Here is E at her last session with Ms. C. This was probably our most productive session--the room was HOT (I never know which studio will be available) but luckily I had a leotard in our gym bag--a beautiful gift from Ms. Sharon (ballet teacher down the hall during E's Daisy Troop meetings). Never underestimate the power of the right outfit!
Here's E and Ms. C finishing up stretches, with the emphasis on turnout:
Last stretch to grab a water break:
Using a big ball to work on pointing! Ms. C is trying to get her to point her toes to move the ball.
Working on "passes"--E is trying to get her toe to her knee
Trying to do a tendu to the wall
Bourrees--E is trying to take many tiny, tiny, steps while on her toes with nice big arms out. This is actually very good here--E took more small steps than usual, and she was a bit slower than her typical speed.
Battements--E is trying to take a large leading step with a straight leg. She has a much easier time trying this with her left foot leading--but even so, she has almost zero balance on her own when trying to move her leg this far. We also tried this with me holding her torso and Ms. C guiding her in front, which was effective. E felt more comfortable trying this move with lots of support.
We took lots of "soccer breaks", where she could kick the big yellow exercise ball between ballet moves. We invented a new word for E, "Soccerina". Hey, whatever works, right? She had good control of herself after kicking the ball (didn't fall, even though she was on her toes most of the time) and several times she came to a full stop, only in ballet shoes, feet flat after kicking with no hand holds. Yay!
Today the girls woke up a little earlier than usual, for a Saturday.
We had a RACE!
After talking it over with both girls, I enrolled them both in a local charity run. It's very popular, and there is an 8K run, a 4K walk/run, and a 1/3 mile Kid's Dash.
As always, I phoned up the people in charge and asked if we would be welcome. They couldn't WAIT for us to be there!
Elena even had A SPONSOR! How cool is that? Virginia Prosthetics, the company that provides her AFOs/KiddieGaits asked if E would run on their team! (All the other team members were adults, btw). I'm humbled...and so proud my E can represent them.
Anyway, it was a cool morning--perfect for a run. We dressed E and Viv a little warm (probably too warm, but they were pretty cold until they were done running) and put on their race numbers. I jazzed them up a bit, giving them names in sparkly foam letters! (I almost put Puss in Boots on Vivian's back, but she changed her mind.)
Part of the Virginia Prosthetics Team
The 1/3 mile race course was, essentially, a large block. It was downhill for the first segment, uphill for the next two, and finished a downward slope. I knew Elena would finish--and I figured she would also be last, which is not a new experience for her. Still, I worried that she might fall or get discouraged during the run. Prior to the start, one of the race leaders mentioned the important parts of this race: no pushing at the start, to always be safe, and to be exhibit good sportsmanship by telling others they did well and cheering others during the race.
E's last "running" event was the Wee Walk last year; 1/4 mile track, and it took her 13 minutes. I figured with this hill, and the cooler weather, at most she would take 25 minutes, even if she fell. The start and end points were the same for all participants--so, at WORST case, Elena would finish her 1/3 mile when the 8K runners were arriving. Which meant there would be plenty of people at the finish line to cheer E on--a win-win.
After the Warm-Up, heading to the Starting Line
And they're off!
E and Viv were almost immediately at the back of the pack. Vivian was a cute little runner--just going her own pace, and loving the spectacle. Jason and I were worried about E--she was going fast on the downhill, and we thought she might fall. She didn't. Rounding the corner, seeing the big uphill run, though, Jason heard Elena sigh.
"Oh wow...that's a big hill. I don't know if I can do it."
Jason only had to give her a little encouragement, and off she went. A little walking here and there, but she just kept on going. I went with Viv, as she was also alone, and kept running back to see E--both girls looked really, really great!
Vivian around the last turn
http://youtu.be/vkmRXXVCFyw
Vivian finished at about 5:30 or so--I really didn't get her time, b/c we went back to cheer for Elena.
Rounding the last curve
The Finish!
Elena finished in 7:45!!
Both girls were SO PROUD of themselves! Of course, we were too. This course was challenging and successful, the volunteers were wonderful, and so were the other runners! We even had a surprise...E's first facilitator S was back from Spring Break, so they went on a post-race coffee (and chess) date!
THANK YOU SO MUCH to the MJ8K Staff, Virginia Prosthetics, Gigi and the Arbaughs, and S. W. for your encouragement and help today!
Well, lots has been going on--but isn't that always the case? The text here won't be lengthy, for fear I won't get to the pics/videos.
In no particular order:
West City Soccer is going GREAT! I can't say enough great things about this. We've been doing some little 5-minute scrimmages near the end of the sessions, and E can get into the mix a little. She uses two crutches to be faster, but when doing so, she doesn't handle the ball as well with her feet and uses her crutch tips as "extra feet" (I keep telling her that's EXTRA HANDS!). She has recently tried using one crutch, and her footwork is better that way--but sometimes she's really uncomfortable and uncertain in her movements. We keep mixing up the zero-one-two crutch use, and it's been great.
Snow Day (again!)! Dad ended up driving off with E's crutches in the car, so there was lots of hand-holding in this thick, wet, heavy snow. E did try to make it up the neighbor's hill, but after about 6 (good) steps, she was tired. I loved the fact that we saw some of our older neighbors--I haven't seen these girls in a long while, and they sure have grown up! The main focus was on making a snowman--in this case, with some Hawaiian Flair!
The kids went to a Pig Reading--With Daisy the Reading Pig!
Elena earned her Firefly award for teaching her Daisy troop something--she chose Chess!
And at the following meeting, she chose to NOT use her crutches to get in the building. I'm guessing this little hill is a ~30 degree grade--and she did it both TO and FROM (downhill) the meeting, and never fell. Good job E! (She also went up a curb, without crutches, when walking to a birthday party a few weeks ago).
Ballet Mentor Recaps: my pictures were SO DARK, b/c I didn't figure out how to use the light switch until the end. So, text will have to do. Ms. C and Elena worked on a few moves after warm-up. Warm-up usually consists of talking, running around, and then some sitting and stretching while working on turn-out while sitting in long-sit. Long-sit (sitting up straight with your legs out straight) is hard for Elena, I think b/c of her tone AND contractures. She tends to long-sit with her hands behind her, so she can lean back (try it; when you can lean back, it doesn't stretch your hamstrings as much). When E tries to touch her toes, her back rounds (again, hamstring tightness is one reason she doesn't have a straight back). I'll be interested to see improvement here.
After warm-up, Ms. C tries to get E interested in a new move(s). Maybe a story, maybe a video, and then she tries to get E to work on 1-2 moves. Today we tried (together) different foot positions (standing on a yoga mat, while holding the back of a chair as an improvised barre). E tries hard to "put her heels together and get her feet in a V" for first position, and I am seeing improvement here, and with foot turnout and knee turnout. I can see it is uncomfortable for her, but she is trying, and seems to enjoy the challenge.
Our second move was tondus. Ms. C had very good success while using this in a "step"--really, just trying to get E to walk barefooted with strike-through (where her back leg passes her other leg as she goes forward). The best success was when she put her finger in front of E's feet (way in front) and asked her to try to step on her painted fingernail. Some of those steps WERE REALLY GREAT.
Our ballet mentor meetings are about an hour; I think in this hour, I'm lucky if E gets 20 minutes of good movement. At this point, I don't really care about that--I just want it to be fun, and I want Elena to like her mentor enough to WANT to go see her, so that she's interested in learning something along the way. Personally, I think the sessions could deal with some more imagery to help E with her movements ("paint a rainbow with your hand", etc. etc.) but so far E seems to like it. I might bring some little balls next time (maybe she can try to move them/kick them with her leg/toes) b/c she really seems to like kicking/throwing/moving balls right now. Or get some gigantic paper and some chalk, and actually get her to try to stretch and write on the paper (if doing sitting stretches, for instance). Or try to get her to put her feet on painted footprints on said paper. Any ideas, send 'em along!
Watching Baryshnikov do some tondus in his dancing
Arms Wide, standing tall pose (the feet are nice and flat!), pom-poms keep it fun
I asked Viv's ballet teacher if she had thoughts of a group class where E wouldn't slow down the group too much; she thinks E would fare well in her class with two novice, shy 4-5 year olds. We'll give it a shot!
E always wants to help at home. This used to mean that everything took a billion times longer when the kids try to help me. Well, E can now be EXTRA helpful in the kitchen--here she is helping me cook dinner, by peeling the parsnips and carrots (while getting a knee immobilizer stretch).
Bonus Vivian! Her new thing is that she had decided when dressed as such, we will refer to her as Puss in Boots, complete with maraca "sword" (in a glasses-case sheath). Points for originality here.
It was a cold, blustery, busy day last Saturday. We'd been out all morning. When little sister Viv went down for a nap, we had about 90 minutes to kill. I suggested flying a kite--and E jumped at the chance!
The wind was unpredictable, and with only two of us, I was nervous that the kite might pull E over, or we'd lose it. Nope. E held tight, and never fell. When the kite crashed, I'd run over and relaunch. E tried holding the kite with either hand.
Even though it was COLD COLD COLD, we were both glad to be outside.
We've had such a warm winter, we weren't sure if the girls would get any snow this year. We were under the threat of snow all day--and it finally arrived!
Bundled up before dinner
We gave E her crutches and let the kids loose. Our neighbors were already outside. E stormed up the hill, no sweat. HUGE CHANGE FROM LAST YEAR.
Viv, of course, moved much better outside. But she still needed her big sis to show her the ropes.
Downhill race!
With their wrists exposed and their mittens filling with snow, one last angel for each!
This week has been pretty impressive in terms of what I'm calling "motor planning". Elena is doing very well with accomplishing tasks that involve coordinating several limbs at once (doing different things). This is hard to put into words--but I guess it's like the mental coordination of patting your head and rubbing your tummy--you can do it, but it takes thought and coordination--and then BOOM you have it.
Like, at Jump For Heart her timing was pretty good--but landing the jump was not, so she needed help there. Still, her coordination and timing were better than they've ever been.
Here's E at PT last week:
What's great here is not only does she keep control of the ball, but she 1) doesn't fall over, 2) doesn't lose the ball, 3) stops in space--WITH the ball, 4) and shoots it without falling over AND 5) when the ball bounces back at her, she catches it and tries again. This fluidity (if I can call it that) is coming more naturally to her, and that's pretty new. Notice once she stops, she does NOT move her feet to get the ball--the impetus to move her feet to react to an object not aimed correctly at her is not there yet--but it is emerging (thanks to lots of soccer practice!).
We've had a few ballet mentor sessions. So far, i think they are going well. I'd put them in a post by themselves but my pictures/videos aren't that good. But I do have E doing a skip!
It started with her teaching her a passe move, and while it was challenging for E, it wasn't that exciting. When Ms. J used that as a building block to skip, E's eyes lit up and she asked to skip all the way to the exit. (She was pretty tired, though).
Sure, it's a skip with heavy assistance, but it's definitely a new way of moving for Elena, and she was very proud of herself--that's a total win!
With Ms. C, E learned a little more about "turn out"--which is brand new to Elena, as her lower limbs constantly sink towards the midline. E can turn out her feet a little now, and can attempt 1st-5th positions, which again--the motor planning aspect is present. She's also getting to know her feet a little better--I'm trying to have her learn the difference between pointing and flexing. We've been doing dorsiflexion drills for years, and she's decent at flexing her feet. Unfortunately, that's the only deliberate foot motion she knows. If E could point her feet on demand, it would make getting dressed MUCH easier (especially putting on pants). So far, I think she's making fantastic progress, and more importantly, seems to be doing so while enjoying herself.
Next up: BALLET PICS--I got 'em! Summer Camp, Schedule Overhaul, and outdoor soccer starts this week!
Okay, I know the new splash page doesn't fit. E was so excited about her new shoes I had to put up a picture.
Check HERE for the start of the Beach Walker posts! I'm working (slowly) on a separate link for the whole saga.
Mission Statement
No one plans, or expects, to have a child with a disability. When this happened to us, we started a desperate search to find information relating to milestones or expectations for our daughter after her diagnosis. Most of this was fruitless. My hope is for this site to help any person or parent in a situation similar to ours.
I'm a work-hard, play-hard multitasking wife and mother of two. I'm lucky to have a supportive family and friends, and live in a great town for children with (and without) disabililties. Elena is my firstborn, born at 33w with mild spastic diplegia. Vivian is my secondborn--almost at 28w, but with a lot of help, made it to 38 1/2w and developing normally.
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