Thursday, April 2, 2015

This girl's small act of kindness toward my son was actually gigantic


In the last couple of weeks, I haven't stopped thinking about this one thing a friend's kid did for Max. Maybe it won't seem like a big deal to some. But if you have a kid with special needs, you'll know how major it is.

Our family was at the bat mitzvah party of the daughter of one of my best friends. She has three girls, all of them awesome. There was a whole lot of dancing going on as a DJ spun tunes. Max wore his headphones (loud sounds unnerve him), and for a while he wandered around the dance floor, taking everything in and charming the photographer. A couple of times, Sadie—the middle child—came over and started dancing with Max, waving her arms and grinning. He just stood there, amused (I think he could really get used to having girls dance around him).

Other kids treated Max with the usual mix of reactions. A couple of boys his age standing nearby stared at him until I said, "Hello, this is Max," upon which they waved then walked away. Some girls his age smiled at him. Little kids gave him curious looks.

And then, a bunch of kids jumped onstage, mostly girls. Max asked me to help him up there. He stood smack in the middle of the stage, looking around. He wasn't really dancing, though I knew he was grooving in his heart.

Happily, I watched him enjoy himself. And then, this: As Sadie danced she leaned over, picked up Max's bib and dabbed at his mouth like it was the most natural thing in the world. It happened in three seconds, Max didn't even notice and they all kept doing their thing. I felt even happier.

Max drools because of the cerebral palsy, which causes oral-motor control issues. He isn't aware of the sensation, so he often neglects to dab himself with one of the cotton bandanas he wears unless one of us reminds him, "Max, wipe your mouth!" I haven't yet regularly used the Rx skin patch, scopolamine, that could help because Max doesn't care about the drool and I don't want to put him on more meds. But he's getting older and it's getting to a point where it's setting him apart from his peers and so soon I may go for it, with his permission.

Kids tend to gape at the drool. Some seem grossed out by it. But Sadie, she just matter-of-factly leaned over and dabbed. The sort of thing you'd do for a younger child who had something on his face, only she didn't hesitate to do it for an older kid. 

"Girl dabs boy's drool" isn't one of those occurrences that would make Internet headlines, unlike the stories of, say, teams letting kids with disabilities make touchdowns at football games. Grand gestures are rare, though, and just that: gestures. Small, everyday, no-biggie acts of consideration are exactly what kids with disabilities need, coming from peers who don't think twice about it.

As social and personable as Max is, he doesn't easily fit in with other kids. I always hope that there will be at least one child who makes an effort to talk with him, to draw him in, to include him. I certainly don't expect personal care, exactly why I was so pleasantly surprised to see Sadie lending Max a helping hand.

It was a small act of kindness. But it felt gigantic, to me.

16 comments:

  1. Sadie sounds like a wonderful girl raised by wonderful parents.

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  2. Menschy kid, raised right. (And I've always loved the name Sadie...)

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  3. Aww I love it. You're so right. It's not about 1 time grand gestures. (Even though those are nice). But really, it's about good attitudes and genuine respect and the way we treat each other everyday.

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  4. Sounds like Sadie is a wonderful girl!
    You may also want to talk to Max's doctors about Botox injections for the drooling. I believe I remember reading he had Botox in the past for his spasticity. Botox is great because it stays in the salivary glands, it does not spread through the body and cause side effects. I'm a PA at a neurology practice and we have quite a few adult CP patients that receive Botox injections for sialorrhea and it is very effective for them.

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    1. Thanks, Courtney. Yes, he's had Botox injections in his left hand, which was helpful with loosening them up. When we tried Botox in his salivary glands, though, it didn't have any effect. Perhaps it is worth trying again, I appreciate the reminder!

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  5. That is indeed so nice....n Max looks so handsome

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  6. Didn't see that coming. Actually brought a tear to this old lugs eye. What a great kid.

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  7. Have you considered surgery to remove salivary glands? We did that for our Max (CP with spastic quadriplegia) about a year ago, and it's given us a huge increase in quality of life. He's much younger than your Max, though (he's just short of 5), and it might not be as well received at an older age. Plus, the scars on his neck from the surgery are still quite noticeable. We've been able to ditch his bandanas, though, and don't have to worry about the soaked shirts smelling of saliva.

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    1. SO glad to hear this has worked for your Max! Last spring, I took Max to see an ENT who works with kids with special needs. He talked about surgery to reverse his salivary glands (not remove any). I'm planning to try non-invasive options first before we'd go that route.

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  8. That's one of those special talismans you hold onto during a rough day. I am so happy this happened and you saw it. This is the good stuff.

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  9. Speaking from the perspective of someone with a developmental disability, this story kind of weirds me out. Sadie performed a personal task, reached into Max's space, without asking him. That's a violation of his personal boundaries to me. People think it is okay to violate the space of disabled people because they think they are helping them, but I think all kids should be taught that their body belongs to them, only them, and that they don't touch another person outside their family without that person's express permission.

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    1. Kate, thanks for sharing your perspective, and I totally see where you are coming from. From my perspective, as a mom, it pains me to see Max being excluded by peers, and so this girl reaching out to help him was a welcome thing. Especially because the drool can be alienating. And Sadie only meant well, obviously. But you are right, the best thing for Max would be for him to do this for himself one day. He lacks that awareness right now, and it's something to be nurtured in him. Again, I appreciate your making me consider this.

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  10. I have CP - right side hemiplegia , I'm an adult now but I remember those small acts of kindness from childhood and through to today and they really touch my heart. The small acts of kindness generally involve people having an instinctive awareness about how to assist me in a situation that is very quick and in the moment, and then politely offering that assistance and that person seeing it as NO BIG DEAL and being completely non judgemental about it.
    Examples -
    1.Boy I hardly knew who was sitting in a car with me as I was putting my seat belt on ( my right hand doesn't do much in the way of fine motor skills) and this boy leaned over and held the seat belt clamp still for me- which made it easier for me to put the belt on with one hand .
    2.Kids at school holding the ruler for me as I ruled margins on a page (one girl volunteered to rule all the margins in my exercise book for me - I was so grateful)
    3.And also in high school - I realised I had been drippling a bit (I sometimes dripple on my right side when I'm tired) anyway I had been drippling a bit in class at high school and I looked over at a friend who I realised would have seen and I said "oh I have been drippling did you see that"- just to make light of it. And this friend said oh yes you do that sometimes- she said it in a no big deal doesn't matter non judgemental way . I just appreciated that it was no big deal to her.

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  11. Ugh now you made me cry! Yay for Sadie abd yay for max :)

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Thanks for sharing!



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