Let’s Talk

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I want to talk about Down syndrome.
Specifically, I want to talk to you about how to talk about Down syndrome.

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I’ll start with a confession. In my previous life, people with disabilities made me a little uncomfortable. I didn’t know what to say, how to act. I didn’t realize I was making it all about me. But I forgive myself. And I forgive you too. It can be uncomfortable. And well meaning people, in their attempts to be cool, accepting, inclusive, can say things that are actually tiny blows to those of us on the other side.

Things you might be tempted to say that make things awkward and uncomfortable…
“That’s ok”
“I’m sorry”
“How high functioning is he?”
“Is he going to have to live with your forever?”
“Did you know?”
“I *thought* there was something wrong with him”

Because what I think is…
“I know”
“I’m not”
“Excuse me?”
“Excuse me?”
“Yes, but let’s get to know each other better before you ask me personal questions”
“What is wrong with *you*?”

Ok, so then, what should you say?

Well, how about…
“he’s adorable”
“His eyes are amazing”
“He’s got an infectious laugh”
“There’s a kid with Ds in my son’s class, do you know so-and-so?”
“I know/love someone with Ds”

And leave off with the personal questions; but rest assured, if you get to know me, I’ll probably bore you to death with personal information in no time.

Black Pepper, Lemon , Tart Cherry

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Tart cherries. Preserved in vodka. Flavored with black pepper, lemon.

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A friend posted a picture to facebook, a jar of deep red brandied cherries. so of course I ran right out to the local farmers market to grab a bushel of the sour little gems. I didn’t have any brandy, and I’m not a huge brandy drinker anyway, so I started kicking around some ideas to spice up vodka and make a cordial worthy of these little seasonal treats.

I love black pepper infused simple syrup for an unexpected flavor in summer cocktails. Lemon juice and rind to bring added depth. Vodka to preserve, will also turn into a lovely cordial that will taste great on the rocks or with soda water after the cherries and lemon infuse the vodka.

Recipe:
1-2 pounds tart cherries, pitted
3/4 c sugar
3/4 cup water
1 Tbsp black peppercorns
Rind of one lemon, no pith
Juice of one lemon
2 c Vodka

Directions:
Bring sugar, water, peppercorns, and lemon rind to a boil, boil for several minutes until sugar is completely dissolved.
Let simple syrup seep 1 hour to overnight to infuse syrup with flavor, strain the mixture and add syrup, cherries, and lemon rind, lemon juice, and vodka to large glass jar.
Let sit, agitating periodically, for 6 weeks.

4 is…

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Suddenly looking all grown up.

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Knock down drag out tantrums.
Sweet and snuggly.
Interesting conversation.

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High highs and low lows.
Surprisingly helpful.
A huge pain in the ass.
Lots of laughter.

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And yeah, lots of tears.
Pretty good so far.

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An Open Letter to Anthony Bourdain

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Hi Tony
Can I call you Tony? The likelihood that you’ll even read this is slim to none, so I’m going to go ahead. Let me start off with the sycophantic “I’m a big fan” because I am. I eat and travel through you and have for years. For someone like me, middle class, two kids, job in a steel mill in the Midwest, reading and watching you is as close as I’m going to get to my dream vacation in Vietnam. I’ve always liked that you say and do what you want and make a living at it. Right now I’m reading your book Medium Raw, and while I don’t find your language offensive- I can throw around the F-word word like a sailor myself (I work in a steel mill, remember)- I’m having trouble getting past your flippant and rampant use of the word “retard” (and other –ards).

See, I’m a food loving foul mouthed fan, but I’m also the parent of a child with Down syndrome. One who was born that way, before he ever had a bite of the wretched “food” you’re talking about when you say we should tell our children that eating McDonald’s could turn you into a retard. I’m bothered that this is the worst thing you can think of to scare your little girl, that she might one day end up like my son, and I’m bothered that you’re teaching her to view children that will soon be her peers as though they are something to be feared and discarded.

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I’m not sure what to do, because certainly I can no longer let my kids watch your programs, the travel shows we love and The Taste which is one show that we can all watch as a family on the rare occasions we are all in the mood to watch TV at the same time. I’m bummed that the most accessible escape to places far off and infrequently traveled is marred by what I’ll always think of when I think of you now. Unless…

I know what I’d do if you were someone I knew in real life. If you were someone I knew, I’d privately tell you how much it hurts to hear things like that, how hard we are fighting to abolish that kind of hurtful language that goes against everything we hope for our children. I’d appeal to you as a parent, and as a human. I might point out that you sound like Ann Coulter when you talk like that, as surely that should snap you out of it.

I don’t want you to censor yourself, I guess I’d hope to change something in you, the way you think about people with intellectual disabilities. I’d like you to know they are people, maybe even fans, who think and love, and travel, and eat. I just want you to think about your audience, as I hope to raise both my kids to be food and travel lovers, and Anthony Bourdain fans.

Optimistically
Drea (Mom to Cop and Hen, foul mouthed metallurgist, fan)

 

365 Fridays

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I’m participating in Catch the Moment 365 Project this year, hosted by Mindi from Stavish Stills Photography, Stephanie from Behind the Camera and Dreaming, and Carrie from My Life-Our Journey.

 

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Spring Cleaning- Chickens

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I’m going to tell you a little secret, despite my enthusiasm for keeping and raising backyard chickens, I’m actually, deep down inside, in a place I don’t like to admit exists, kind of terrified of them. I’m scared of birds and getting pecked.

So why on earth would I want to keep chickens? For one thing, I like the idea that we can cultivate our own food and I can teach my children stewardship and where their food really comes from. For another thing, I have always had this idea that backyard chickens are just really cool, and I wasn’t wrong, they are, this was a great decision for our family. But finally, I really like doing things that scare me. I have learned that once you face your fears, most of the time you’ll discover they were unfounded, and next thing you know, one less fear.

And so I sit, Monday morning, one fear lighter.

We have two silkiess, a small breed with fine fluffy feathers and gentle dispositions. Because their feathers are so fine and so fluffy they get so much dirtier than our other chickens. This was a wet muddy winter. The silkies needed a bath. Surely they were not going to like this, right?

 

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Well, I was surprised. Although everything I’d read said most chickens would actually, really enjoy a bath I was skeptical but… they actually really liked it. They chilled out and let me wash their feathers, their feet, and didn’t bat an eye when it was time for the blow dryer.

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Cop was very gentle when he was petting them, and Henry helped when it was finally time to take them back to their nice clean coop the next morning. I always hold my breath when Hen picks up the chickens, imagining a Lennie situation, but he is calm, gentle, and responsible every time.

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365 Fridays

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I’m participating in Catch the Moment 365 Project this year, hosted by Mindi from Stavish Stills Photography, Stephanie from Behind the Camera and Dreaming, and Carrie from My Life-Our Journey.

OK, so maybe I should just throw in the towel, it’s only March, and I’m missing days left and right. I’ll have to think on it. But for today, here are photos from the last two weeks.

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A Day In The Life (With Down syndrome)

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What is different about life with Cop? Not much actually, compared to life with any other kid.

The differences are small, or maybe they just seem that way because we are who we are, all of us in Eisenbergia.

A day in the life goes like this: Wake Eat Therapy Sleep Eat Play Sleep Play Eat Read Books Sleep

Most of that probably sounds familiar if you have kids. Copley has an older brother Henry, and they both went through the same phases, though Cop’s phases last longer. DSC_0439 Cop is 20 months old. He is funny, he makes jokes, he loves to laugh. He can’t walk or crawl, but he has figured out his own way to move around the house at lightning speed- usually when we forget to close the bathroom door and he sees an opportunity to play in the dog’s water bowl. He has started saying “boo” when he wants a book and “mo” when he wants more. He likes to go off by himself and play legos sometimes. He sleeps through his big brother’s bedtime foolishness. He freaking loves waffles. I make them every Sunday.

He pets the cat, he is nicer to the animals than his big brother is. Hell, he is nicer to everyone than his big brother is. He is a snuggle bug. He is a jelly bones (he has low muscle tone and loose joints). He never hesitates to let us know when he is mad. Or happy for that matter.

How has Down syndrome changed our lives? Entirely, completely, and not at all.

Would we change our lives, would we wish for a life without Down syndrome? Not for a minute.

321 Carry Fundraiser

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Tomorrow is the last day to get your 321 Carry t-shirt! Don’t miss it!

365 Fridays Week 8

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I’m participating in Catch the Moment 365 Project this year, hosted by Mindi from Stavish Stills PhotographyStephanie from Behind the Camera and Dreaming, and Carrie from My Life-Our Journey.

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So, it’s pretty early in the year to play the over worked mom card two weeks in a row, but last week I was in it. I didn’t have much time to think about photos. Maybe I should throw in the towel on the 356 project…