Plinth Blog Special Needs Parenting

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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8Mar/160

Having a Child with Down Syndrome, Part XCVII: Growth Spurt Maybe?

Copyright © 2016 Stephen Hawley, all rights reserved.

If you have Down syndrome, you are likely not going to be tall. Women average 4'6" and men average 5'2".  Alice is starting to approach that average, and although my family is generally tall, I don't expect her to be a whole lot taller than that.

Still, we're seeing some evidence that she has a bit of a growth spurt on the horizon.

Alice chunked out a bit last year and I've been trying to monitor Alice's food intake and cut it back just a tiny bit. It's been working, she's thinned out a little bit. It's trick with a gluten free diet because most of the so-called substitutes for common staples are about double the calories.

This past weekend, Alice woke up at 4:00 in the morning and Evie found her in front of the TV with a box of popsicles and a pair of scissors to open up the wrapping (and if that isn't pre-planning, I don't know what is). The past couple meals and snacks, Alice has inhaled everything put in front of her and asked for more. Evie and I have been calling it "Alice eating the entire world." Sunday, she had a decent breakfast and we went to a birthday party and I could not believe how much she ate. I couldn't eat that much. This continued today.

Growth spurt. That's what I'm thinking.

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21Feb/162

Having a Child With Down Syndrome, Part XCVI: The Disney Machine

Copyright © 2016 Stephen Hawley, all rights reserved.

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In September/October, E and I started planning a vacation for February vacation. It was a trip to a Disneyworld resort with a Park Hopper pass for 3 days and then a visit to my folks, who are in Sarasota. We did a lot of ahead planning and were excited since a lot more of the parks were going to be accessible to both our kids. E made a PowerPoint presentation to help choose what attractions we would make sure we went to and which parks we would go to for our stay.

The first day was Epcot and we walked close to 7 miles. Alice did admirably well and we finished up with dinner in 'Morocco' and Alice did some belly dancing.

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The second day was the Magic Kingdom, but we ended up renting a wheelchair because Alice was clearly sore from the day before.

Alice and I had some fun playing with hats in one store:

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Stuart had picked out a lot of roller coasters. Oddly enough, I think Alice enjoyed them more. The jury is still out.

Stuart was very vocal about what he wanted to do, Alice less so so we had to fill in the blanks. E put the 3:00PM parade on the schedule and we were able to get a good spot thanks to the wheelchair. A number of the cast members saw Alice and waved to her directly. For example, Alice yelled to Merida who flexed and waved:

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I was standing behind Alice, so the intent is pretty clear. It was very sweet.

The final day, we went to Hollywood Studios and Alice was clearly off from the start. I stopped with her and took off her AFO and saw that she had a pretty big sore on the instep, so we walked back to the wheelchair rental spot and I found that you can get a comped rental by approaching them with a crying child with outwardly obvious disabilities. Alice really needed the chair, though.

We finished the day with a late character dinner and let me say that Alice had them wrapped around her little finger.

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The cast was very nice to Alice and Alice reciprocated. E and I both spoke to one of the handlers to make it clear how nice it was to have them taking such good care of Alice. At one point during the day Alice said that she wanted to be a Disney cast member when she grew up. I don't know how that would work out, but who knows?

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10Feb/161

This Space Intentionally Left Blank

Copyright © 2016 Stephen Hawley, all rights reserved.

Usually, when I write an article here, I have a goal or a theme. I write to that goal and try to show what I've learned or where I'm stumped. I do this as a diary for myself and as a reference for others. It is a window into my life and Alice's life for the rest of the world to see and to help me reflect.

Most of the time, I have no idea what I'm doing. One of my previous bosses (hey, Lou) complimented me on my ability to make good, solid decisions. I appreciate that, but at the same time it comes with a rigidity that is not always appropriate. So be it: I make mistakes. Who doesn't?

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We're taking a vacation soon. Hooray! It's been a while and I started planning this one in October. This is a rarity because usually I don't take vacations until I'm solidly in a crisis and am beyond the point of needing to get away for a while. I think I had more time to think about it. We had some money saved and considered going on a Disney cruise. Mind you, this is a scary thing to be on a ship with Alice who has impulse control issues, but I thought it would be nice and the Disney™ Brand offers a lot for both kids. In looking at the overall cost, it looked like we'd be better off going to a resort instead with Park Hopper passes and spend the rest of the time at my dad's place because kids and grandparents go together like assault and battery.

As we got closer to zero hour, E took the reins and prepared a PowerPoint presentation of all the major attractions that would be open in each of the parks and I took notes as the kids took it all in. She's done a great job and has spent a lot of time on the phone making sure that all the i's have been dotted. She's good that way.

However, there's a down side to this. Alice perseverates. This means that ever since the big reveal, Alice talks non-stop about the trip and says the same things again and again.

"We going to Disney and we pack tomorrow."

"No, Alice, we're not going for a month, remember?"

"We're going to Disney?"

"Yes, Alice, but not for a month."

"A month?"

"Yes, Alice, in a month. I understand that you're excited. It's OK to be excited, but it's not OK to say the same things again and again."

We put the travel dates on the calendar on the fridge. We pointed her to that. It helps. A little.

Today, the grand total of her talking about when we would be packing: 10 times up until dinner. Think about that for a minute. I see her for about an hour in the morning and 3 hours before dinner. That's 10 times in 4 hours, or every 24 minutes we had to have the same conversation.

We try to give her different ways to express her excitement. It helps. A little. She has taken to letting out a really high pitched "squeeeee!"

I'm still not sure what to expect for this trip. I'm very happy because this is the first time that we've gone to the park when we didn't need a stroller nor did we need a sticker that says "stroller equivalent to a wheelchair".

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which is fantastic. However, both kids are in totally different places in terms of interests, motivation, and motion.

I expect for the most part to be doing a lot of walking, a lot of standing, and a lot of intervention between the kids.

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