Having a Child with Down Syndrome, Part XVII: More Discussions

Copyright © 2012 Stephen Hawley, all rights reserved.

Stuart and I were talking the other day.  He can roll his tongue up.  I can too.  He noted that neither his mom nor his sister can.  “Can only boys do that?” he asked.  “No, Stuart, some girls can do it and some boys can’t do it.” I responded.  “Can you tell me why?” “Sure.”  So I gave him a very simple explanation of genetics.  Here is what I told him:

Every cell in your body comes with an instruction book in it that tells your body how to build itself.  Every instruction book has 23 chapters in it.  Every chapter has two parts to it.  Your instruction book, somewhere in one chapter has instructions that say you can roll your tongue up.  Mine too.  Mommy and Alice’s instruction books don’t.  In the last chapter, 23, in you and me the first part of the chapter has green pages and the second part has blue pages. That makes us boys.  In mommy and Alice, both the first and second part have green pages, so they are girls.

Now Alice has a special chapter in her instruction book.  In every chapter in your instruction book, there are two parts.  Not in Alice’s.  In hers, chapter 21 has 3 sections to it.  More instructions.  This determines a lot of the things that make Alice just a little different from you, but mostly you are the same.


Bear with Me

Nearly literally.

I went out for a training run today on the local rail trail.  Right about the end of mile 1, a car came zipping up a parking lot adjacent to the trail, honking.  “Hey!  Hey!  You on the trail!  There was a bear spotted <mumble, mumble>.  Keep an eye open!”  “OK!  Thanks!”  I started making plans on how to alter my route.  The driver mentioned a location, but I didn’t know it.  I tentatively planned to turn around at 1.5 mi out and extend my run an additional .5 mi in the other direction.  When I got to the 1.5 mi mark, a couple guys at a road crossing yelled, “hey! Did you see the bear?”  “Nope!”  “It went running down there [indicating where I came from] about 10 minutes ago!”  “Thanks!”  I continued to the 2 mi mark, my original goal and turned around.  When I got back to the crossing, I checked if there had been any sign of the bear.  Since there wasn’t, I moved on making tentative plans for what I should do if I encountered the neighborhood oursine.  Avoiding it was what I figured would be best (and it turns out is the most reasonable thing).

I did not see a bear, though, just other joggers and bikers.

Unlike Monday, when I had a lot of trouble breathing and hadn’t slept properly for two days, today’s run was very solid.  A really nice 4.5 mi run, split in my usual run .75, walk .25 pace.  At my last leg, I came upon my co-worker Dave who is an accomplished marathon runner.  Dave had finished his “easy” run (which is way faster than I can manage).  I goaded him into running my last .25 mi leg as his cool down, which he did.  I had to keep telling him to slow down.  In the last 50 yards, I spent any energy I had left and pulled my stride out to its best.  It hurt, but in the good way.  Hopefully, Friday’s 5 mi goal will work.

Now to business – and you knew I was going here.  The race is in two months (August 12th).  I have reached my theoretical fundraising goal, but I’d really like to do much better.  In a way, it reminds me of this joke: a chicken approaches a pig and says, “hey! I want to start a restaurant with you!  We’ll call it ‘Ham and Eggs’!”  The pig says, “no way!”  “Why?” “Because I’d be committed and you would only be involved!”  Well, I am committed to doing this, but I’m asking you to please, please consider getting involved.  My donation page is here.  I know a bunch of my facebook friends read this and there must be, what, at least two people from metafilter (I kid, I kid). If you would consider this amount $10.  Really.  Just $10.  If half my facebook friends donated that amount and 1/8 of the traffic from metafilter, this would be at least another $1000 going to the Massachusetts Down Syndrome Congress.  Providing resources for advocacy, speech, doctors, respite, literacy, leadership, and on and on, the MDSC makes such a tremendous positive difference in so many lives.  Please consider donating.  I know I sound like a PBS station, but if you think about it this way: would you consider skipping a week’s worth of coffee to cover that $10?  Miss a movie in the theater?

Don’t make me send that bear after you.


Nice Contact from JoCo Enterprises

After making The Future Soon video with Alice, I sent a link to Scarface Drew, Jonathan Coulton’s assistant.  I received the following reply:

Joco’s disfigured henchman, Scarface, here. Sorry for the delayed reply, Jonathan Coulton Industries array of email inboxes have been under heavy fire for months now. We are all dazed and confused.

Thanks so much for getting back to me with the link.  Very sweet!  You both sound great! We appreciate, and will pass it along to Jonathan!

Best wishes,


I am very pleased.  Last night Alice and I were singing “Re: Your Brains” after dinner.  Maybe we’ll record it when I’ve gotten my playing up to a performance level of “Incompetent Amateur”.


You Have a Family Member with Down Syndrome, So Now What? Part 5

Copyright © 2012, Stephen Hawley, all rights reserved.

I remember when I was very young I was visiting my grandparents in Evanston, Illinois.  They were very upright and not too prepared for three active boys.  There weren’t a lot of toys and I was bored out of my skull.  I asked for some crayons for coloring and my grandfather went out to a five and dime and picked up a box for me.  When I got them, I sat down and proceeded to break them into pieces.  My grandfather was aghast.  I apologized.  I only remember that they made such a great ‘snick’ on breaking.

This month’s project (barely made it!) surrounds vindicating my behavior.  You’re going to make crayons that are suitable for your child’s small hands and don’t rely on having pincer grasp, something that may come later than the typical population.



  • Three boxes of crayons – use good quality crayons: Crayola or Rose Art.
  • Several small flat-bottomed paper cups
  • A high walled baking pan like a loaf pan



Preheat your oven to 200F.  While the oven is heating, sort out your crayons by color.  You want three of each color.  Strip each crayon of its paper (hint, a vegetable peeler makes quick work of this).  Break into 1/2 pieces and put each color into a single cup.


Place each cup into the pan and add water so that the cups barely float.  Bake in the oven for about 20 minutes or until the crayons have melted evenly.  Remove the pan and allow the crayons to cool in the water.  If you do not let them cool in the water, they will crack or deform.  When cool, peel the paper cup away and remove the reshaped crayon.  One edge may have a sharp edge – you can smooth it by rubbing it on rough paper.


How To Use

Really?  Well, OK.  Take out paper.  Lots of it.  Newsprint or butcher paper to cover the table (or use the lap desk from part 4) and show the crayons and color with them!  If your child is the coloring type (mine wasn’t), she will figure the rest out. These crayons are an easy size and shape to hold.  If they’re too big, you can always cut them in half or use something smaller as a mold – you could try ice cube trays, but be careful about the heat.  Plastic trays may very well melt too.

This type of play helps eye-hand coordination, develops an interest in visual art, and is fun!