Monthly Archives: October 2016

Down Syndrome Awareness Month 2016 – Day 11 – Do Things; Lots of Things

Alice and I have been having a certain amount of friction with each other lately. She’s a teen. She wants to be independent, but her decisions don’t (yet) have the wisdom of age or experience and unfortunately, she does the same egregious things routinely so the feedback loop is not working. I was looking for a picture of Alice being ticked off, but apparently I take precious few of those, so hooray?


Instead, here’s a picture of me and Alice on the Amelia Park ice rink. I take her here routinely because they have some nice sled hockey sleds that you can borrow to make the ice accessible and because I enjoy skating. I’m a terrible skater, but I still enjoy it and so does Alice.

So do lots of things together and keep doing the things that bring both of you joy.

Down Syndrome Awareness Month 2016 – Day 6 – Planning for Independence

The panacea for people with Down syndrome is independence. I don’t know that Alice will end up being independent, but independence is not a binary thing. The jury is out on where Alice will fall in that gray area. So as parents, we do a lot of things to encourage or force independence. I’m really happy that I don’t have to help Alice dress (except for the rare time that she gets tangled up in her bra, and don’t we all have experience with that?). Here’s a simple thing that solves several problems in one fell swoop: plan and post your menu.


I used to use a pad of paper with a magnetic backing, but I found a magnetic sheet that with water soluble “chalk” markers can be cleaned and reused. What this does is prevents the endless “what are we having for dinner?” whining. The answer is posted. Alice refers to the menu frequently and she does it completely on her own, and that is the very definition of independence and literacy.


Down Syndrome Awareness Month 2016 – Day 4 – Watching Her Grow Up

This is Alice, at least as of quarter past oh-dark-thirty this morning, while we waited for her bus to arrive.

Like all kids, she’s growing up. She’s heading full steam into adolescence and I don’t know if we’re ready for it. Is any parent? Probably not. A few months shy of 10 years ago, we took Alice out on a trip to cut a Christmas tree. I caught her really enjoying the heck out of the sunny day.


And while this morning’s photo doesn’t show it, she is still very much filled with that same joy. It won’t be long until she’s an adult. Time moves inexorably forward leaving us in its wake.

Down Syndrome Awareness Month 2016 – Day 3 – They’re Still People

Alice didn’t get as much sleep as she should have on the weekend. She got up early to try to get in as much TV as she could. So today, when I went in to get her up, this is what I saw:


When Alice heard me, she grabber her comforter and pulled it over her head. Nice try. Didn’t work, but nice try. I understand, though. Everyone has days like these once in a while.

Down Syndrome Awareness Month 2016 – Day 1 – You Will Be Surprised

Copyright © 2016 Stephen Hawley, all rights reserved.

Alice and Stuart had a block of free time and at Alice’s urging, they decided to play a game of monopoly. I decided not to get involved because (1) I was tired and (2) I have a head cold and (3) I can’t stand Monopoly. It destroys families about as often as “Sorry”, but the pain drags out so much longer.

Stuart and Alice played very well, and while Alice wanted to buy everything, Stuart was patient and helped her make good choices.


At this point, Alice had been sent to Jail. Stuart is looking up the precise rules on how you can get out of Jail. Alice is bouncing her token up and down saying, “Help me! Help me!” Very funny. After about a half hour, Alice said, “I’m done” very assertively and it was accepted and they both cleaned up the game and got it stowed away. The whole thing was a surprise to me. During the game, I had to intervene a few times, but it was mostly because Alice was intentionally not doing the work to identify denominations of money and was letting Stuart do that for her. Sneaky.