Thursday, January 13, 2011

Daisy Scouts

I started this post a long time ago, but never got it finished.

Elena has been in Daisy Scouts for a few months now. We are friends with the Troop Leader and her family, so I knew Elena would have a great time. It's a 30 minute drive during the weekday, which is a tall order--especially when there are troops right in our neighborhood. But I just knew it would be a good fit for E.

Not only did I have faith in the leader--she is inventive, and a lifelong scout, and knows all about Elena--but E had already met several other troop members, so I felt like her disability wouldn't be so strange in a group of young girls who had spent time with her before. The co-leader also just happens to be a neurosurgery nurse (and works with the doc that did E's SDR surgery). HUGE plus there!

The first meeting, I waited outside with a few other parents. I wanted to show the leaders how to put on/take off E's AFOs in case she needed to have them adjusted, and I figured I'd do this after all the other Daisies were out of the room. I didn't want E's disability to be highlighted any more than it had to be. Naturally, after everyone had left and I started to the AFO show--all the other Daisies poured back in, and crowded around Elena (who was lying on the floor) and the questions filled the space around us--

"Is she hurt?"
"What's wrong with her?"
"What are those?"
"Is that why she can't walk?"
"Is she retarded?"
"Does she have Down Syndrome?"
"Does she have to wear them all the time?"
"Can I get what she has?"

At first, I started to answer the questions. I mean, the girls aren't bad or mean--they are curious, as Elena is obviously different in some ways. But after the questions kept coming, it was like my perfect worse-case Daisy scenerio came to life. E's eyes bugged out, she was scared, she didn't understand what was so wrong with her...I just about cried in the car. I decided to save it for the psychologist. I felt like I failed to protect Elena from a bad situation, even though I had tried my best--the AFO display wasn't meant to be a Daisy group event. It was everything I didn't want.

But, E was fine, and never thought twice about it. Well, that's not exactly true...for a while there, she would be sad about not being able to "run like them" or she even asked "why can't she move like them". I looked at her, steeled myself for "the talk" and asked her if she wanted to have that conversation. She looked at me--then dropped her head, and mumbled, "no, Mom". I don't know what she thinks I would say--but I know that she knows it won't fix the way she moves, or change her reality.

Since then, though, Daisies has been pretty great. The majority of the time, our neighbor takes Elena with her daughter (who is also in E's kindergarten class) so I don't have to leave work early (which is WONDERFUL, as I already cut out nearly 4x/week for E appointments). E loves riding with them in the car, and always has lots to talk about after the meetings. E is proud of what she does in Daisies. The leaders really have a great attitude--nothing like my experience in Girl Scouts as a kid, which was almost entirely negative (I was bored to death at meetings, although I did like the uniform and the cookies).

There have been some anxiety provoking situations, though...like when they all cooked food for the Soup Kitchen, and Elena was the only one in a special chair (we brought her Tripp-Trapp chair from home) and the only one who hadn't used a knife before. You know what? She did GREAT. Or the time they went on a nature walk, and E had never walked a trail--I sent her with her Beach Walker, and she RAN. She lagged behind, but she LOVED IT. It's everything I want her to have--challenges, successes, and problem solving in a peer setting--while she has fun and builds confidence. I feel like a walking Daisies commercial.

And here's the kicker. I don't know many of the Daisy parents--mostly b/c I'm not there to take her all the time, but also b/c my memory is shot by the time 5pm rolls around. But I did see one Daisy Dad one day. I noticed--almost immediately--that he walked funny. That his knees--you know--caved in some. Like Elena.

Our eyes met, and I walked into the room to get E to take her home. He didn't know me. Elena used her crutches to cross the hall to use the bathroom--yelling the whole way for me NOT to come in, b/c she didn't NEED my help. So I waited outside.

The Dad looked at me.

"Is that your daughter?"
"Yup."
"She...reminds me of me, when I was younger."
I smiled. "I thought she might. Well, I hope you remind me of her when she's older." (His gait looks pretty fantastic.)

He said he though E was doing great. Hey--don't get me wrong--I'm a proud mom. But here I got to feel proud around someone who "gets it". Someone who knows how much of our lives revolve around therapy and building independent skills that come so naturally to other kids.

I drove home happy. How cool is THAT?! Small world--a Daisy Dad in our troop that has CP!

6 comments:

Mo said...

Comments from peers (like Oia and E's age) are pretty easy, most times, to handle. You're right, they are just curious. However, the quantity of questions that were thrown at you in what was probably just a few seconds would have overwhelmed me too. (I probably would have tackled the "retarded" question like a momma bear ready to down her prey though.) I have had many drives home from places where I just had to let it out... thankfully though, Oia is still young enough to not notice my tears from the back seat.
And the CP dad... just like my Home Depot guy. Fills your soul with hope that is powerful enough to carry you through the next week and beyond. Maybe E will get to know him better, and you too.

Good post, Amy! We'll see you in a week.

Danielle said...

Horray for positive role models, and fun experiences. This post made me smile. Minus of course, the inqustion you had to experience. I'm sure Elena will be able to respond confidently in no time.

Anonymous said...

WOW AMY... I HAVE A LOT TO SAY HERE... FIRST OFF I WAS NEVER TAUGHT HOW TO DEAL WITH ANSWERING QUESTIONS FORM KIDS OR DEALING WITH THOSE THAT SAY CRUEL AND MEAN THINGS..

IT STARTED WHEN I WAS E'S AGE AND STILL CONTINUES NOW. I WAS VOLUNTEERING ABOUT 7 YEARS AGO, AND I WAS GOING TO THE OFFICE TO DO SOME COPING FOR THE TEACHER..

AS I HEADEDD THERE THIS KID (ABOUT 8 OR 9) SITTING ON THE BENCH OUTSIDE THE OFFICE SAYS TO ME "ARE YOU RETARDED" I DIDN'T ANSWER.. I CAME OUT ONCE I HAD FINISHED AND AGAIN HE SAYS "ARE YOU RETARTED" I DON'T CARE THAT THIS POINT IF HE IS CURIOUS.. I DIDN'T KNOW HOW TO DEAL WITH ITI HAD THE URGE TO KNOCK HIS HEAD OFF..

I WENT BACK TO THE CLASS AND TALKED TO THE TEACHER AND THEN HE HAD TO EXPLAIN THINGS TO HIM AND STRIAGHTEN HIM OUT..

JUST THE OTHER DAY I WAS VOLUNTEERING IN THE CLASS (DIFFERENT SCHOOL AND TEACHER) I WAS GETTING MY BOOTS ON AND THIS 6 YEAR OLD SAYS "WHY DO YOU HAVE THOSE" I DIDN'T HAVE TIME TO RESPOND OR I WOULD HAVE MISSED MY BUS.. AT THE BEGINNING OF THE YEAR THE TEACHER AND I EXPLAIN MY CP TO THEM BUT I WAS A NERVOUS WRECK..

WELL DONE TRYING TO TEACH HER TO DEAL WITH IT AS IT IS NOT EASY!!

MELISSA

Fancy Pancakes said...

I loved this story, Amy.
You are SUCH a story teller and when are you sending your manuscript in to the publisher?
Maybe when both kids are in school full time and... well, anyway. I just think your experiences are so interesting to read about.
I am so glad you are blogging.

MBL said...

Wow! My child IS MMR, and she's never gotten the "are you retarded" question. I guess some children are just not taught manners.

TheCzarsOf45 said...

Commentary like this has been the bane of my existence for many years. E did an awesome job of handling it. Props to her. I do things the way I can handle it, it might not be elegant or perfect. People either like me or don't. I haven't time to worry about it, there is work to be done. One can't worry about it.