Tuesday, August 14, 2012

Raising kids with special needs: The American cheese milestone



It's how milestones happen with Max lately: I'll suddenly notice him doing something new and incredible, only it's not something you'd ever read in one of those child development books or newsletters. It's not a milestone that would necessarily impress anyone else, or one most people could notice. Last night, for instance, I celebrated the American cheese milestone.

Max likes a slice at bedtime. "Eeeess!" he'll say, and I'll dutifully go downstairs and get a slice along with a couple of paper towels. Max eating cheese in bed has traditionally been a messy activity; he'd down some, but pieces would fall out of his mouth. His food retention has been an ongoing challenge: Because of the cerebral palsy, his tongue and chewing aren't so coordinated (CP has a way of messing with muscles in all parts of your body).

Back when Max was a baby, he had trouble nursing because of that. When I started giving him a bottle, a lot of it would dribble out and we'd go through a gazillion burp cloths every day. Once he was on solids, he'd spew those out, too. Feeding him one jar of food could easily take a good half hour. Spoon in. Scoop up what came out. Spoon in. Repeat, repeat, repeat, repeat.

I'd known that Max was going to have issues with movement, possibly with speech and other delays. The feeding issues blindsided me. Eating? My baby, already facing so many challenges, was going to have issues with eating?

I'd never heard of a baby who wasn't able to keep food in his mouth. It was just too much.


Somehow, though, we got enough food and milk into Max; he was quite the chubster. Often, Dave fed him; unlike me, he didn't get distressed by what was going on.

It took years for the eating issues to improve yet they did, slowly but surely. Suddenly, Max wasn't dribbling as much oatmeal out. Suddenly, more spaghetti was staying inside his mouth. Suddenly, ice-cream wasn't an ordeal (and, man, he was determined to keep as much of that in as possible).

Drinking liquids has been trickier. We thicken them up with a scoopful or two of Hormel Thick & Easy. But you can't put the powder in water, and sometimes drinking a glassful makes him cough. "Small sips, Max, small sips," I'll say.

Back to the cheese—oh, that beautiful, gorgeous piece of American cheese. I was sitting in Max's bed last night. I usually hold the cheese for him, because when he does he grasps it so tightly it mushes up. As usual I split the piece in half, folded it over, and placed it on the back molar so it was easier for him to chew, just like the feeding therapist once taught me.

Max was happily munching away when it dawned on me: He wasn't spitting any of it out. No flecks of yellow on his pj's, no bits on the comforter. It stayed in his mouth.

S-C-O-R-E!

It was a small thing, but it was a big thing.

It was not unexpected but it still seemed astonishing.

It was one more eff-u to the cerebral palsy.

It was the sustenance that feeds my hopes for Max.

I didn't say anything to Max, didn't squeal, didn't do a happy dance. I just celebrated the American cheese milestone in my heart.


Image: free-extras

21 comments:

  1. Okay, that last line choked me up a bit... Way to go, Max... and Mom.

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  2. That's awesome! Way to go Max!

    When Eli was able to drink through a straw for the first time, I cried, right there in the resteraunt. My sister thought I was nuts, everyone can drink through a straw, right? But that took years of work for him-- it was HUGE! And the moments you have to work that hard for-- those are the ones you remember!!!

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  3. Way to go Max! Gotta love that cheese - literally! So proud of you!

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  4. YAY Max :) Max will never know how much you love him just like I didn't know how much my mom loves me before I read this post the stuff you guys have to think about just blows my mind :)

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  5. Way to go Max!!!

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  6. Great post! Go Max and Mom! This post really got to me. It reminds me so much or where we are and where we have been.

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  7. Way better than a tick the box milestone! I agree about being blinslided with eating/drinking and speech....i was prepared for mobility but not those things!

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  8. I personally think the best milestones are those of the American Cheese variety; no one else really knows what a big deal it is, but it sure is nice to share it!
    Way to go, Max!

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  9. Congratulations!

    It reminds me of my friends celebrating their son picking his nose for the first time. Index finger isolation!

    Here is a different type of drink thickener which you can use for water too. http://www.simplythick.com/

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  10. That's wonderful! You know it's the little things that count. When you have a child with special needs the little things just make the big so much more worth worth.

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  11. Yeah, Max!
    Reminded me the day my friend Jose, who has autism, just like that, handed us a straw after we asked him to - we always include him in the conversation and ask for things like "pass the salt" or "hand me the water bottle"... he had NEVER followed a request like that before! =) Cheesecelebration!

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  12. Hooray for Max! This warmed my heart. I have two kids with autism so I understand too well the "not in the book" milestones. Happy to be following your blog!

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  13. WHoo-hoo!!!!

    When it comes to the thickener, have you ever heard of Simply Thick? It's a gel and we LOVE it. It can go in any liquid, including breastmilk (I believe it's the only thickener that is compatible with breastmilk). There's no mess because we just pump it straight into J's sippy cups. Plus, the company is really awesome. I blogged about the above and beyond customer service we received from them after they learned that M had used up half our bottle one night, thinking it was hand soap! Anyway, since the powder you use can't go in water, you might want to look into Simply Thick! :-) http://www.simplythick.com/

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  14. Just had to say that Max is really, really cute :)

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  15. Yay Max! I'm also the mom to a baby who has mild CP. I was completely shocked by Noah's mobility issues because he seemed like a typical baby with no delays. I was also surprised to discover that he had high tone in his left leg. Though I still think Noah is lucky as he only has mild brain damage. We escaped many of the issues I know kids with CP have to deal with such as feeding and speech problems.

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Thanks for sharing!



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