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Having a Child with Down Syndrome, Part CXLVIII: Perseveration

This is something that I wrote up on twitter last night, but I thought I’d put it here for posterity.

What it’s like to live with someone with frontal lobe damage. My daughter had a stroke at birth. It made a wreck of her frontal and parietal lobes and her pons. One result of that is perseveration. This means that frequently she gets stuck on things and won’t let go.

For example, she will repeat her daily schedule until she gets attention for it. You think, “oh, that’s not bad. All you do is say ‘right’ and she’ll move on.” Oh you sweet, naive child. Where it gets problematic is in a few categories:

  • when something is coming up, but it’s not today
  • when she injects fiction into her schedule (what she wants vs. what’s there)
  • when her schedule changes

An example of the first is a vacation. In the before times, CostCo had a great package for a vacation that we took. The problem is that Alice has zero sense of time. For the two months prior we had to redirect her multiple times per day that she didn’t need to pack. That gets old so very fast. Why don’t you just not tell her? Not possible always. She is likely to go to a sleep away camp this summer to learn independence. This is a big deal and the camp needed to meet her. So she knows and is excited. But that’s sweet, right? Kids should be excited to do things like that. Sure! But we get that multiple times per day now. Is it really that bad? Yes. When she has another task and instead empties her drawers to pack. Now that needs to get cleaned up. But you can use a calendar to help her see the passage of time! Been there, done that. It doesn’t help.

An example of the second is when you have to take her somewhere (say a doctor’s appointment) and she demands, “and now we go to a fancy restaurant”. Easy. Use a patient response, “aw, what a sweet idea! We can’t go to a fancy restaurant every day. We’ll have lunch at home.” But it doesn’t stop because she gets stuck on that and just keeps repeating the demand. And it’s not a request. It is very much a demand. I don’t know if she’s trying to wear us down or not, but she will keep pushing until you lose your temper.

Then there’s the schedule change. Things change. It happens. But Alice doesn’t shift gears well. For example, her school schedule is fairly consistent, but on 2 days she has services so she misses 1 period. Even though she has had this the whole year, she flips out that she doesn’t have 3rd period, even when she gets reminded several times in the morning. Really upset. Like tantrum upset where she is out of school for the rest of the day upset.

So that brings us to tonight. Alice was supposed to do a Zoom meeting with Best Buddies, a group of kids at school that get together and do activities with kids with special needs. Alice set up the Zoom link and waited. So I offered to help. She probably pulled the link from an old email and it was stale. I offered to help. NO DAD! I SIT AND WAIT! I tried to explain that she probably had the wrong link and I could help her get the right one. Nope. I’m in Best Buddies dad! Uh-huh. I explain the consequences: you’ll wait the whole time and Best Buddies won’t happen. Nope. Won’t hear it. But Alice listen. Don’t you want to have Best Buddies? Yes? OK, I can help you. NO DAD! I SIT AND WAIT!

I stopped trying to help. My spouse came by and tried the same tactics as me. Alice chewed me out instead of listening. Really. And you think, don’t you just let her suffer the natural consequences of her actions? Good parenting, right? Oh you sweet summer child. The time slot ended and now her expectations weren’t met. I reminded her of what I said and how lo and behold it came to pass. Instead she bickers about the time and out and out lies to me about the circumstances. “I know you’re disappointed, but you had the wrong link and wouldn’t listen.” DAD! I TRYING TO LISTEN! No, not so much. It took 15 minutes to talk her off the ledge and that was shorter than I expected, but it was still 15 minutes of high stakes negotiation.

Why did you have to even be in the same room with her? Because when left to her own devices, Alice goes unpredictability non-linear. 10 minutes after she went up (routine), I smelled artificial strawberry. She had gotten ahold of Febreeze and unloaded it upstairs. So no, that wasn’t an option in a room where she has ready access to the stove.

So now you have a picture of what it’s like to live with someone with frontal lobe damage. It’s why I have this. It helps remind me when my patience gets thin.

a tattoo that reads "I can do this all day"
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Having a Child with Down Syndrome, Part CXLVII: Pandemic Parenting

I learned about the 1918 flu pandemic as an adult at a point when I read an article about someone was excavating grave sites of people who had died from it and found samples that could be analyzed. I read some tangential information about it and discovered just how horrible it was for the world. The scope was mind-boggling and I was shocked that I had never heard about it until then. I never imagined that I would see a pandemic of similar scale, let alone be a parent of a child with special needs through it. If you’re looking for a cheerful, positive, heart-warming essay about parenting a child with special needs, this isn’t it. If you’re looking for honest, raw, and thoughtful – well do I have just the thing for you.

Alice, a young adult with Down syndrome in a blue top

How is parenting a child with Down syndrome in a pandemic? In short, it really stinks. There are a number of factors at play and some of them are unique to the members of our family, some are part of Alice’s personality, some are a product of her age. I don’t know how much are part of her disability.

First, let’s list some of the ingredients in this chowder:

  1. I’m an introvert. I really need time alone and quiet time in my head to recharge. There’s not a lot of that available, so it’s hard.
  2. E is an extrovert. She really needs time with other people to recharge. There’s not a lot of that available, so it’s hard.
  3. Alice is an extrovert. She also needs time with other people and has lost almost all of her social time.
  4. Alice routinely treats E like a possession rather than a person, and now with nearly 24 hour access to E, this makes it especially hard because Alice is relentless and we’re at a loss as to how to get her to modify her behavior.
  5. School via Zoom is like Alice is watching a TV show except that they’re all people she knows and can interact with and it’s a show made just for her. Her behavior in class is appalling to me because it feels like it takes constant monitoring to keep her from being awful.
  6. Alice is 18 (how is this possible, by the way. I mean, wasn’t it just last week that she was born?) and is being rebellious. This includes ignoring parental warnings of consequences, yelling, slamming doors, and behaviors that you would never tolerate in a mere acquaintance let alone someone you love.

So yeah, all of these things make Lousy Chowder. If that’s what you’d like for dinner for every night for more than a year, this is how you get that. It’s exhausting.

Meantime we’re worried about Alice. She shouldn’t go to school because she’s immunocompromised and not fully vaccinated. Even after, I’m wondering if it’s a good option because it will be a big transition with not a lot of time for the payoff. She should have been doing vocational training in the past year, but clearly that couldn’t happen, so we’re behind on that too.

We’re looking at options for how she could live as independently as possible because after this year, it’s clear that living with us long term is probably not healthy for any of us. The waiting list, which we’re not eligible for yet, is measured in years. At least that gives us time to try to prepare her for the reality of living with people who aren’t her family members and learn how to debug that.

In January 2020, in the before times, I got this tattoo:

Captain America Shield tattoo
A tattoo reading "I CAN DO THIS ALL DAY."

It’s a reminder to me about being a parent of a child with special needs. When things get especially rough, I look down and take a couple of breaths.

Not too long ago, I added a matching one to my other arm (yay! fully vaccinated!)

A tattoo of Mjolnir, Thor's hammer surrounded by lightning.
A tattoo that read "WORTHY."

I commissioned Tana Ford, an award-winning artist and all around wonderful person, to do the art work. This is also a parenting reminder. Worthy of what? Well that depends on the day. Some days it’s a pat on the back for making it through the day.

tl;dr – parenting a child like Alice through a pandemic has been challenging and stressful. Sometimes, it’s easy or at least straight forward. Most of the time, it’s like being asked to clean the Augean stables. And there is very little respite. We have PCA hours allotted by the state. Using their algorithms, they’ve determined that we’re eligible for 9 hours and 15 minutes of assistance per week – and we had to cut off that assistance for several months until we got a good idea of what the risks of the pandemic were and how to mitigate them. At least now in stasis for that.

This too shall pass, but it has not been an easy time and as hard as it has been for us, I know that other people have more challenges than we do. But honestly, that’s small consolation because everyone’s hardest problem is their hardest problem and this is ours.

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Having a Child with Down Syndrome, Part CXLVI: Cunning Plans

I haven’t written much here in the past year. If you’re wondering how the pandemic is going when you’re effectively locked down with a child with Down syndrome who has immune system issues, well my post history is a pretty good litmus test.

Alice had watched a little TV this afternoon. I called her up for a dinner that was a little on the late side and we sat down for some baked potatoes and mashed cauliflower. Alice excused herself to go take a shower and like many evenings, took her own sweet time. After finishing up, she came down close to her bed time with wet hair. Our standard is dry hair, so I sent her back up to do that properly and to finish her evening ablutions. Alice, of course, immediately angled for more TV time.

Almost 20 years ago, I heard an interview on NPR with a professional negotiator. The interviewer asked him who was the toughest type of person to negotiate with. Without hesitation, he said kids because they have absolutely nothing to lose and everything to gain in a negotiation. Alice was clearly working from this playbook because she immediately went straight to a hard demand. I told her that it was getting past her bed time and she hadn’t done her jobs, so no. “Daddy, I go upstairs and dry my hair and come back and watch TV.” E told her that it was getting late and reinforced that she should get ready for bed. She headed off and gave us another parting demand for TV. I turned to E and said, “I don’t think you’ve thought your cunning plan all the way through.”

7 years ago, or so, we had an issue with Alice sneaking down in the middle of the night and watching TV, so I put the entertainment system on a IOT switch that lets E and I turn it on and off from a phone or tablet. While Alice was drying her hair, I switched off the power. Alice finished drying her hair, came back down and went to the basement to watch TV. Again, I turned to E, “Cue the yelling in 5, 4, 3…” “DADDY! YOU TURN THE POWER ON NOW!” I reiterated to E, “Again, I don’t think you’ve thought your cunning plan all the way through.” Alice came storming upstairs. “Daddy! Your job is to give me your phone and I turn the power back on and watch TV.” And this is one thimg about this that is so refreshing with her. She tells you exactly what she’s planning on doing ahead of time. Bold move. I looked her straight in the eyes and said simple, “no”, locked my phone and put on it’s charger.

At that moment, the dryer signal went off because we had washed Alice’s bedding and he comforter needed another round. I got up to go get it. Alice darted in and picked up my phone and immediately started punching in numbers.

She was just mashing numbers at random and at warp speed. I just started laughing because it was absolutely comical. Honestly, there was no way that she was going to infinite monkey my unlock code, but it wasn’t stopping her from trying. I kept laughing to myself then I started saying in my best neutral computer voice, “access denied. Access denied. Access denied.” After I was done amusing myself, I walked up to her and handed her the comforter and put my phone back on the charger.

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Having a Child with Down Syndrome, Part CXLV: Tools

A couple weeks ago, Alice wanted “Daddy/Daughter Time” and I had planned to do some work in the shop. I asked her if she wanted to do that and she agreed. It went well, so we did it again today.

Safety first: Alice is wearing glasses and has ear plugs. I had to trim the plugs to fit her smaller ear canals, but good enough.

So what can you do? For the first try, I had her doing some basic things: helping mark pieces that I cut, holding things that can be tricky with only two hands, helping clean up (which she really enjoys). For the second try, we did all of that and a little more. I had her put glue on some parts and then taught her to pin them together with a nail gun. Nail gun? Yes. The most important thing that led me to make that decision was her ability to listen and follow directions. For example, I made a rule that whenever I did a cut on the table saw, she had to keep her hands behind her back. So with the nail gun, there is a two-step safety. The trigger won’t work unless the nose switch is pressed down. So I showed her how to hold the gun with a finger nowhere near the trigger and to only put your finger on the trigger when you were ready. I shot in several nails so she could hear the noise and wouldn’t flinch. That took several tries. Then we did a hand-over-hand where I held onto the body of the gun and controlled the nose safety and let her pull the trigger. Perfectly safe.

What really makes this work is that she has some interest and she’s motivated. So in order to do this, it involves thought as to what you’re willing to try while gauging the risk. Then comes the clear communication and setting expectations at each step in the way.

This is a list of things that Alice has done with me:

  • Sanding
  • Marking lines
  • Turning on the shop vac for the router dust collection
  • Sweeping up sawdust
  • Applying glue
  • Tightening clamps
  • Holding pieces

Today, Alice’s patience ran a little thin after a bit today and she told me so, so I transitioned her into going inside and again set expectations so I could go back out and finish up.

In a way, I see the process as being similar to jazz. A song has a particular structure, but once you get going you don’t know if you’re going to follow that structure closely or if it’s going to be improvisation. With safety being an issue, clearly more structure and communication is needed, but if she asks to try something, most of the time the answer is going to be yes.

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Having a Child with Down Syndrome, Part CXLIV: Two Hands

As I’ve mentioned before, Alice had a stroke when she was born, which has made two-handed tasks super difficult. In the past 4 moths, there has been a new skill that has come on line: Alice is now cutting her own food with a knife and fork, and honestly I couldn’t be more surprised by this.

Here’s why – we’ve tried at various points over the years to help teach her to use two hands to cut her food and failed. It was just frustration for everyone involved. Then out of the blue, Alice decided on her own that she wanted to do this. I don’t know what clicked for her, but she was adamant that was what she wanted to do.

She uses her weak hand to hold the fork straight up and down and then cuts with her good hand. It’s not without its frustrations. Alice needs cues to cut things into smaller pieces so she doesn’t choke, and yes, she’s choked a couple times, but this is still a big milestone. She was clearly motivated and that paid off.

And that has paid off in other places as well. We got a puppy this spring and we’ve been teaching Alice how to train it and how take care of it.

Ignore that her mask dropped below her nose. Yes, we work on that. Instead, look at her hands. She’s using her right hand to adjust tension and is keeping her strong hand as a backup on the leash. She’s clearly very proud of what she’s doing and again, motivation is a big part of this. Way to go!

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Having a Child with Down Syndrome, Part CXLIII: Pets

When Alice was born, we had 3 pets: a dog and two cats. The pets were all up in years at that point and it was very interesting to see geriatric pets figuring out a newborn. They all did well.

After they passed on, we held off on replacing them because parenting a child with special needs, and then her brother was challenging enough. For the past 6 years we’ve had a couple of fish tanks set up and they’ve been a nice backdrop to our house, but E really wanted to get another dog. They problem is that dogs tend to be very high energy and Alice is not. That’s quite an impedance mismatch in our lives, so we sat on it for a while.

With the pandemic, we decided that this would actually be a good time to manage the responsibilities of a new pet, so E did a ton of research on dog breeds to find one that would be good for us. There is a lot to be said for rescue dogs and under different circumstances, we would have been quite happy to explore them, but we felt that the trends that are present in various breeds would work well for us. We selected the Cavalier King Charles Spaniel.

We did a fair amount of pre-talk to set expectations with Alice and to prepare her for the realities. I was also a little nervous because it’s been a very long time since I was involved in raising a pup.

This is Melody. She is a very tiny pup with an incredibly sweet disposition. She’s a little shy and a little clingy, but I think that works for us. Alice likes her a lot and enjoys having Melody in her lap.

Puppy sitting in the lap of a young woman with Down syndrome who is decorating a sidewalk with chalk

Alice talks to her a lot and enjoys the time that she spends with her. Generally speaking, Alice is also pretty good about listening to adults with regards to guidance for training her. When Melody gets nippy (as puppies do), Alice is clear about how that’s not OK and offers her something else to chew on instead. Perfect.

And like all things special needs, there are surprises along the way.

A young woman with Down syndrome signs 'r' for a puppy sleeping in front of an iPad

This is Alice sharing her school work with Melody. See Alice’s left hand? She’s signing ‘R’. She was spelling out “F-I-E-L-D T-R-I-P” that’s on her iPad to share that with Melody. Today, she was trying to teach Melody how to spell ‘monkey’. I tried to explain to Alice that dogs can’t sign, but Alice had none of it and kept it up for 20 minutes. It doesn’t hurt, so fine.

Myself, I’m positive about the experience – I’ve had a few nice solid belly laughs from her which more than offset the extra responsibilities of taking care of and training a new pup.

The face of a Cavalier King Charles spaniel puppy in the grass between twos hair legs.

It doesn’t hurt that she’s adorable. I mean: Look. At. That. Face.

What does this hold for the future? I don’t know, but everyone is enjoying this so far.

A Cavalier King Charles Spaniel puppy staring out a doorway.
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Having a Child with Down Syndrome, Part CXLII: When the Going Gets Tough, the Tough Get Weird

A Quick Joke

Q. What do you get when you cross a Mafioso with a Dadaist?

A. Someone who makes you an offer you can’t possibly understand.


Alice perseverates on things more than we’d like, and quite honestly it gets draining. One particular thing is that if I go somewhere with her, one of her first questions in the car after I explain what we’re doing is “and come back?” And it’s not enough to pretend like the question was never asked because she will persist until you respond in some way. “Of course we’re coming back later.” Doesn’t work. “What do you think?” Nope. Raised eyebrow with a smirk? Nope. The question just keeps coming.

A few months ago, I just decided to get weird on her. “And come back?” “Nope! We’re going to Wyoming to punch some cows.” This completely derailed her. “Why?” “They know what they did.”

Today was another day like that. I took her bowling, which was a good way to kill an hour. And like clockwork, “And come back?” “No, Alice. Never. We’re going to Norfolk to launch submarines. They need to take care of the aardvark situation in the ocean. The aardvarks swim up pull you down and eat off your arms!” “Yuck!” “They’re the terrors of the deep!” “What about sharks?” “Who said anything about sharks? Aardvarks will pull down an entire boat just to eat the arms off of the people on board. That’s why we need submarines.” “But sharks?” “No! I never said anything about sharks. They leave the aardvarks alone and the aardvarks leave the sharks alone.”

After bowling, Alice asked if we were going to Norway. “No Alice, Norfolk. Aardarks don’t live in the oceans in Norway. They’re in Norfolk.” I explained again. Now she was excited to do. “And mommy and Stuart?” “No, we need to launch the submarines.”

&c.

And now you know why I don’t like swimming in ocean. Damn aardvarks.

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Having a Child with Down Syndrome, Part CXLI: Even More Cooking

Alice now has a personal care assistant (PCA) most afternoons, which is great because I need to work and E is in school, so we need to have the coverage. There are times when that doesn’t always work out, like today. Alice’s PCA called in sick, so I had to cover. It happens. The trick to this is to accept that there’s no way for me to continue with my work and that I need to focus on how to spend the time with Alice. Together we made a list of things to do in the afternoon which included a bunch of cleaning tasks and making dinner. I had a frittata on the menu which I do without a hard and fast recipe. The trick was figuring out how to break it down into tasks that she could do both safely and effectively and the tasks that I would do:

Alice Tasks

  • Grating cheese
  • Cutting up asparagus
  • Beating eggs
  • Mixing eggs and milk
  • Mixing ingredients
  • Pouring ingredients into pan
  • Sprinkling cheese

My Tasks

  • Cutting up onions and garlic
  • Trimming asparagus
  • Cooking vegetables and bacon
  • Cutting up bacon (she could have done this, but it was still hot and it was getting a little late to wait)
  • Putting pan in the oven
  • Timing/removing pan when done

This worked out very well. Grating cheese when you have a stroke-affected hand is hard and takes some time. Alice did a good job. It also gave me time to sweat the onion and garlic.

Cutting up asparagus was a challenge, but I gave her a pair of kitchen scissors and that went smoothly. It helped that she really wanted to do the task.

Beating the eggs and mixing was old hand for her. She was starting to go a little non-linear and needed some minor redirection. The rest was familiar and easy.

Notice how she hides her weaker hand when it isn’t needed? Hmm.

At any rate, with Alice the trick is to set her expectations (we made a list), break tasks into smaller pieces and to have a mix of challenging/easy, and try to make sure that it’s something that’s fun.

If you go back through the archives, you’ll see a lot of cooking exercises that we’ve done together. There’s a simple reason: this is daily living. She needs to be able to build a set of skills that hopefully she can generalize and manage on her own.

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Having a Child with Down Syndrome, Part CXL: Reminders

It’s been almost 17 years that I’ve been Alice’s dad. Parenting in general is a challenge. Parenting a child with multiple disabilities has been a real bear of a challenge. There are some days when it’s easy and those are a gift. There are other days that just grind you down. While Alice has been going through adolescence, there have been more “grind you down” days, for sure.

I decided that I needed a reminder for myself to help me be the kind of dad that I want to be, so I chose this:

Essentially, it’s a nod to doing Captain America cosplay with Alice as well that I identify with the character, but most important when I feel ground down, I can look at it and get a solid reminder that the strength is there.

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Rhode Island Comic Con – We Made This Work

My one major criticism about Rhode Island Comic Con is the crowd management. A lot of that has to do with the layout of the facilities: there are 4 major pinch points just on the way in. The last time we went, the line just to get into the building was over a mile long. This is hard on Alice. The next couple of issues we had were parking: we got there early and there was nothing in the main lot. The natural overflow lots were just as bad because there were a lot of people before us who had the same problem. Finally, none of the food in the convention center is Celiac friendly.

I decided to see if I could find a way to solve all these problems.

For parking, instead of failing in the main lot, I went to a hotel lot before I got to the convention center. I couldn’t rearrange the building, but I did poke at the organizers to find out if there was any sort of accommodations for people with disabilities. There were – they had a couple of entrances to get ADA bracelets. This meant that we could just walk in through a less crowded entrance.

At lunch, Alice and I left the building and walked a couple blocks to the Trinity Brewhouse which had some gluten free options.

Alice and I decided to do Spiderverse cosplay. This was simple. I watched a couple of sales last year to get a cheap Swider Gwen hoodie and a Spiderman workout shirt. I picked up a cheap surplus field coat, a pair of sweats and some tennis shoes.

The best fun was getting a foam rubber cheeseburger. Why? Do you really need to ask?

Did I pretend to eat a cheeseburger in just about every picture? Why yes, dear reader, I did.


Around this point, Alice started to notice what I was doing. “Eww, dad! It’s gross!”

We also went to see some of the guests. We got to see both Nichelle Nichols and George Takei. Both were wonderful.

To be clear, Alice was picking a lot of the pictures herself, which is absolutely fine.