Plinth Blog Special Needs Parenting


Falmouth Road Race Wrap Up

This was my third road race and I think it's going to be my last, but more on that later.

To start, this year you helped me raise nearly $3000 for the MDSC. This is a fantastic thing and I couldn't possibly be happier with the results. I'm especially touched by my co-workers who descended in droves to donate. The entire team of runners for the MDSC raised over $56,000. This is awesome.

Here's what the road race is like for me as an MDSC fund-raiser: E's mom lives in Falmouth, so we go down on the Friday night before. Saturday morning, I head to Falmouth High School to pick up my bib and check out the running trade show. Midday, the MDSC hosts a luncheon for the runners. This is a nice time to touch base with other parents and see what other parents are experiencing. They give the runners their singlets and a nice gift bag. When I picked up mine, I announced to the other runners where they could stop for a high-five from Alice on the route.

On race morning, E takes me to the junior high where they have shuttles to Wood's Hole where the race starts. I bring some food with me and about a half hour before the race, eat as much as I can and drink as much water as I can manage. I hang around the back of the pack because I'm slow until the race starts. I usually cross the start line about 40 minutes after the race has begun. This year, I had a nice chat with a woman who was pretty sure that this was going to be her last FRR since she was 80 now. She barely looked 70. I was very impressed.

I had trained for over a year for this race and got to the point where I was running three of these races per week. This was the best I had done in training and I got wiped out around mile 3. I can't say why other than the first 3 miles are hilly and it was extremely hot and I couldn't cool down. I walked the rest feeling very nauseous and dizzy. One of the reasons why I love this race is that in the last mile, there are tons of people who are done with the race who saw me and said, "You got this, Steve!" I heard that a lot and it helped. I struggled my way to the finish at a slow jog and then went straight to the medical tent. They put me in a wheelchair and took me to a pad on the ground where they took my temperature, which was 102.8F. This is not so good. They helped me to a cot then covered me with towels that had been dunked in ice water until my temperature came down. On the good side, the doctors didn't put me in an ice bath (and yes they had those set up). On the good side, I wasn't running a 108F fever like the woman who ended up heading to the hospital after an ice bath. I chugged a quart of gatorade and a pint of water and when my temperature and BP were stable, they let me go with a new, dry shirt. I walked 3/4 mile to a nearby store, called E and waited for her to take me back to her mom's house.

I had time to think about this. I finished about 10 minutes slower than my training pace. I felt like crap for 4 miles and for the second time I finished the race in the medical tent. The conclusion is simple - much as I love running, this race is just too dangerous for me. I have a family that depends on me and it is in everyone's best interests to make sure that I stay in good health. This means that I keep running for sure, but just not this race. Two trips to the medical tent is enough for me. I can and will find other ways to help the MDSC that aren't so risky to me and my family.

If you donated, thank you very much - you're the bomb!

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Having a Child with Down Syndrome, Part CXXX: Comic Con Success

One day recently when I was in my local Comic Book Store, Modern Myths, I saw a flyer for Boston Comic Con. I knew that E and Stuart would be out of town on that week, but I thought it might be a good end of week event for Alice and me. I bought tickets and started to make plans for how to best manage this with Alice. There's a lot to unpack here, so bear with me.

First, if you're looking for how to do this with your child with disabilities, then your best guide is is how well you know your child. Alice is a very social child with a deep love of fantasy and movies. She also has only so much stamina and can get easily overwhelmed from excess stimuli and can have difficulty overriding her desire to touch things and people. A week before the con, I talked to her about what we were going to do and when and what we would see there. A day before, I reminded her of it and we talked about what we would be likely to see: artists, their pictures, people in costumes, sessions and so on. We talked about how it was OK to look, but if we wanted to take pictures we had to ask. We practiced a simple script for asking politely. We talked about not walking off. We talked about listening. We talked about using words. We talked about that the event was going to be crowded and noisy.

The next morning, we got up and had breakfast and got ready to go. First parenting trick, I took from E, have sharpie, will travel:

I wrote my phone number on her arm just in case we got separated. Next, packing. Con food can be problematic and expensive, so I packed a snack, a bottle of water, and some gluten-free hamburger buns. Alice decided that she wanted to bring some magazines with her in the car, so she grabbed a stack and we headed off. In the car, we reiterated the talk we had the night before. Alice remembered a lot of it.

When we got there, we talked about lines and waiting, and patience. We looked at the schedule and talked about what we would do. I wanted to meet with some of the artists, Alice wanted to go to a cosplay makeup session, and we had a photo op scheduled around midday. I titrated the snacks into Alice so she would make it after the photo op and we enjoyed seeing all the people in costumes.

Alice was terrific. She told me when she wanted to look at something or someone in costume. When she wanted a picture, she asked and the cosplayers were very kind in that regard. Most of them were very taken with her like Aquaman:

He gave her his trident to hold. And then there was Thor:

This man was huge - probably 6'5" and we took a couple pictures and when I suggested that Alice might be worthy to wield Mjolnir, he acted completely surprised that she was.

We scheduled down time. We went to some sessions about makeup and cosplay body image. Alice listened, but probably didn't get much out of them other than the opportunity to be in a much quieter room and to sit for a while and quite honestly, that's not nothing.

We also did a meet and greet with Felicia Day. I explained what would happen. I showed Alice pictures of her. Alice said, "She's so pretty and she's smart and she likes to wear costumes."  Felicia Day, who is an actress, runs Geek and Sundry, which is an online presence for entertainment productions for and by geeks. One thing that stands out in her organization is the large number of women in prominent roles. While I'm sure I don't know all the detail, what I see is someone who actively opens doors for women who are more likely than not to have had doors shut. This is a great thing.

When it was our turn, Alice ran in and went for a hug. I stepped to the other side of her and expressed my thanks and the reasoning that when she opens doors for other women, she is likely indirectly opening doors for people like Alice. Think about it, if someone creates an opportunity for you where culturally and historically you've had them taken away, wouldn't you be more likely to pass that on? Alice started to bolt off, but Ms. Day said, "Oh my God! That's so nice!" as I was catching up with Alice. As I caught her, I turned around Ms. Day was setting up for the next group, but she caught my eye and we exchanged brief smiles of, I think understanding.

(Mental note, Steve, when you put your arm behind your back it makes your stomach pooch out)

As the day went into afternoon, Alice was clearly tired and I suggested we go. She agreed and we started our long walk back to the car. We stopped for water and looking ahead at the distance (it was about 1/4 mile), I set landmarks for places where we could stop. At one point Alice said, "I need to take a break. I sit down and drink water and enjoy the air." She told me one foot was bothering her, I took off her shoe, orthotic and sock. The sock had bunched up a little bit, but her foot looked pretty good, so I had her put her sock back on and after some water, we moved on.

During the day, I applied near-constant specific praise to Alice: good using words, good big voice, good following directions, and so on. Lots of high-fives and fist bumps. Lots of hugs. I let her pick where we went and what we looked at. I gave her a fair amount of leeway while still setting appropriate bounds.

I don't know your child, but you do. With that knowledge, planning, consideration and understanding you can have a successful trip.

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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.


Reward earned and enjoyed.

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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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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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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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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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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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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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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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