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.


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.”


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.