Thursday, February 2, 2017

When your child wants to discuss his differences


Max and I were looking at a drawing he had made during an activity. Some of the magic marker was smeared.

"Drool," Max noted, matter-of-factly. 

Max drools because of the cerebral palsy. It's no secret. If you know him, you know it's part of who he is. (It affects about one third of people with CP.) He doesn't sense saliva gathering in his mouth, and doesn't swallow accordingly. Years ago, his physiatrist gave him a Botox injection in his salivary glands. It's supposed to reduce production of saliva, but it did nothing. (I keep meaning to find an investor for my Mommy and Me Botox Clinic idea.) I've also tried to take Max to oral-motor training sessions, but he hated them.

Our solution: thick, cotton bandanas and repeatedly saying "Wipe your mouth, Max!" On occasion, he'll grab his bandanna and dab. When we're around others, Dave or I draw our hands across our own mouths as a signal for him to do it.

There's a procedure involving reversing the salivary glands that's effective, but it seems like a drastic measure to take given that the situation doesn't affect him medically. We have considered scopolamine; it's the patch used for sea sickness, worn behind one ear, and it is effective for drying up saliva. His awesome neurologist said we might want to consider it, as the drooling can make him stand out from his peers. But I don't particularly want to put him on any additional medication, and the drool hasn't bothered him...yet.

"Max, maybe one day you'll start noticing when you drool," I mused out loud.

"I don't know," he said. 

And then, he had some questions. 

"Did you drool when you were little?" he asked.

No.

"Did Daddy drool when he was little?"

No. 

"Did Sabrina drool when she was little?"

No.

"Did I drool when I was little?"

Yes.

"Oh!" said Max. Then he walked away. I was all set to talk about it, and get into a bigger conversation about people having unique differences, but he was done.

The guidebook is all in my head. There is no "How to discuss drooling" section in the child development books. I wish there were.

Max's awareness is growing, so that's good. But it means he is also becoming more aware of his differences. It will be up to me and Dave to keep discussing what he wants to, and to remedy the drooling if he so desires. Meanwhile, we'll just keep telling him what a smart, handsome guy he is.  

To be continued.

12 comments:

  1. Tess goes in two weeks for the salivary gland ligation procedure. Hers is a more acute issue as she not only doesn't notice the excessive drool, she aspirates it and gets pneumonia. It also is prohibiting her from being able to safely use her much needed CPAP machine. Her docs are all on board that the other options are not good for her due to other medical conditions so this is where we're at. And I'm nervous and I hate having to make these decisions but I'll put on my big girl panties and deal with it. :)

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    1. Joanna, I hope Tess's operation goes well. I know, surgery is scary, but she will be in good hands. The payoffs seem more than worth it.

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  2. I'm just going to say that as a person with a disability, learning more about your disability and processing that information is a very important step on the way to acceptance and self-advocacy.

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    1. Kathryn, when you were growing up did your mom say say anything in particular to you about disability that was confidence boosting?

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    2. Not really. I mean she never called it a disability,she just called it hearing loss. I didn't call it a disability until I was 17,same year I declared myself a feminist. Honestly feminism proved to boost my confidence and give me total pride. What my mom did do was fiercely advocate for me. And I think that got me so far in life as it gave me the strength to advocate for myself. And finally she never really discussed hearing loss and just treated it as normal.

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  3. I was always open and upfront with my daughter and her cp. Imagine my surprise one day when I found out that she thought it would go away when she got older. Hard conversation to have. Obviously I missed something.

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    1. What sort of things did you tell her about her CP when she was growing up? I'd love to know.

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  4. Awesome job Ellen. Max, i drool you're awesome just the way you are.

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  5. Max really is such a smart and amazing kid! You guys are doing great things.


    Paige
    http://thehappyflammily.com

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    1. I try my best, and often wonder if there is more I could be doing. You know!

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  6. A thought provoking piece I've not given it much thought about having a conversation with my daughter as she is still young but your example with Max has prompted me to think, thanks so much :) xx

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Thanks for sharing!