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.

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