Plinth Blog Special Needs Parenting

10Feb/160

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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1Feb/162

Having a Child With Down Syndrome, Part XCV: Band Wrap Up

Copyright © 2016 Stephen Hawley, all rights reserved.

Band for Alice was an experiment. We had her signed up and sought out a special instrument and then in the fall were told that she couldn't take band because it didn't fit in her schedule. We horse traded and managed to get 1/2 a year of band in exchange for losing 1/2 a year of physical education. It's not an ideal exchange, but that's what makes it a compromise.

In speaking with her band director when I ran into her at a store, she told me that Alice had asked to conduct one day and the band director, to her credit, said sure. I was told that she did a wonderful job. I did not know that she had shot video of it.

A couple things to note:

  • she starts off the group perfectly
  • she cues the trumpets at the right time
  • she cuts off at the end
  • her peers applaud for her

The last is the part that I'm especially happy about. As I've mentioned in the past, she is with a great group of kids who honestly like her for who she is and that is something that will continue to lift her up in the future.

She didn't really progress on the instrument, but I think she got a lot out of the class and I think the video is pretty clear on that point. If you're looking for a reason as to why inclusion is important, it's right here: everyone benefits from inclusion done well.

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24Jan/160

Having a Child with Down Syndrome, Part XCIV: It Takes Longer

Copyright © 2016 Stephen Hawley, all rights reserved.

Alice had another Social Studies assignment related to Central America. This time, they wanted her to send in a recipe for a food from Mexico. Fortunately, many of the typical foods are or can be done gluten-free. The trick here is to pick a recipe that is traditional and simple. I did some pre-investigation and offered  corn tortillas as an option for Alice. She was excited about that so we watched a few YouTube videos on how to do it before settling on one that was appropriate and we worked on transcribing it. It was clear that Alice wasn't really listening to the woman presenting the recipe because I had to go back over some sections seven or eight times before she listened to and heard the actual instructions to recall them.

After I wrote down the ingredients and instructions, I had Alice type them back in.

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Alice is a hunt-peck typist and this process is slow, but in theory it would help her internalize the recipe more. Alice was starting to do more consistent two letter chunking so it didn't take too long.

Then we got to work making the dough for tortillas.

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Alice enjoyed the tactile sensation of the dough, but I had to finish it up to get it to hang together.

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We made a test tortilla and it came out very well. I'll cook the rest before school on Thursday when they have to go in for a fiesta.

Mental note: making corn tortillas from scratch is super easy.

Alice's recipe:

Corn Tortillas

1 cup masa flour

1- 1 ½ cup water

pinch salt

put flour in bowl.

Add salt and mix.

Add 1cup water and a

little bit more.

Knead the dough until

all the lumps are gone.

Let rest for 20 minutes.

Make into 8or 9 balls.

Press flat.

Cook 1-2 minutes per side.

 

It takes longer to this kind of work, hopefully it's worth it. One never knows in the moment.

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16Jan/160

Having a Child with Down Syndrome, Part XCIII: Hard to Accept

Copyright © 2016 Stephen Hawley, all rights reserved.

This blog is difficult to write and it's likely that it will be half baked, so take the content with a grain of salt and accept that I'm writing this and the entire blog while we're at it to help codify my thoughts, understand my emotions, and provide a reference for other parents in the same boat, although the last is a distant third.

One of the things that happened with us early on in Alice's life was that we spent a lot of time trying to kindle hope in the face of the trauma of having a baby with multiple disabilities. This process was necessary. Hope is what provided us with the strength to face an unknown and manage to get through the early intervention, the therapies, the oxygen tank, the medications, all on top of being first-time parents.

Now, nearly 13 years later, I'm looking at Alice with an eye towards what was her long-term future when she was a baby, but is rapidly becoming her near-term future. I look at her behaviors and her abilities and I'm starting to lose hope. Alice has a number of problems that stem from the stroke she had as a newborn. One of the problems is her executive functioning, which is hampered by damage to her frontal lobe. Alice has very poor impulse control and no amount of positive or negative feedback has changed that. Alice will still touch people inappropriately, play with things that are not hers, fixate on things, ask the same questions dozens of times, and so on.

Looking at that and the trajectory of her maturity, it is getting harder and harder to imagine her living an independent life. It's hard to imagine her holding any kind of job without a job coach. It's hard to imagine her having a meaningful relationship.

It sounds like I've given up. I haven't. It's just that I'm trying to figure out what the realistic options are and how to frame a future for her that will be fulfilling for everyone.

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8Jan/160

Having a Child with Down Syndrome, Part XCII: Homework Modifications

Copyright © 2016 Stephen Hawley, all rights reserved.

Two jobs ago, I was a teacher in the smallest school district in Massachusetts. I came in from "industry" as a software engineer and tried to be a quick study in terms of technique used in the art. The district's low-budget computers routinely had issues and one of my many jobs was to bounce between classrooms fixing them. During these times, while I was waiting for machines to reboot, run diagnostics, or install software, I made a point of observing techniques that the teachers used and to steal what worked and do my best to avoid what didn't. One thing that I saw was how teachers modified curricula on the fly for students with different skills.

When Alice gets any kind of homework assignment, I look it over to see if there are modifications built in and then given the assignment, I try to find a way that meet the goals of the assignment with the greatest educational benefit to Alice while minimizing roadblocks.

Alice had an assignment to create a travel brochure for the Latin-American country assigned, and in her case, Mexico. The teacher had made a fine rubric built into the assignment sheet which indicated the parts for which Alice was responsible. Yay! I looked at the overall goal (make a travel brochure) and broke it down to the actual goal: learn some information about Mexico and communicate it in a way that might entice someone to go to Mexico. My solution was that instead of making a brochure (which would involve Alice spending most of her time figuring out how to make a brochure) to making a series of web pages about Mexico, which instead would involve Alice spending most of her time transcribing her notes about Mexico into web content. This, in my opinion, would honor the real goal of the assignment by giving Alice a chance to read and repeat the facts several times and practice typing instead of trying to put together a brochure. I did the "hard" parts of putting in the images that Alice picked and ensuring that the pages all linked up.

Alice liked the process for the most part, although at the time of day we were working on this, she was clearly struggling to maintain her attention and required a fair amount of redirection. And then instead of killing trees, we emailed in a link to Alice's work.

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17Dec/150

Sometimes You Can’t Help But Be Grumpy

Alice has been off her game the last two days. She's been kind of irritable and not listening well (for example, we made cookies yesterday after school and she turned on the mixer when I directed her to wait please). As a parent, you can't help but be grumpy when you see behaviors that are well beneath the best or even the typical for your child.

Then there are the moments like this morning when I called Alice for breakfast:

Me: Alice, breakfast!

Alice: Breakfast ti-i-i-i-i-ime! (woot, woot, woot!)

Me: Did you say, 'woot, woot, woot'?

Alice: Yup.

And I couldn't help but be vicariously joyful. It stinks sometimes to be a jaded adult that I don't see the joy in an over-easy egg and a piece of toast.

Then again, Alice cured that joy with a good solid shot of "I'm going to play in my room and not get dressed in a timely manner."

Some days it's this clip from Parenthood. It really is.

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17Dec/150

Having a Child with Down Syndrome, Part XCI: Band Concert (a.k.a. The Parent’s Prayer)

Copyright © 2015 Stephen Hawley, all rights reserved.

Alice and I have been practicing French Horn on and off since the beginning of school. A typical practice session is mouthpiece buzzing, long tones, then some attempt by me to get her to do lip slurs, then Valve Simon Says. Although I have succeeded in improving her long tones (well, long tone, really since there's only one), I have yet to find the right recipe to get her to change pitch. Smiles, frowns, moue (kissy face), vowels (ooo, eee, aaa): nothing has worked for her.

Tonight was the winter band concert. She plays in the 6th grade band which has 91 kids. Ninety one. That's a very big group, akin to the size of a symphony orchestra.

The school arranged to have an aide help Alice get her seat, but after that, it was all on her.

Alice had a rough afternoon. It was very difficult for her to attend to the task at hand and I was having a great deal of difficulty imagining her succeeding this evening when she would be tired on top of the rest. I let the aide know what I had seen and then gave Alice a final encouragement ("I can't wait to see you do a good job tonight!" "OK, daddy!").

I took my seat, well away from the stage (if Alice sees a family member, she'll perseverate) and silently recited the parent's prayer:

Dear Lord,

Please let nothing go wrong.

And if something does go wrong,

Please let it not be my kid.

Alice attended mostly - there were some people close to the stage that she wanted to wave/talk to. Alice brought the horn to her lips at appropriate times. I have no idea if she was making any sound at all since she was surrounded by the immense wall of sound coming from 90 other beginning players. So, yay?

Her band director should be canonized, though. 91 kids. Wow.

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15Dec/150

Having a Child with Down Syndrome, Part XC: In On the Joke

Copyright © 2015 Stephen Hawley, all rights reserved.

"Ev, where's the pepper?" I asked this morning after rummaging throughout the kitchen and dining room. I found the salt, surely the pepper couldn't be far?

"Oh! It's on the table in wrapping paper."

"..."

"Alice was fixated on wrapping presents yesterday, so Alice [her namesake] helped her wrap it up."

"Good to know."

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I filled up the emergency backup pepper mill (just visible, propping up the present), addressed the present to me and then put it under the tree.

11 more days until comedy gold ensues.

Sometimes the jokes just write themselves.

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27Nov/150

Just Dance

I caught Alice playing Just Dance yesterday. Besides being worth a smile, I really liked how closely she was attending to the game. I wish Alice would play it more than she does because it is a visually driven game (people with Down syndrome tend to be visual learners), it is active, and Alice loves dance.

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25Nov/151

Having a Child with Down Syndrome, Part LXXXIX: They’re a Different Generation

Copyright © 2015 Stephen Hawley, all rights reserved.

I touched on this briefly, yesterday and in the past: the current raft of kids are very different from when their parents were kids. They have grown up with changes in gay rights and have grown up with inclusion. They've grown up learning to accept and celebrate differences. My generation - not so much. Kids with disabilities, especially cognitive ones, were either taunted or beatified. The teasing was almost certainly because we could either get a reaction or didn't have to worry about them fighting back.

It's weird seeing the generational differences. Today, E and I had a meeting and I was wearing a Bruins sweatshirt that I picked up at an MDSC hockey game. The man we were meeting with asked me if I was a Bruins fan and I explained about Alice. I watched him closely when I said, "Down syndrome" and saw his brow knit in concern and he said, "oh, I'm sorry." And I do not fault him for his reaction. Though he is an educated man, he is as much a product of his own generation as I am of mine.

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This is something that Alice brought home from school. It's a project that is being done in class. I don't know any more about it from what you see, but I assume that 7 of her classmates gave her compliments. They could very well have been out of pity, but given this group of kids and how I've seen them act, I doubt that very much.

To quote The Who, "the kids are alright." From my generational perspective, I expect worse. I'm waiting for terrible behavior. I'm waiting for reports from school. I'm waiting for Alice having a horrible day and us left to figure out what happened through forensics. Instead, we consistently get this kind of thing. Part of it is Alice. She is outgoing, trusting, and genuinely likes other people. And her friends get that and reciprocate.

How awesome!

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