Plinth Blog Special Needs Parenting

24May/150

Running the 2015 Falmouth Road Race

I'm doing it again. I'm training to run the Falmouth Road Race for the Massachusetts Down Syndrome Congress. This is my third time out. The last two times were absolutely tiring. I don't expect this year to be too much different, except that I'm about 2 miles up on my total distance because I ran short distances through most of the winter.

This year's first donor, Stacey, a friend of mine from high school asked, "what do I get?" My snappy response was, "a tax deduction!"

I've been noodling her simple question over and I have a better answer now. If you donate and I have the information to get it to you, I will record a video of Alice personally thanking you for your donation. You too can hear her lilting prosody and I'm sure you'll get a smile.

Here's a link to the donation page.

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21Apr/150

Alice Does DC

Copyright © 2015 Stephen Hawley, all rights reserved.

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This is a stunning picture. You don't understand looking at this what was going on during the day, leading up to this. I've said it before, and I'll say it again: I'm Alice's second favorite person in the universe. Everyone else is tied for first. We spent most of the day together because E had spent most of the morning with her. Alice, of course, was seriously ticked off at me for the injustice and made no bones about making sure that I knew it. Still, we managed a walk from the Lincoln Memorial to the Washington Memorial. We stopped for this picture and Alice initially gave me the stink eye, but I managed to get a smile out of her.

It's been an interesting trip. We spent a day at Mount Vernon. We took a boat ride out from Alexandria and spent the day there. E had set up a tour wherein an actor plays the part of a period worker at Mount Vernon and we get taken around the grounds and get a view of the grounds from their point of view. We saw it from the point of a Scottish grounds keeper (huh...) who had set up the distillery and managed the grain production and livestock. Alice fell in love with him immediately and liked asking him questions or telling him about what she was seeing. He was very patient. More than us in many ways.

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At times it was rough. Alice telling me how much she would prefer to be with her mom rather than me and then managing the conflict between the kids in as fair a way as possible under the circumstances. Still, we've survived and managed to enjoy a few moments along the way.

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13Apr/150

One Handed Self-Care

Baths and showers have always been a challenge will Alice. It's taken years to help teach her to take care of this on her own. Shampooing has always been an issue. Working a shampoo bottle when one hand is gimpy is challenging at best. On her own, Alice is just as likely to dump a quarter of a bottle of shampoo on her head or into the tub and miss coverage on the weaker side.

The solution: more independence, not less:

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Why didn't we think of this before? So simple.

Alice is now less likely to waste shampoo and now we can concentrate more on coverage. Yay!

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21Mar/152

Happy Birthday/I’ve Never Liked Barbie

Copyright © 2015 Stephen Hawley, all rights reserved.

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This is my 12 year-old daughter, Alice on her birthday. She had a great day in school and came home with beads and excitement about her birthday dinner (gluten-free mac and cheese from a box - it's what she asked for). We opened presents before dinner and Alice had a great time ripping into them.

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See that look on her face? That's her looking at her clothes, saying "Ooohhhhhhh! That's so cuuuuute!"

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One thing that I really liked was Alice taking the time to read every word on the card she got from her grandparents. Alice has truly started to understand the power of reading and reads just about everything she sees.

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E has been worried about Alice's transition into middle school and wants to step up her game in self-care, so a lot of the presents were very much self-care things. The big one was the giant Barbie head. Now, I don't particularly like Barbie. Never had - unrealistic standards of beauty and all that. E thought that this would work well. Wow. The response from Alice as she unwrapped it was of a girl who has been fully indoctrinated by a marketing machine, "OHHH! BARBIE!" I couldn't open the box fast enough for her. Seriously, Mattel, I couldn't open the box - you made it quite the challenge. What were you thinking?

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Alice played with the Barbie head for a solid 45 minutes and I had to tear her away to go put on pajamas. I don't like Barbie, but Alice does and if it helps her learn to better take care of her hair and nails, then so be it.

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Happy 12th birthday, Alice! It's gone by so fast.

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15Mar/150

Yup, No Doubt I Have a Tween on My Hands

Alice has been very contradictory as of late. Anything said is an invitation for her to bicker. These days, we are at a two count for infractions before getting ejected from dinner. Alice got her two count for bickering and then continued to bicker about the consequences of being ejected. Arguing with the umpire(s) never goes well, no matter what the combatant thinks.

On the way up stairs, Alice turned and said, "Daddy, you're a BUTTHEAD!"

Perhaps. Perhaps not, but she's the one not getting pie.

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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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