Monday, March 4, 2013

The Reality of Difference

I love my little girl.  But sometimes reality comes rushing in and I realize how different she must look to  other people, especially children.  This came crashing home today.

Brianna had a pre-op appointment today for her surgery tomorrow (adnoid removal and ear tube placement, nothing big, don't worry).  By the time we got done it was too late to take her back to school, so I came home, gave her a feed, then she, Liam, and I went to go pick up Garin from school.  Everyone was full of energy, so I let them run off to the playground in front of Garin's classroom to play.

There's a small double slide on the playset.  Brianna loves the slide, so she walked up to the slide and sat on the bottom.  One girl (a classmate of Garin's), kept sliding down to Brianna and nudging her with her feet and then went around.  The third time, she slid down and pushed Brianna off the slide totally.  I calmly walked up and told her that Brianna isn't able to move very well and to please not push her off the slide, and then moved Brianna out of the way of the slide.  Now, I understand that she might not realize that Brianna doesn't "get" slide etiquette, and that there are many five year olds that might push kids off the slide that don't get out of their way, even children who are obviously smaller and younger.  However, this girl's parent was watching the whole scene and never told her daughter NOT to push Brianna with her feet, even after I intervened.  That annoyed me.

After a few minutes, the majority of the children cleared out and there were only about 4-5 girls left running around with Garin and Liam, and Brianna resumed climbing on the slide.  At this point she started climbing up the slide.  Something she dearly loves to do and has been doing quite a lot recently. A couple of the girls kept staring at Brianna, probably because of her squeals and flapping arms.  This doesn't upset me, but it reminds me of her differences.  Brianna got to the top of the slide and was trying to pull herself off and lost her balance, tipped back and slid down the slide face up and headfirst. Brianna seems to have some vestibular "thing" going on that sets off seizure-like behavior (doctors aren't convinced they are seizures, they look like seizures, so that's what I'm calling them).  I pull her gently off the slide and her arms and legs start swinging around, she's flipping herself over - I think trying to get control of her body (this is where they are really probably NOT seizures, because she seems to be aware that her body is no longer under her control, and she gets upset and tries to "fix" herself).  I try to calm her and talk to her, but there was a good solid 30-45 seconds of uncontrollable body movements, and when I hold her she tends to grab on tightly and painfully.  At the end, she started to gag (probably because saliva drips into her throat and once the fit is over, she gags on it), and spit up a tiny bit.  Then, fit finished, she stands back up and resumes trying to climb back up the slide.  Have I mentioned what a trooper this girl us?  Of course, the children during this 1 minute episode are staring (not Garin and Liam, they're still running around with glee because hey, this is normal).  Kids resume playing when they see Brianna is no longer exhibiting the strange behavior.

Brianna was sitting at the bottom of the slide hanging out when Garin comes flying down the slide and accidentally bumping her off.  He promptly says "Sorry, Brianna!" and I lightly scold him for not paying attention and hurting her, then I ask him to give her a hug.  Brianna, in the meantime, is nonplussed and chattering away to herself (Garin can get away with a multitude of harms to his sister who adores him).  Poor Garin gets visibly upset, because he really does adore her as well and considers himself her protector, and he was mortified that he upset her.  Meanwhile, his female friends are looking on, which I think embarrassed him more.  When they stopped paying attention, he ran over to Brianna to give her a big hug.  One of the girls says to me, very quietly, that "It looks cute".  I'm taken aback for a moment, then I realize that she is referring to Brianna.  And I realize that the little girl has no idea how to characterize Brianna, that she had probably never encountered a little kid that acted quite like that.  I said, very nicely, "yes, she is quite cute, thank you".  And then the little girl says to me, "when I hurt my little sisters accidently I say sorry", and I gave her a smile and said that was very good.

It just made me realize that the older she gets, the more obvious it is that she is "different".  And that she will not always be treated with love and respect.  We have been very fortunate to be in a neighborhood of children who have been amazing with her, and, especially the older girls, have shown her love and acceptance.  She adores her neighborhood friends.  It makes me sad to know that there are others out her that will view her as weird and different.  And I know I can't always shelter her, or my heart, from that reality.