Celebrities: We’re Just Like You

Celebrities. We need gas. We need groceries. Our kids want to go to the park. We push them on the swings. Sure there are some divas, but a lot of celebrities are pretty down to earth. And it’s the same for families with Down syndrome.

Celebrities. And Down syndrome. We’re just like you.

We’re in line at Starbucks. You see us. We see you see us. We see the stare that lasts a half second too long. You look away. But you’ll look again. You have to. You have to be sure of what you’re seeing. Something at once familiar and new.

Wait? Is that…?

Celebrities. And Down syndrome. It’s hard not to look.

Some of you want to talk. We have something in common and you will tell us what it is. The checker at Fred Meyer lights up to see my daughter. One look at her uncorks his memories of working with adults with disabilities. It was amazing. It changed his life. A transformation. All these years he’s never forgotten. He shakes his head, remembering.

But we only came for milk.

We didn’t tie our shoes this morning and say, okay family, let’s go out there and show them what a family with a disability is. We don’t wear badges, we’re not official representatives. We have school. We have work. We have seven errands on our to-do list and if we stop and Have An Experience with every person we encounter we’re not going to make the dry cleaners by five.

Celebrities. And Down syndrome. Sometimes we just want to walk down the street, like a regular family. Sometimes we want to blend in. But you can’t put the cork back in the bottle.

Celebrities. And Down syndrome. You think we remember you. From a concert, a train trip, the taqueria. From my daughter’s school. Four hundred children, of whom 300 and their parents greet her by name, while I look blankly at their child, hoping to return the greeting. I have no idea. I’m so sorry people. What are we calling you now? Regular people? Civilians? Typicals? I have to tell you a secret. All you non-disableds? You all look the same. I can’t tell one blonde-haired girl in leggings from another.

What’s the alternative? People could ignore us? Turn away in horror? We could go back to segregating people, locking us in categories—physical, social, economic. Adjectives for all. Adjectives that unlock some doors, double-bolt others.

This all sounds really ungrateful. Would it kill me to listen to some lady at the MAX stop talk about her niece while her dog sniffs my shoe – is that my re-payment for having a child who wasn’t whisked away at birth? This might sound selfish and entitled but being grateful that my daughter lives her life in full view of society feels a little like being grateful I was never sold as a child bride. Um, sure, but in Portland, Oregon, kind of removed.

Undoubtedly someday, too soon, I will miss people talking to us. Stopping me to tell me how adorable my daughter it. We hear it all the time. The person at Powell’s has no idea we just heard this in World Cup and before that in the Rose Room and before that on the streetcar.

What a luxury to complain about someone complimenting your child. First world problem? First and a half? And it will seem either a paradox or disingenuous when I say that I appreciate every comment. I know that doesn’t make sense. Parents of other kinds of children assuredly hear familiar comments that fit their child’s “category”–twins for example. Parents in general hear many of the same comments over and over. “Got your hands full,” is a popular one.

Given that children with disabilities were until embarrassingly recently hidden away, blotted from existence, being noticed in public perhaps has a special resonance. And I don’t blame the public. The public hasn’t had much practice. And the fact that so many people aren’t sure what to say and reach out anyway carries special weight.

So while this will seem hypocritical, I thank people from the bottom of my heart for trying to connect with us. Maybe they’re trying to make up for the past. Maybe they are acknowledging the recent injustice. Maybe they see the little social triumph that is my daughter, in her pink flowered flip-flops stirring her hot chocolate to cool it down. And if they want to offer a little thumbs up? What crank could have a problem with that?

Not to mention, my daughter, is pretty adorable. But she’s six. Heading toward seven. One day 10 and 11, the awkward years. She’s going to be an adult. People can’t call her adorable when she’s forty. She’s going to need to be noticed for her other characteristics. She is also kind, thoughtful, silly as a snail sandwich, and as I tell her multiple times a day, a hard worker, which is the understatement of all time.

Celebrities. And Down syndrome. It’s good to have a fallback, after the looks fade. One day the smiles will dry up, the comments, the conversations, the adorables. Just like they say you’ll eventually miss every aspect of parenting you currently struggle with, I will hate myself for complaining, for not realizing it could be so much worse.

What if my daughter grows up and no one notices her? What if someone gives her a hard time, makes a rude comment, and no one looks, no one sees. And I’m nowhere. No one who loves her is anywhere. And the smilers? Well, lady, you told us not to. You told us to leave her alone and let her live. We’re just treating her like we treat everyone else. We’re busy and we’re tired and we don’t have time to notice anyone. So welcome to the club.

Celebrities. And Down syndrome. It’s a tough game. You catch us in isolated moments. Sweet moments. Awkward moments. Unglamorous moments. Maybe you think the moment stands in for the whole story. But even we don’t know the whole story. We are stumbling, struggling, piecing it together, while the opinions, the trolls, come quick and furious, darts at a dartboard.

Celebrities. And Down syndrome. Images in the public’s eye. Skin deep. One-dimensional.

Take a look.

A deeper look.

Beliefs

I don’t believe in God the Father or God the Mother, but more the Mother than the Father.

I believe in God my piano teacher who made ham and Miracle Whip sandwiches and Scotch Broth for lunch and her husband who said they called it Scotch Broth because there were wee little Scotsman in the can.

I believe in God the newspaper, crisp and clean until the moment it’s unfolded.

I believe in God the tufts of grass poking up through the cracks in the cement – cement! – and still it grows. I believe in God like that, that you could pave the whole world and all our hearts and still the grass, the thin, thin green, would find a way through.

I believe in God my grandparents and an impromptu picnic at the Legion of Honor all in our sunglasses and a Coca-Cola for everyone; I believe in God the best friend and sleepovers at her house and her dad playing Creedence Clearwater in the morning and feeding his parakeets; I believe in God the yippie dog who won’t quit and God the cat who could give a crap; I believe in God who didn’t create Earth, or will us here, I believe in God who is here like water is here, like helium and maybe arsenic are here, because they’re just here and we’re here and why not – why not try if it makes me one inch kinder than I am now.

I don’t believe in God with a map and a plan and making bad things happen to you so you can learn something. I don’t believe in prayer. I don’t think the imaginary letters get read but I think it matters that we write them.

I believe that you often get more than you can handle.

I believe in the God of questions, the God of no answers, the God of you think too much and why not close your theology book and give that man a sandwich.

I believe in God the flat and colorless, the bland and cardboard box. I believe in God the kazoo and upside-down soup pot banged on with a wooden spoon.

I believe a lot of things sound better when you bang on them upside down with a wooden spoon.

My daughter is banging on this world with a wooden spoon.

Saying, “Here. My life is your life. Believe it.”

***

IMG_0373A version of this piece was produced as part of Just Like You, a theatrical performance of stories written by mothers of children with developmental disabilities though a partnership between Well Arts and the Northwest Down Syndrome Association. The show ran January 10-18, 2014 at the Firehouse Theatre in Portland, Oregon.

I am posting this 11 days before her IEP meeting at Westridge Elementary School in Oregon.

Why You Will Never Be Happy

When you have a baby who has Down syndrome you find out that almost everyone in the world has a cousin with Down syndrome and they all work at a grocery store.

And they’re all incredibly happy.

You know, I hope most people are happy. I hope all kids are happy. And babies.

Are people as a species so unhappy that my now five-year old daughter reading library books on the couch stands out in such contrast?

There are many ways I would describe my daughter – brigadier general comes to mind – but I wouldn’t describe either of my kids as happy. Just like I wouldn’t describe them as people who breathe. Or sleep. Or clip their fingernails. There are just a lot of words I would use first.

I did have a new acquaintance tell me that my daughter was very loving. I looked around to see if we meant the same girl. It was indeed the one dog-piling her big brother. Thank you, I said.

It seems like we all want to be happy. Pills, teas, lavender lotions. Link after book after glossy magazine:

Are You Happy?
Five Signs That You Could Be Happier
Twenty Simple Ways To Get Happy

In the Parenting section is The Happiest Kid (Toddler, Child and I believe Teenager) on the Block.

As a special needs parent, I’m not sure happy is all you’re going for. I’m guessing you want more.

No one watches a nine-year old in a chess tournament and says, “She’s so happy!” The Happiest Child finishes soccer practice, piano lessons and French homework. Then she does her happy flashcards.

Maybe happy is what we work on when the checklist is done.

If you have Down syndrome, no one thinks you have a checklist. You float around finding ways to keep busy while the rest of us have real lives. And the reason we don’t find this a waste is because we tell ourselves people with Down syndrome are: happy.

Do we really want to give away “happy” to a sub-group? Remember the Native Americans who gave away Manhattan. We might want it back. Think it through.

Sometimes I dream that my daughter with Down syndrome will actually become a giant pill. A crank in a beret. I was secretly proud the day she dressed herself in all-black for preschool, Johnny Cash-style.

Do we typicals want to be happy, but only after we’ve earned our PhD’s? How do we want to be described in the Christmas newsletter? “Justin is so happy. He is forty-five years old. And just so darn happy.”

Isn’t it weird how happy can sound pathetic? When it’s on the cover of Cosmo it doesn’t sound pathetic. It sounds hot.

How will we get the right kind of happy? I want the good happy. The best happy. I want the happy that gets me my own parking spot.

Deep down, do any of us ever think happy is actually kind of optional? The icing on our achievement cake? If you had a choice between massive wealth or simple happiness, would any of us hedge our bets and go for the dough? I mean, how bad could it be?

When I Googled “Am I happy?” there were 1,470,000 results.

When I Googled “I am happy” in the declarative-  there were only 1,120,000 results – 350 million fewer. And most of them were the Pharell Williams song.

So I took the Oprah “Are You Happy Quiz?” to see if I was happy. It turns out I am. I was kind of surprised. The dark clouds, the Pacific Northwest rain, after two weeks it already seems endless.

I scored between 52-70. This placed me in the category “Your smile is your guide.” I’m happy.

Then it was my five year-old daughter’s turn. Since she has Down syndrome, I thought I should test this once and for all.

I found out that:

Yes, she feels better when she gives unconditionally to others.
No, she does not dwell on people who disappoint her.
No, she did not feel her life would truly begin only when the right circumstances came along.

She does not think giving a present is better than getting one.

She. should. get. what. she. wants.

Not getting what she wants does not help her develop as a person.

Life is good and she appreciates what she has.

She has no trouble making her health a priority.

All totaled, she only scored between a 30-49. This puts her in the category of “Needs to Look on the Bright Side More Often.” She’s “not miserable”.

But she is not happy.

She hopped off the chair to finish her puzzle. Red barn, spotted cows. A snack bowl of snap peas.

I didn’t have the heart to tell her.