Wednesday, February 3, 2021

In which Max advocates for himself by text

Max is a pretty comprehensive communicator these days. Articulating consonants remains a challenge, though I have increasingly been hearing "b's" and initial and final m's, d's and g's are also getting clearer. He regularly emails his therapists at school; most recently, he apologized to his PT for accidentally missing an appointment. On occasion, he has taken it upon himself to cancel a session. He especially enjoys calling his grandparents.  

Max is also, like any teen, a frequent texter. His Apple Watch has been a game-changer. While he can't grasp a phone and text, he has done so from day one of owning the watch: with my sister, Judy; with his Aunt Em, who teaches him yoga; with Dave, his bff, all day long. Some nights, Max is downstairs in the basement (aka the Max Cave) and he'll text Dave to bring him apple cider. Yes, room service is available in our house. 

I had a recent exchange with Max that really wowed me, because I could see the progress he's made with expressing himself and advocating for himself. As parents of children with disabilities, we are often hyper-focused on making sure their needs are taken care of and enabling them to do their best with talking, moving, learning, all of it. But as your child gets older, you realize that what's just as important is helping them learn to ask for what they need. Because that fosters independence, and because we won't always be there for them. 

I was driving in my car, out on an errand, when Max texted: "I'm going to walk outside, wear jacket, hat."

Max is really good at spelling. His mixed use of upper and lowercase remains a mystery, but, whatever! Poetic license. 

I appreciated that Max was being responsible about wearing a jacket and hat. But it was frigid out. So I did what any good parent would do: deflected to the other parent. I pulled over and responded, 

Max continued: I want air, OK, I wear winter hat, I'm bored inside. 

Not once have I ever heard Max express that he was bored—this was progress, although the sad kind. Pandemic boredom in our house has reached all-time highs as of late. The phrase "I want air" also stood out. It is hardly surprising that he wanted that, but it was stupendous that he said it.

Still: The real-feel outside was below zero. So I said,

And Max, in an admirable show of advocacy, would not let it go:

Max had switched gears, and decided that instead of taking a walk, he wanted an ice-cream run. (To Max, any weather is ice-cream weather.) 

Meanwhile, I had been processing all of this and decided that if Max really bundled up, going outside would be OK and good for him.

In the end, he and Dave ended up going for a drive or a change of scenery And that evening, they got ice-cream.  

On the surface, this was just a little text exchange, but it says so much about how far Max has come and his ability to advocate for himself. 

There are doctors, specialists, therapists and even educators who will tell you that the potential for progress as children with disabilities get older peters out.   

Don't you believe them.

1 comment:

  1. Max is amazing and this made me smile and got my day off to a positive start. Thank you, Max!


Thanks for sharing!

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