Author: 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.

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!

Happy Saturday Night

Right now, all three boys are home and I can hear them upstairs, laughing about something that would probably take too long for them to explain to me for it to still be funny.  Something about computers, maybe a game, who really knows?  All that matters to me is the beautiful sound of their laughter, trickling down the stairs.  It’s something I don’t want to forget.

Happy Saturday night, to you and yours, wherever you are!

He’s the man

This is Avery, who loves to zipline.  If you told me this would be part of our life 15 years ago, I never would have believed it!

October is here!

And if you’ve got a person with Down syndrome in your family, you know that it’s Down Syndrome Awareness Month.  This is a terrific post about what it feels like for us, and there are more links in the comments to other families and their stories.  That’s what I love about this month:  it reminds us we’re not alone.

This is from ten years ago, at our first Buddy Walk.  Where did the time go?

 

 

 

Beautiful words

I love this post by Lisa Leonard, especially  this:

There is beauty in the dark places–where we least expect to find it. I have found on the hardest days, beauty shows up in real and miraculous ways”

On not getting back up

About a week ago, I fell off my horse.  Or, my horse got out from under me.  Or, I really don’t know what it was, it all happened so fast.  She’s a young horse and really quick and she was as scared as I was, after it happened.

I have a sprained wrist and a bruised tailbone and a little bit of a black eye.

The old saying tells you that once you fall off a horse, you have to get back up.  Right back up.  In the moments after I fell, I couldn’t breathe.  I couldn’t move.  All I could do was check in with each of the parts of my body, arms, are you okay?  Legs?  Fingers?  Toes?  And then I had to get the horse settled.  And then Tom said, “Are you going to get back on?”

I thought about it, and then I said, “No.”

I didn’t get right back in the saddle.  I made a choice, I said no.  I didn’t think it was wise to get back in the saddle, right away.  She was scared, I was hurt, and it just wasn’t worth it to me to risk me, or her, having another bad experience.

I think the lesson learned that day was not for the horse, but for me:  sometimes, the old sayings are wrong.  I get to do what I decide is best, and sometimes you need to take a while to heal.

Surprise, surprise

Well those seeds I planted not so long ago, without much hope or expectation, have grown, and grown, and grown.  Now, there is kale to pick and spinach and chard.  Also chives (lots of chives!) and parsley, too.  And peas!  I almost cried when I saw all the peas, it felt like such a gift!  It all feels like such a gift.

Two things to remember:  even when you’re not sure, plant the seeds; and life is full of surprises.

Are you thirsty?

Lots of people I know enjoy IZZE drinks, because they are delicious.  But did you know that the drink is named after Isabel Woloson, daughter of one of the cofounders of the company?  And what’s more, Isabel has Down syndrome.

It’s a great story.  You can read more here, and here.

(Thanks to Elizabeth for the info!)