We do "frog poses" every night as our last stretch before bedtime; the intention is that E feel her weight shift to her feet, and try to get her feet flat on the ground. She can probably get her feet as flat as mine in a Frog Pose.
Then we try to stand up. Ideally without her knees coming together. We've never been successful.
Until today.
Disclaimer: we tried this 17 times. But that was E's choice! This clip is #11--she was pretty determined. I plan on mashing up those videos and putting it on The Doodle.
In a perfect world, she'll keep her knees apart, and stay standing once she's up (instead of immediately moving). But tonight? THIS IS AWESOME SAUCE.
Great job, E!
Wednesday, July 14, 2010
Shout Out: Bounce n' Play Rocks
I was going to write this up before the previous Reality Check post. Well, here it is.
The Bounce n' Play in town is FANTASTIC! I went there with E, her little sister Vivian, and our fantastic nanny Annette. There are climbing structures, both permanent (structural) and inflatable; an art room, as well as a painting room (you can paint the walls!); a toddler room; a fish pond; and a pretty good cafe. All this makes for a great day, provided your child can maneuver around the area. Which, as long as it's not too crowded, Elena can.
After speaking with the staff--E had permission to wear her shoes. I decided to leave them off...sneakers just stick when she should be sliding. The structured climb/slide arrangement is too big for Elena--and not because she has CP. I went in there with her (tight squeeze, let me tell you) and I ended up helping a slew of kids get up and down. Both girls liked the big slides.
Bounce houses are still one of those lump-in-the-throat situations...lots of kids, standing up, giggling, while my kid is trying and failing miserably do to do the same, while hoping that she doesn't get kicked in the head or worse. I find it's better to be in a Bounce House Situation if it's not too crowded AND if it's with friends that we know well. Here it was neither. And you know what? It was still okay.
It helps that E can climb up structures in a Bounce House (with some assistance). I wasn't the only adult helping their kid around the big structures, which was comforting. And it's also nice to see our motto "everybody falls" in action, b/c all the kids fall when on the inflatables. When it was really crowded (we got there when it opened; after 90 minutes, lots of people were there) the kids were actually very nice, and very patient. What a nice surprise (and their parents weren't even there to tell them to be nice). We ended up leaving the bounce area after that time, b/c the kids were getting tired and the place was filling up. We fed the fish, and then Viv went to the toddler room and I took E to art. She even met a new friend while coloring!
The BnP is a great place to take E and Viv, provided we're there at opening time. The staff and the clientele were very accepting of our situation. That's not exactly rare in this town, but it's always reassuring to witness.
Tuesday, July 13, 2010
And so It begins...
We went to the Bounce n' Play today. More about that later.
It was the exchange after dinner that really got me.
Elena was talking to Jason about our time there--she tends to really give detailed descriptions these days--and she recounted the event where she was climbing the slide ladder, with 5 (older) kids behind her.
"I heard Mommy tell them I had Cerebral Palsy. I know that's why I'm so slow."
And she kept on talking about the rest of our stay while I cringed. I didn't think she had heard me.
*sigh* Look. It's not a secret in our house that E has CP. But we don't say it often, either--and we certainly don't use it as an excuse. It's just one of those things *that is*, and we don't really harp on it.
As I was putting her to bed though, I brought it up.
"Elena, you know when I said that you had CP?"
She looked at me. "Yes."
"Well, that's true. But you can do anything."
She buried her face in her pillow. "But those kids said I was so slow...they all wanted to go in front of me." (None of them went in front of her, though.)
"Did you hear what they said after that?"
"No."
"They said that you did a great job."
She looked at me like I was lying. "When did they say that?"
I got closer to her.
"When you made it to the top."
E smiled, a big huge smile, as if she were emerging from some deep fog. And she hugged her buddy tight, and went to bed happy.
What do I say next time? What do I do when the scenario doesn't end well? This isn't going away. If anyone has advice, I'd sure like to hear it. I have a feeling this next year is going to be full of situations like this one.
How do you steel a five-year old for the harsh reality of living with a disability in an able-bodied world?
It was the exchange after dinner that really got me.
Elena was talking to Jason about our time there--she tends to really give detailed descriptions these days--and she recounted the event where she was climbing the slide ladder, with 5 (older) kids behind her.
"I heard Mommy tell them I had Cerebral Palsy. I know that's why I'm so slow."
And she kept on talking about the rest of our stay while I cringed. I didn't think she had heard me.
*sigh* Look. It's not a secret in our house that E has CP. But we don't say it often, either--and we certainly don't use it as an excuse. It's just one of those things *that is*, and we don't really harp on it.
As I was putting her to bed though, I brought it up.
"Elena, you know when I said that you had CP?"
She looked at me. "Yes."
"Well, that's true. But you can do anything."
She buried her face in her pillow. "But those kids said I was so slow...they all wanted to go in front of me." (None of them went in front of her, though.)
"Did you hear what they said after that?"
"No."
"They said that you did a great job."
She looked at me like I was lying. "When did they say that?"
I got closer to her.
"When you made it to the top."
E smiled, a big huge smile, as if she were emerging from some deep fog. And she hugged her buddy tight, and went to bed happy.
What do I say next time? What do I do when the scenario doesn't end well? This isn't going away. If anyone has advice, I'd sure like to hear it. I have a feeling this next year is going to be full of situations like this one.
How do you steel a five-year old for the harsh reality of living with a disability in an able-bodied world?
Friday, July 9, 2010
Beach Recap, picture style
Some highlights from our Beach Trip! There were 18 of us (my immediate family, and extended family on my father's side). Thanks so much to the Hawk for organizing this, and to my Dad and sister Kate for taking most of these pictures.
I feel bad for not including pictures of the rest of the family that were there...but there were so many pictures that I loved of my own kiddos that I decided to just put up these. No hard feelings, fam.
And I'd put captions on them, but I am SO TIRED.
I feel bad for not including pictures of the rest of the family that were there...but there were so many pictures that I loved of my own kiddos that I decided to just put up these. No hard feelings, fam.
And I'd put captions on them, but I am SO TIRED.
Tuesday, July 6, 2010
Mother of Invention: Rain Shoes
Elena has, technically, two pairs of shoes.
E's footwear requirements are pretty strict. Her main pair of shoes are the ones she wears with her AFOs; the shoe fits the AFO, not her foot. It has to be wide to accomodate the brace, and has to be able to be fastened tightly to try to keep her feet from wiggling out of the shoe OR the brace (so, no flimsy straps, elastic slip-ons, or laces). They also need to be light (Hatchback shoes are made to accomodate AFOs-but they are twice as heavy as a normal sneaker). Elena also has a leg length discrepancy; her right leg is longer than her left. We put a lift in-sole on her left shoe (we can't put it inside the shoe, b/c there is not enough room with her AFO) to equalize her leg lengths. In order to do this, the tread must be thick enough to accomodate the lift.
All this makes for a VERY expensive pair of shoes--and that doesn't even include her AFOs. Luckily for us, Elena gets a new pair of shoes about every 5-8 months, depending on how much she's grown.
Her sneakers (the shoes she wears without her AFOs in many of the PT videos) also have a lift in-sole, as well as customized arch supports. The arch supports were designed to try to keep E from excessively pronating her feet, especially on the right; our orthotist did not believe they would help much, but said they wouldn't hurt. Since Elena is typically not flat in her shoes, at least when she is moving (dynamic tone + contractures), the arch supports cannot do their job. Still, I think it was worth trying. In any case, these second pair of shoes are also quite expensive due to the LLD and the arch supports. A better sneaker for Elena would also include some ankle support (like a stiff high-top shoe, with the same thick, hard sole).
That doesn't leave us many options for dressing up.
But, on a less superficial tangent--what about the weather?
Rain, snow, and excessive heat are a real problem when it comes to E's footwear. For snow, one of the moms on a newsgroup I belong to mentioned A SHOE BY Circo (Target Brand) and they were fantastic, at least for putting on over her AFOs (E has a hard time moving in snow, for obvious reasons as well as the weight of the boots).
Rain, water, and mud have been a real pain. So, I had to become an inventor.
I needed some kind of rain boot that was 1) cheap, 2) would fit over E's AFOs AND shoes (as she'd be going to school), 3) had traction, 4) weren't too big or heavy, 5) and that would protect her shoes from getting wet and/or disgusting. I liked the idea of an overshoe, but all overshoes either wouldn't squeeze over her AFO + shoe or required E to "point" her toe to get into the boot (impossible while wearing her AFOs). So I got the idea of having the overshoe being an "overtread"--and VOILA!
Using this ingenious product called Cleatskins (marketed to put over sports cleats to prevent them from dirtying up a car), and a little "gaiter" type of "collar", here's E's rainshoe!
Cleatskins alone
cleatskins on shoes
I thought this idea of using a plastic bag would be great--and super cheap, too. Turns out it doesn't work. When E wears the bag (with a velcro strap around the calf to keep it from falling down), the silicone slips off the bag and falls off. So, I need to glue/sew/strap on a waterproof fabric upper to the cleatskins. That's okay...I"ll attach this picture to this post once I do it.
E's footwear requirements are pretty strict. Her main pair of shoes are the ones she wears with her AFOs; the shoe fits the AFO, not her foot. It has to be wide to accomodate the brace, and has to be able to be fastened tightly to try to keep her feet from wiggling out of the shoe OR the brace (so, no flimsy straps, elastic slip-ons, or laces). They also need to be light (Hatchback shoes are made to accomodate AFOs-but they are twice as heavy as a normal sneaker). Elena also has a leg length discrepancy; her right leg is longer than her left. We put a lift in-sole on her left shoe (we can't put it inside the shoe, b/c there is not enough room with her AFO) to equalize her leg lengths. In order to do this, the tread must be thick enough to accomodate the lift.
All this makes for a VERY expensive pair of shoes--and that doesn't even include her AFOs. Luckily for us, Elena gets a new pair of shoes about every 5-8 months, depending on how much she's grown.
Her sneakers (the shoes she wears without her AFOs in many of the PT videos) also have a lift in-sole, as well as customized arch supports. The arch supports were designed to try to keep E from excessively pronating her feet, especially on the right; our orthotist did not believe they would help much, but said they wouldn't hurt. Since Elena is typically not flat in her shoes, at least when she is moving (dynamic tone + contractures), the arch supports cannot do their job. Still, I think it was worth trying. In any case, these second pair of shoes are also quite expensive due to the LLD and the arch supports. A better sneaker for Elena would also include some ankle support (like a stiff high-top shoe, with the same thick, hard sole).
That doesn't leave us many options for dressing up.
But, on a less superficial tangent--what about the weather?
Rain, snow, and excessive heat are a real problem when it comes to E's footwear. For snow, one of the moms on a newsgroup I belong to mentioned A SHOE BY Circo (Target Brand) and they were fantastic, at least for putting on over her AFOs (E has a hard time moving in snow, for obvious reasons as well as the weight of the boots).
Rain, water, and mud have been a real pain. So, I had to become an inventor.
I needed some kind of rain boot that was 1) cheap, 2) would fit over E's AFOs AND shoes (as she'd be going to school), 3) had traction, 4) weren't too big or heavy, 5) and that would protect her shoes from getting wet and/or disgusting. I liked the idea of an overshoe, but all overshoes either wouldn't squeeze over her AFO + shoe or required E to "point" her toe to get into the boot (impossible while wearing her AFOs). So I got the idea of having the overshoe being an "overtread"--and VOILA!
Using this ingenious product called Cleatskins (marketed to put over sports cleats to prevent them from dirtying up a car), and a little "gaiter" type of "collar", here's E's rainshoe!
Cleatskins alone
cleatskins on shoes
I thought this idea of using a plastic bag would be great--and super cheap, too. Turns out it doesn't work. When E wears the bag (with a velcro strap around the calf to keep it from falling down), the silicone slips off the bag and falls off. So, I need to glue/sew/strap on a waterproof fabric upper to the cleatskins. That's okay...I"ll attach this picture to this post once I do it.
Thursday, July 1, 2010
Let's Go Fly A Kite
One of our Beach Objectives was to fly a kite! I had scouted out a kite shop before we arrived, and asked them if they had a kite that E might be able to fly.
I got it started--E could do that herself, it's so easy--maybe we'll try that today. E loved flying the kite. She would let out the line, and loved to watch it from her beach walker or her beach chair. Her sister Vivian liked it too.
Annette (our fantastic nanny): This one's for you. The girls love their beach chairs!
I got it started--E could do that herself, it's so easy--maybe we'll try that today. E loved flying the kite. She would let out the line, and loved to watch it from her beach walker or her beach chair. Her sister Vivian liked it too.
Annette (our fantastic nanny): This one's for you. The girls love their beach chairs!
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