, chocolate kicks Alice's salivary glands into overdrive which ends up leaking out the side of her mouth and given that her leotard is white, well you understand.

Waiting for the second performance was harder. I gave Alice a little more rope and she did well up to a point, playing Go Fish with some other girls, but I had to step in when impulsivity took over. I had her sitting next to me on the bombed out couch with a litter of younger girls, which was tantamount to trying to sit on a couch with 5 very large wiggly puppies. They had a lot of energy to spare.

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I don't know how much longer Alice will be doing ballet, but I believe that at present, it is still a very good thing for her.

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27Mar/160

What Does Inclusion Look Like?

Inclusion is in education and in community is not simply being present. It is being allowed to participate to the best of your abilities. It means being able to access things in a meaningful way. It is being appreciated for what you can do and not being made to feel bad about your limitations.

Last night, I went to see Zootopia with Stuart. It is a movie that depicts a culture made up of all kinds of mammals doing their jobs. It's very much like a giant Richard Scarry world.

What's notable is that the culture is built around inclusion.

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This scene that shows a juice shop that has a vertical pneumatic pipe for lifting cups up to giraffe level in addition to a counter.

This is a view of the train which has 3 separate doors for animals of different sizes. Although the small animals could use the full-size door, they have appropriate access to the train.

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Check out the teeny car in a small-sized lane. The driver has access to the road without being at risk from larger vehicles.

And these details are all just that: little bits that are there to give breadth to the world, but are taken totally for granted by the animals in the world, which is how it should be.

Studies have shown that classroom inclusion is beneficial for everyone in the classroom when done well. Unfortunately inclusion isn't always done well and the best predictor for how well inclusion will be implemented is your zip code. If you live in a better neighborhood, the schools will have better inclusion.

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26Mar/160

The Dad Look

Alice and I got back to the car after shopping.

"Alice, would you get in the car please?"

"Seriously?"

I used my +3 stare of You're Pulling This On Me?

Alice muttered very quietly, "he's serious".

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20Mar/160

2016 MDSC Conference Wrap Up

This year, I took Alice with me to the MDSC annual conference in Worcester. Alice hasn't been since she was an infant because the conference doesn't really cater to younger kids, and that's OK. This is the first year that Alice was eligible to attend the teens and adults track and since I think that the MDSC will be playing a larger role in her life in the future, I wanted to get her involved in the conferences as much as possible.

My biggest issue, I think, was that I didn't know what to expect for her nor did I know how to fully prepare her for being with a room full of strangers. Multiple times before we left and before we arrived, I spoke to her in broad terms of what to expect for the day. I knew, even as I was speaking with her, that this was not going to be enough. Maybe I can work with the MDSC to help improve the process for everyone.

At any rate, we checked in - thanks to her experience with ballet, she is an expert at checking in. We walked up to the registration and introduced herself and me to the people working registration and we got my badge. Then we went to the youth table and she checked herself in there too. I brought her to her table, did some introductions and told her that I would be back to check on her later.

Sure enough, just as the first session was ending, Alice saw some parents stopping by and she bolted from the room and I got a call from a volunteer. *sigh* I went to pick her up and we walked around some of the exhibits and I gave her a snack and tried to set her expectations for the next session. I would take her back the junior ballroom (Alice loved that it was a ballroom), and she would be in the next session until lunch and then I would come get her.

Again, as the second session was close to ending (and unfortunately when it was getting to a good part), I got another call. I went over and they had Alice outside the ballroom working the sign-in/sign-out sheet. Fair enough. We walked over to the luncheon and got some great seats.

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The keynote speaker was Tim Harris, who owns Tim's Place. He gave a nice talk about the things he believes are important in life. Alice enjoyed it very much.

After lunch, I took Alice up to meet Tim.

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Alice got a good hug from Tim and I did too because, why not?

After lunch, we walked a bit and Alice signed us up on the mailing list for D.A.D.S. No, really. She picked up the pen and wrote her name and tried to write 'Northampton'. Then she signed me up as 'daddy'.

I gave her the choice of going to the session with me to listen to a bunch of boring medical researchers or going back to the junior ballroom where they were going to have a dance party. Oddly enough, she picked the medical researchers with me. It was indeed horribly boring for her, so I had to employ all means of redirections and distractions until Alice just plain fell asleep on my lap.

A few interesting things that I learned - as an alternative to CPAP, there is an implant which is a hyoglossal nerve stimulator which jiggles your tongue with electricity and makes it protrude, clearing your airway. It's FDA approved for adults and in clinical trials for children. Alice hates her CPAP.

I got some good advance advice about transition planning.

And I heard a very interesting factoid about what is the best predictor of whether or not a child with Down syndrome will be included in a general classroom: zip code. It is wear you live, not your needs or capabilities that determines if you are included. Scary.

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