Plinth Blog Special Needs Parenting

12Jun/171

Having a Child With Down Syndrome, Part CXXVI: Nails &c

Every once in a while, I take Alice out to get her nails done. This is tricky because Alice can't hold her stroke affected hand still. It's like trying to wrangle an octopus that has lost three of its legs. Alice's brother had a friend coming over and in spite of prepping her for this, Alice can be on him or his mom like a bee in a flower. I decided that I would remove her from the situation, take her to lunch and practice some self-advocacy. I wrote up a note card with the simple question, "Excuse me. May I have a gluten free menu please?" Alice picked up the card and read it with the delivery of a practiced sitcom actor. "Excuuse me?!" Not quite Steve Martin, but you get the idea. After I suppressed my laughter, I corrected her delivery and let her practice. On the way down, we got to practicing without the card.

Alice executed perfectly, but the greeter misheard her. After three repetitions, I had to intervene. Need to work on a back up plan. When the waiter came, I instructed Alice to please, "tell the waiter what you can't eat." She looked up at him and said, "I can't eat gluten." adding "It makes me sick." Excellent. High fives all around.

After lunch, we went to the (new for us) nail place. It was on the far side of the mall from us so we had a nice walk. Along the way, Alice talked about every store we passed and highlighted what we could get for her there. We found the nail place and went it.

I explained to the woman helping Alice that I needed to help her out. Alice wanted a decoration and asked for a flower with a stem and pollen. Pollen? Yes, pollen. So that is what she got.

Of course, when we got home, Alice was super tired and started letting into me. Great. I was tired too and time out-ularity ensued. I gave her a clear outline of a no-yelling time out and what would happen. And of course she spent the next 10 minutes yelling at me. She lost TV privileges as a result. After she finally calmed down I went up and had a Very Serious Talk with her about her behavior and that she was going to spend another 20 minutes thinking about it. When she came down she handed me this:

She explained that it said that I shouldn't have given her time-outs and not sending her to her room. I accepted it for what it was: an effort at honest communication. Certainly better than yelling at me.

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24May/170

Preparing an Old Body for the Falmouth Road Race

I've said this before - I really like running, but I'm a terrible runner and running hates my body. Pity.

So how do you convince an old body to do this? The same way that an ant can move a mountain: a little bit at a time. I've been actively training since the fall steadily going out 3 days a week. I have been doing "fast" intervals on Mondays and then longer distances on Wednesdays and Fridays, running for time not distance really. On Wednesdays, I run 2.5 minutes longer than the previous Friday and then on Friday 2.5 minutes longer than Wednesday. It's worked out reasonably well.

This is pretty much the highest point on my route. The first time I reached it was in the dead of winter - it was snowing on that day. I stopped briefly to take this picture three weeks ago before I continued on well past it.

This is on my way back. The bridge is just past the bend at the horizon. Bit by bit, little by little, at my slow pokey pace. I've gone from 20 minutes in February to 80 minutes in April. I'm hoping to get to 120 minutes by August, which should make running Falmouth easy by comparison.

As before, I'm running the race for the Massachusetts Down Syndrome Congress. You can make a donation here - it's a great cause.

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3May/170

I Remember the NICU Well, Jimmy

Jimmy Kimmel presented a monologue recently about the birth of his son, Billy. Here it is from YouTube:

There are a number of things that struck me about his monologue and they're all pretty awesome. First, his description of being taken through the process from suspicion of an issue to full on NICU work because of a detected heart defect is spot on. It's a real "deer in the headlights" moment when the sorting hat of fate decides that you're going into NICU House. Second, I love how he has the wherewithal to thank so many people off the top of his head and just to make sure, he also pulls out a list. Third, I like that he showed the picture of his son all hooked up to wires and tubes and machines to present the reality of it. Fourth, he didn't hide his son's diagnosis. Fifth, and most importantly he presented his experience as a teaching moment for the importance of insurance and access to good healthcare, and he did so in a way that was hardly partisan and more of an appeal to reason. The final sum is terse but effective: "If your baby is going to die and it doesn't have to, it shouldn't matter how much money you make."

Earlier in the day, I tweeted that he now had something in common with about half the parents of kids with Down syndrome. This is because the incidence of heart defects in the Down syndrome population is around 50% and other issues certainly will drive that higher. 14 years ago, when my daughter was born, a blood clot broke free from the placenta, when into her heart, through the atrial septal defect (ASD) in her heart, right up the carotid artery and into her brain, broke apart and lodged in the frontal and parietal lobes and the pons. In other words, my daughter had a stroke that has colored her life since then. And that wasn't all. She had pneumonia, a suspected infection, oh yeah - and Down syndrome. This was a huge amount to take in as a new parent. There are so many decisions to make and for the most part you have to trust what you're told by the doctors and nurses.

Here she is hooked up to oxygen and heart monitors and an oxygen saturation meter. Zoom into the picture. You can can see that someone when to the trouble of making the sticky pads for the heart monitor "kiddie". There's one shaped like a ducky and one has a frog, another a whale. It's not necessary, but in the moments of worry, it was oddly comforting to see the design whimsy.

When I took pictures in the NICU, I tried to make them honest. It really wasn't pleasant and I know that even though Alice spent 3 weeks in the NICU, we had it far easier than many of the other parents and babies. Alice didn't need surgery, she was good-sized, she was thriving.

They put in an IV in her foot. They moved it to other spots during her stay. Don't ask me how they managed to find the tiny little veins through the baby chub.

This is me in one of my earliest parenting experiences. E had just fed Alice and I held Alice while E covered up. This is a piece that Jimmy didn't mention. Every time you enter the NICU to see your child, you have to spend a minute scrubbing. They have a sink with a timer. You soap up and wash until the timer says it's OK then you have to wear a gown and a mask. I understand the need of doing that, but it's still an in-built deterrent to seeing your child. That and unhooking the wires and hoses.

This is a picture of Alice after she came home. You can see that we weren't free of hospital apparatus. Alice needed oxygen and a little cannula. We had a big tank upstairs that had a bubbler unit to run the oxygen through sterile water to keep it from drying out her nose. We got enough tubing so that she could sleep upstairs or downstairs. Pro-tip: don't tape the tubes to your baby's face. Instead, put down a patch of tape on her skin then tape the tube to that. The patch on the skin will stay on much longer whereas the patch holding the tube comes off frequently. Taping to tape reduces skin rawness from tape being constantly pulled off skin. The hospital wanted to send us home with an oximeter. From what I saw in the NICU, the oximeter was a machine built strictly to generate false positives. I saw them going off all the time in the NICU and never once did I see it happen for true positive issue that needed attention. You want me to babysit one of those? No thanks.

In the same way that Jimmy did, I want to thank Dr. Duda (pulmonologist), Dr. Gilmore (neurologist), and Dr. Steele (hemotologist), and Bonnie (nurse). All these people I remember, 14 years later and I'm terrible with names. Dr. Steele left his specialty shortly thereafter and became a general pediatrician and he now sees both our kids. At the time, both E and I were teachers and neither of us had enough sick time for this. I want to thank the Hatfield Teacher's Union for giving us time from their sick bank. When I finally quit teaching, on the way out I donated all my leftover sick and vacation time to the union rather than collect it. I felt I owed them that much.

As for insurance, like Jimmy, we were lucky that we had insurance through our jobs. Unfortunately, Blue Cross sent us a "sucker bill" every month for the following six months where they would bill us for some random procedure/equipment that was tied to Alice's birth. Our policy said that birth and all complications were covered at 100%. So every month I would call in, wait on hold and talk to a rep, get the charge voided and then get a confirmation number for the call because after the second one, I knew that I would need these to make the process of calling bullshit faster next time. And I consider us lucky to have to have had to only jump through that irritating hoop. And this is why the United States needs medical coverage for as many people as possible, if not everyone. Illness and injury are already traumatic; there is no reason to add more trauma about paying for care when it is not necessary. Especially for children.

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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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21Mar/171

14!

This is not a writing post. This is just a picture post. My daughter is 14 which is hard to believe (said every parent ever). Alice was born on March 20th, the day before World Down Syndrome Day. Why is March 21st World Down syndrome day? Because it is 3/21 which is a shorthand for Trisomy 21, the more formal name for Down syndrome.

This is Alice opening a gift - see her using two hands? Gifts are great for that.

We opted for 1 candle instead of the 14 candle fire hazard. I'd intended to get those large number candles, but they didn't make it onto my shopping list. So instead, I printed out a nice 14, cut it out and used it as a stencil with cocoa.

Alice requested vanilla cake with vanilla ice cream. It is, of course, gluten free and I knocked together a quick vanilla buttercream frosting.

How can you not be happy on  your birthday?

E knitted Alice a nice shrug and she's wearing a bracelet that her brother made her.

Happy birthday Alice, and happy World Down Syndrome Day.

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7Mar/170

Having a Child with Down Syndrome, Part CXXIII: More Cooking

In our current society in the United States, it is not necessary to be able to cook beyond operating a microwave. Unfortunately, most of what you will get from experience will be unhealthy, expensive, revolting, or all three in some measure.

Cooking for Alice, in theory, has an additional challenge: no gluten, as she has Celiac disease which comes along with Down syndrome at a rate of 7-16%. In practice, it's not that much of a challenge if you are prepared to read labels and to cook from scratch ingredients most of the time, which is something that we have done in our house anyway, so it's not so much of a big deal.

Every couple of weeks, I try to do some cooking with Alice, usually from a recipe and at her current state of development, she can read a recipe if she concentrates but needs help following every step. So I give her the recipe and let her tell me what ingredients I need and I get them out. It's not a complete mise-en-place, but it's close enough. I think that in my copious spare time I could rewrite recipes to be more accessible for her, but sometimes you just have to work with what's in front of you.

This time around, I saw a recipe from Alton Brown for oatmeal banana bread and it looked like it would be a good candidate for modification to make it gluten-free. The first thing to work with is the oats. Oats are in theory gluten free, but may be processed in a facility that also processes wheat and that's no good. Also, be aware that some people with Celiac disaease also have problems with oats because of the gliadin protein. So we started with Bob's Red Mill Gluten Free Oats.

which will at least be free from cross-contamination. Then we set up my pseudo mise:

For most recipes, a mise-en-place doesn't help me, but I'm not doing this. Alice is doing it and organization will set you free. Brown's recipe calls for all-purpose flour, but we're going to use Namaste gluten free flour. No GF flour will ever be a perfect substitute because of the missing proteins, but for this recipe it will work because banana bread is not bread. It's cake. Cake has different requirements and textures and GF flour is closer to cake flour so it is what is.

I had Alice work through the steps and tried to get her to do as many of the steps as possible.

The food processor is a little scary because this is not a device that I want Alice to try to use on her own, but it requires 4 separate steps before it runs, so I'm pretty sure that she won't be able to do this on her own.

I let Alice inspect the batter after each egg and let me know when it was all mixed in.

Here is where the rubber meets the road. Alice didn't want to work her stroke-affected hand, but I'm sorry, she needed to peel the bananas with two hands (works so much better). And hey look, I chose the bowl with the handle on it because mashing bananas is fun and even better when you need to use two hands.

Batter goes in pan.

Loaf comes out of oven to cool.

And into slices.

And it's nice when it gets served with a nice dollop of whipped cream.

In the end, Alice and I got to spend time together that was a positive learning experience for her and time when she's not actively yelling at me. And it was delicious.

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3Mar/172

Not Sure Where This Goes

A human being should be able to change a diaper, plan an invasion, butcher a hog, conn a ship, design a building, write a sonnet, balance accounts, build a wall, set a bone, comfort the dying, take orders, give orders, cooperate, act alone, solve equations, analyze a new problem, pitch manure, program a computer, cook a tasty meal, fight efficiently, die gallantly. Specialization is for insects.

-Robert A. Heinlein

This is not a special needs parenting blog per se. It doesn't fit in my tech blog either, but given the two it feels like it fits better here. I've read a ton of books and for authors that I like, I usually try to read their entire work. I've read a lot, but not all, of Robert Heinlein. There is some of his work that I truly like, but he's hit-or-miss. This quote is one of my favorites, though. When I was taught technology in Hatfield, I put this quote up on my walls going around my room with one item on a single piece of paper. At present count, I've done 15 of these personally, just shy of 80%, which I take as a matter of pride.

Another thing that I take as a matter of pride is cooking for my family. Part of it comes from a Yankee stinginess wherein I know that I can feed my family is a way that is frugal and healthy. Part of that is a product of my upbringing. My mom, quite honestly, was not a terrific cook, although there were some things that she cooked quite well. What I mean by this is not what my mom cooked, but rather the things to which we had access. When I was young, there were two chefs that I saw on TV: Graham Kerr and Julia Child. I remember a time when Julia child did a recipe for Chicken Kiev. My brother Pat spotted it and mapped out every time when it was being broadcast. He watched it at every available time and took notes and then made it with help from my mom.

When I was in college, I watched Jeff Smith (the Frugal Gourmet) and once in a while, Martin Yan. From these, I tried new things, some which worked and some which didn't. Both the successes and the failures were learning experiences and encouragement to try more. When I was moved to Silicon Valley, I discovered farmer's markets, which were a fantastic source for fantastic produce. Inevitably, I would buy too much. So what do you do? Throw it away? Of course not - I took up canning. In one year, I remember that I canned something on the order of 10 gallons of jams, jellies, and chutneys that I gave out as gifts as well as enjoyed at home. I was inspired by a co-worker, Treve Bonser, who made fantastic pastries and sweets and brought them in to work. I asked him why he did this. He said that once in a while he wanted a cookie, but you can't make one cookie so he brought in the rest.

All of these things were formative experiences.

So here's what I've got tonight. I roasted a chicken for dinner - no big deal. After we were done I put the carcass into the slow cooker along with wilty vegetables from the fridge and some herbs, topped it up with water and set it go. When it's done I'll have close to a gallon of chicken broth which is way, way better than anything that you can get in a can. More often than not, I end up with something close to chicken gelatin when it cools. Then comes homemade soup. Why? It tastes good, it uses leftovers and has way less salt than anything you get in a can, and quite honestly, making soup doesn't take that long. Or I'll use it to make rice. Or as a basis for a sauce. Chicken broth is like a 2x4, just waiting to be used for any number of things.

And then there are the sales at the store. Our local grocery store often does "buy one, get two free" sales. I keep my eyes open for those and do my best to take advantage. For example, last week they mushrooms for sale. So what do you do? Can them.

Mushrooms, garlic, onion, peppercorns, salt, vinegar, water turn into a jar full of umame.

And all of this I take with pride. I do my very best to provide my family with healthy food cooked from good quality ingredients that are, if possible, grown locally (and many times from our back yard).

Why yes, my house is a mess. Why yes, I'm routinely behind on home maintenance. Why yes, there are three loads of laundry that need to be folded.

You pick your battles and you set your priorities as you see fit. This is how I've set mine.

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