Tuesday, March 30, 2010

Soccer: E's first day

E had her first day of what we call "soccer camp" last Saturday. I WAS NOT THERE. I was out of town.

The program is for 4-5 year olds, and put on by our local YMCA. Every time I enroll E in a class, I prepare the teachers/instructors well in advance for having someone like Elena. After all, most teachers have not experienced having a disabled child in their classroom. Hopefully, she and the other students will treat each other well and benefit from the exposure. This has been true for most of our experiences.

But, honestly...there are always moments of sadness. You see how different your child is from others. As E has gotten older and more able, we've had a better time dealing with this. The sad times are few, and normally the feelings are over quickly. E is doing so much more these days, it's hard not to be proud of her--even if she is the last one, or the one that needs a lot of help. I think other parents are proud of her too, even though they just met her!

Since I couldn't be at this session, Jason went. Our Helping Hand Cara was there too. I wasn't sure how much help E would need--turns out, she didn't need ANY--she didn't fall ONCE!! E tried all her "soccer moves" with her crutches. I am hoping by the end of "soccer camp" we might be able to do some of the drills without them--maybe. Coach M didn't spend a lot of time catering to Elena. I think that was good. After all, he had 19 other ~4 year olds to try to keep busy and attentive. I know he was watching her, though, and wondering how she would follow along.

Here is E warming up. The other kids were running around, jumping, doing runs as a group. Not only would that be exceedingly hard, E wasn't interested--instead she wanted to just kick the ball. Everyone seemed fine with that.

One of the other kids in the class is Julian; we met him in yoga class! He remembered E. How cute!

Here is Elena trying to keep up with the group. They are supposed to run across the field, get to their ball, and put their foot on it. Then dribble and stop repeatedly. Obviously E is slow, but she sort of kept up. She goes fast by taking large steps with her left leg, and smaller with her right. She does lean on her crutches A LOT on the field. Still, she never fell, and was out there for 45 minutes!! I think she will actually like this drill once she realizes she doesn't have to try to kick the ball as hard as she can EVERY time she kicks it.

Here's another drill, where the kids herd their ball into a net (facing the opposite direction). So, let me get this straight: there's running, dribbling, ball control, turning, and then going back to the group. A pretty tall order. Kids her age can do this, no sweat. Sure, she's slow. And she got frustrated when the ball didn't go the way she wanted. This clip highlights her differences. But...hey, it's not going away. It's REAL LIFE.

I'm not going to lie; I was out of town, worried to death this soccer experience would be a disaster. That E would be falling everywhere, upset, wanting to be like everyone else, crying her face off. She didn't. Jason said it was awesome. She LOVED IT.

That's all I could have hoped for. We can't wait for the next session!

Monday, March 22, 2010

A Beautiful Weekend, So Many Ways

E has been ON FIRE these days--walking up a storm! We started the weekend with a Saturday trip to Crozet for a Fancy Nancy party at the library. E's friend A joined us!

E and A with their fancy Plume pencils

After that we went back to A's house for lunch and a playdate. A's mom and I got to chatting, when we both noticed the house was strangely quiet. All the kids were upstairs--we caught E more than halfway up the steps! That was a close one...E cannot (or, has not yet) been able to do the stairs at our house independently (while standing up and ascending, anyway--she can "crawl" up them). E had gone up the stairs at A's house all by herself, standing the whole way (at least, that's what she told me). The difference is 1) they have a wall banister, while we have vertical rails that E holds, and 2) the banister is on the right side, while ours is on the left. On one hand, I am really proud of Elena for being so independent. On the other, I am extremely thankful her stair adventure didn't end poorly.

After A's house, we went home to rest. We had dinner guests over, some friends from college who have a 20-month old son J. J and Viv had so much fun running around outside after dinner--and E even did some, too! She walked on our grass (which admittedly is a little tall right now) 18 steps! That's a new record! The three kids played all around the little swingset and got nice and tired. I think (and hope) E will continue to be more independent outside.

On Sunday, E and I went to yoga--she is really doing much better standing during class. She still needs support to stand, but I need to support her much less than I used to. I like yoga b/c it helps us to incorporate large, purposeful arm movements--we spend all our time on her legs, her upper body largely gets ignored. In general, E's arm movements are contracted--she doesn't usually extend them all the way up or out (she can, though).

After my soccer game, Jason met me at the park with the kids. E used the swing for a while, then went to the playset--she took 34 steps, on mulch, independently, and got there herself! I filmed it, but had to race over when she started to approach a fall hazard. Here's the clip anyway, to give you an idea of the terrain and how she looks while walking--sorry for the interruption!


After going to home to rest, we headed over to a special attraction--a free carousel, set up for a week on our local pedestrian mall. The kids loved it (especially Vivian).

Tuesday, March 16, 2010

Upcoming: E's 5th Birthday

This is just a temporary post.

Elena's 5th birthday is April 30th, 2010. She has been adamant that "when you are 5, you can do everything by yourself". Well, of course, we're all for that--but we are realistically hoping that The Turning Of Five will bring E some new independence.

One thing E LOVES is mail. She doesn't know how to read yet, but it is emerging. She does recognize that some mail has her name on it, and appreciates pictures and notes from kids her age (or from parents of kids her age). We also send mail, although it can be a long wait time, and for that I apologize. We have to start VERY early to get lots of letters out on time.

Would you like to send E a birthday message? If so, contact me at cpmom2009 AT yahoo DOT com (also a link through the About Me portion of the blog). Once we have your address, we tend to send mail at semi-regular intervals (major holidays, etc). I do NOT share addresses with anyone else.

Getting mail from other places also helps us with geography--she knows G lives in Tasmania, W lives in Texas, R lives in Hawaii, for instance (and can find them on a map). If English isn't your best language, don't worry, we'll love it anyway!

For sure...when E is 5, one thing she WILL do by herself is...GET THE MAIL!

Monday, March 15, 2010

The Jump


Awesome Sauce!

PT Recap: Obstacle Courses

E has been doing a mash-up of CME exercises at PT, rather than just one at a time. For instance, if she will be walking over boxes, instead of placing her on them, she'll start on the floor and have to step up (or down). This has definitely improved her ability to go down steps (she's been going up them well for some time now--with one hand held and one on the rail).

Here is E at PT last week.

E really didn't feel like doing much CME...she'd rather play with the swing on the mat. So we tried to get her to move to it herself. This is a big deal, b/c it involves her stopping, starting, walking, and stepping up in a controlled manner where she doesn't have the support of her AFOs.

It occured to me yesterday that this post contains clips that E has done before, with her AFOs. Each of those clips took FOREVER for E to do, months--years--of training. She's only been working without her AFOs since November. Her progress is incredible. In our experience, this CME therapy has been amazing!

Monday, March 8, 2010

Arch Supports

One of my issues with E wearing her sneakers (sans AFOs) is that I worry about rockering/lack of arch in her foot leading to instability (pronation, rockering, knee caving in, hips, etc). So I asked her orthotist if she could get arch supports to help this. He was willing to make them (insurance covered them, after some fancy wording from our orthopaedist) but he wasn't sure they would really help/make a difference. Still, he said they wouldn't hurt.

E's arch supports are two levels of support; our orthotist doesn't like to skip steps, but in E's case he felt he had to. They have a soft support on top of a hard plastic support. There are further levels of stiffness, which we may need. We'll have to see what our PTs have to say after using them for a while.

(pic to be added tomorrow)

New Milestone: Standing Up Sans AFOs

All those standing up from "frog poses" are paying off! Elena can now stand up from the floor, wearing her sneakers without AFOs. This is HUGE in terms of gross motor function. One of the big definitive milestones is getting up, in the middle of the room, without handholds and walking out of the room. Here's the first part!

I'm pretty sure she can walk a few steps to exit the room. WEEE! Now, E won't be successful standing up each time. She did it four times this day, and fell maybe three other times. Still. THIS IS HUGE.