Coach Tom brought his sports clinic program closer to home!
On Fridays, we'll be going to OCB until the end of the school year. It's a 30-minute drive...this is a little bit of a tall order, but we're making it work. I take both E and Viv. The program is for families, with the focus of helping SN kids work on sports skills in a very welcome environment. E LOVES IT.
The staff (Mr. Rich, Coach Tom, and helpers including our own Jimmy!) help the kids work on throwing, catching, kicking, picking things up, rolling, running, and stopping. There are children in wheelchairs, who are blind, who have behavioral disorders, etc. etc. and EVERYONE has a great time, EVERYONE is included, and EVERYONE is welcome. It's really wonderful. And, did I mention it's free?
Here is E working on some skills:
Last week, she wanted to ditch her crutches after using them for the first 5 minutes. She did the rest of the session--nearly 50 minutes--largely without assistance! Including standing up, getting up from falling, throwing, catching, kicking, running, etc. She did sit on my knee during one teaching moment, and held a hand here and there, and touched a wall here and there. Still--that's probably the longest E has been on her own, upright, without devices, while being super active. She was sweating, which is a relatively rare occurrence. AWESOME JOB E!!
Monday, May 16, 2011
Monday, May 2, 2011
6 YEARS OLD
Dear Elena,
April 30th, 2011 was your SIXTH BIRTHDAY!! I know you have been so excited about turning six. You want to do more around the house--"washing dishes" and "feeding the cat" are jobs you want to do, now that you are older. You LOVE soccer, baseball, playing catch, and all manners of dollies and PINK.
You are an amazing girl. You are a great student at school. You are finding a way for yourself, more and more on your own. Whether it's playing or working at school, being a great Daisy scout with your scoutmates, being an amazing, patient sister to Vivian, being active outside or being creative inside, you are an inspiration to your family and others.
We love you always, in all ways. HAPPY BIRTHDAY!!
E's choice this year for her Birthday Theme was "Music and Math". (We typically have a theme bday; usually this works great, and it "levels the gross motor field" b/c the kids are exposed to something new). I tried my best to serve that up...but the concept of music theory (VERY mathmatical!) is extremely complex, not to mention I'm not a musician of ANY type! So, I tried...I gave a brief (well, I hope it was brief, it was probably a little too long) discussion of What is Sound (vibration through a medium), natural frequency (like a wet finger on a wine glass--"Glass Harp") and that you can make a scale with any given note (I tried starting with C, making one octave with glass bottles containing different levels of water). Then while people had pizza and cupcakes, some short vids of non-traditional musical instruments (saw, glass harp, PVC pipe organ, and Vadrum videos of "classical percussion"). Then I had an acapella group come to the house--my favorite group from UVA when I was there as an undergradate, The Academical Village People ("AVP") to sing us a few songs. They were GREAT!! Uncle Andy also brought his instruments (guitar, amps, loop stations, keyboard, and microphone) in the playroom so between the "shows" the kids could jam, or play, or listen.
Kids listening to "the show"
Never Say Never
A Whole New World
Happy Birthday Serenade
Viv learning guitar
Playing outside after the "shows"--E falls about a minute after walking in the grass. But her friends help her up--no worries.
E playing with the soccer ball! I'm not helping her at all here!
Vivian's tribute at the "Afterparty" (family and presents)
E's summary, in song
EXHAUSTED!!
E and Uncle Andy "faking a nap" (but it wasn't faking!)
Thank you to all our friends and family, and huge thanks to AVP and Uncle Andy for making Six a great birthday celebration!
April 30th, 2011 was your SIXTH BIRTHDAY!! I know you have been so excited about turning six. You want to do more around the house--"washing dishes" and "feeding the cat" are jobs you want to do, now that you are older. You LOVE soccer, baseball, playing catch, and all manners of dollies and PINK.
You are an amazing girl. You are a great student at school. You are finding a way for yourself, more and more on your own. Whether it's playing or working at school, being a great Daisy scout with your scoutmates, being an amazing, patient sister to Vivian, being active outside or being creative inside, you are an inspiration to your family and others.
We love you always, in all ways. HAPPY BIRTHDAY!!
E's choice this year for her Birthday Theme was "Music and Math". (We typically have a theme bday; usually this works great, and it "levels the gross motor field" b/c the kids are exposed to something new). I tried my best to serve that up...but the concept of music theory (VERY mathmatical!) is extremely complex, not to mention I'm not a musician of ANY type! So, I tried...I gave a brief (well, I hope it was brief, it was probably a little too long) discussion of What is Sound (vibration through a medium), natural frequency (like a wet finger on a wine glass--"Glass Harp") and that you can make a scale with any given note (I tried starting with C, making one octave with glass bottles containing different levels of water). Then while people had pizza and cupcakes, some short vids of non-traditional musical instruments (saw, glass harp, PVC pipe organ, and Vadrum videos of "classical percussion"). Then I had an acapella group come to the house--my favorite group from UVA when I was there as an undergradate, The Academical Village People ("AVP") to sing us a few songs. They were GREAT!! Uncle Andy also brought his instruments (guitar, amps, loop stations, keyboard, and microphone) in the playroom so between the "shows" the kids could jam, or play, or listen.
Kids listening to "the show"
Never Say Never
A Whole New World
Happy Birthday Serenade
Viv learning guitar
Playing outside after the "shows"--E falls about a minute after walking in the grass. But her friends help her up--no worries.
E playing with the soccer ball! I'm not helping her at all here!
Vivian's tribute at the "Afterparty" (family and presents)
E's summary, in song
EXHAUSTED!!
E and Uncle Andy "faking a nap" (but it wasn't faking!)
Thank you to all our friends and family, and huge thanks to AVP and Uncle Andy for making Six a great birthday celebration!
Sunday, April 17, 2011
Upright Bike
Our PT Theresa let us borrow her daughter's bike with training wheels. We've tried it a few times at therapy--it was a little challenging at first.
But--after raising the seat, and adding a few velcro straps to the pedals--VOILA!
SHE LOVED IT!! The bike frame is a little too small for her. No matter--E was very proud of herself, biking solo through the puddles (we've had tons of rain lately) and up "hills' and over "cracks", and over a bridge (this trail is pretty flat overall). She still gets frustrated if she gets stuck; she sometimes forgets the mantra of "up and around" with the pedaling motion, and once she almost tipped over, despite the stability the training wheels provide. We tend to guard her closely, to give her a teeny push if needed--to ensure a successful ride. We'll definitely be doing this again!
But--after raising the seat, and adding a few velcro straps to the pedals--VOILA!
SHE LOVED IT!! The bike frame is a little too small for her. No matter--E was very proud of herself, biking solo through the puddles (we've had tons of rain lately) and up "hills' and over "cracks", and over a bridge (this trail is pretty flat overall). She still gets frustrated if she gets stuck; she sometimes forgets the mantra of "up and around" with the pedaling motion, and once she almost tipped over, despite the stability the training wheels provide. We tend to guard her closely, to give her a teeny push if needed--to ensure a successful ride. We'll definitely be doing this again!
Saturday, April 16, 2011
Picture Recap
We've had a lot going on these days. In no particular order, here are some highlights!
Posing for Grandpa
$0.05 cent cone day!
Viv refused to sit still for the picture
Decorating an Easter Bag before the Hunt
Hunting (we're slow; E uses one crutch to walk; she picks up eggs with the other hand
Got to hold a real bunny
Bunny face
Posing for Grandpa
$0.05 cent cone day!
Viv refused to sit still for the picture
Decorating an Easter Bag before the Hunt
Hunting (we're slow; E uses one crutch to walk; she picks up eggs with the other hand
Got to hold a real bunny
Bunny face
Monday, April 11, 2011
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.
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.
Sunday, April 3, 2011
A Feldenkrais Update
We did a little bit of Feldenkrais last year. Then there was a big break--partially because we were busy, partially because it's expensive, and partially because I wasn't sure if it was worth it. I thought our practitioner "Mr. Keith" was good, but I wasn't sure if that's where we should spend our time and money.
We decided to revisit Feldenkrais right before and right after E's lengthening surgery last November.
And we're still doing it.
WE'RE COMMITTED.
It's not like some magic switch...but I feel like our "regular" PT (a mix of CME and traditional PT) and Feldenkrais, post-lengthening, really have come together in this "perfect storm", where E's some sort of super sponge and new things are happening all the time. We do F'krais 2x/week (Mondays and Saturdays). Elena loves her time with Mr. Keith. And while she doesn't come out of each session magically running around as if she didn't have CP--we see changes. So does Keith.
If you're not sure what a F'krais session looks like, Keith prepared these videos. It's great commentary, and every time I see something like this...I'm reminded of a little girl, who could barely stay in a sitting position, and who stood literally on her (right) ankle--instead of the bottom of her foot.
Ball Toss
Standing
As always, thanks Mr. Keith!
We decided to revisit Feldenkrais right before and right after E's lengthening surgery last November.
And we're still doing it.
WE'RE COMMITTED.
It's not like some magic switch...but I feel like our "regular" PT (a mix of CME and traditional PT) and Feldenkrais, post-lengthening, really have come together in this "perfect storm", where E's some sort of super sponge and new things are happening all the time. We do F'krais 2x/week (Mondays and Saturdays). Elena loves her time with Mr. Keith. And while she doesn't come out of each session magically running around as if she didn't have CP--we see changes. So does Keith.
If you're not sure what a F'krais session looks like, Keith prepared these videos. It's great commentary, and every time I see something like this...I'm reminded of a little girl, who could barely stay in a sitting position, and who stood literally on her (right) ankle--instead of the bottom of her foot.
Ball Toss
Standing
As always, thanks Mr. Keith!
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