Plinth Blog Special Needs Parenting

25May/120

Having a Child with Down Syndrome, Part XXVI: Bargaining

Copyright © 2012 Stephen Hawley, all rights reserved.

It is May 25th.  What was I thinking?  I promised that I would run the Falmouth Road Race on August 12th.  Today, I covered 3.5 miles at my slow pace interspersed with walking intervals.  In the middle of this, there was a moderate amount of exhaustion.  It's not a surprise - this is a new long distance and I'm carrying a cold that was given to me by one of my kids.  I can't say which because I've been in broken record parenting ("cover your cough!", "wash your hands!").  So in all, I'm happy with today's run.  Very happy.  It was just, what, 7 weeks ago that I could barely do a quarter mile run followed by a quarter mile walk.  This doesn't change the face that on my 3rd 3/4 mile run interval, I was making up bargains about getting to the next walk interval.  Eventually I started swearing about where the **** water tower was.  I got there.

If you're doing the math, I have 10 useful training weeks left.  Initially, I had bargained that I would do this race by running 7/8 mile and walking 1/8 mile through the race.  At this point I'm bargaining that I will do it with 3/4 and 1/4 instead.  We'll see.  If I add 1/2 mile a week, in 7 weeks I will get there which leaves me 2 weeks to push the mileage a little further.  The last week will be a taper week.

To keep with my bargain, I think of all the wonderful things the MDSC has done for us and for so many families in Massachusetts.  I look at every facebook post they make.  I imagine Alice getting older and growing into a young lady.  Will she be a valuable member of the community?  Will she be a self-advocate?  Will she be independent?

Ultimately this is my bargain: try to ensure that the MDSC has the resources to help ensure that the answers to those questions are trivially 'yes'.

Once again, my donation page is here.  Please consider donating.  It is tax-deductible (woo-hoo!), but above all it is beneficial for thousands of people in the state.

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21May/120

The Future Soon

This is just for fun.

Alice and I learned the song The Future Soon by Jonathon Coulton.  This is us performing it.

She learned the sign from CaptainValor's performance on YouTube. Beware that not all his songs are kid-friendly.  My favorite part is when she does some of the signs and transfers them on to me.  🙂

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