Dance Mentor: Ms. C

FINALLY I have some decent ballet pics/vids!

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!

And for the finale? Reverence!

Catch-Up

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.

Basketball and Ballet

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.

Nutcracker Bold

Last night, Nana treated Elena and I to a live performance of The Nutcracker. This is E's first time seeing a grown-up ballet live. My only concern was the time--the only showing was at 730 pm, which is bedtime at our house.

But, it's Winter Break from school. We dressed up and hoped for the best.

We arrived just on time. The theater was sold out, and we had good seats (close to the end of the aisle if we needed to exit). Elena was TIRED. But it was certainly intoxicating--the theater was hot with people, and when the lights went down E's excitement was palpable.

The show was terrific--but it was the intermission that really surprised me.

We got up for a drink. Elena navigated the crowd well (and there were a lot of people). Everyone was very polite, with the exception of the curious stares. Once we found our seats, I saw oh-so-familiar "swinging hair" in the aisle next to me.

A girl. Just a little older that Elena.

With a gait...just like her, only a little more torso swing.

I looked at Nana. She saw it too...it's like a sort of "CP radar" or something. The little girl appeared to be with her sister and her grandparents. I so desperately wanted to talk to her. I was choked up about it.

"Do you think I can go up to them and ask about her?" I asked Nana. Elena was oblivious.

"I think so...if anyone asked me about Elena, I'd be happy to talk about her."

Emboldened but nervous, I approached the Grandmother. "Do you think I could talk to you?" I asked her with a smile, intending her to come into the aisle so not to talk over their granddaughters. Friendly but reserved, she complied.

I told her I noticed her granddaughters gait, and I was very impressed with her walking--the aisle sloped downward, and the girl was walking without any help or devices. I told her my daughter was 6, and had SDCP and uses crutches.

"The pretty pink ones? She's so beautiful!" the grandmother said. We had a lively conversation. Her granddaughter J had a rhizotomy at 4 yrs too. She started with a walker, and had crutches, and one day told her Dad "I'm a walker" and decided she didn't want them any more. HOW AWESOME IS THAT? J has a wheelchair for "long distances". I didn't have time to ask what a long distance to J meant. She introduced me to her granddaughters. J smiled at me. She seemed to be happy--happy to meet a stranger who was proud of her, and I think happy to be an example for a younger girl. She looked at E (a few rows back, nearly sleeping with her eyes open on Nana's lap) and saw her crutches, and seemed to be proud (which she should be!). Her sister was quite nice also, and engaging.

Overall, a fun, exciting (and late!) evening, complete with a great intermission. Bravo!

Let's Dance

I got an email about the winter community class schedule. Since Elena's in school (and has some other activities), this typically means scheduling stuff for Vivian.

Vivian has been CRAZY for The Nutcracker this year. As in, she knows (almost) the entire ballet (Baryshnikov version, anyway). Out of sheer circumstance, she got the opportunity to dance around (starting off with other little kids) a studio last week while the teacher cleaned up.

Viv stayed there nearly 20 minutes after everyone else had left, dancing by herself.

Oh boy. I better find her a dance class.

What about Elena?

Elena is 6. When we start new activities, with new people, there are so many questions. I rarely shy away from questions, but Elena is in a stage where her disability seems to be more front-and-center than usual, and I want her to enjoy herself rather than be a distraction to the class and a giant elephant in the room. It's a new concept to me...I am typically very open about Elena's disability--it's not a secret, but it's not the most defining thing about her. I guess right now, I see her as more fragile than normal. Not in a seriously fragile way, but in a 'needing a confidence boost' sort of way. Constantly explaining her disability to others is not confidence-inspiring.

Part of it is that I can see her watching her little sister. Vivian is three, and constantly jumps, runs, and kicks. Elena sees that. Vivian is always yelling "Hey Mom, look what I can do!" as she does some sort of jump. Seeing Vivian's pride in me acknowledging her achievements is both heart-warming and heart-breaking, because somewhere I KNOW Elena wants to do the same things, and it's just different. It doesn't come naturally to her.

Let me be clear: I will not keep Vivian from trying activities (dance, tumbling, soccer, etc.) that will highlight her motor capabilities. I know that would not be fair to Vivian. But I want Elena to also enjoy physical activity, sports, dance, and everything else.

Well, I don't have an answer. But I did have an idea.

Elena also loves dance. So I emailed a dance (ballet) club in our college town, to see if I could find a 'dance mentor" for Elena. More of a one-on-one dance "class", where the emphasis would be on fun and movement. I directed them to this blog, so they could learn more about Elena. And you know what? In under 30 minutes, I got two messages from dancers who would LOVE to work with my girl.

It's ON!

To be continued...

Prognosis of a Faun

You may remember my post about The Faun; my reaction to watching a theater performance, starring Gregg Mozgala.

Since then, Gregg and I have exchanged some messages regarding this blog, Elena, dancing, and his performance(s).

They want to make a documentary about this story. They are soliciting donations to make this happen.

If theater isn't your thing, I understand (it's not mine, either). If dancing isn't your thing, I get it. But if you are the parent of a child with a disability, this story is amazing. Ballet changed Gregg's life.

What if Gregg was your son? He reminds me so much of Elena. If his story, the Faun performance, or this documentary could help one other person, or help educators envision another outlet for our kids--wouldn't that be fantastic?

I will certainly highlight it here if the film gets the green light. And if it does, please check it out.

Are there other films/movies that I should know about? Do you have some that really resonate with you, especially if you or someone in your life is affected by CP?

The Faun

I had the pleasure last weekend of attending a play. Now, let me be honest...when I get a break, or a chance to unwind, typically I want popcorn/bubblegum/gossip rags/sleep/mindless Netflix/sports--the last thing I want to do is deep thinking.

I read an article about Gregg Mozgala last year (or maybe later than that, I can't remember). He's an actor/writer/performer, and he has cerebral palsy like Elena. The article was, in essence, how Gregg's physical control of his body--gait, balance--was transformed by a ballet instructor who mentored him. Naturally, I immediately tried to find his contact information so I could write him about his experience, and see if he had any pearls of wisdom for me. No luck.

Through the Facebook grapevine, a few weeks ago I saw that he had a new website up--complete with upcoming performances. And one was in Northern Virginia--close enough to make the drive. I bought two tickets.

Diagnosis of a Faun

(I'm really tired here...hope i don't mess this recap up too badly)

Created by Tamar Rogoff, this piece investigates healing through science and art. Set (more or less) in present day, the play begins in the forest home of the Faun. A Ballerina enters the forest, capturing the Faun's attention--but during her dance, she falls and tears her tendon. The rest of the piece is set in and around a hospital, with doctors trying to heal the Ballerina. The Faun is also studied by the doctors as an example of how modern medicine would address his alignment/gait. The actors explore the juxtaposition between reality/fantasy, doctor/patient, human/beast, love/loss, empathy of looking at the whole person/stoicism of treating an acute injury. Or, something like that.

There are four players in this piece; Gregg stands out for many reasons--wearing only a loincloth, and being the only mythical creature being two obvious ones. Maybe the other theatergoers were watching the actors equally--but my focus was on Gregg and his movements. He started the play on a rock structure, at least three feet off the ground, with staggered rock steps leading up to the uneven platform. He moved all around the space; running, jumping, leaping, starting, stopping, getting up from the floor and back down again, forwards, backwards. His gait is imperfect; he has an obvious CP gait. His knees buckle in slightly; he appears to have tibial and femoral anteversion, like E. Several times during the piece I see his legs pulsing, either from fatigue or clonus. He can put both feet flat on the floor--but it seems that he has to think to do it--every time. He stands frequently with his weight on one leg, flat; the other, toes curled under, dragging slightly behind. So familiar.

I also saw a man. A grown man, independent and brave; a powerful, masculine, sexy, talented, strong man. A man, who went through the aches, pains, failures, successes, and mistakes that every person goes through while becoming a dancer. An individual who had to develop trust with a partner. Just...a guy, a performer, an artist, who happens to have CP.

My father and I got the opportunity to talk to him after the show. I hoped that we would...I wasn't really sure what to say, but it related to how he was able to move like he did. To me, he never stopped moving like a guy who had CP; but he moved wonderfully, and in a way that I hope and pray E will one day. He mentioned that growing up, all this therapists, teachers, doctors--everyone--was trying to get him to move like other people. And, why not; that's the best way to move for proper body alignment--and that was his only example. All the focus was therapy, exercise, repetition, try harder, relax, etc. He said the big breakthrough for him (in the beginning of his dance training, he said just thinking about stepping made him fall "all the time--ALL THE TIME") was putting the focus on the chest, the midline, the breath. He studied Alexander Technique, Yoga (I think), and through dance--found a way to better connect with how he moved his body. I said that sounded like a very mature concept--which he agreed.

While I'm not going to stop E's normal therapy schedule--PT, CME, sports, dance, {insert what she wants to do here}, this concept sounds a lot like Feldenkrais and Yoga. Focus, flexibility, strength, from the breath, from the core.

Don't ask me how you get an almost 6-yr old to absorb all that...but it's something I'll try to foster as E gets older, as best I can.

Thanks to Tamar and the cast and crew for a fantastic, intimate show. And although you've probably heard this many times before--Gregg, you are a fantastic inspiration. Thank you.

Busy Saturday Part II: A Fairy Tale Gathering

Before Christmastime last year, we went to a local celebration where, amongst other things, there were some lovely ballerinas performing some Nutcracker dances. I received a flyer for upcoming performances. I anxiously awaited their Fairy Tale Gathering, an interactive show just for kids.

Before buying tickets, I asked what "interactive" meant; if it was going to be kids swarming the stage trying to do pirouettes all at the same time, that was not going to be a great situation for E. Lucky for us, it meant getting a little out of your seat, clapping, shouting, dancing by your seat, that sort of thing. We were PSYCHED. I invited Grandma down to make it a super special engagement.

We LOVED the show--everything about it! There were gorgeous dancers, pretty costumes, fun activities, and even a tea party afterwards where we could meet the dancers. Sure, there were some kids who didn't understand that it was rude to try to squeeze by Elena, or jostle her too hard--but that was fine, and E didn't fall. We saw some familiar faces, and some of the dancers even remembered E from Christmastime!

E and the Sugarplum Fairy



E and Prince Charming



E, Mommy, and Sleeping Beauty



E, Little Red Riding Hood, and the Big Bad Wolf



E, Snow White, and the Fairy Godmother



E and Cinderella



Can't wait for the next show!

Dance Class: Sashay!

E is in a community dance class. Before enrolling her in the class, I made sure the administration and the teacher knew E was different. SW is her "shadow", to help E move around the best she can. The other kids in the class are between 3 and 5 years of age. It's nice to see that E's attention span is just like the other students, even though her motor skills are not.

I'm sure it's a little intimidating for the teacher, having a special needs kid in the class...but E enjoys it, and she tries to involve E as best she can. The other kids/parents have asked about Elena, and I try my best to field the questions as they come.

Here is E, SW, and the teacher doing their dance move.



And Mommy and E doing some big steps during a Dance Break (where the kids get some "freestyle time", which they are DYING to do, since most of them are wearing little tutus and just want to twirl and jump in front of the mirror). I get off work to arrive just before the class gets out. Note E makes a nice big step with the left, but not with the right. We're trying, though!