Having a Child with Down Syndrome, Part LXV: Just Some Random Thoughts

Copyright © 2013 Stephen Hawley, all rights reserved.

Looks like I’m not running the Falmouth Road Race this year.  I’ve been training quietly since April and it’s been going very well.  I’m up to about three miles straight running –no walking breaks– and have had a pretty rock-solid pace.  Last year, the training was a challenge and I ended up hurting my hip, likely from my gait, and had trouble finishing.  When the notices came out, I talked it over with E and it was a very difficult decision.  On the one hand, the race is fun and is a great accomplishment and the MDSC is a great organization to run and raise money for.  On the other hand, the race is on August 11th, and we’ll be moving in mid to late August.

We love our house, but it’s become clear that the location is just not suitable in the medium to long term.  We have no sidewalk and the road in front of our house is busy and the drivers often speed.  The speed limit is 30, but according to the traffic survey, the average speed going around the bend just up the street from us is 45.  Average.  E worked out the stopping distance and given typical reaction time, Alice could not possibly cross the street safely.  It’s not a question of if she would get hit, it’s when.  We have hard evidence for that too, since our next-door neighbors have a dog that is missing a leg, thanks to the traffic.

E tried to see if we could get something put in place by the town/state to fix the road, but in the current budgetary situation there is nothing that is effective that the town can afford.  Game over.

We’ve been shopping the market for about a year and our requirements for size and and location have made that a challenge.  We’ve been looking for a certain size with a sidewalk in front and an easy walk to a bus stop.  The places that we’ve seen have been a little too small or a lot too expensive or both, so we’ve instead are having a house built in a nice development.  The houses are a little close together, but the builders are good and we’re getting the house set up in a way that should work well for us.

IMAG1500The dormer there will be Alice’s room.  Since they’ve had the roof on, we took the kids by so they could get a sense of the space.

So long story short, the timing of the race and our move is unfortunate.  I suspect a lot of my time in August will be spent packing boxes and winnowing that which we no longer need.

Today, I took Alice shopping and we had a decent enough time.  I’m giving her more and more autonomy in the store and as usual, the staff at Big Y in Northampton are fabulous with her.  I’m a big fan of how they treat her – they take what she says seriously and do the right thing to engage her in appropriate ways.  In addition to hiring these wonderful people, Big Y has also been very good about hiring people with disabilities.  For example, Katie:



We’ve known Katie and her family since Alice was a baby and we’ve watched her grow up over the past decade.  Katie, unlike Alice, has always been shy.  I used to see her shopping with her dad and I tried to make a point of talking with her, but she isn’t so much of a people person.  She works at Big Y on the weekends bagging groceries and is a hard worker.  Today, I noticed that she was wearing a medal.  I asked her about it – what was is for? “Swimming.” I looked closely and saw it was from the Special Olympics.  I congratulated her and she beamed.  I asked her if I could take her picture – she said yes, and while I was getting out my phone, she took out another medal and put it on too and she smiled with a great amount of pride.  Good for her.  It was nice to see her come out of her shell a little more.


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