Having a Child with Down Syndrome, Part XVIII: What is the Burden?

Copyright © 2011, Stephen Hawley, all rights reserved.

This summer has been a busy one.  Heck, every week is busy.  That explains why I haven’t really written a lot recently.  I think a lot, but the energy for writing hasn’t been there.  E took Alice to a camp called LARC.  This is the second time that Alice has gone to this particular camp.  LARC stands for Lefty and Righty Camp.  It is a program that is designed to help children who have had, well, brain damage.  Specifically, damage to one side of the brain or the other.  Alice had a stroke and has been working with the challenges of diminshed gross and fine motor control on her right side since birth.

LARC is set up to push the weak side.  They do this with Alice by putting her good arm into a cast, thus forcing her to work her weak side.  We have done this without the camp before, but the camp setting makes a great deal of sense for Alice, especially if she is around other children with similar challenges.

During the time that E and Alice were away, I had the opportunity to be a bachelor with Stuart.  And in the time we were together, I got a sense of the burden of having Alice.  It’s not something that I’m proud of putting it in these terms and I would prefer to be clear that these are costs that come with the richness that she brings.  Everyone has costs in a family, including me.

So during my time with Stuart, I took note of what I was able to get done while we were together and how much time I had for other things that unfortunately fall between the cracks.  I found that in the morning, I had time to get a load of laundry in and into the dryer.  I didn’t have to do the previous night’s pots and pans because they were already done.  Instead of making sure that Alice was getting dressed instead of taking every book off her shelf, I could make lunches uninterrupted.  I didn’t have to hound Alice until she put the DVD’s away and maybe this time would listen to me about why certain ones don’t play anymore because she scratched them.  I didn’t have to spend the time to find her orthotics.  I didn’t have to crawl under the dinner table scraping off dried Chex.  I didn’t have to make sure that in the ins-and-outs of getting ready, Alice didn’t go wandering off through an unlatched door.  I didn’t have to chase her down to go back and wash her hands.  I didn’t have to supervise her brushing her teeth.  The list goes on.  And on.

When we were expecting, my friend Dan who is one of the most linear and wise people I have met, passed on this little gem: it takes 1.5 adults to effectively raise a (typical) child.  In having three weeks away from Alice, I found that taking care of Stuart was, well – not easy – he has a hard time when he’s away from his mom, but in contrast it was so much easier.  Alice’s burden is 3x a typical child.  At least that’s what it feels like.  So it takes 4.5 adults to effectively raise Alice (or in our case, we sacrifice things like cleanliness and house maintenance in order to pick up the slack).  And in practice, this seems about right.  She see’s a speech therapist, a physical therapist, an occupational therapist, a ballet instructor (which between you and me is more physical therapy) and a math tutor.  That’s 7 adults, but none of them are full time except E and me.  I think it adds up about right.

I bring this up because E and the kids went off to spend time with family for the week and I’m in the process of going feral.  And when I say ‘feral’ for a man of my interests and my age, it means that I ask myself, “what things need to be done around the house that I can do alone and I couldn’t otherwise do with the kids around.”  So shortly after they left, I moved furtniture out of the dining room, sanded the flloor, sanded window sills that had gotten some water damage, sanded some of the living room floor, that had gotten scuffed over the years, cleaned the sanded areas with denatured alcohol, and put down a coat of polyurethane and had that done before 8:30.  And here’s the scary part about doing all of that: I wasn’t even pushing hard.  I took some time to play a game, web surf, took a trip to Home Depot, ordered replacement parts for a sander that self-destructed, and had a leisurely dinner.  And the final kicker: I still have energy left to write about it.

No doubt about it. Young children are definitely a burdenous gift and Alice even more so.  I love her to pieces.  The lonely time away is as much a gift as the full time together.  Yes.  I am conflicted.  Who wouldn’t be?