Plinth Blog Special Needs Parenting

10Aug/171

Having a Child with Down Syndrome, Part CXXIX: Tiered Rewards

This week, E and Stuart are away on a vacation visiting the Florida grandparents. We did this because as Alice and Stuart get older, what they want to do and what they can do has become more divergent. In addition, we know that Stuart can often get the short end of the stick because of his sister's disabilities. To address that, some time with his grandparents without his sister will make a difference. Alice and I are together and we needed a way to give Alice some more incentive to be better behaved. I won't say well-behaved because quite honestly, her baseline is pretty good.

These days, Alice very often thinks with her stomach. So for her a big reward is going to a restaurant. So we picked Friday for that as a possible reward. The problem is that you don't want something like that to be a go/no go situation. That makes it high stakes and that ends up being hard on everyone. E has used tiered rewards in the past and that has worked well. I'm doing a variant on that. I made a set of cards for Alice, each acting as a rubric for the day:

Her 6 goals per day are:

  1. Not yours? No touch.
  2. No baby TV
  3. Shower - no playing
  4. No bickering
  5. No sneaking
  6. Follow directions

Now, I don't really like this list. Typically you want these goals to be written in the positive not a negative, but I was tired and Alice is OK with it. Most of these goals are a challenge for her, but she's capable of all of them. No sneaking sounds odd, but it's not. It means no sneaking food and no sneaking downstairs to watch TV. I've tiered it so that she needs to get at least 4 checks on a card. If she does, then I put a check on our menu list. If she gets 4 checks, on Friday she can pick a restaurant and we'll go eat dinner there. If she gets 3 checks, I'll pick the restaurant. If she gets 2 checks, we get take out. If she gets 1 or fewer, just a regular meal at home.

If you do this with your kids, you should expect that either the first day or the second day will be a total bust. I don't know why this is. Maybe on day one, the kids are just acting on novelty and on day two they decide to screw the boundary just to make sure it's really there and then when they see that it's their choice to make things succeed, they turn around.

Day 1 was great. Day 2? Not so much. In fact, Alice botched almost all of them. When we finished the review, and she was very honest about it, she said "It's OK, I do better tomorrow." And honestly, this was one of the most wonderful things she could say. She didn't dwell on not getting the checks, she turned to what she needed to do in the future. A younger Alice would have tried to check the boxes when I wasn't looking.

Of course, she started today by trying to sneak TV while I was showering, but she owned up to it and we went over the rules again. We'll see how it turns out.

Epilogue

Reward earned and enjoyed.

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7Aug/171

A Very Quick Parenting Tidbit

When I was a kid, we had a copy of the Whole Earth Catalog in the bathroom, which I paged through with eagerness. There was one section about parenting and there was an excerpt from a parenting book that talked about avoiding blame or questioning for blame and instead to speak to consequences. The example in the excerpt was instead of saying "who left out the milk?" (which encourages blame) to instead say, "if you leave the milk out, it will go bad." (which encourages responsibility). There were before/after cartoons of kids finger pointing (blame) and kids rushing to put the milk away (responsibility).

I've been at this for more than a decade.

"Wet towels left on the floor get stinky."

"Leaving lights on wastes power."

"Sitting that way will break the chair."

And the end result in this house is: stinky towels, lights I end up turning off, and broken chairs.

I don't know whose kids were in the cartoon, but they clearly care a hell of lot more than mine.

Maybe it will pay off in the future, but in the meantime I think both approaches are horseshit for actual results.

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6Aug/170

Having a Child with Down Syndrome, Part CXXVIII: Building Appropriate Independence

Independence is a scary thing with Alice. Ideally we'd like her to be able to do as much as she can on her own, but the problem is that she doesn't always have particularly good judgement. For example, if she wakes up at 4 in the morning, she thinks it's a good idea to get up, grab some ice cream and then go watch Pee Wee's Play House. Independent? Yes. Wise? No.

Alice has been on a cereal kick recently (gluten free rice chex). E started teaching her to do most of this on her own. She puts out a bowl of dry cereal, a cup of milk, a cutting board, a banana, a knife and a spoon. At this point, Alice grabs her own napkin, sits down, puts milk on the cereal, peels the banana, cuts it up, puts it on the cereal and eats it. This is totally awesome and is a good life skill. Pouring her own milk into the glass? We're not there yet. Pour her own cereal, not quite.

So when, at 6:00AM this morning, I heard the cupboard open, I interrupted my conversation with E and darted downstairs. Alice had gotten out the cereal and a bowl and was getting ready to start pouring. I interrupted her and got her to  a point where she could take over. Phew. Dodged that.

Today we did our usual shopping regime, but when I sat down to make the list with Alice, I had her pick some of the meals and think about what we would need. At appropriate times when I asked her a question she thought about it and replied, "I don't know." This is really hard for her since over the years the pattern has been "an adult asks you a question then you answer it no matter what." Saying 'I don't know' is new. After picking meals, we talked about what we needed to get for those meals and she typed them in. While in the store, she was naturally picking out what we should get next and was making good choices most of the time. When we got about 2/3 of the way through, she was listing off everything remaining on the list. Excellent process!

Our days are not without issues. Before we headed out she went on a crying jag and was lying on the floor weeping. For no apparent reason. I led her out of the house, tears running her down her face and got her in the car while her personal storm passed. On the drive to the store, she told me "I'm not crying any more daddy. I just happy." I told her that it was OK to be sad and that she could be sad without crying if she wanted to. I've also gotten my share of bald-faced lies followed by "but mommy told you".

And while I don't know if the judgement will ever get here, I'm certainly grateful for today's oasis of excellent behavior.

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15Jul/170

Having a Child with Down Syndrome, Part CXXVII: It Has Come To This

Alice has been raiding the fridge. It's a combination of several things:

  1. She's a teenager
  2. She has little self-restraint
  3. She loves food
  4. She gets up super early

Trying to catch her and enforce rules and consequences has made no noticeable change (probably because of #3), so we have now taken another tack:

Yup. Lock for the fridge. E found a nice bike lock with a silicone skin. Works like a charm if we remember to put it on before bed.

Post Script

I woke up at 2:35 in the middle of an intense dream - neither disturbing nor enjoyable, merely intense. I got up to get something to read and saw Alice's door open which is never a good sign. I went down stairs and saw the door to the basement closed, also a signal that trouble was afoot. I went into the basement as quietly as I could and Alice scrambled to grab a remote while saying "Da-a-ad!" (I think it was 3 syllables this time). I powered it off and informed her of the consequences and sent her up to bed, happy at least that I had the lock on the fridge.

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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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