Plinth Blog Special Needs Parenting

26Feb/150

Having a Child with Down Syndrome, Part LXXIV: Science Fair Followup

Copyright © 2015 Stephen Hawley, all rights reserved.

 

Several weeks ago, I talked about how I prepared Alice to collect data for her science fair project. Her data collection at school went great. She had a nice set of numbers that were well-recorded on her data sheets. On her last day of February break, we sat down to build some charts from that data. The thing I try to keep in mind when I'm working with Alice is "what should she get from this activity?" I could have guided her through the process of using a spreadsheet to build up the data and then let the spreadsheet build the charts. But what does she get from that? Math? Minimally. Is it authentic learning? Hardly. Might it be a good introduction for the future? Maybe. Would it hold her attention? Not at all. Instead, I went to an office supply store and bought a pack of large colored dot stickers and printed up some grids. My plan was to have Alice build up the histograms herself. We were going to do charts for girls, boys, and everyone. I let Alice pick the colors and we went over every data record and Alice told me whether it was a girl or a boy and then which column to put it in. She also picked the colors to use for each chart.

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See that lovely bell curve? Not bad for a small data set. Anyhow, Alice really enjoyed the process of making the charts and we went over them and I asked her leading questions "which one is the most?" "Who was fastest, boys or girls?" "Who was slowest, boys or girls?" I wrote down her answers and those became her conclusions. I transcribed her method as she dictated. Then I helped typed some of the main work and had her type in her conclusions:

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Then Alice helped glue everything down to the poster board. She helped pick the placement for the information. I put on the glue and she placed the paper and smoothed it out.

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Can you guess what my intended goals were? I wanted Alice to get a fine motor workout with stickers, do eye tracking for reading data and placing stickers, to recall the process of data collection (method), to come to simple conclusions, to reinforce them by transcription, and to practice typing.

From a critical point of view,  you can look at this and say, "right - but what did she learn about science?" And the answer to that is hardly anything at all, but she did enjoy the whole process. I've heard other parents moan about science fair. They are different people with different goals.

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We ended up with another goal that I should have, but did not expect: pride. This is Alice being proud of her work. And she should be. We worked side-by-side for more than an hour on this, and Alice was actively involved the whole time. She did a fantastic job.

When we got there, she talked to a lot of her friends and then presented her work. It was loud and the "judge" had a hard time hearing her answers to the questions, but she got through eventually. Alice got a certificate for her work.

16463057089_c279a3496a_zAnd again, you can look at this critically and say, "what value is that? After all, it's hardly special. Every kid gets one."

And once again, the answer is pride.

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This is Alice showing her certificate to her friend, Mia, who was so happy for her that she wanted to take a picture of it.

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I couldn't make this up and the look on Alice's face tells it all: I had fun and I did a good job. And when you think in the bigger picture of trying to get kids excited about STEM, I helped her hit that one out of the park, even though I have no doubt in my mind that she will never have a career in science, technology, engineering or math. And frankly, I don't care.

Alice enjoyed sharing excitement with her friends. I think her favorite thing was Maeve's gerbils:

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Me? I knew it was science fair, because there was a baking soda volcano.

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22Feb/151

Having a Child with Down Syndrome, part LXXIII: Oh Sleep, How I Miss You

Copyright © 2015 Stephen Hawley, all rights reserved.

Last night's dinner menu said simple, "SURPRISE!". E and I agreed to go out for dinner with the kids to Chili's. We bring a gluten-free hamburger bun for Alice and it works out well for everyone. As we arrived, I enjoyed looking at the sky with Stuart and we spotted Venus, Mars, Jupiter, and the moon (and Earth, but that was easy). Dinner went well and the kids were reasonably well-behaved. I wondered idly if it was time to upgrade our standard from "a modicum of civilization" to "a moderate amount of civilization".

At around 3:15, I woke up from a dream wherein I was searching in vain for a bathroom. This is never a good sign and it makes me wonder why our brain wants 8 hours of sleep, but we don't get an 8 hour bladder. After successfully finding a bathroom in the waking world, I went back to bed, hoping to drift off. Ha. I should know better. Click. Creeeeeak. Pad, pad, pad. That was Alice getting up with hopes of watching TV. I stepped out of my  bedroom and saw Alice one step downstairs. I pointed towards her room and she shook her head 'no'. I pointed again and signed, 'now'. She went back to bed.

Unfortunately, now I was up for the duration. My eyes were too tired to read, but my brain was too awake to sleep. This is the worst. I went through all the code I had been working on on Friday and figured out how to narrow down the cause of the bug I was looking at 10 hours earlier, but my mind still wouldn't let go. Oh well. I guess Alice is not the only one who perseverates.

Alice didn't sleep either and this is not good. We can tell when Alice hasn't had a good night's sleep because the next day she will be a total space case. Things that she normally does well, she has a great deal of problems with. It took Alice close to an hour to take a shower because of her failing to concentrate on the task at hand. I dreaded going shopping with her when I too 5 reminders for her to come down with a sweatshirt and her usual clipboard, glasses and ID badge.

The shopping went reasonably well. Big Y had fresh roasted turkey breast, which looked like a good lunch. They also had a sale on grape tomatoes, so I got some of those and some small mozzarella balls and some pickled cherry peppers. When I got home, I cut up the turkey and made a nice salad from the tomatoes, cheese, and peppers with some olive oil, herbs, and vinegar. I called everyone for lunch and Alice looked at her plate and said, "seriously, dad? Salad?!" "You don't need to eat, Alice. Do you want me to take it away?"

Later in the afternoon, she and her brother were watching some TV and Stuart called me saying that Alice was stripping down to nothing. I called her up and she refused, so I gave her the choice of coming up on her own or coming up with a swat on the bottom. She refused again. I went to get her and made it clear that her behavior was not an option. She refused again so now I physically moved her and added a swat on the bottom.

Everyone is tired.

Anyone want to bet that she's up again at the same time?

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13Feb/152

Having a Child with Down Syndrome, Part LXXII: Doing What Needs to Be Done

Copyright © 2015 Stephen Hawley, all rights reserved.

This area has been hit with a fair amount of snow recently, and while we do our best to keep our sidewalk clear and we'll also help out our neighbors, we can't expect everyone across all the blocks to do a consistent job. After a big storm, like the one we had the past Sunday, I knew that things weren't going to be great. In walking Alice to the bus stop, I brought a snow shovel with me and cleared the areas in front of her as needed (and it was needed).

At one point, two dogs came charging at us at full speed, barking up a storm: a chihuahua and a Pomeranian. Huge threat. As the approached, I planted the snow shovel onto the sidewalk, making a nice resounding thunk. The reward was both dogs immediately turning tail and retreating with a satisfying, cartoony, "AI-AI-AI-AI-AI." Had I a little more presence of mind, I would've led with "YOU SHALL NOT PASS!" before dropping the shovel.

The real work was at the bus station:

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several feet of road margarita piled up preventing the kids from getting to the bus. I dug it out, finishing up right when the bus pulled up.

You can see from this picture that the people who "clear" the area have no real belief that this should be a functional bus stop. You know, a place for people to wait for and get to a bus.

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The point is, as a parent of a child with disabilities, you can demand that the world be 100% accessible (and under some circumstances you should) or instead you can choose to fix what's broken. In this case, the fix is simple: after a snow storm, I bring a shovel with me and fix what needs fixing (and if I had time, I would have dug out the kiosk too, but I had to get to work).

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10Feb/150

An Open Letter To Apple Computer

To whom it may concern,

You've created an enormous opportunity with the iPad. You've made it possible for those with disabilities to have access to learning and information in a way that is natural and independent. At least you did. You see, there is a problem in your ecosystem. My daughter has Down syndrome and she had a stroke, so motor control is a challenge for her. There are apps that would be perfect for her, but in the span of 1 year of purchase, the apps that she is ready for now (which she wasn't a year ago) no longer run on the version of iOS that came bundled with her iPad. Even if they had been available before, they aren't now because you don't make available previous versions, even if upgrades to the app were made just to keep up with the OS change.

Why not update? What could possibly be the harm in that?

Here's the harm:

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You, in your infinite wisdom, installed the Music app with no possible way to shut it off on the device. You also bundled with it Disney Princess Radio (note that I originally typed that as 'bungled' and maybe that's a better word for it) and in one fell swoop, you took away her independence on the device. You made it so that she has to be watched every single minute or else she will inevitably turn on Disney Princess Radio and she will completely perseverate on this. This is the exact opposite of independence and it strips our independence as well. You have no idea.

For better or for worse, I managed to dig into my router settings and block the following domains:

  • play.itunes.apple.com
  • radio-activity.itunes.apple.com
  • radio-services.itunes.apple.com
  • radio.itunes.apple.com

Then I also blocked TCP traffic on ports 42000-42999 and 8000-8999, because the domain neither alone seems to work. Unfortunately, because the app is still there, she will keep trying to access this and likely she will succeed after your next update wherein you change a port range for this.

For the love of dog, would you please refrain from putting in bungled applications without a means to shut them off on the device or to remove them? To not do so is a serious problem.

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9Feb/151

Having a Child with Down Syndrome, Part LXXI: Science Fair

Copyright © 2015 Stephen Hawley, all rights reserved.

Science Fair - this is hilarious. At this level, most of the projects that we see are fairly canned engineering/cooking masked as science.  For example, I've seen several variations of "Can I Make Candy?" for which the answer is a pretty obvious 'yes', but for there is little actual science, although the child might learn something about sugar crystals and gotten a certain amount of satisfaction from the making something. Last year, we did a heavily guided project where Alice tried to find the answer to the question, "Do big seeds grow faster than little seeds?" for which the process was handled as scientifically as possible with few resources.

So how do parents of a child with severe cognitive delays handle science fair? First, it helps to be a science geek. Second, you as a parent need to start by answering a question. In our case, it was "what do we want our child to try to learn?" For Alice, there is a decent list of answers: trying something new, following directions, making a graphs, collecting data, and most importantly for Alice to be able to do this as independently as possible.

This year, I presented Alice with 3 choices - the first was a plant option, the second was investigating microscopic life from leaves and dirt, the third was measuring reaction time of her peers. I took time to explain what the choices were and let Alice pick. Alice told me that she was working on charts in school and that she wanted to make charts. OK - the third choice falls into that. So I thought how to simplify an experiment to meet the core goals and then I created a process and I trained Alice on that today:

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It consists of a script (see above) which is simple, but well within her reading skills and a ruler. I marked one end with magic marker so Alice would have a strong visual cue as to what end to hold up (remember, by and large, people with Down syndrome are more visually oriented than anything else). I also made a chart (protip: use big numbers, alternate colored background/white - this makes it easier for her to record numbers). Finally, we practiced. I did it once (note: you could also do something like this with video modeling too), reading from the script, then I had her practice with me and with her mom. We did it about seven times and on the last time, I shot some video and posted it for the school to see so that they would have a reference.

So in this case, our goals for Alice are to follow directions, learn how to collect data, be social, and later to make a chart. We may make the actual question be "Are girls reactions faster than boys?" More things to note: I made the task of collecting data two step (one, if her aide puts names on her paper): make an X on the number. When it's all done, we'll either make a set of histograms with stickers or using a spreadsheet - all very straight forward and interesting enough to hold her interest.

The overall process of creating an attainable science fair project for someone with cognitive delays is not hard, but it takes some time. It also takes some concessions: for example, I'm not really caring about accuracy at all. Off by a few inches? So what. Inconsistent sampling? Meh. That's not important. Alice will one day work a job where she has to be able to follow directions and be understood and that's what we're shooting for here.

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3Feb/150

Having a Child with Down Syndrome, Part LXX: Perseveration

Copyright © 2015 Stephen Hawley, all rights reserved.

Perseveration is when you are unable to let go of a thought, idea, concern, worry, etc. Alice Perseverates. A lot. At times, it's hard to separate perseveration from simple obstinacy (which Alice also has). There are a number of things words or phrases that are best to avoid in the presence of Alice. Here is a subset:

  • Florida
  • Grandparents
  • Christmas
  • Disneyworld
  • Edie (Alice's best friend)
  • Sleep over
  • Girl Scout Camp
  • Box Trolls
  • TV
  • Wizard of Oz

Mentioning any of these is sure to set Alice of for hours on that topic to the exclusion of pretty much everything else. It's a real hassle because there are times where you need to get Alice to focus on something specific (say, getting ready for school) and she has locked onto something else and Will. Not. Let. Go. Both E and I are likely to lose patience when Alice starts to perseverate. I'm sure it's frustrating for everyone.

Ah well.

In the meantime, here is a video which is the outcome of Alice perseverating on the Wizard of Oz:

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14Jan/150

Survived Another Day

But they'll likely kill us in the morning.

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4Jan/150

Down Syndrome in Advertising

The Huffington Post reported about Target using a model with Down syndrome in one of their recent ads.

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This is terrific. I'm very happy to see this again.

Wait. What?

Yup, again. Target has done this before:

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Fantastic. Good for your, Target! It's great to provide these images of kids with disabilities embedded within your marketing material. This is a great step forward for inclusion and to reduce the stigma of Down syndrome.

And if you read here routinely, you know that I couldn't possibly be satisfied with this. You know what would be great, Target? If you carried clothes that are proportioned for people with Down syndrome. Right now, I know of no company that makes off-the-rack shirts that fit my daughter (Downs Designs makes pants and a limited number of short-sleeved shirts). Compared with typical kids, she has a longer torso compared to her arms. If the shirt fits her torso, the sleeves need to be altered. If the sleeves fit, my daughter will display an inordinate amount of plumber's butt (thanks to pants that don't fit well). We got lucky with Duluth Trading Company making some 3/4 length sleeve shirts for women that fit Alice better than most, but even though I've contacted them before, I have no illusions that these shirts were in response to that interaction, nor do I believe that they will carry these shirts in the future.

So great, Target, you're helping people get used to the face of Down syndrome. Now wouldn't it be great if we had something to buy?

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29Dec/140

So Then There Was Yesterday…

Copyright © 2014 Stephen Hawley, all rights reserved.

Alice has many good days. By and large, she's a very friendly, sweet, loving girl. So then there was yesterday.

Alice, as mentioned before, had a stroke when she was born that lodged in her frontal and parietal lobes as well as her pons. The parietal damage explains her difficulties with her right side, especially her right hand. The frontal damage is likely causing problems with executive function. In her case, there is a huge set of gaps between "I could do it", "should I do it?" and "damn the torpedoes, full speed ahead."

This has always been problematic. For example, in grocery shopping, she had a tendency to grab everything. This took years of repetition and a list to sort out. Still, every day I see her reaching for something in the house that is clearly not hers for which someone (likely her brother) would be unhappy with and we run through this litany:

"Alice, is that yours?"

"No."

"Did you ask?"

"No."

"Should you be touching it?"

"NO."

"What should you do?"

"Leave it ALONE."

Yet, even though we go through this, there is still the gap where "should I?" doesn't seem to ever enter into play. It's the reason why we have a lock on our bedroom door, after getting woken up so many mornings. It's why our entertainment system is controlled by a smart switch after finding her watching "Mirror, Mirror" at 4:00AM with the volume up. It's why our thermostat is locked through software. It's why i lose a lot of sleep wondering if she will ever be able to live independently when these simple gaps exist. Another example is when we have house guests, Alice is so excited that she unpacks for them. Nobody has much privacy under those circumstances.

Yesterday, I caught her with her hand in the proverbial cookie jar several times for things that she's be asked/warned/told several times not to do, resulting in time outs which in turn led to much indignant screaming at the apparent injustice.

There were bright spots. We (as a family) took advantage of the mild December weather and built some raised beds for our garden next year. Alice helped nicely. She carried wood for us and when she wasn't helping directly she was (mostly) playing with her brother nicely.

At the end of the day, E was setting up a Chromecast device on our entertainment center and I could tell it was a little frustrating. Even with direct words to wait and not touch, Alice started to monkey with remotes. After the second time, I came down to intervene.

"Alice, what did mommy say?"

"No touching."

"Did you touch that?"

"Nnn...o.: (at this point her brother was about to answer that for her, but I gave her The +3 Serious Raised Eyebrow of Bullshit Detection) "Yyy...es."

"Ok, Up to your room."

After a half hour of yelling, I heard her calling, "Daddy! I stuck!" Although her words weren't intense, she was repeating them. I went upstairs and saw that she had removed the heating register and jammed her foot into the duct in the floor. "Daddy, I stuck."

"Alice, I am so angry at your behavior."

"..."

"Alice, is this yours?"

"No."

"Is it a toy?"

"No."

"Should you be touching it?"

"No."

"You know all these things, but still you do."

Yes, I lost my temper. Who wouldn't?

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15Dec/141

Having a Child with Down Syndrome, Part LXIX: Reading Between the Lines

Copyright © 2014 Stephen Hawley, all rights reserved.

Tonight, Alice and I finished up our performances in the Pioneer Valley Ballet's performance of The Nutcracker. I was a Party Adult for 6 performances and Alice was a Holly Tree for two. Alice and I went to weekend rehearsals for most of the autumn and dress rehearsals for "theater week". The Holly Tree role was new to the production this year, which meant new costumes and new choreography. In the dress rehearsal, the dressed Alice in the basement and then helped her up the stairs to the stage. Stairs are always tricky for Alice, even more so at the Academy of Music, which was built in 1891. The stairs are tight and the costume made it more challenging. At the last minute on the performance today, they decided that Alice would go up without her costume and they would dress her upstairs in the wings.

I could hear her complaining and calling for me, so I came over (my part finished) and calmed her down and tried to see if I could get her to understand what they wanted. Alice wasn't communicating well, but my best guess was that they were asking her to do something different than the rehearsals and asking her to do something different than the other girls. I also think that she thought that she wasn't going to dance or wasn't going to dance in her costume. So instead of forcing her, I saw no reason not to put her in her costume and I would help her up the stairs early and we would have plenty of time to wind down. This is especially entertaining because at this point I was halfway out of my costume. I was still wearing formal trousers and shoes, but has nothing but a tank undershirt on otherwise. I also still had my stage make up on and looked comical, no doubt. However, when you are called as a parent, nobody asks you what you're wearing. You just step up.

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We waited on a riser downstage and got to watch some of the principals warming up during intermission. Alice got to see the stage when it was completely lit and got to see the dancers doing their thing. She talked to several of them, introduced me and asked them what their favorite character in the Nutcracker was and who they played. Alice really liked Mother Ginger. Mother ginger is a character (usually played by a man - bonus if he has a beard) in an enormous skirt which is hiding several children playing polichinelles. They come out from under her skirt and dance then run back under. Her skirt was in the far wing, hoisted up on ropes out of the way.

As a reward for her calming down and getting ready, I walked her down the main stairs on the riser onto center stage and danced with her for a minute while the rest of the cast gathered. We got her star prop, and I watched from the wings as she got set and did the opening dance with the gingerbreads. She did a wonderful job and I got the added bonus of having the best view in the theater. Alice's mom thought she looked angry, but I knew from having 20 minutes of time with her that she was anything but. She was focused and intent on doing her part and doing it well.

We had a minor issue afterwards. Alice and I both had a second performance, but Alice decided that she was done and had pulled out her bun and got changed. I had her change back and took her to the makeup table and asked one of the staffers who I knew had a daughter in the company to put her hair back in a bun. Alice doesn't like having her hair done by anyone and she went into an angry screaming fit. I reminded Alice that this was the consequence of her choice of pulling out the bun and that if she had asked me beforehand, I would have told her to keep it in. The makeup volunteer was having a lot of trouble with the bun, so I took over and let Alice focus her anger not on me (for a change) and did up her bun as best I could and got her ready for her second performance. I once again helped her upstairs and spent intermission with the principals.

Her second performance was not as good as the first. Alice was clearly tired and her concentrating was flagging. Still, she finished it well.

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Afterwards, I took her out on a date to a nice restaurant for dinner and introduced her to a Shirley Temple. We ate and headed home to bed.

The really fantastic thing is the Pioneer Valley Ballet. The Nutcracker is an immense performance. The cast is a small army of people who need to get checked in, into makeup, into costume, on stage, off stage, out of makeup, out of costume, and checked out. For younger kids, this is an intense experience. Older dancers frequently have multiple parts. Dramas abound before, during, and after every show. PVB doesn't have to make ballet accessible to Alice. Yet they do and Alice thrives in the environment. Yes, she had some trouble - had they asked, I probably could have helped prepare her better for the procedural change, but everyone was flexible and everything worked out fine in the end.

I will also note that during dress rehearsal, E was doing makeup and she finished right when Alice was on stage. We watcher her on a TV they have in the basement of the theater and we both had a moment of not knowing which Holly Tree was Alice. For parents of the girl who is so different from her peers, it was so nice to have the moment and recognizing it.

 

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