“Never go full retard”

Saturday was a rainy day so S and I took the girls and headed out to the suburbs to make a friendly visit to IKEA.  It was one of those outings that we weren’t 100% sure about doing.  Traffic, rain, cranky kids, the chance of spending too much money on things we never knew we “needed” until we were there.  But off we went. 

I was grouchy because it was my turn for the gooey eyes.  I had to wear my old pair of glasses with an even older prescription.  The sun hurt my eyes and I couldn’t figure out a way to fit my huge sunglasses over my thick eye glasses.

Walking into the store, Zoya decided we all needed to try the large revolving door.  Lainie and Zo and I shared our compartment with a group of teenage guys.  S and Polly chose the open/close door route. 

One of the teenagers thought it was funny to do the hokey pokey with the revolving door, he stuck his right foot in and out and our whole compartment started and stopped, started and stopped.  His peers reprimanded him.  Other people gave him dirty looks.  Elaina grabbed my hand.  This was exactly what she was afraid of.  Getting stuck in the door.

Another guy in the teenage group told the kid messing around with the door he was a retard.  He called him retarded two or three times.

And I felt a stab in my heart.  My shoulders stiffened.  I gulped and stared at the kid.

I wanted to hold Polly up to him and say that at some point in her life she will probably officially be labelled ”mentally retarded” on a piece of paper stored away in a tan file cabinet.  I wanted to tell him that my third daughter has Down syndrome and that his words offended me greatly.

I looked down at my arms.  They were empty.  I remembered that S had Polly with him.

I said nothing.  I did nothing.

I walked away from the revolving door holding tightly to my other daughters’ hands.  My eyes were watery and it wasn’t because of Pink Eye.

Now, I’ve heard the word “retard” a bunch of times.  Though I am ashamed to admit it, I am sure I used the word in high school and junior high.  Some family and friends have said it in my presence.  Most have quickly apologized.  I graciously accepted saying I understood they were not thinking of Polly with this term, therefore I was not offended.

I am learning that I need to be offended for my daughter’s sake.

Polly is two years old.  I have learned more than I ever deemed possible about stereotypes and the world of disability and about actions and words that hurt people with disabilities and their families.  And I’ve learned that like it or not, I need to be an advocate for my daughter.  Of course, there is still a lot to learn.  My family is a part of the disability community.  We are blessed that we are. 

This morning I add my voice to many others; mothers and fathers, siblings, friends, grandparents, to fight for those who some times are unable to fight for themselves.

Ben Stiller’s new movie Tropic Thunder premieres today in Los Angeles. 

S and I have enjoyed some of Stiller’s movies over the years.  But we will not be watching Tropic Thunder. 

Because of a scene in this movie now there are t-shirts for sale with the words “Never go full retard.” Go here to read what Timothy Shriver, Chairman of the Special Olympics wrote about the movie for the Washington Post.  Go here to catch a paraphrase of the scene I am referencing.

I am writing this post because I want to fight against the phrase “never go full retard” albeit in a small way.  

In my mind’s eye I see another family, a few years down the road, stuck in a revolving door at IKEA, a mother holding a new baby who happens to have a disability and some kid telling another to “never go full retard.” 

The goal of this post is to save that mother from that pain.

In the Zone

This post is part of this weeks Hump Day Hmms.  Click over to read more about what others are saying about comfort zones.

Last Thursday night I went to a Moms Night Out for my kids’ school.  It took me an hour to figure out what to wear before I left.  It was not going well.  In a moment of pure insanity, I even tried on a pair of maternity jeans I had set out for a friend who is expecting.  While admiring the boot cut fit, I schemed about a shirt that would actually cover the elastic band around my waist.  Then I imagined bending over at the party and showing off my secret to neatly dressed, put together women and I peeled off the jeans and chucked them across the room. 

Going to the party was definitely out of my comfort zone.  

Which begs the question:  where is my comfort zone?

And the answer:  I have no idea.  I have not been comfortable for years.

There have been many changes in my life in the last six years.  Sometimes I liken myself to having gone through menopause several times. 

First we moved to Kiev, Ukraine.  Elaina was 2 1/2 and Zoya was 9 months old.  For two years my husband helped out with a church plant in another part of town while buying groceries, paying bills and looking after his little foreign family.  I studied the Russian language full time and learned to walk to the Metro station looking down at my feet.  Things that came easy to me, American mannerisms like smiling at strangers, wearing your shoes in the house and Kraft Macaroni and Cheese were boxed up and left in my mom’s attic over the garage in Michigan.

Time went on.  I tucked comfort around my children in our little seventies style apartment like a warm fleece blanket the only way I could think of.  I mixed our new culture with the old, pouring the American Happy Birthday song in with the custom of not wrapping birthday gifts in Ukraine.  We dressed the girls up in costumes for New Year’s Day and pretended it was Christmas.  I found the only store in Kiev that sold Lasagna noodles.

Everything I did in Ukraine was uncomfortable, until one day it wasn’t, and I was able to conjugate the verb ‘to buy’ in Russian’s past, present and future tenses.  After three years there I noticed friendly faces around me, offering to show me how to make a warm compress for my daughter’s cold instead of reaching for Tylenol.  We were part of a church that was growing closer to one another and to God, and my oldest daughter was learning addition and subtraction in her Ukrainian preschool.

I almost felt comfortable.  So we decided to try for our third child.

God blessed our efforts and along came Polly.  She was born there in Ukraine, three weeks early, in a private hospital that looked a lot like our western hotels.  After her birth I had to learn a new language.  I had to find out how to speak special needs; words like Down syndrome, IEP, therapy, hypotonia.

We landed (twenty days overseas in the NICU, packing our lives up once again, saying goodbye to our church) in Michigan and attempted to find comfort in our new surroundings once again.

I thought that moving back to the States would be easy.  I already spoke the language here.  Only, my time overseas changed me.  A large part of me identified with Ukraine.  I was out of place in church.  The music was loud.  There were too many faces.  Every thing was so big and people had a lot of stuff.    I came home from Zoya’s preschool round-up drenched in sweat.  I remember standing in the school supplies aisle at Walmart, overwhelmed by the variety of paper and pens and lunch boxes.   

And then last summer, we moved again, from Michigan to Chicago, from rural to urban, from middle class to upper class, from being average church goers to my husband pastoring a church.

And once again I am out of my comfort zone.

So, you see, there really is no such thing as small talk in my life.  Which is why I dreaded the Mom’s Night Out last week.  My small talk either gets big quickly or it gets quiet.  Simple questions like, “where did you live before you moved here?” or “what does your husband do for a living?” or the ever present, “tell me a little bit about your kids?” do not have simple small talk answers. 

After I found an outfit that fit, the party last week wasn’t that bad.  I made small talk.  The questions came up and I answered shortly, “we lived in Ukraine,” “my husband is a minister,” “I have three girls; seven, six, and two.”

My life has changed so much and so quickly, at times it’s like watching a three ringed circus.  I have the poles and the plates, I am just having a hard time getting them all to spin at once.

In the midst of all these changes, I am finding that comfort is not really the point. 

I speak different languages; special needs, English, Russian, Christian, urban, rural.  And every language molds me a bit more into who I am to become. 

I guess I am learning to speak small talk here in Chicago as well and to be OK with it.

That, in and of itself, brings me a bit of comfort.

Re-potting a plant

I am not good with plants.  In fact, I kill them.

In Ukraine, apartment living did not merit a lot of opportunity to turn my black thumb green.  But in our first apartment, we did have flower boxes outside of our balcony.

So that first summer found me at the outdoor market in Kiev with a 3×5 index card.  Armed with words like “plant” and “flower”  written in large print in Russian, I dutifully approached several babushki (grandmothers).  They sold things like sausage and dried beans,  panty hose and flowers.  It was still the time in my life when all I could muster was the “grunt and point.”  Quickly, I would rattle off words on my card and point vigorously at the things I wanted to buy.  My eyes beseeched the little grandma to have pity on my soul and not ask me to repeat myself.  Amazingly, that day, S answered the doorbell and there stood his American wife with a few trays of flowers, little packets colored with vibrant pictures of flowers and a potted plant or two.  Having already purchased the soil, I got to work.

And the flower boxes looked nice, for about two weeks.

Then weeds started to grow.  Only, I didn’t know they were weeds and I left them alone.

Fast forward a few more weeks.  I was sitting at the table in the living room with my language teacher.  As I struggled to conjugate a verb out loud, my teacher interrupted me.

“Why are you letting the weeds grow so high in your flower boxes?”

And so I stayed away from anything that needed to be watered (minus my children, of course) for a few years.

At IKEA about a month ago, my thumb got pricked again.  I saw a plant that stood almost as tall as I am.  I envisioned the plant in our dinning room, bringing life, exuded oxygen.  I convinced S that I would not kill it, secretly picking out the less expensive option, just in case.

Last weekend, my folks were in town for a visit.

“You need to re-pot that plant, that’s why it is turning yellow,” my mom said.

I hauled two bags of potting soil into the house yesterday, and last night, I believe, I successfully re-potted the plant.  It now has room to grow.  Well, it should.  We’ll see.

It made me think about what has been going on in my life recently.  I feel like I have been turning a little yellow.  I have been in need of more water.  To be planted in a bigger pot, to expand, to grow. 

In an effort to grow, l’ve joined Chicago Moms Blog.  Click the link and then scroll down the page to check out my Biography and stay tuned for a post there from me in the next few weeks.

I’m pulling weeds. 

Eye Teeth

I have a confession.  I slip Polly baby Tylenol when S isn’t looking.  

After almost ten years of marriage, S and I have practically formed our own little country: Amerikraine.  Our cultural differences that caused for pathetic arguments… a skin tight rainbow striped hoodie picked out of the trash, worn while jogging (my beef about him), or picking salted, dried flesh off the bones of a fish (again, my beef, I’m sensing a trend), or, maybe, a country’s lack of deodorant (OK, I am a brat) have fizzled out over time. 

In essence, we’ve grown up together and have thrown out things from our cultures that aren’t worth keeping (here’s one of mine, simply HAVING to buy something because it is on sale, even if it’s not the right size).  We create new customs that aren’t actually Ukrainian or American.  We do things that work for us.

Except when it comes to medication.

S won’t go to the doctor unless something is falling off.  And I am all about the drugs.  When it comes to the children, he’d prefer to wait it out, “let the body fight off the infection,” he’d say.  I am running to the medicine cabinet every time I hear a wimper or a cough.

Tylenol, especially, is a big tool on my mommy belt. 

At two, Polly is not talking much.  She says “Mama”, “Papa”, “Lala” (for Lainie), an occasional “Oh oh” for Zoya, ”more”, and something that sounds an awful lot like “spider.”  She is learning sign language and doing quite well.  I suspect she knows over 25 signs and has just started putting two signs together, like, “give me, please” or “all done eat.” 

She is teething. 

Now let me tell you something about teething.  Teething is the ultimate exscuse for a mother.  A kid’s cranky, he’s teething.  Not eating, teething, drooling, teething, BITING, teething.  Toddlers aren’t allowed to just have a bad day.  I wish I could exscuse my grouchiness with, “I’m sorry I am being so mean, you see, my eye teeth are coming in.”  A time of grieving sets in when our precious young finally have all of their teeth and we vigorously look around for another exscuse for our children’s behavior.

I digress. 

Like I said, Polly is teething.  She has been teething forever.  Many children with Down syndrome start cutting teeth later than their typically developing peers.  Right before Polly cuts a tooth, she won’t eat or drink, she cries, she drools.  We’ve worked on the signs “hurt” and “sick” but still have to prompt her to use them, therefore, never really knowing if she trully is sick or hurt.

And so, I give her baby Tylenol.  Of course, I don’t over medicate.  I check the bottle, find her weight and give her the right amount.  S frowns upon this.  “How do you know it’s her teeth?” he asks.  To which I reply, “She bit my shoulder!”

It’s hard for me to see Polly upset.  I have to see her frustrated daily as she tries to master a new skill.  My skin is like rubber these days.  I look away when she cries to me to save her from the evil physical therapist.  After she was born, I watched her through plastic for the first couple weeks of her life.  I was helpless, clueless on how to help her get well. 

I know the jig’s up.  S reads my blogs occasionally.  I suspect he’ll happen upon these words and take away my medicine bottle.

 But confessing always makes one feel better.  And I already have a new hiding place in mind.

Shopping list

I am sick, again. 

I got the cold, that came from Polly, that she got from Zoya, that probably stemmed from one of the various play-dates we’ve had with kids from school in the last two weeks.

I knew play-dates were a bad idea.

S asked me to make a list of things we need from the grocery store.  

Here’s what I came up with:

toilet paper, napkins, super Always maxi pads, low fat vanilla yogurt, Kleenex, 1% milk

I am pathetic.