Plinth Blog Special Needs Parenting

23Apr/170

Running the 2017 Falmouth Road Race

I'm doing it again. Two years after last time. Yes, it took me two years to recover. But let's step back and give some background.

To start with, I'm a terrible runner. Absolutely awful. My run is a slow jog at best, but it's an exercise that I really love. The Falmouth Road Race is a big race - it attracts close to 14,000 runners, with special preference given to eilte runners as well as locals. There is little chance that I could ordinarily get a slot in this race, except for fund raising.

We've been involved in the Massachusetts Down Syndrome Congress from very early on in Alice's life. They are an organization that has shaped the way that we look at Alice and at all people with disabilities, not just Down syndrome. So when they offer me a slot in this race, I always think very carefully about it.

How can I convince people of the importance of this organization? How can I communicate the importance of the MDSC's goals? How can I prepare my aging, broken-down self for this race?

Now, more than ever, is the time to be active and to support the MDSC. The current political climate is contentious, to say the least, with people in key positions in the administration who appear to want to dismantle the infrastructure that has been built that helps all people with disabilities. Kids with disabilities will get a smaller piece of a shrinking pie. The MDSC works at the state and national levels to help advocate for people with Down syndrome for education, employment, advocacy, housing, and so on. It is a Herculean task.

And that is one big reason why I'm doing this.

And for my health. I started thinking about the 2017 race last September, when I started going out more regularly and got myself up to a nice easy 5K range in the winter. Since then, I've been working on a training plan that adds more time per week as well as one day of "fast" intervals. I've been stepping up my time successfully and Friday did a 70 minute run. By August, I should be able to run at my slow, easy pace for far more than is needed for Falmouth. In theory. Two years ago it was brutally hot and humid. I expect the same this year. Still, I love the race. It's a gorgeous route that goes past a light house and hugs the ocean for much of the route. Plus, my family will be waiting at just past the 3 mile mark to cheer me on. Always a bonus.

My fundraising page is here. Please donate.

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19Apr/170

Having a Child with Down Syndrome, Part CXXV: Technology Judiciously

I read an article this week in The Guardian about Terry Jones, one of the members of Monty Python. His family has announced that he has frontotemporal dementia. It is sad to hear in a man so well educated. In reading about the symptoms, many of them lined up with Alice's. Her stroke affected her frontal and temporal lobes and her pons. She has difficulty monitoring her behavior and can't resist impulses to touch/take things and recently to eat without end (this is a combination of both teenage hormones and impulsivity). TV is an ongoing issue as well. If Alice had the access, she would watch TV until she passed out and start right up again when she woke up later. So what do you do?

In our case, we made sure that the TV and the router that connects the kid's laptop to the internet are both on remotely controlled switches. In our case, I selected WeMo switches made by Belkin. The software that came with them was kind of junky, but there were several open source alternatives that worked better for us (WeMo Home on Android is our current go-to). So from our phones, E and I can tell if the entertainment center can be turned on or not and change that state without having to trudge down into the basement. The system works well - for most of the time, the switches are off. We turn it on if it's OK for Alice to watch something on TV and shut it down after she's done. If we remember.

This past Monday, Alice got up super early (probably 5:30 or so) and made a bee line for the basement. I woke up a little later and thought I heard the TV on, so I grabbed my phone and shut it down. 2 floors up, I could hear the indignation ("Hey! Don't you ever ever turn the power off again!"). Alice stomped up one flight of stairs and started playing with her iPad. Unbeknownst to me, she wrote an email to E:

On Apr 17, 2017 6:18 AM, "Alice Hawley" <> wrote:

My daddy to show not off

For working entirely by herself, she did pretty well. I suspect that she probably used the word cues to make sure her spelling was correct. E sent her a reply:
Dear Alice,

Thanks for letting me know you are having problems with the TV.
I am sorry that it startled you when the TV turned off abruptly this morning. I can see where you might think  the TV was broken.  If that were the case, I would most definitely help you.
However, what should you being doing before 6:00AM in the morning? (Hint: it is not watching TV)
Love,
Mom
This reminded me of a story a friend of mine from high school told me about when he was very young. His mom was making some Jell-o and he wanted to help. She told him 'no' (which makes sense - Jell-o gets made with boiling water). He went to his room and wrote a note that he threw into the kitchen before heading back to his room:
I hate you mom because you woodent let me steer the jello
I feel like Alice did the same thing, but instead of writing with a pencil (which would be very hard for her), she instead went to the adaptive technology and was able to get her point across. Hooray! Everyone wins!
Except for the whole TV thing, but hey.
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16Apr/172

An Open Letter to General Electric

To whom it may concern,

Normally, when I have an issue with a product, I take it directly to the company that produced the product. I often will write a letter which I euphemistically call a nastrygram expressing my dissatisfaction and what steps I would prefer the company to take in order to make this right. Most companies go through the effort to do this. When a problem is so egregious that I can't think of a single thing that I would be willing to accept from the company to make things better, then I make the letter public because this problem is so awful that I feel the public should know.

Congratulations, General Electric! You have earned this status.

I live in a small community that has a number of houses that were all built within a short period of each other about 3 and a half years ago. We were offered a set of appliances for the kitchen with the base level being products that you manufactured. In our house, this consisted of a stove, an over-the-stove microwave, a dishwasher and a refrigerator. With the exception of the stove, we have had issues with every single appliance.

Microwave, model JVW1540DM5WW: the door handle came off in the hands of my 10 year-old son. The replacement handle direct from GE cost 1/3 of a new comparable unit. Screw you, I made my own using a 3D printer and spare parts in my house. The plastic piece above the door has cracked from being removed and replaced twice.

Refrigerator, model GSH25JGDDWW: both food bins are cracked, one of the light covers is broken, the ice maker routinely makes stalagtites which require defrosting the unit to remove.

Dishwasher, model GDF510PGD1WW: both racks have many patches of coating that have worn off, exposing raw metal that is now rusting. The heating coil for drying the dishes no longer works for either drying dishes or for "boosting" the temperature of water used in the washer. The unit routinely doesn't dissolve all the detergent. The upper rack washer arm routinely falls off. Dishes routinely come out dirty with a greasy coating on them. The filter needs to be cleaned every 3 days in order to have passably clean dishes.

The stove still works reasonable well. Good on you.

All of these failures have happened withing a few months of each other. This is indicates that this is the result of careful engineering. I feel like each of these appliances was designed to have a lifespan of 3-4 years. Now, critical readers may think that I just won the lottery in terms of device failure, but my community is relatively tightly-knit so I reached out to my neighbors to see if they have seen similar problems. Here are a few choice quotes:

We had an issue with the dishwasher, but it was from the very beginning. Repaired in first month over a year ago.

My 5 year old microwave already replaced!

We have had issues with our dishwasher. We have been here for two years.

This isn't surprising, Steve. I [know] someone who was pretty high up in GE, and he said the only appliance worth having was the oven. He said there were a lot of issues with all of the other kitchen appliances 🙁

So there you have it. My expectation for major appliances such as these is that they should last 20 years with light maintenance, yet 3/4 of mine have failed within 4 years. You might have thought "we'll cost optimize these products so that they are attractive for the price point and will wear out in the short term so that our customers will buy replacements after they fail." And some people may think that, but not me. No. Let me make this perfectly clear: you fucked up royally. Starting with our dishwasher, I am replacing GE appliances with products made by other manufacturers and I will never purchase another GE product ever, and I strongly encourage other consumers to take a similar stance.

You made poor engineering decisions and this is what it has cost you.

Sincerely,

Steve Hawley

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9Apr/170

Having a Child with Down Syndrome, Part CXXIV: Oh, Teenagers

The last several weeks have been busy. That explains why my writing has been scant. The past several weeks, I've done the shopping by myself because we've needed to get it done quickly in between other events. Today was an exception, so Alice and I could go out. Alice, being 14, when into a disaffected huff at the very notion of having to go shopping with me when there was clearly TV to be watched. I asked her nicely while she was watching TV and she gave me a "but da-a-ad, I trying to do this!" and ignored my polite requests to shut everything off and come upstairs. I muttered, "OK, shots fired." under my breath and activated the kill switch the cuts power to the entertainment center. Countdown to teenage rage in 3...2...1... "DAAAAAADD!" Alice now comes storming upstairs. Both E and I let her rant, but E kept stressing that I had even said please 3 times. We sent her upstairs to go get dressed. Now began the crying jag. Mmmm...adolescent crying. I have seen this before and at this point, I think Alice's emotions run on a 4 speed transmission:

  1. Anger
  2. Crying
  3. Love
  4. OH IT'S SOOO CUTE!

And of course neutral.

So in this case, Alice jammed the shifter from first to second, barely engaging the clutch. I let her cry it out and then reminded her that she needed to do her things if she wanted to watch a movie later. Then she down shifted into first when she couldn't get her bra on. Upstairs trip for me to adjust it and then back into second gear for her.

I decided that rather than be an ogre, I was going to try and turn the shopping trip into responsibility day. I gave her a shopping list with all the items on it. When she came down, ready to go, I let her know. Squee! And now she jammed into third gear.

She had the whole list and did it all. Mind you, she took some time to flirt with the butcher and with another boy at the store who she knew, but that's Alice. For a lot of the trip I stood back and watched her do what she needed to do. She went to get lemons and she got a man restocking produce to get the lemons for her and bag them. I went up to him while she was putting them in the cart and said, "Thank you for helping her out. That was very thoughtful, but you know she just worked you, right?" "What? Was she supposed to do that on her own?" "Oh, she can, but she got you to do it for her." He shook his head and, "and she knows it, doesn't she?" "Yes. Yes she does." "I'll keep an eye next time." "Thanks."

At the deli counter, I told the woman who helped Alice that I think we're done getting the free sample slice of cheese. "She's 14. I think it's time we work on breaking that habit." "I'll get the word out." "Thanks."

It does take a village, doesn't it?

Alice did a great job shopping. We stopped at Trader Joe's and picked up some extra items and then had a Taco Bell lunch. Again, let's layer on some more responsibility. I chose not to get her a spork for eating the taco detritus, which of course Alice noticed. I sent her off to get it on her own, which she did. We ended up spending a lot of the day together, but afterwards I think Alice and I had about enough of each other and got back into prickly interactions, but it was good while it lasted.

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