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Pinwheels

Hard times and pie

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Well, it’s official.  Avery hates wearing a face mask and no amount of trying to make it feel fun (it’s like Halloween!  Or, we can all be bandits!  Or, I will give you a gummy bear if you wear it!) will convince him.  Because, really, when have I ever been able to convince him of anything that is not true?  He’s a truth detector.  And there is nothing fun about any of this.

So we will stay home forever, or until there is a vaccine or a cure.

And that is not the last of it, we have been talking a lot at my house about race, and inequity, and trying to learn and also think and listen.  Like many folks, I only know what I know, until I learn more, and then I can do better.  It reminds me of how I didn’t know much about disability until I had Avery.  And now because of him, we are especially careful during Covid times, which means we have stayed home during the peaceful protests in our town, and also, it’s why I know how important it is to show up, speak up, be counted and be heard.

Which brings me back to the bandits aspect of a face mask.  I really heard it when parents of black children said they needed to teach their kids, from an early age and so often that it became an instinct, how to behave around police officers.  It broke my heart, and also educated me, to their reality, and also, to my own.

Avery is no longer a cute kid with Down syndrome.  He’s a sometimes-awkward young adult with speech difficulty, apraxia, and he does not present himself in a typical way when under pressure.  He sometimes freezes, he sometimes has panic attacks, he sometimes goes into shock.  Which could all be interpreted in negative ways, if he were ever to find himself on the wrong side of a police presence.

So, we practiced.  Over and over, and we will continue.  We are learning to say clearly and calmly with his hands up, “My name is Avery and I need help.”  I hope this the right thing to teach him, and mostly, I hope he never needs to use it.  It’s a hard parenting moment, but one I realize I am not alone in facing.  Trying to teach your kids how to be their own advocates in an imperfect and sometimes scary world.  I am doing my best, and I am trying to soften it with the things that make Avery comfortable, like rewards, computer time, love.

And!  Pie.  Eagle Mount gave us rhubarb, so I made a strawberry rhubarb pie.  Because pie always makes the hard things a little easier.  Thank you Eagle Mount!

By jennifergg

I am a writer, a reader and a chaser-afterer of my blue dog Sam. Pinwheels is my blog about life with Down syndrome.

4 replies on “Hard times and pie”

My heart leapt with glee the moment I saw a new dispatch! Glad to hear you are all well and safe. Amazing how much time has passed since our old blogging days when the world was so different. This broke my heart in a million pieces and just wanted to send a note and a virtual hug your way. Thank you for keeping this up on occasion. ~Nadine

Thank you so much for the virtual hug and here is one back for you! I can’t think of a better way to spend our time in isolation than to reach out to others, if only virtually. Thank you for being in touch. And I am encouraged to write again, another blog post. xoxo

Jennifer — I randomly decided to pop into your blog; it had been so long since I checked it because you had stopped making entries. Imagine my delight to see you’ve returned! I was so excited to hear how the boys are growing (Braden is 18 & will be going to college next year…when/how do these things happen?). I hope that you are all doing well. We were talking about you a week or so ago with friends & shared the titles of Tom’s books with our male friend. Yes, we still have both of them (as well as yours). Now that you’re back, I have a reason to check in more often!! We have transitioned from 14 years of fulltime RVing back to a house — we built in Aztec, NM. It’s an adjustment! Take care of yourselves…

Hi! So good to hear from you!!! Yes time goes by so fast. Avery is in love with all the new things in his life, like swimming and kayaking and even ziplining! I never in a million years would have thought I’d type that sentence…thanks for being in touch! xoxo

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