Having a Child With Down Syndrome, Part XXV: Commitments

Copyright © 2012 Stephen Hawley, all rights reserved.

When I was in college, there was a point where I walked upstairs in the library and found myself winded when I reached the top.  Not good.  So the next semester, I added a PE class in running to my course load.  I liked it a lot and I’ve kept at it on-again-off-again over the years.  When I take up an exercise program, it’s almost always running.  This is especially funny since I’m not a particularly good runner.  Last year, after another patch of crazy life, I took it up again and followed the Couch to 5K program.  I succeeded in it and kept at running until I had some health problems that tanked my stamina and made it impossible to run.

Three weeks ago, I started up again, but not with Couch to 5K program – I’m using a self-paced program to get myself into a much longer range, because I decided to run the Falmouth Road Race in August.  This is a highly competitive 7 mile race and one that attracts scores of elite runners.  I am not one of those; at least not in the usual sense of the word.  As a member of the Massachusetts Down Syndrome Congress, I have received scores of mailings about the race.  The MDSC gets a small number of race slots for the purpose of fund-raising and this year, I grabbed one of those slots.  In the sense that this is a small, privileged group, I am elite.

I am committed to this race and committed to helping raise money for the MDSC, much in the same way that I’m committed to helping my daughter grow up to be the best person she can be.  The MDSC has been instrumental in providing families with support, information, and resources about Down syndrome to make my commitments easier.  I have such gratitude for the organization and its help, I feel it fitting that I should give back.

My running goal? To finish.  Ideally, I’d like to finish in a pokey 70 minutes.  I think I can do it.  So far, I’m using 8.5 minutes/mile on my “fast” days and 10 minutes/mile on my “long” days.

My donation page is here.  I have set a basic goal of $1000, but I would like to go way past that.  I had intended to promise to match every donation up to $300, but an anonymous donor has already put in more than that!  I still will, but please consider donating.  It’s tax-deductible and it’s a worthy commitment.  Please help.


Having a Child with Down Syndrome, Part XXIV: Angels of Respite

Copyright © 2012 Stephen Hawley, all rights reserved.

I had both kids for the day yesterday as E had gone to a special ed conference.  I had a a simple day planned with one treat in the middle: we were going to go to Amelia Park to go skating.  Now, I’ve tried taking Alice skating before and it has never gone well.  On skates, she lacks confidence and is terrified of falling and slipping.  It has always ended in tears.  At Amelia park (and many other skating rinks, for that matter), you can ask to borrow a sled hockey sled with push bars and once with Alice alone, we found an appropriate sled.  This time, however, there was only one sled with a push bar and it had but a single blade under the seat, making it very unstable.  I’m an OK skater at best and felt very uncomfortable taking her out in that sled, so I passed and let my son go out on the ice by himself while I explained to Alice what was going on.  She wasn’t happy.  I’m not surprised.  We spent some time calming down, during which time the rink manager came out to apologize to us and was almost on the verge of tears herself.  Stuart kept coming off the ice to say ‘hi’ to Alice, and Alice got very excited about seeing him.  She was very proud about how well he was skating. She also liked cheering him on by yelling, “Go Stuart! Go Stuart!”

While we watched, a couple came off the ice and introduced themselves to me and to Alice.  They, it turned out, do volunteer work for Special Olympics and were happy to watch Alice while I got some ice time with Stuart.  I was a little nervous at first, but Alice is usually a pretty good litmus test of character and the Special Olympics t-shirt was a dead give-away that they were on the up and up.  So I went out and surprised Stuart and we both would swing by the entrance to give Alice a high five.  Alice was thrilled, and I had the opportunity to relax just a little bit.

In special needs parlance, this is called respite and I don’t know these people or how they came to be in exactly the right place at the right time, but it was awfully nice of them and I told them so.  Respite is important.  We need to recharge.  We need to smile.  We need to relax. Respite is a recognition and acknowledgement that our patience is not limitless and we are not superheroes.


You Have a Family Member with Down Syndrome, So Now What? Part 4

Copyright © 2012, Stephen Hawley, all rights reserved.

You would not believe how easy it is to create tools to assist your child as she grows and starts going through her milestones.  Sometimes all it takes is a little nudge here or a little prop there to get your child doing new things.  This month’s project is one that you can do with the simplest of materials and tools and carries a fairly big benefit.  It’s a desk:


A cardboard box about 6 inches tall, a foot wide, and 8 inches deep.  The dimensions aren’t critical as long as it is wider than your child’s hips and it is tall enough that when your child sits on the floor, the child’s forearms rest easily on the box or slightly above it. Packing tape.


Using sturdy scissors or a matte knife, cut the flaps off the top on each side.  Flip it over and cut two arches on the long sides for legs.  If necessary, pull off all the old tape holding the (new) top on and put on fresh tape to hold it firm so that it won’t tempt small hands from pulling it off and tasting it.

How To Use

Have your child sit on the floor and place the desk over his legs.  Put a toy or two on top of the desk and encourage your child to play with it.  You can also put a piece of paper on the top so and let him crumple it or tear it or scribble on it.

Why and when might you need this?  At as early as 4 months most typical babies will start to be able to sit up for a few minutes at a time.  This may come later for our kids because of low muscle tone, making it harder to sit up (if your physical therapist hasn’t recommended it, you might ask him/her about Theratogs, which can help trunk stability among other things).  Play placing toys on the desk, you’re putting toys within easier reach without having to bend or flop over.

Early on, you will probably want to put the toys in the center of the desk encourage midline grasp and play.  Later, you can put the toys in the far corners of the desk and prevent the closer hand from grasping the toy.  This will encourage cross body reach and turning, which is a good thing.

One thing to avoid: you might think, “ah! plain cardboard, I can decorate this with bright colors or pictures.  You, of course, know your child better than I do, but you might want to keep in mind that our kids are usually very visually oriented. This means that bright visuals on things that are better off being relatively invisible are not necessarily a good thing.  Save the visuals for the times that they count the most.

As usual, have fun and feel free to share this, but please keep the attribution.