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.


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.


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.


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!”



Having a Child with Down Syndrome, Part C: Even More Sneaky Physical Therapy

Copyright © 2016 Stephen Hawley, all rights reserved.

Wow, 100 in this series. I never thought I would have this much to say, but then again every day is a new day that brings challenges both old and new.

As I’ve mentioned before, Alice perseverates. It’s not just a subject like vacations or camp. A couple months ago, she got a cut on her right arm, one the side just below the shoulder. Alice picked at that scab like you wouldn’t believe. So I took a cue from the The Miracle Worker. Every time I spotted Alice without a band aid, I put another one on. I had to start rotating the angle because her skin got sore from tearing them off.


And one day, I noticed that Alice had put a band aid on herself. This shouldn’t have been a surprise. I had bought a bulk box that matches no skin tone on the planet. We also had a collection of “cartoon” band aids in the kid’s bathroom. Alice doesn’t like the generic ones, she likes the shiny ones. So when I spotted her wearing one, I knew that I had just won. She had to get the band aid out of its wrapper and peel of the backing on her own before applying it.

Yes. Self care and physical/occupational therapy. The best kind of PT and OT is the sneaky kind. It’s the kind that the kid wants to do on their own. The kind that takes no nagging and reminders.

And finally that cut it healing.