Thursday, October 16, 2014


Since the Dancing Queen was very little, she hasn't quite belonged.  I wrote here years ago how she was treated like a doll by the bigger preschoolers (many younger than her, but bigger).  The practice has continued through the years, but the divide by DQ and her agemates continues to grow.  She has friends in her class, but there are definitely areas where she lags behind and it makes her seem so much younger.

DQ reads and writes way better than TRex did at the end of first grade, let alone the beginning where she is now.  She is doing remarkably well with academics.  It is socially where she falls terribly behind.

We've put her in dance class and girl scouts to help her interact socially with other first graders.  Unfortunately, she has to be in a special needs dance class because the "regular" class for 6 year olds will not accommodate her need to rest or slow down.  So, she is with a bunch of older kids, teens, and a smattering of little girls who are all cognitively below her and, socially, just as far behind, if not further.  This does not help, but DQ gets to dance.

Girl scouts is a bunch of girls her own age and in her class.  Unfortunately, instead of helping her belong, much of the time, DQ is simply made to feel out of place.  Girl scouts simply provides her with lots of opportunities to watch the other kids do things that she cannot do or must do in an altered fashion.  DQ has trouble with fine motor coordination as a result of her 22q deletion syndrome, so when the girls complete projects like rubberband bracelets, DQ cannot do so on her own.  When the girls simply run around and be little girls, DQ cannot join but for a minute because of her heart failure, so she is left to watch as they have fun with out her. For trips, DQ needs her wheelchair.  Any activity involving food (which activities don't involve food?) and there is not even an attempt to include DQ because it is too difficult to do gluten free.  (Don't even get me started on this--I can't send tree nuts for TRex to eat on his own, but when the class parties come and there are communal treats, they don't have to accommodate DQ because it's too hard! How much bullshit is that!!!!!!!!!!!!!!!)

So during girl scout meetings and events, DQ must watch a room full of girls just who are supposed to be doing things with her, exclude her.  DQ is left frustrated and angry. She lashes out. Who can blame her?!? But that segregates her all the more.

I use these times to help her understand that not everyone is the same. These are learning moments for her to accept her differences; to understand that she may not be able to do everything the same way, but she can still participate.  These are the same lessons DQ learns in school and everywhere else she goes.  There is not a day that goes by that we don't have to teach DQ that sometimes she will be left out.

But today, as the girl scouts chose to attend a play together at the time they are serving a lunch that DQ cannot eat (rather than a different showing that would not cause DQ to be singled out AGAIN), I wondered: When is it the time to teach the other kids to think of DQ's feelings?  When is it the time to say: this might require a little more thought, but we'll bring gluten free snacks so that everyone can belong?  Why should my daughter be the only one who has to change or has to learn?  Isn't one of the main purposes of inclusion to teach the rest of the world that disabled persons are people too and that they matter? DQ works harder than the rest of kids to simply breathe! Why can't they eat freaking popcorn for snack ONCE! When the kids are running around for ten minutes like chickens with their heads cut off (and I'm not supposed to be in the room), can't the leaders suggest they play a game that everyone can do? And if I'm not allowed to assist, are you going to make sure that the activities are able to be performed by all of the girls or should the girl scouts change their requirements to specifically exclude children with fine motor delays?!?!?

I guess I should be grateful that the girl scouts allow DQ to tag along and pretend like she belongs since the dance studio won't even do that.  But I'm not grateful.  I'm angry and I'm sad. I would pull her out if she didn't ask to stay.  Unfortunately, she doesn't know any better. Nobody outside of our family has treated her like a regular kid.  She doesn't know what it's like to have the girls actually play with her instead of at her or using her as the toy.  This is the only way she has ever belonged and it feels normal to her. But, for me, I feel like they are trying to force her out. They don't want to change, so they will make it so uncomfortable for her that eventually, she'll give up and they won't have to think about the disabled child. And frankly, I'm so exhausted that I can't fight this fight. They don't want to accommodate, so I'll keep teaching DQ. She will be a good person. As for all of those girls whose moms think they are so great because they treat DQ like a doll, those girls are losing the opportunity for real growth. It is a shame because if they were just guided, they'd do it easily.  But their parents are too blind to guide and I have too many battles on too many fronts to deal with this one.
Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
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