Having a Child With Down Syndrome, Part LXXI: Go Stuart

Copyright © 2013 Stephen Hawley, all rights reserved.

Last year, Alice was involved in a number of summer programs.  There’s one in particular that stood out for her, so much so that she has been asking to go there on nearly a daily basis, and if you averaged it out, it is more than a daily basis.  This particular camp is offering a program that is perfect for Alice developmentally and is in her interests.  Of course we signed up ASAP.  This afternoon we got a call in which we were told that this was the most popular session and that it wouldn’t be cost effective  to have Alice there considering all the problems she had last year.

There are so many things wrong with this on so many levels.  It was given in the sweetest tone which completely masked the message: we don’t want your daughter here – because they couldn’t say that, but they said that.  And since it was a phone call, there’s no documentation.  E is very upset about this and I’m pretty disgusted and we spent a lot of time talking about this today.

Stuart could easily see that E pretty unhappy.  She was crying and Stuart gave her a hug and said, “Don’t worry mom.  I’ll always be here for you.”

Later at dinner, we were discussing it more and just to make sure he understood, we quizzed Stuart and he recounted what was going on accurately.  We praised him and he insisted that he would always stand up for Alice.  Oh, good boy!

Who is this group?  That’s a surprise.

Right now we’re planning on sending them back a note that sums up the conversation and give them every opportunity to do the right thing.  If they do, they get praise, and if they don’t, I’ve got a 6-year old who is ready to take them on.


Having a Child with Down Syndrome, Part LXX: Ballet Notes

Copyright © 2013 Stephen Hawley, all rights reserved.


MakeupIt’s spring, so for Alice that means that for the past several months she has been going to rehearsals for ballet.  Her local company, Pioneer Valley Ballet, does two large productions each year.  In the winter, they do The Nutcracker and in the spring, they do something different.  This year, they did “The Little Mermaid” and Alice was cast as a sea turtle.  Alice went to the rehearsals in a steady ritual.  Mom gets her hair ready and puts it into a bun with a serious armada of bobby pins, while Alice works on some crocodile tears about how much it hurts.  C’mon, Alice, you’re not fooling anyone – I’ve seen you drag a brush through your hair like you were hoeing a row.  Then she would go to the rehearsals and learn her part.

Alice has a love of the ballet and of theater.  For this performance, I was backstage dad and kept myself available for when Alice needed some assistance, but quite honestly, she doesn’t need us back stage anymore, and I don’t think we should be there.  Alice knows the routines and know what needs to be done and is eager to get there.  That tells me that it’s time to step away.


Putting on the Tights

When Alice walked on stage, I was in the basement watching on a video monitor.  She came out and like her previous Nutcracker, hit all her marks and did everything that had been asked of her.  I couldn’t see enough detail to see if there was any stage acting, but that’s OK.  She came back full of energy and very happy about being on stage.  As an aside, it’s clear how many people back stage know Alice and took time to talk to her and encourage her or congratulate her.  It’s a wonderfully welcoming organization and an outlet that it constructive and valuable for Alice.


Ready to Go On

Seeing her excelling–and she truly was–made me very proud.  If I had been wearing a shirt with buttons, it would need some mending. It’s been a pleasure watching Alice growing up doing ballet, from the early days when she was struggling to keep up.
Post Performance I
To now, where we go out and celebrate with a nice, late lunch together.

Post Ballet Tacos It’s nice to see how much she’s grown and how far’s she’s come.