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Having a Child with Down Syndrome, Part CVII: Alice Eats the World

Saturday started out like a typical Saturday. I was trying to be lazy in bed and heard some suspicious noises downstairs, so I dragged myself out of bed to go investigate. Alice had taken out the eggs, a pan which was now on the stove (pro-tip: take the knobs off and keep them out of the way), the gluten-free bread, and the milk.

"Alice, what are you up to."

"I'm making eggs and toast."

"Not with that pan," I thought. "You want some help with that?"

"Yes, please."

I made a quick over-easy egg, one slice of toast with butter, and a short glass of milk.

Alice made short work of it and asked for more.

"I think that's enough, don't you?"

"Yes, daddy" - Alice's standard reply of resignation.

She went off to do her "morning things": get dressed, brush her teeth, etc.

E started making her breakfast and asked me if I knew where the yogurt was.

"Nope. I bought a new tub of it yesterday."

"I know - I had a little bit of it but I don't see it."

More searching, no paydirt.

I went down to the basement where Alice had been watching TV, and there on the table next to the couch was the open tub of yogurt with a spoon, a napkin, and a glass of milk. Alice had eaten all but maybe 6 ounces of it. Here. Let me give you some perspective.


She ate nearly 24 ounces of yogurt in one shot. That's about 3 servings or 900 calories. And then she decided she wanted breakfast.

Evie used the rest in her breakfast, then Alice came down.

"Hey, Alice."

"Yes, daddy."

"How many breakfasts did you eat today?"

Alice holds up one finger.

I look at her using my +2 Stare of Bullshit Detection.

Alice holds up two fingers.

We talked to her about why you only need one breakfast, hoping it would stick and suspecting that it wouldn't.

An hour later, Alice came up to me.

"Daddy, I want snack please."

"No." I replied firmly.

"But why?" (which is Alice's new standard response for 'you said no and I disagree')


"Yes, daddy."

"How many breakfasts did you eat today?"

"2" (no hesitation)

"That's why."

"Yes, daddy."

Alice eats the world.


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Having a Child with Down Syndrome, Part CVI: Camping

Copyright © 2016 Stephen Hawley, all rights reserved.

Both E and I camped when we were young. Like all campers, we've experienced successes and disasters and everything in between. As adults, we decided that we wanted to share the good parts, as much as possible, with our kids. When I was a scout, camping to many forms - from riding a bus to a campground to being dropped off at a trail head with back packs. When you've got a child with significant disabilities, the slider gets adjusted to the "easier" camping where we load up our car, drive to a state park, set up a tent and camp site and stay for a couple nights.


There is a picnic table in here as well: a luxury, as is being close to a bathroom/dish cleaning station. I don't believe in bad camp food and Alice has Celiac disease, so many pre-packaged camp foods are out of the question. We plan and pack accordingly, including a cooler packed with ice packs to keep the perishables fresh for our stay.

E wanted to bring s'mores makings, which was never really a thing for me. As a kid, I roasted marshmallows, but never did the s'mores. I think they're too sweet and heavens are they messy. That's why I brought these:


Having a pack of these around is so good for many things, besides s'mores cleanup. I went fishing with each kid and as a result, I ended up with worm guts and fish slime all over my hands. I washed my hands twice and still had "eau de worm" and was able to clean my hands of the remaining stink with these.


Alice insisted that she wanted to go fishing, and I'm OK with that. For her, that means blue gills. They're plentiful, voracious, dumb, and hand around fairly close to shore. That makes them the perfect target for her. She had her Disney princess rod and I rigged it with a bobber, hook, sinker and worm. I cast out and she very slowly brings it back in, which is a near guarantee for a strike. They hit the hook hard enough that she doesn't really need to worry about setting it, just winding it in. And that is fabulous two hand physical therapy for her.


E took her for a walk, and it was a 1/4 mile to where we were fishing, so she got some exercise.

As to sleeping. Both kids were totally wound up the first night because CAMPING! and CRICKETS! and S'MORES! But E and I were able to sit by the dying coals of fire without too, too many interruptions. Still, as an adult, I typically don't end up sleeping a lot. On the first night, I had a about an hour of sleep which finished with me dreaming that there was a family of skunks outside out tent and Alice was inviting them in. I woke up to see her sitting up right at the door of the tent. I was bolt awake, ready for skunks. Fortunately, I just had to get Alice into her sleeping bag and zipped up, but that was challenge enough. The next day, Alice was not at her best, which is usually the case when she doesn't get a full night's sleep. I didn't get any more. I "counted sheep" and got well into the 31,000's before I gave up in frustration.


E had packed some games and we played several rounds of "Goblins Drool, Fairies Rule!", which is a fine game. The rules aren't too complicated and he game play requires simple pattern matching as well as being able to spot rhyming phrases. Stuart was at his patient best with her and we had a good time, even though both Alice and I were not at our best.

The second night, Alice had unzipped her sleeping bag all the way before bed, so I had to fix that. 20 minutes later, she called for help and she had unzipped the bad again and looked at me with a solid "what's this shit?" look. I zipped it back up and got her in. When I checked on her later, she was out of the bag and sound asleep facing the wrong direction. In the words of my mom, "let 'em lay where Jesus flung 'em". She woke me up 2 hours later because she was cold. I tried to get her in the bag and it was like reliving the scene from Monty Python and the Holy Grail:

"Make sure the Prince doesn't leave the room until I come and get him."

"Not to leave the room even if you come and get him."

"No until I come and get him."

"Until you come and get him, we're not to enter the room."


In this case, it was "Alice, you need to come here and get in the bag." Nothing. "Alice, you need to come here and get in the bag." "But daddy, my sleeping pad!" "Is right here. Under your bag. You need to come here and get in the bag." Nothing. "the bag. Here." I gesture going from right in front of her eyes to the bag, making sure she's tracking. "Come here." nothing. "Alice. Come here." nothing. I lose patience and firmly grab her biceps and haul her to the bag. "Here's your bag. You need to put your feet in." nothing. "your feet. Put them in here." Alice puts her head in the bag. "That's your head. I need your feet." I touch her feet "Hey! Don't touch me!" "Put them in bag. Great. Now scoot." nothing. "Scoot. You need to scoot." nothing. I put a hand under her butt and give an assist. "Scoot. Scoot in the bag." She scoots in. Finally. I zip her in and go back to sleep. Two hours later, she's awake and shoving me because she scooted out of the bag.


Frustrations and lack of sleep aside, it was still a great trip. Lovely scenery, reasonably quiet, great weather, no injuries, not too many bugs and we were out just long enough.

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Having a Child with Down Syndrome, Part CV: Complications Block Fantasies

Copyright © 2016 Stephen Hawley, all rights reserved.

I was watching a YouTube video of Adam Savage the other day showing how he made parts of his bear costume for SDCC 2016.

I mentioned it to E because she's working on a Hallowe'en costume that will require similar things, and it's good to learn from someone else's experience. Evie's working on this alone, but she expressed how she really wanted to work on it with me. I'd like that too, but circumstances pretty much ensure that it won't. I gave her background on the video of how Adam goes to SDCC in costume because (1) it's fun and (2) because without a costume, he would never get to see anything because he would be continually swamped. Although, quite honestly, I think he get's swamped anyway by people who want to get pictures with him in his excellent costumes.

I mentioned how much I'd like to go to SDCC, but that it was never going to happen. Evie said, "maybe if we could get some respite and..." I interrupted and said, "tickets are hard to get, it's a long flight across country, and respite care for the kids. That's three complications. Not going to happen." Another dream shot down. Damn my innate practical thinking. I mean, we can't even make it across the state for a Boston or Rhode Island event, let alone Sand Diego. Oh well.

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Having a Child with Down Syndrome, Part CIV: Hoping to Make Consequences Stick

Copyright © 2016 Stephen Hawley, all rights reserved.

Oh actions and consequences. Alice has a number of challenges, not the least is that she has very little executive function and a high amount of perseveration. The result is that she goes through things that she knows are not hers. Our mantra with her has been "not yours, no touch", but honestly it's hard to tell if that has made a positive change in her behavior.


For example, refer to the day recently where she ate her lunch and mine.

Tonight, Alice went into her brother's room and saw an interesting project that he and I had built from a Tinker Crate project. She couldn't resist and started messing with it and pretty much ruined it. We found out about when Stuart came down in tears that his space had been violated and his work ruined.

And what are you supposed to do?

The first thing we did was send her to her room to keep the space between them. This isn't so much consequences for her as it is safety measures to keep them apart.

After things cooled down, I went in and spoke with her.

In questioning her, Alice knew full well what she had done and tried half-heartedly to lie to me. As if. I applied the +3 stern look of bullshit detection over the top of my glasses which made her break eye contact and tell the truth. Nice try, Alice.

I applied an appropriate consequence: two days without any media. But with Alice, this has to be different. We had to go through it 4 times until I was sure that she understood that she was losing her privileges because of her actions. 4 repetitions and she could tell me what was happening and why.

Will she remember it? Likely no, but the first time she goes for media, we'll repeat it again. And again. And again, because perseveration works in both directions.

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Forewarned is Forearmed

After last week, when Alice successfully ate two lunches (one of them mine), I decided that I would take some preventative measures.

First, let's talk about yesterday. Sunday morning, Alice got up around 6:00 and decided to make herself breakfast.  She went into the kitchen, grabbed an as yet unopened bag of Trader Joe's Gluten Free Bread and took it down to the basement and turned on the TV to watch The Princess and The Frog (again), and to chow down.

E came down and was going to make her breakfast - French toast, but she couldn't find the GF bread. I told her that I had set a bag on the counter next to the fridge the day before. No sign. I verified then grabbed another bag from the freezer and I spotted that the empty bag was on the floor in front of Alice. She ate the entire loaf. 7 servings and 240 calories per serving results in nearly an entire day worth of calories. Then she wanted breakfast. She had the gall to ask for breakfast on top of that.

Oh hell to the no.

So this morning, when I packed my own lunch, I left a note:


You know, just in case.

In the car on the way down, I asked Alice how many lunches she was going to eat today.


And when we put the lunches in the fridge, I pointed out that was her lunch and this was mine.

"Whose lunch are you going to eat?"


"That's right."

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Elbow Camp

For the past 6 years, we've enrolled Alice in a camp called LARC (for Lefty and Righty Camp). This is a camp that is intensive physical and occupational therapy done for kids who have issues with one side of their body. In Alice's case, it's from a stroke, but there are kids who have had a wide range of conditions that make them eligible. For the duration of the sessions, the kids wear a cast on their good arm and are required to do everything with their poorer arm.


This year, since I'm working from home, I'm sharing the 2 hour-each-way drive to camp and working down there.

Today, Alice had her lunch packed and I packed mine. Alice witnessed this.

When we arrived, she put her lunch in the fridge. I put mine in.

Round about 1, I surfaced from work and went to get my lunch. It was not in the fridge. I poked around to see where the kids were and then I found Alice's lunch bag next to mine near where she had taken off her shoes. Both were empty. Totally empty. Alice ate a good sized kid's lunch and a good sized adult lunch. I flagged down the head of the program as she walked by and asked what happened. They were a little confused by the two lunches, but they see a lot of weird things so they didn't complain because Alice ate everything. I explained that no, she had eaten my lunch too and she knew it. I also explained that she will only ever get one lunch and that she shouldn't have anything else since it might not be gluten free.

When the day was over, I did some probing to find out how much intent there was.

"Who's lunch box is this?" I said, pointing to mine.


"And this one?" pointing to hers.


"Did you eat your lunch?"


"Did you eat my lunch?"


"Try again."



"yes, I did."

"You had two lunches today."

"Yes, daddy. I'm sorry."

"I hear you and I'm glad you're sorry. I was looking forward to the ribs in my lunch. I feel disappointed." I said this with no anger.

She apologized several times, and each time I responded the same way.

Then. Oh yes, then. Alice decided to show some brass ones.

"Daddy we go to Burger King for french fries and Diet Coke?"

"No. Do you know why?"

"I ate two lunches."

"That's right."

A few minutes later: "Daddy, I so hungry and thirsty."

"No, Alice, you're not hungry. Do you know why?"

"I ate two lunches."

"That's right."

Many years ago, I heard an interview on NPR with a professional negotiator. He was asked who were the most challenging people to negotiate with. He said kids, because they have nothing to lose and they know it. It makes it easier to ask for something crazy because they just might get it.

Nice try, Alice. Nice try.

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Having a Child With Down Syndrome, Part CIII: The Crux of Frustration

Copyright © 2016 Stephen Hawley, all rights reserved.

I've been writing this in my head for about a week. Alice and I have been butting heads on a number of things, not the least of which is that she has been regressing on a number of behaviors - things that she had mastered since she was 3: using a napkin, getting dressed in a timely manner, and so on.


For some of the more egregious things, I've been resorting to shame as a corrective measure. It doesn't work. In fact, it makes things get tremendously worse.

It came to a head on father's day when, from Alice, I received a gift of open disdain. It's been frustrating and I was getting more and more angry.

After stewing for several days, I thought through the whole process. Think about this: suppose you slipped up on some things at work and every time you slipped up, your boss berated you and shamed you. Would you want to try harder? Would you want to come back to work? So it's no surprise that Alice's behavior is getting worse.

So what's the answer? It's surprising simple: love her more. Approach the problems with love and positive messages. Trying to get her on our side instead of a confrontation of shame. Implementing is harder, but we're already seeing change in her.

Although today, we had a serious bout of "I'm not going to listen to either mom or dad." for which timeoutularity ensued, most of which she spent screaming at me. But that was fine. I can let the storm pass. Still, the trend is in the right direction.

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Having a Child with Down Syndrome, Part CII: School Cooking Projects

Copyright © 2016 Stephen Hawley, all rights reserved.

Alice had a unit on Africa in Social Studies. As part of that project, she had to find a recipe for a dish from South Africa and make it for class. II got a heads up from Alice's SPED teacher letting us know well in advance (which was much appreciated). In looking around, I picked a recipe for Chakalaka which I simplified somewhat and laid it out in biggish type and simple steps.

For most of the recipe, I acted as a human food processor and Alice read the instructions. Of course, I wouldn't miss a chance for sneaky physical therapy, now would I?



Look at that right hand! Curled around the handle like a champ!

Chakalaka is a very basic vegetable curry and was easy to do. It was nice to have an oasis of good listening from Alice since recently she has been engaging in maladaptive behaviors that are well beneath both her age and capability level.

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I Get That Feeling, Alice. Every. Single. Day.

Not too long ago, I would euphemistically refer to Alice as "The World's Happiest Alarm Clock". Alice used to wake us up around 4:40 each day because she was awake so we should be too. Inevitably, she would end up conking out on the school bus on the way to school, in school, or on the bus on the way home. We didn't get that luxury. Things got better with five things we've done:

  1. Had her adenoids removed (enlarged tonsils and adenoids cause sleep apnea in more than half of people with Down syndrome)
  2. Had a sleep study so she could get a CPAP
  3. Installed black out blinds in her room
  4. Give her melatonin before bed
  5. Ensure that her bedtime is as consistent as possible

Nowadays, I get up around 5:30 and then get Alice up at 6:00. And in a fitting turn of events, I need to get her out of bed. I've found that I can manipulate her out of bed by telling her that I'm waiting for my morning hug as Alice goes through her morning boot-up sequence.

Yesterday, she got downstairs and pretended to sleep on the breakfast bar.


Pretended. Every now and again I saw her crack an eye to see if I was paying attention, but she more or less committed to the role. It ended once I plunked an egg and some toast in front of her.

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Having a Child with Down Syndrome, Part CI: Who Am I Now?

Copyright © 2016 Stephen Hawley, all rights reserved.

Professionally, I'm Steve Hawley or just Steve. I don't have a really high profile, but I've certainly affected the software world and maintain an appropriately public enough profile. But that's my job. That's a relatively small proportion of my day compared with the rest of the time.

To my kids, I'm dad or daddy. Occasionally, I'm 'Steve', but that usually elicits a hard stare over the top of my glasses. After all, there are only two people on the planet who can call me 'dad', so they should enjoy that particular privilege.


Largely, in my community, I'm "Alice's Dad". When I go out in public, I usually hear it as, "oh, you're Alice's dad!" Ohhhhkayyyyy. Usually, I'm waiting for the other shoe to drop in terms of something she did for which I need to be called out, but to date, it's been good.

There's a local group, Whole Children, which specializes in classes and activities for kids with special needs and more and more, Alice has been involved with this group, so there she is on the cover of their summer flier. It won't be the last time, I'm sure. And it means that there will be more people who will spot me and greet me with, "oh, you're Alice's dad!"


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