Having a Child with Down Syndrome, Part XXXIX: Looking Ahead

Copyright © 2012 Stephen Hawley, all rights reserved.

Day 28 of 31 for 21.

As parents of children with disabilities, we’re told that we need to look ahead,  have a vision, prepare for what is to become.  So we’ve looked into estate planning, tried to look forward in her education, try to build independence and set up circumstances for success.  And still, how are we supposed to plan for what’s to come?  Will Alice live independently?  Will she go to college?  Will she have a job?


We push for independence.  We try to set up circumstances for her to take care of herself, and then we have days like today.  Whether it was phase of the moon, less sleep than she needed, growth spurt, or whatever.  Today was a near-perfect storm of Alice missing on so many fronts.  The first sign was her walking naked into her brother’s room, then taking a good solid half hour to get dressed – something she can usually do in 10.  She had trouble getting her teeth brushed, couldn’t keep her hands off other people’s property, magically forgot how to say the ‘g’ in yogurt (reverting to ‘yoyurt’), reading ‘sauce’ as ‘spice’, and a number of behavioral issues.  And after days like this, I wonder how I’m supposed to plan for tomorrow, let alone 15 years hence.

Hopefully, this is just a blip on the radar and we move ahead tomorrow and the next day and the next.

I had a vision today.  Stuart had a hockey game and I was sitting in the stands with Evie and Alice watching the game and watching Alice cheering Stuart on.  Would Stuart continue to play?  Would Alice continue to watch and cheer him on?  Would Alice still danc ballet and would Stuart come to the performances.  I hope so.

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