Friday, May 16, 2008

Just Ask Her


She planted herself in front of us this morning teetering on her twisted legs like a tree swaying in the wind.

Her teeth trapped her bottom lip inside her mouth.

With elbows locked, she held her thumbs and forefingers outstretched. Her remaining fingers curled into her palms giving her the appearance of a gunslinger.

A strap around her neck held a laptop sized key board with a built in screen for reading digital text.

Like most mornings, she stared at us with something like defiance or urgency… or something else.

Upon encountering her, both The Mayor and The Rooster grabbed one of my hands and snuggled against my legs.

Despite having drawn close, they were both wide-eyed with curiosity.

They see her everyday but have never said anything about her.

Though she’s a teenager, her mother drops her off at The Mayor and The Rooster’s daycare every morning, presumably because it opens an hour earlier than the high school.

I think she has cerebral palsy, but I’ve never asked.

She can walk but to communicate she has to bang away at her keyboard with her outstretched first finger.

While The Mayor and The Rooster huddled against my leg, I realized that I’d better think about a way to talk to them about this girl.

I've had minimal exposure to people with disabilities and lack confidence in knowing exactly what to say.

I worked with a woman with cerebral palsy once.

In reverse of this girl, my colleague could talk but she used a motorized wheel-chair to get around.

When I got used to the way her speech sounded and could easily understand her, I learned that she was hilariously funny.

Sadly, we only worked together for a short time.

Later, I did a consulting project with a state-wide coalition of activists working for equal rights for people with disabilities.

One, a woman with spina bifida, told me that their work was the civil rights movement's final frontier and that as late as the 1970’s it was illegal for “deformed” children to play outside where they might be seen.

That stuck with me. Can you imagine?

Before I left them at daycare, I pulled The Mayor and The Rooster aside.

“She was born with something that makes it hard for her to move her body the way she wants to,” I said.

My children listened, but said nothing.

“She thinks all the same kinds of thoughts as you,” I said, “but she can’t make her body do what she wants it to do.”

They nodded.

I kissed and hugged them goodbye.


Walking to the car, I wondered what else I could have said.

I guess I should just ask her...

37 comments:

mommamia said...

As a mom whose daughter has Cerebel Palsy. You did the right thing. The only other thing I would suggest is make sure they know that they cannot catch it by interacting with her.

My daughter would tell you if they have questions to let them ask her. She never minds answering questions from the kids. She absolutely hates it when someone tell their child "don't talk to her she is disabled."

jakelliesmom said...

Ask her, or ask her mom. It sounds like you made a good start with explaining her situation to your small people, and I'm sure there will be many more conversations to follow.

DD said...

XBoy goes to daycare with a mentally disabled girl and sometimes he tells me about her, like that she sucks her thumb or screams a lot. All I can do since I have yet to see a parent drop her off or pick her up, is to tell my son that she deserves to be treated just as kindly and respectfully as any child. Maybe this won't sink in for a while, but I don't want him to ever feel like he can't come to me with questions about physically disabled people, child or no. There should be no shame in noticing these differences. It's just a matter of how to insure that we are also so much the same. As you said, we all think pretty much the same things and enjoy the same pleasures in life.

Anonymous said...

Jessica. You said just the right thing. You know I work in a public school pre-school disabilities class.I have 2 autistic children,1 little boy with muscular dystrophy and 1 girl with cerebal palsy,2 boys with language delays and 1 mentally challenged girl. They range in age 3-5. When the children ask any questions about the other children's disability we always answer with a reply like, that childs legs do not work as well as yours, or that child can not speak as well as you so on and so forth. That child can't speak so he has a machine that does it for them and aren't they fortunate to have a machine to help them.
Jessica you are a smart Mom. Missing all of you and wejyctmpnz think of you often. Aunt Candy

Anonymous said...

Jessica,
Sorry I put the word verification in my paragraph. I am not an idiot.
Aunt Candy

imaginary binky said...

If you'd like to show your kids just how normal and incredibly funny someone with cerebral palsy can be, visit a good friend of my husband and me: Josh Blue.

He won "Last Comic Standing" a few years ago and has played on the U.S. Paralympic soccer team. Josh is one of the most energetic, athletic people I know. It's tiring just to watch him play soccer with kids. He and his wife Yuko just had a baby, too. The dude is the bee's knees and makes Denver proud.

witchypoo said...

Yes, why not ask her? You might find still another funny, smart person to know.

Mrs. Schmitty said...

I have a sister and Mr. Schmitty has a first cousin with Cerebral Palsy. Mr. Schmitty's sister also is disabled from a stroke she had in her twenties. She walks with a brace and a cane. My children have grown up loving these people and never seem to notice the differences. At least they have never questioned them. I am lucky in the respect that I don't seem to have to explain. But if I did, I would certainly take my cue from you, you did perfect with the Mayor and Rooster.

BOSSY said...

Great post, dear. You're tackling all the important stuff over here, while Bossy feels like she's dancing in a pink tutu on a sugar cube.

BOSSY said...

P.S. Bossy thinks this is why it's important to have early integration in the school districts. Over the years, Bossy's kids have interacted with many physical and mental disabilities on a daily basis, and they seem to know how to seamlessly interact and ask the questions and not be weird about it much better than the more sheltered Bossy.

sryan said...

Jessica, I have the best kept secret for you, okay it's not exactly a secret, it's something someone gave me--a copy of "The Book of Mom" by Taylor Wilshire. Have you read it? It's a funny, sarcastic novel about motherhood and how to create inward and outward balance. If you like Ram Das or anything New Agie, or self-helpie, this summer read will make you laugh, cry and give you tools for a more authentic life. Something I am always looking for.

kellypea said...

Having had children with severe disabilities in my classrooms for years, I was able to watch the amazing interactions my students had with those who were mainstreamed. More than one of my middle schools offered opportunities for kids to "mentor" disabled students as an elective. The relationships built amongst them were lovely, giving me a completely different glimpse of kids who sometimes were not doing well in school, or getting into trouble. I think the way you responded to your children was perfect, and when they ask questions later, that will be a great opportunity to learn the girls name.

Above Average Joe said...

Its good that they have a chance to interact with her. It will help them handle others similar situations as they get older.

Omaha Mama said...

That girl would be in my class, if she lived in the attendance boundary of my school.

I believe that teaching our kids to accept difference is one of the most important things we can teach. All differences.

To me, what you said to your kids sounds right. That girl, she's just like you and me, only different. We are all different. Thank goodness.

Laura said...

Over the last 4 years we have had many hospital appointments for my eldest son - he has a rare syndrom that impacts how and where his internal organs are placed and work. And we always run into other children with disabilites...and sometimes I find it very difficult to explain it to him...I think you did a wonderful job and I will take a cue from you. Thank you for sharing.

Faerie Mom said...

Many moons ago I worked as an office manager for a group of support coordinators who worked with developmentally disabled adults. It was my first exposure to really disabled people. I had some of the most interesting and stimulating conversations of my life with men and women who had to write things down for me to understand them at first. It was an eye opening and truly humbling experience that i would not give up for the world.

Rachael said...

I really liked this post. I think you did a great job for a start, and should just encourage them to talk to her if they want to or ask about it again.

Sue said...

Dear Oh The Joys
I work with adults with disabilities. You said the exact right thing. I've been reading your blog for a long time now and I feel like you are one of my friends. Sometimes you get real nasty - I like that. Thanks for writing. sue

SUEB0B said...

1. I love Aunt Candy and her word verification

2. You're all right, too.

ephelba said...

One in seven of us is disabled. If you aren't close to a disabled person yet, chances are you will be.

I am glad you are exploring this. Perhaps you'd like to do some reading?

Thalia's Child said...

I think you've made a fantastic start - one thing to remember about CP is that folks who have it often have completely normal (or above average) intelligence, so when they can communicate, they are wonderfully knowledgeable and excellent advocates about their disability.

I worked in a CP group home in one of my clinical rotations in nursing school, and they were some of my favourite clients.

flutter said...

yep, because she will surely let you know

Jo Beaufoix said...

Sounds like you did ok. Just start with a hello next time and you'll be on your way.

Sara Mu said...

That's a sweet story. Disabilities are nothing to be afraid of, just understood.

Jenifer said...

I think you said the right thing to the kids...sometimes asking is so hard.

Grim Reality Girl said...

Another great post... and a great illustration of the value of mainstreaming... I am happily amazed at how this is handled in our schools today. Kids are so much better off these days because of it. Amen to many great comments / suggestions... fostering understanding is to make our world better.

JCK said...

Asking her is a great idea.

jeanie said...

Well done - and definitely approach her and ask her if possible.

My daughter's first school had a unit for special needs children, and the kids also had classes as appropriate in the "mainstream" environment.

I think it was as important for our able-bodies children as it was for those in the SDU to have this, as it meant there was interaction in the playground and those who had differing disabilities were not considered "different". It also allowed parents to discuss with their children much more freely.

Maureen said...

Bravo. Here's hoping they have made a new friend too, just like you did years ago.

Carey said...

My Aunt works with adults who have autism...it sounds like the girl may actually be autistic.

Years ago when they realized that autistic children where not "retarded" and were able to communicate in various ways...they worked with a few on using a computer to see if it would be a positive method of communication and the results were amazing...they found out that many children and adults with autism were not only very bright but they had a lot to say. Autism affects everyone differently, but it sounds to me that might be what she has.

We have a little boy in our day care who has a disability and his parents are pretty used to the questions. I would talk to her mom.

Cyndi said...

My cousin has cerebel palsy. You would never know it no matter how long you spent with her. She is limited in her physical abilities- she can't go for a run for example, but then neither can I.

Circus Kelli said...

You're awesome. Really. You're growing two wonderful people there.

Little Monkies said...

My nephews are wheel-chair bound and are completely disabled to the outside observer, but when you get to know them and their personalities, they have capabilities that we never dreamed of. Monkey and babygirl are very wary of the boys (twins, now 22 yrs old) but I think it's exposure and your cues that will help them normalize the situation in their minds. It sounds cheezy, but the Action Jackson character from Sesame Street makes the chair part more normal for my kids.

This is a fantastic post and I appreciate your willingness to step forward in what can be an otherwise uncomfortable situation.

QT said...

Wow - I think you did great, jess.

GRAY MATTER MATTERS said...

Before I read all the comments my first thought was "God, this is written so beautifully." Everyone's comments are incredibly inspiring and I agree with those who praised you for how brilliantly you handled the situation.

foop said...

My old boyfriend, D, had an uncle with CP and he was one of the funniest people I'd ever met. He and his wife, who also had CP, pretty much ran circles around the rest of us. They were unstoppable.

Thinking about them makes me smile. Thanks for the reminder.

Elaine A. said...

I think what you said was quite good. I have spent little time around people with disabilities myself and haven't really had the opportunity to approach it yet with my son. If I did though, I would take a cue from you because I really like the way you approached it.