Monday, January 31, 2011

Sister Walk

This was Elena's idea! She wanted to hold hands with Viv as they left Mr. Keith's office (they LOOOOOOVE him!).

This is the first time I've seen Elena walking and holding hands with anyone that wasn't an adult--or with an adult involved. I almost cried.

So proud of these two!

Thursday, January 27, 2011

Mom Solo

Jason is gone for close to three weeks, out of the country for work. We all miss him terribly. When he's here, he's gone a lot of the time, as he's in night school until 2012--so, basically, it's The Mommy Show a lot of the time.

With him gone, it's been tougher than usual. Don't get me wrong--I have help. Friends, occasionally my parents, and of course our Fantastic Nanny Annette. But I am more tired than usual--E's appointment schedule, my appointment schedule, my work, and other stuff is *ahem* a challenge right now.

But's all worth it. We made this video last night to send to Daddy.

Yup. Those are my girls. Both in bunny slippers, and bare feet. YUP. BOTH OF THEM!!

Jimmy at the Gym: Obstacle Courses

Well, it's winter here. That means that for practical reasons, Jimmy Time can't be outside. (For those of you who don't know, Jimmy is a student at JMU who has mentored Elena for the past 3-4 months. WE LOVE HIM. Most of their work has been to build confidence while moving/playing outside.) It's cold out now, and bundling E up makes her movements cumbersome--not to mention the colder weather worsens her spasticity.

So I approached our gym (which, I have no time to go to myself these days) and asked them if I could have space inside. I need a big, open space, where E doesn't have a handhold. They were happy to oblige. Jimmy, as her aide, gets in the door for free (granted, only to work with E--but big ups to ACAC gym!). We also have all the gym equipment at our disposal.

So, we've been putting together obstacle courses to see what she could do. We've been doing this for 3 weeks now, and E is AWESOME. I don't have videos of everything, and they are pretty long. It takes E about 3-6 minutes to complete each course. Typically, I make up a story, and have E go through courses to make it through the story. For instance: E is on a quest to Save The Baby. She has to make 5 baby saves (earning a tattoo after each save), and if after she completes them, she is the Queen of the Gym and gets to wear her crown (the one from YOU, MELISSA!).

Here's one vid. Highlights are: successful step-overs, side-stepping, wide-stepping, getting up from the floor, attempt at a crab walk, etc. etc. Other videos have successful jumping, attempts at step-ups/step-downs, cone weaving, etc.

E gets better at this every week. Building confidence, having fun, using practical movement. It's great. And last week, E was sweating!! Guess when that's happened before? NEVER!

Sunday, January 16, 2011

The Year of Thinking Dangerously

Remember when I wrote my New Year's Goals? Well, apparently, that wasn't aggressive enough. I am "gettin' served", as E liked to say. She's all over the place--I even "caught" her walking from the bathroom at Daisy Scouts CARRYING both of her crutches in ONE HAND as she walked with huge steps into the meeting room--because she "didn't feel like wearing them".

It helps that I made the 2011 goals, b/c now I've been trying them to see where we are. Well...she can carry heavy ceramic plates (no food on them yet) now and keep them upright. She can lift her foot entirely out of the bathtub (while I hold her other hand-I've never tried that before). She goes up the indoor steps with me close, but has only needed me to catch her twice. She moved backwards AND sideways without falling over the weekend.

So, given that we're only a few weeks into January, I think my 2011 goals aren't thinking BIG enough. Or independent enough. So, I'm just going to run with this, and THINK BIG. Allow myself to think dangerously.

So, here are some additional goals for 2011:

*1. E will walk TO and FROM the bus by herself on a school day. The steps outside our house are unevenly spaced, and have no handrail. She can do these with crutches or without. This means going from outside the door, down the steps, across the driveway, and INTO the bus without help (and reverse, coming home). Currently we carry her--mostly b/c we are running late, but also b/c we have doubts regarding her safety/ability to do all the steps--and in a timely manner, especially those on the bus b/c they are so large.

*2. Elena will RUN. And be able to STOP, without a handhold, and without crutches. I don't care what it looks like.

*3. Elena will pivot on one foot (or two feet, simultaneously). Either (or both) sides. Currently she switches directions/turns by veering in a circle.

*4. E will try a jump shot--with a ball, and land without falling down.

*5. E will attend a dance class without a facilitator. While wearing her shoes and braces, she'll keep up (mostly, anyway) with the class. If she falls, she'll get up and keep going.


Crazy, I know...but who knows, "Danger" might be her middle name this year...

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, 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?"
"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!

Sunday, January 2, 2011

Year 2011 Goals

Happy New Year!

I'm exhausted, so I'm going to get right to it. Here are my gross motor (and possibly "other") goals for E in 2011, in no particular order:

1. E will be able to carry items at home--specifically, food to the dinner table. I'm talking plates with food on them, and not have them tip over. This includes drinks--in open cups. I don't plan on filling anything to the brim, but I do expect her not to spill what is in her cup or on her plate the majority of the time. Right now carrying any food receptacle (with food in it) is a guaranteed mess.

2. E will make some progress getting out of the bathtub. Specifically, I am hoping that with one hand held, she will be able to lift one leg at a time over the edge of the tub. This will take lots of practice, as she'll be barefoot, cold, and on a slippery surface. My back will thank me.

3. E will be able to put her own AFOs on, with supervision. Currently she can take them off, but we haven't worked on putting them on.

4. E will successfully navigate a step without assistance, and without crutches. Currently she initiates going up and down, but her clearance of the step isn't always successful and neither is the weight transfer.

5. E will be able to put on, take off, and carry a backpack. (She may already be able to do this).

6. I want Elena to make some progress navigating our entire yard. We live on a very steep front hill (with *ahem* perilously large rocks a the bottom of said hill), a flat side yard, and we have stone steps in the backyard that lead to the garage level. She can navigate going out the back door of the house, down the deck, to the flat side yard. We haven't really tried anything else yet. Since the other steps don't have a handrail, she would have to be able to successfully do multiple steps with her crutches (she has done 3-4 at a time, but never 10+).

7. Elena will be able to get in and out of the pool (using pool steps, a handrail, her swim vest, and anti-slip pool shoes) without scraping her knees and feet. By in and out, I mean sitting on the side of the pool out of the water as the start and end point. In order to not scrape her knees, I think this means she'll have to stand up using the handrail and walk up the steps.

8. Elena will answer questions regarding her disability when asked by peers. We are working on this, and so far it's actually going very well. Most questions come from kids, when I am around--and they ask me, not Elena. Right now, the most common question is "why do you use those things (crutches)?" and E says "these help me walk". Normally that suffices and everyone is smiley and satisfied.

9. Elena will be able to step side-to-side. She can do this, but it takes a lot of effort.

10. Elena will be able to move backwards independently in some fashion.

And Goals for me:

1. Get in better shape. I know this is a common New Year's goal. I am not in bad shape, but I need to be stronger. Elena is getting bigger, and I still need to carry/lift her. I plan on some "event" (nothing massive--a city 5K walk/run, for instance) once a month as a fitness goal. In the absence of a local race/event, I will drink water every day (don't laugh--I am chronically dehydrated, and I hate drinking water).

2. Learn how to use Skype. I did set up an account, so I'm part-way there!

3. Make a Yoga With E short video. Elena and I talk about it a lot.

4. Cook more at home--ideally, with the kids helping me. With Jason in school, it's The Mommy Show a lot of the time, and it's easier on our wallets and bodies if I cook more often. And healthy, home-cooked meals in the freezer is like time in a bottle, which is what every parent needs!

5. Vivian Time. Viv is getting more attention these days, which is great! I want to have a regular parent+Vivian time (normally, E gets this during Viv's nap and before Viv's bedtime).