2011 was a fun, exciting blur of a year. I have to say, I'm looking forward to 2012. Last year was extremely busy, with lots of Mom Solo (with the hubby in school or away on business), lots of bursts of activities. Overall it was a very good and successful year...and a very tiring one.
I think it was energy well spent--but I need to re-energize. Recuperate? I'm not exactly sure how to do that, but I'm going to try. I'm still thinking of goals for 2012 though.
First, a Review of Past Goals:
--E will be able to carry items at home--specifically, food to the dinner table. CHECK. She can bring non-breakables to the table, and helps clear (plastic) plates/trays. She still spills often, but it's a work in progress.
--E will make some progress getting out of the bathtub. CHECK. Elena can get out of the small bathtub by herself (with supervision). Unfortunately, now we bathe the girls together in a different bathtub that has a higher side.
--E will be able to put her own AFOs on, with supervision. HALF CHECK. Elena can get her surestep inserts on, but not the kiddiegait and shoe part. She can get her regular sneakers on (her shoes she wears without AFOs).
--E will successfully navigate a step without assistance, and without crutches. CHECK! She went up and down a free-standing step at PT, and she can go up and down steps with only one hand on the banister and the other free. Steps are still a challenge, but we're getting there.
--E will be able to put on, take off, and carry a backpack. CHECK!
--I want Elena to make some progress navigating our entire yard. CHECK! She can get outside the back, down the steps, across the grass and to the playset without her crutches and without supervision. She can also navigate around the entire house, steps and grass, with her crutches.
--Elena will be able to get in and out of the pool (using pool steps, a handrail, her swim vest, and anti-slip pool shoes) without scraping her knees and feet. BIG FAT CHECK!
--Elena will answer questions regarding her disability when asked by peers. CHECK. Sometimes I can see she doesn't mind. Other times, she really does, and sometimes, she shuts them down.
--Elena will be able to step side-to-side. Sort-of check.
--Elena will be able to move backwards independently in some fashion. CHECK. She can walk backwards ~10 steps or so without her crutches. She moves about 1-2 feet.
*1. E will walk TO and FROM the bus by herself on a school day. As of yesterday? CHECK!!!
*2. Elena will RUN. And be able to STOP, without a handhold, and without crutches. You mean...Like THIS?
*3. Elena will pivot on one foot (or two feet, simultaneously). Nope.
*4. E will try a jump shot--with a ball, and land without falling down. Untested.
*5. E will attend a dance class without a facilitator. CHECK! She did a yoga class for 5-7 year-olds last month, without a facilitator. I had spoken to the instructor beforehand, and she said that E modified some of the poses but she did GREAT.
--E WILL JUMP ROPE. Half-Check. She sort of did, with Jimmy at the Gym.
--E WILL CATCH A FRISBEE. Untested.
--E WILL WALK A DOG--THAT PULLS THE LEASH. Untested.
--E WILL TAKE A SHOWER--STANDING. She did, but we had a handle in the shower and I helped wash her. Half-check?
--E WILL HIT A PITCHED (NOT TEE'D) BALL WITH A BAT, AND ROUND THE BASES. Check! Did it at PT!
--E WILL ROLLER (OR ICE) SKATE. Check--She did ice skate (with heavy assistance) at the Gaylord Hotel!
And me?
1. Get in better shape. Nope. I'll try again this year.
2. Learn how to use Skype. Does Google Video count? I'm going to say yes.
3. Make a Yoga With E short video. This was a big failure. It just took too long, and I couldn't get E to commit.
4. Cook more at home--ideally, with the kids helping me. Check!
5. Vivian Time. Check!
And now, for 2012!
Tuesday, December 27, 2011
Christmas 2011 Recap
What a great holiday! It was wonderful to have family over, the kids loved having everyone around, and enjoyed their presents. The food was wonderful, the company was great, and things went relatively smoothly.
Preparing for it, though...I was a seriously stressed-out mess. I would have enjoyed it much, much more if I just relaxed more often! I need to work on that.
I organized a picture session with Chris Earle Photography this year. I couldn't put up any of these pictures until after the holiday, since we gave them out for gifts. Here are a few of my favorites. The big difference between this and our other photo sessions? Elena could be the one standing in the picture. (I only have one shown here, b/c it's hard to time the girls' smiles just right!)
We went to my work Holiday Party this year. This is important, b/c there wasn't a close parking space, it was wet and nasty out, and the lighting around the venue was very poor, not to mention the only walkways were "historical"--meaning, cobblestone, or something equally as rough. Elena made it through just fine using her crutches, with a little contact guarding up the steps. The party was GREAT--wonderful food, lots of friendly people, including kids, and a DJ! Vivian and E loved dancing--not to mention, the cookie/cheese table was in the dance room, so everyone enjoyed themselves. There is a gentleman I have seen throughout the building who I had hoped would be there; he has CP, ambulates independently, and always seems to be surrounded by women, and half the time he is speaking another language--he was there, and I was hoping to meet him. But it was a strictly man-to-man defense (1:1 parent:child) and I didn't have the chance.
We also went to a Holiday party in our neighborhood. It was LOVELY! Like a little piece of heaven...food I didn't have to cook, a bartender (!), great neighbors I got to hang out with/meet new people, and ALL THE KIDS WERE DOWNSTAIRS. Even mine. As a matter of fact, Elena came upstairs just to tell me something, and then went back down. She wasn't alone (an older kid neighbor was with her, taking care of someone's baby) but she didn't have to help E navigating the house. THAT IS A MILESTONE, folks! It might not be pretty, but Elena can get around someone else's house--including steps, different bathrooms, wearing a dress, without crutches, and not break anything or impale herself on legos/blocks/puzzle pieces all over the floor in a room crowded with kids. Merry Christmas, indeed!
Santa brought Elena a PINK chess set. She's no Kasparov or Fischer, but she enjoys the game and I know she'll improve. We got a lot of microphones this year--EVERYONE except Jason uses them constantly--we love them. Elena narrates The Nutcracker, sings, Vivian just likes to hear her own voice, I announce dinnertime or pottytime or snacktime--I now think it should be a Mom Essential Item. We also got a little mini-golf indoor setup, and both E and Viv can do it. Elena gets frustrated when the ball is close, but not in, the hole. "THAT'S GOLF." I tell her. Jason smiles.
We loved getting our Doodle Mail! Thank you to all that sent letters! I have already written some of you to tell you our cards will be late...sorry about that. It happens...even though I really hoped to get them all out on time this year. For any family reading this--SORRY we didn't get our Year In Review sent (we didn't last year...surgery got in the way) but I do plan on getting one out. Expect a Leap Year in Review. ;)
Preparing for it, though...I was a seriously stressed-out mess. I would have enjoyed it much, much more if I just relaxed more often! I need to work on that.
I organized a picture session with Chris Earle Photography this year. I couldn't put up any of these pictures until after the holiday, since we gave them out for gifts. Here are a few of my favorites. The big difference between this and our other photo sessions? Elena could be the one standing in the picture. (I only have one shown here, b/c it's hard to time the girls' smiles just right!)
We went to my work Holiday Party this year. This is important, b/c there wasn't a close parking space, it was wet and nasty out, and the lighting around the venue was very poor, not to mention the only walkways were "historical"--meaning, cobblestone, or something equally as rough. Elena made it through just fine using her crutches, with a little contact guarding up the steps. The party was GREAT--wonderful food, lots of friendly people, including kids, and a DJ! Vivian and E loved dancing--not to mention, the cookie/cheese table was in the dance room, so everyone enjoyed themselves. There is a gentleman I have seen throughout the building who I had hoped would be there; he has CP, ambulates independently, and always seems to be surrounded by women, and half the time he is speaking another language--he was there, and I was hoping to meet him. But it was a strictly man-to-man defense (1:1 parent:child) and I didn't have the chance.
We also went to a Holiday party in our neighborhood. It was LOVELY! Like a little piece of heaven...food I didn't have to cook, a bartender (!), great neighbors I got to hang out with/meet new people, and ALL THE KIDS WERE DOWNSTAIRS. Even mine. As a matter of fact, Elena came upstairs just to tell me something, and then went back down. She wasn't alone (an older kid neighbor was with her, taking care of someone's baby) but she didn't have to help E navigating the house. THAT IS A MILESTONE, folks! It might not be pretty, but Elena can get around someone else's house--including steps, different bathrooms, wearing a dress, without crutches, and not break anything or impale herself on legos/blocks/puzzle pieces all over the floor in a room crowded with kids. Merry Christmas, indeed!
Santa brought Elena a PINK chess set. She's no Kasparov or Fischer, but she enjoys the game and I know she'll improve. We got a lot of microphones this year--EVERYONE except Jason uses them constantly--we love them. Elena narrates The Nutcracker, sings, Vivian just likes to hear her own voice, I announce dinnertime or pottytime or snacktime--I now think it should be a Mom Essential Item. We also got a little mini-golf indoor setup, and both E and Viv can do it. Elena gets frustrated when the ball is close, but not in, the hole. "THAT'S GOLF." I tell her. Jason smiles.
We loved getting our Doodle Mail! Thank you to all that sent letters! I have already written some of you to tell you our cards will be late...sorry about that. It happens...even though I really hoped to get them all out on time this year. For any family reading this--SORRY we didn't get our Year In Review sent (we didn't last year...surgery got in the way) but I do plan on getting one out. Expect a Leap Year in Review. ;)
Thursday, December 22, 2011
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!
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!
Tuesday, December 20, 2011
A Family Break before the Holiday
I had planned a Family Holiday, before Christmas...months before, actually. I never realized how much I/we needed a break. Jason is in school (while working full-time), and I'm working and trying to keep the rest going (cooking, cleaning, therapy appointments, E's school/Daisy troop stuff, Christmas prep, etc.)--WHICH, by the way, I could NOT do (well) without our Fantastic Nanny Annette.
We went to Christmas on the Potomac. We drove up on a Sunday early afternoon--and both girls were ANGELS in the car, including Vivian (!).
The Hotel lobby had a little village in it! With trees and everything!
And a fountain that had a light show!
We went to the ICE show--where the entire (extremely frigid 5 degrees) room is full of ice sculptures. It is outside of the hotel. We bundled the girls up tight in their snow clothes. I asked if there were any mobility options through the hotel--the ICE "bubble" was a walk--not far for the able bodied--but I wondered about E, all bundled up in fleece and snow gear. They offered a wheelchair.
It was the first time I considered using one (not counting post-SDR in the hospital). I asked Elena if she wanted one. It is cumbersome for her to walk in her crutches all bundled up, and I didn't want her to run out of energy for the ICE display. I also happened to read a bunch of posts on one of my newsgroups regarding "learned helplessness", so my brain was on overload regarding Elena and her 0.1 mile trek to the ICE bubble. She didn't seem excited to use the chair. After Grandpa told her she'd "get a ride" so she could "have lots of energy" to explore the ICE show, she agreed.
IT WAS SO SMOOTH AND FAST. Inwardly I was very emotional...guilty, disappointed, confused. Once we got inside, we found out that we had some time before entering the cold room, so we bundled up for nothing. We watched a video about the making of ICE, and Vivian was a whiny puddle b/c she wanted to go inside.
Pre-ICE family picture
Everyone had to wear giant parkas, no matter what was underneath. Thank goodness we had on all our warm gear--b/c even with the addition of the parkas, we were cold!
E in front of one of the sculptures--she insisted on walking everywhere on her own, by the way.
They had a huge giant ice slide (no pics), that both girls liked but it was hard and cold, so we didn't stay there long.
After we exited the cold room, the girls got to ice skate!
There was a woman (in the video above) who saw E having difficulty on the ice, and she came over to give us some pointers. First, I was very defensive (Viv and I were far away) b/c I didn't think she realized that E was going to have a harder time on skates than some other kids. But after I got within earshot, I realized that her advice was actually just perfect for any skater. E went around the rink about three times; her last one (shown here) was her best one. At first, she really couldn't get her feet under her body, but she slowly improved, and the woman's tips were excellent (think about taking tiny shuffling footsteps; if your feet drift far apart, try to slowly step them back together; a helper, like J or I, should hold the child's elbow rather than a hand or torso). I spoke to her afterwards and told her about E's CP. She was SHOCKED, apparently. Overall, both kids loved the experience!
There was even a little train!
We enjoyed wonderful food, a fountain and light show in the Atrium (it was huge!), and the glass elevators were a huge hit. The girls were so well behaved at dinner I couldn't believe it. At one meal, we walked to a restaurant .3 miles away from the hotel. After dinner, we walked a little further to explore. Vivian didn't last long, but E and I hung around.
National Harbor Tree
The way back was uphill. Elena kept a good pace, never complained, never fell, and just kept on going. She walked over .75 miles that eve.
Gaylord Decorated "Forest"
It was a Family Holiday where I got to realize how so many things have changed. Changes I am so grateful for. The biggest change is Elena's going to bed/sleeping habits have been reformed so well, she goes to bed easily now, and she was perfect on our little Holiday. Vivian is so vocal and observant--it's hilarious. They (can) play together so well, it's wonderful to see. E is adventurous, both with her palate and her physical activities, and is very independent most of the time. I got to spend time with the kids AND Jason, which is rare, b/c most of the time we're tag-teaming work and family responsibilities and we don't get much time together. It was beautiful. My parents were there, which was also lovely, as it gave us some support so we could just enjoy the kids instead of wondering where the other parent was when the girls went in two opposite directions. It was a break from our normal life, and also let me enjoy how all our hard work has paid off.
Fingers crossed it just keeps getting better.
We went to Christmas on the Potomac. We drove up on a Sunday early afternoon--and both girls were ANGELS in the car, including Vivian (!).
The Hotel lobby had a little village in it! With trees and everything!
And a fountain that had a light show!
We went to the ICE show--where the entire (extremely frigid 5 degrees) room is full of ice sculptures. It is outside of the hotel. We bundled the girls up tight in their snow clothes. I asked if there were any mobility options through the hotel--the ICE "bubble" was a walk--not far for the able bodied--but I wondered about E, all bundled up in fleece and snow gear. They offered a wheelchair.
It was the first time I considered using one (not counting post-SDR in the hospital). I asked Elena if she wanted one. It is cumbersome for her to walk in her crutches all bundled up, and I didn't want her to run out of energy for the ICE display. I also happened to read a bunch of posts on one of my newsgroups regarding "learned helplessness", so my brain was on overload regarding Elena and her 0.1 mile trek to the ICE bubble. She didn't seem excited to use the chair. After Grandpa told her she'd "get a ride" so she could "have lots of energy" to explore the ICE show, she agreed.
IT WAS SO SMOOTH AND FAST. Inwardly I was very emotional...guilty, disappointed, confused. Once we got inside, we found out that we had some time before entering the cold room, so we bundled up for nothing. We watched a video about the making of ICE, and Vivian was a whiny puddle b/c she wanted to go inside.
Pre-ICE family picture
Everyone had to wear giant parkas, no matter what was underneath. Thank goodness we had on all our warm gear--b/c even with the addition of the parkas, we were cold!
E in front of one of the sculptures--she insisted on walking everywhere on her own, by the way.
They had a huge giant ice slide (no pics), that both girls liked but it was hard and cold, so we didn't stay there long.
After we exited the cold room, the girls got to ice skate!
There was a woman (in the video above) who saw E having difficulty on the ice, and she came over to give us some pointers. First, I was very defensive (Viv and I were far away) b/c I didn't think she realized that E was going to have a harder time on skates than some other kids. But after I got within earshot, I realized that her advice was actually just perfect for any skater. E went around the rink about three times; her last one (shown here) was her best one. At first, she really couldn't get her feet under her body, but she slowly improved, and the woman's tips were excellent (think about taking tiny shuffling footsteps; if your feet drift far apart, try to slowly step them back together; a helper, like J or I, should hold the child's elbow rather than a hand or torso). I spoke to her afterwards and told her about E's CP. She was SHOCKED, apparently. Overall, both kids loved the experience!
There was even a little train!
We enjoyed wonderful food, a fountain and light show in the Atrium (it was huge!), and the glass elevators were a huge hit. The girls were so well behaved at dinner I couldn't believe it. At one meal, we walked to a restaurant .3 miles away from the hotel. After dinner, we walked a little further to explore. Vivian didn't last long, but E and I hung around.
National Harbor Tree
The way back was uphill. Elena kept a good pace, never complained, never fell, and just kept on going. She walked over .75 miles that eve.
Gaylord Decorated "Forest"
It was a Family Holiday where I got to realize how so many things have changed. Changes I am so grateful for. The biggest change is Elena's going to bed/sleeping habits have been reformed so well, she goes to bed easily now, and she was perfect on our little Holiday. Vivian is so vocal and observant--it's hilarious. They (can) play together so well, it's wonderful to see. E is adventurous, both with her palate and her physical activities, and is very independent most of the time. I got to spend time with the kids AND Jason, which is rare, b/c most of the time we're tag-teaming work and family responsibilities and we don't get much time together. It was beautiful. My parents were there, which was also lovely, as it gave us some support so we could just enjoy the kids instead of wondering where the other parent was when the girls went in two opposite directions. It was a break from our normal life, and also let me enjoy how all our hard work has paid off.
Fingers crossed it just keeps getting better.
Monday, December 12, 2011
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...
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...
Thursday, December 8, 2011
Let's Get It Started, December!
We LOVE this time of year! We're ALL about it! First weekend, makin' cookies with Grandma and Grandpa!
Community Breakfast with Santa!
Elena played lots of games--all of which she stood herself, or used her crutches. She held her own in the crowd and amongst her peers. Great job E!
Both girls enjoyed crafts, and Viv announces to me that someone special has arrived!
Girls with Santa! E wished for another soccer ball and a chess set. Viv asked for a Nutcracker Dolly (please). So cute!
We've had LOTS of people--neighbors, friends, and family, over to watch the Nutcracker with us. We do a little something different every day, whether it's a Christmas craft, or writing a letter, or putting up a small decoration, or taking a special bath.
It's the most wonderful time of the year.
Community Breakfast with Santa!
Elena played lots of games--all of which she stood herself, or used her crutches. She held her own in the crowd and amongst her peers. Great job E!
Both girls enjoyed crafts, and Viv announces to me that someone special has arrived!
Girls with Santa! E wished for another soccer ball and a chess set. Viv asked for a Nutcracker Dolly (please). So cute!
We've had LOTS of people--neighbors, friends, and family, over to watch the Nutcracker with us. We do a little something different every day, whether it's a Christmas craft, or writing a letter, or putting up a small decoration, or taking a special bath.
It's the most wonderful time of the year.
Run, Little Pigs, Run!!
I stopped by E's school today. This is just a little clip from P.E. class. Look how fast she is now!!
More posts soon. Uploading has taken forever, and I'm SO BEHIND on everything these days...
More posts soon. Uploading has taken forever, and I'm SO BEHIND on everything these days...
Monday, November 28, 2011
Swimming "Graduation"
I managed to get Elena an intensive aquatherapy session. 2x week for approximately 8 weeks. My intention was to prepare Elena to handle a group swim lesson. I'm not sure if she is ready for that--but she is definitely ready for private lessons, should that be a better bridge to a group swim lesson!
10 hops in the water: apparently, this is a milestone for independence in the water.
E uses buoys to swim. Her kick is very good here, better than when her hands are free.
Elena guides herself through a small hoop under water!
Independent swimming! WOW!!! She is using foot fins here. She doesn't have the best kick (she kicks like she is crawling)--but with the fins, it is enough force for her to move through the water. WOW!!
10 hops in the water: apparently, this is a milestone for independence in the water.
E uses buoys to swim. Her kick is very good here, better than when her hands are free.
Elena guides herself through a small hoop under water!
Independent swimming! WOW!!! She is using foot fins here. She doesn't have the best kick (she kicks like she is crawling)--but with the fins, it is enough force for her to move through the water. WOW!!
Sunday, November 6, 2011
Miscellaneous Recap
I'm more than a little behind, but here's a recap.
Parent-Teacher Conference at school
I love E's teacher. He really tries to promote a sense of community in the classroom, and at the same time, allowing the children to be autonomous--at least, part of the time. This is difficult for Elena sometimes. Besides talking about what a great kid E is, e talked about how E relies on her aide, when both of us think she could do certain things herself. E's aide is FANTASTIC--but we wondered how far behind, if any, E would be if the aide just happened to be unavailable. This is an important test, since Elena will most likely not have an aide next year. I also learned (just recently) that we'll be redistricted to a different school next year. Ugh. Anyway, back to the meeting--E is very bright. At present, I have no worries about her academics. We have had some problems with teasing, and I brought it up. The teacher happens to be frustrated, with one child in particular, regarding teasing (not just directed to Elena, but she is an easy target). Not shortly after our meeting, there was a meeting with the principal, E, and the bullying student. That was a bit of a surprise to me--I didn't think they needed an official intervention. BUT, I applaud everyone for taking my concerns seriously. I didn't want to single Elena out. But, if it stops the teasing, or sets an example to show that behavior won't be tolerated, that's fine by me.
A Matter of Time
This sort of ties in to E and the school aide/independence thing. In essence, we don't carry Elena any more. We try to get her to do things herself. She can fully dress and undress herself (occasionally she gets caught up on socks, and we put her braces and shoes on) but it takes a LONG TIME. So, we dress her on school mornings. On four occasions, I have carried her from her bedroom, down the steps, on the way to the breakfast table. On EVERY one of those occasions, we've been 10 minutes early for the bus. That means it takes Elena 10 minutes to get out of her bed, and slide on her rear down the steps. 10 minutes--and that's for ONE of the many things we expect her to do herself before school. As you can imagine, our school mornings are regimented--as to when E needs to get up, be downstairs, finish her breakfast, etc. or else we will not be ready when the bus arrives. Early summer, I timed Elena doing various activities, and decided it took Elena on average 6 times longer to do any gross motor activity (and some other activities--she's a slow eater, for example). 10 minutes is longer than that (to get down the steps)--but that's b/c she's just waking up and her motivation is zero to get out of bed. STILL. Until this improves (and I believe it will, at least some) it's a struggle to help E get more independent, and have time to enjoy things. Everyone says "it's a balance", or something like that. I KNOW. I get tired of hearing/thinking that.
E plays with the Tee Ball set Viv got for her birthday (pretty awesome! We should have bought this months ago!)
Some PT videos
Dancing to Don Quixote
Parent-Teacher Conference at school
I love E's teacher. He really tries to promote a sense of community in the classroom, and at the same time, allowing the children to be autonomous--at least, part of the time. This is difficult for Elena sometimes. Besides talking about what a great kid E is, e talked about how E relies on her aide, when both of us think she could do certain things herself. E's aide is FANTASTIC--but we wondered how far behind, if any, E would be if the aide just happened to be unavailable. This is an important test, since Elena will most likely not have an aide next year. I also learned (just recently) that we'll be redistricted to a different school next year. Ugh. Anyway, back to the meeting--E is very bright. At present, I have no worries about her academics. We have had some problems with teasing, and I brought it up. The teacher happens to be frustrated, with one child in particular, regarding teasing (not just directed to Elena, but she is an easy target). Not shortly after our meeting, there was a meeting with the principal, E, and the bullying student. That was a bit of a surprise to me--I didn't think they needed an official intervention. BUT, I applaud everyone for taking my concerns seriously. I didn't want to single Elena out. But, if it stops the teasing, or sets an example to show that behavior won't be tolerated, that's fine by me.
A Matter of Time
This sort of ties in to E and the school aide/independence thing. In essence, we don't carry Elena any more. We try to get her to do things herself. She can fully dress and undress herself (occasionally she gets caught up on socks, and we put her braces and shoes on) but it takes a LONG TIME. So, we dress her on school mornings. On four occasions, I have carried her from her bedroom, down the steps, on the way to the breakfast table. On EVERY one of those occasions, we've been 10 minutes early for the bus. That means it takes Elena 10 minutes to get out of her bed, and slide on her rear down the steps. 10 minutes--and that's for ONE of the many things we expect her to do herself before school. As you can imagine, our school mornings are regimented--as to when E needs to get up, be downstairs, finish her breakfast, etc. or else we will not be ready when the bus arrives. Early summer, I timed Elena doing various activities, and decided it took Elena on average 6 times longer to do any gross motor activity (and some other activities--she's a slow eater, for example). 10 minutes is longer than that (to get down the steps)--but that's b/c she's just waking up and her motivation is zero to get out of bed. STILL. Until this improves (and I believe it will, at least some) it's a struggle to help E get more independent, and have time to enjoy things. Everyone says "it's a balance", or something like that. I KNOW. I get tired of hearing/thinking that.
E plays with the Tee Ball set Viv got for her birthday (pretty awesome! We should have bought this months ago!)
Some PT videos
Dancing to Don Quixote
Camp Holiday Trails Family Day 2011
It's that time of year! We were excited to return to Camp Holiday Trails for (Special Needs) Family Day. CHT is a camp for kids--all kids, especially those with special health needs (and their families). The staff is WONDERFUL, inclusive, encouraging, energetic--it's a great environment. I love the fact that they are never phased by E's motor challenges, and they are always prepared to include her in every activity.
We came last year, but Vivian was too young to enjoy certain activities. This year, she did almost everything Elena did. As usual, E was not jealous, and cheered for her sister. I want Vivian to excel in what she does best, even if it means she does it better than her older sister--such as running, or playing tag, or hitting a baseball. It's tricky to encourage the actions of one child, when those actions accentuate the disability of another child. It's a learning process for all of us.
At camp, this isn't really an issue--everyone cheers for everyone, and it's fantastic. Nothing is competitive. Elena even had some friends there, including one from school, who rides her bus! (ADD PIC POST-PERMISSION)
After introduction and breakfast snack, our first destination was the rock wall. Our favorite counselor Stephen was there! E remembered him from last year the minute I asked her if she wanted to go to CHT Day.
Viv getting ready
Now, she's not so sure. She ended up going up 1/3 of the way, and then telling me she was done.
On belay? Belay ON! On rock? ROCK ON!
Elena trusts Stephen
Proud Climber
After climbing, we played lawn games. The grass isn't even, so that's a challenge--but E did great, and never fell! We played Train Wreck and a few other games. Viv wasn't too interested, so I had to keep her occupied for a lot of the lawn time. E was in very capable hands, and had great fun.
Painting Pumpkins after snack
After lunch, Viv went home for a nap (she was d-o-n-e!) and E and I went down to the fish pond. E's never been on a canoe. She was only a little nervous--mainly b/c she didn't like the fit of the life jacket. Don't we all remember how awful that felt around your neck when we were little?
Before our Canoe fishing excursion
The fish weren't biting.
After that, we went to the art studio for a little while, and then we said our goodbyes. The staff asked me about sending E to camp next summer. Jason and I have been wanting to send E to camp--we even paid for a spot at a different camp (2 years ago), only to arrive to see unmanageable terrain (and no refunds). If I had known about CHT then, I wouldn't have hesitated. We'll be back for sure!
We came last year, but Vivian was too young to enjoy certain activities. This year, she did almost everything Elena did. As usual, E was not jealous, and cheered for her sister. I want Vivian to excel in what she does best, even if it means she does it better than her older sister--such as running, or playing tag, or hitting a baseball. It's tricky to encourage the actions of one child, when those actions accentuate the disability of another child. It's a learning process for all of us.
At camp, this isn't really an issue--everyone cheers for everyone, and it's fantastic. Nothing is competitive. Elena even had some friends there, including one from school, who rides her bus! (ADD PIC POST-PERMISSION)
After introduction and breakfast snack, our first destination was the rock wall. Our favorite counselor Stephen was there! E remembered him from last year the minute I asked her if she wanted to go to CHT Day.
Viv getting ready
Now, she's not so sure. She ended up going up 1/3 of the way, and then telling me she was done.
On belay? Belay ON! On rock? ROCK ON!
Elena trusts Stephen
Proud Climber
After climbing, we played lawn games. The grass isn't even, so that's a challenge--but E did great, and never fell! We played Train Wreck and a few other games. Viv wasn't too interested, so I had to keep her occupied for a lot of the lawn time. E was in very capable hands, and had great fun.
Painting Pumpkins after snack
After lunch, Viv went home for a nap (she was d-o-n-e!) and E and I went down to the fish pond. E's never been on a canoe. She was only a little nervous--mainly b/c she didn't like the fit of the life jacket. Don't we all remember how awful that felt around your neck when we were little?
Before our Canoe fishing excursion
The fish weren't biting.
After that, we went to the art studio for a little while, and then we said our goodbyes. The staff asked me about sending E to camp next summer. Jason and I have been wanting to send E to camp--we even paid for a spot at a different camp (2 years ago), only to arrive to see unmanageable terrain (and no refunds). If I had known about CHT then, I wouldn't have hesitated. We'll be back for sure!
Tuesday, November 1, 2011
3rd Annual Holiday Card Exchange--Post #2
If you're new to this blog, I organize a card exchange every year for Elena (aiming for a late December delivery date)--she LOVES mail! More importantly, the exchange has been a great way to remind Elena that there are other kids out there like her--kids who wear braces, or wear glasses, use crutches (or other devices), who have siblings, friends, go to school, etc. etc. The best part about it was I didn't say anything when she first saw your picture. But I could just SEE Elena's face recognize she was not alone in her struggle with CP. That is invaluable. It's been fantastic.
If you are interested, please email me (cpmom2009 AT yahoo DOT com) with the following information:
Your name (and/or child's name), child's age, diagnosis, favorite thing(s), siblings, etc.
You address (in full, including country)
How long mail will take to arrive from Virginia, United States (if you know) (particularly important for overseas mail)
What holidays you celebrate, if any, near the end of this year
Primary language--If English is not your primary language, we'll try anyway!
I will not share your email information OR addresses with anyone without your permission. This exchange is between E and you.
If you've already emailed me with your intent to exchange, expect me to reply to you this week!
*NOTE: This is NOT a gift exchange. Sometimes people send little things, which is very nice--but never expected. We'd most appreciate a card, a message (or a drawing/doodle/coloring if writing is difficult), and a picture of your child. We typically send a card with a message (Elena writes some or all of it) and a picture.
If you are interested, please email me (cpmom2009 AT yahoo DOT com) with the following information:
Your name (and/or child's name), child's age, diagnosis, favorite thing(s), siblings, etc.
You address (in full, including country)
How long mail will take to arrive from Virginia, United States (if you know) (particularly important for overseas mail)
What holidays you celebrate, if any, near the end of this year
Primary language--If English is not your primary language, we'll try anyway!
I will not share your email information OR addresses with anyone without your permission. This exchange is between E and you.
If you've already emailed me with your intent to exchange, expect me to reply to you this week!
*NOTE: This is NOT a gift exchange. Sometimes people send little things, which is very nice--but never expected. We'd most appreciate a card, a message (or a drawing/doodle/coloring if writing is difficult), and a picture of your child. We typically send a card with a message (Elena writes some or all of it) and a picture.
Monday, October 31, 2011
Halloween 2011
Penguins on parade!
At the Children's Hospital Halloween party at KCRC
Getting ready to Trick-or-Treat around the neighborhood!
We live on a big hill, where most of the driveways are steep or have many steps. We encourage and expect Elena to do most of the walking--when she's too tired to go on, we head home. She did get carried--but only between three houses (out of twelve, I think). Some of the houses were scary--Elena was very brave, and never fell. She walked A LOT!
I saw a lot of kids running around and trick-or-treating together. My heart felt a little heavy...Elena doesn't keep up with her peers well in a situation like this. But what made my night? When those same groups of kids--running, laughing, chasing each other--noticed Elena, and cheered her name, and made a beeline right for her. They would give her a hug, and say how great it was to see her, and they would talk about costumes. Elena knew all of them--most of the kids were from her school, and I haven't met a lot of them. I was teary...I want to put that memory in a bottle and save it. What great kids.
We went home, and both E and Viv got to choose one piece of candy to eat. It was a late night, and a school night--but the sugar high was worth it.
At the Children's Hospital Halloween party at KCRC
Getting ready to Trick-or-Treat around the neighborhood!
We live on a big hill, where most of the driveways are steep or have many steps. We encourage and expect Elena to do most of the walking--when she's too tired to go on, we head home. She did get carried--but only between three houses (out of twelve, I think). Some of the houses were scary--Elena was very brave, and never fell. She walked A LOT!
I saw a lot of kids running around and trick-or-treating together. My heart felt a little heavy...Elena doesn't keep up with her peers well in a situation like this. But what made my night? When those same groups of kids--running, laughing, chasing each other--noticed Elena, and cheered her name, and made a beeline right for her. They would give her a hug, and say how great it was to see her, and they would talk about costumes. Elena knew all of them--most of the kids were from her school, and I haven't met a lot of them. I was teary...I want to put that memory in a bottle and save it. What great kids.
We went home, and both E and Viv got to choose one piece of candy to eat. It was a late night, and a school night--but the sugar high was worth it.
Sunday, October 30, 2011
Vivian's 3rrrrd Birthday
Happy Birthday to my little ball of Entropy, Vivian! We all love you SO SO MUCH--or, as you say, "love you whole bunch THREE TIMES". It is a joy, pleasure, and honor for us to have you in our lives. Three years--feels like just yesterday.
She's been into Pirates...so we had a Pirate Birthday Party! ARRGH!
We had friends, pizza, pirate ships, pirate hats, pirate...moustaches?
A Puzzle Treasure Hunt! The kids helped put together a map, leading to the ultimate treasure of Birthday Cupcakes!
The map
The kids paraded together as they went on the treasure hunt. Some things are different, obviously, when E moves in a group. She is guarded when it comes to how she interacts in a large, moving group. E tends to hang back--mainly b/c she doesn't want to get knocked over and hurt. This is good news, I think...she does succeed in what the group does, just more slowly. Both E and Viv were knocked over in a stampede once they found the X that marked the spot--BUT--they were up and running after that. Overall, the kids are very conscious of E's differences and are very accepting--but I guess some considerations are forgotten in the heat of the moment. Reality checks sometimes suck--but I can only hope that everyone had a good time at the party.
V on break after the hunt
After that, yard playtime
The Girls Love Soccer!
Viv got spooked by the neighbor's Halloween decorations
Viv is SO BIG! THREE!
E and uncle Andy
I love this picture
Thank you to all our family and friends for helping us enjoy ringing in Viv's third year!
She's been into Pirates...so we had a Pirate Birthday Party! ARRGH!
We had friends, pizza, pirate ships, pirate hats, pirate...moustaches?
A Puzzle Treasure Hunt! The kids helped put together a map, leading to the ultimate treasure of Birthday Cupcakes!
The map
The kids paraded together as they went on the treasure hunt. Some things are different, obviously, when E moves in a group. She is guarded when it comes to how she interacts in a large, moving group. E tends to hang back--mainly b/c she doesn't want to get knocked over and hurt. This is good news, I think...she does succeed in what the group does, just more slowly. Both E and Viv were knocked over in a stampede once they found the X that marked the spot--BUT--they were up and running after that. Overall, the kids are very conscious of E's differences and are very accepting--but I guess some considerations are forgotten in the heat of the moment. Reality checks sometimes suck--but I can only hope that everyone had a good time at the party.
V on break after the hunt
After that, yard playtime
The Girls Love Soccer!
Viv got spooked by the neighbor's Halloween decorations
Viv is SO BIG! THREE!
E and uncle Andy
I love this picture
Thank you to all our family and friends for helping us enjoy ringing in Viv's third year!
Monday, October 24, 2011
Pumpkin Patch 2011
Another GREAT year at Belvedere Plantation!
We go to this pumpkin patch every year. There are TONS of stuff for kids to do and see--this year, we didn't get to see it all. Vivian did not sleep well the night before (bad luck, I guess) and she was pretty cranky around naptime.
Elena LOVES this place. She walked A LOT this year, too! We brought our wagon (which needs to be replaced...any suggestions out there?) for the kids, and Vivian probably ended up spending more time in it than Elena--that was a HUGE surprise. E used her crutches most of the time, and her endurance was pretty good.
The first person we saw? The Pumpkin Princess! Vivian gasped "WOW! A REAL Princess!" so we had to get a picture.
Our first stop: The Kiddie Bouncer
Overall, this was a good experience. I did see a few sad expressions on Elena's face...kids on this bouncer move SO EASILY, even the very young ones, which did not escape her. But that was okay. We all had a good time, even if I was the only mom on that thing.
Barrel Train
Elena cheering Viv down the little slide tunnel (E did this too--she had to climb up a big haystack)
Always the Best Part: The Zipline
On our way
I see such improvement year-to-year in how E moves--this is really noticeable on the zipline. She did almost everything herself--up the steps (we were there with her b/c some steps did not have a handrail), launching herself on the zipline (she did need a push to get all the way across, but so did many other kids), and we were there when she let go of the zipline handle. She was SO proud of herself! We were too.
My first time letting E go alone
E launches, with Viv in the background (she needed help, which was a big deal to E)
There she goes again!
Viv loved feeding the goats
The girls are 3 and 2.5 Pumpkins Tall this year!
Sunflowers
Corn Maze (actually, it's sorrel)
This was tougher than we thought...it didn't help that Jason went in the exit to the maze. We (mostly Jason--gotta hand it to him, he did a great job) had to do all the hints backwards, and I asked if there were any overpasses (built-up bridges with steps, since we had the wagon) and one employee said "no, not if you do it right." Well, three employees helped us hoist over the wagon near the end. The girls thought it was very exciting.
Family Slide
Pumpkin Hunting
E had a hard time with the vines around the pumpkins again this year. It's SO easy to trip! Still we all found great pumpkins, and had a great time. Vivian was done after finding a pumpkin, which is evident in this last picture.
Next year, we are so totally going to do the tractor go-karts (like a bicycle, but E is a little small) and the ropeswings (we didn't go in the barn this year--we were so busy we forgot!)!
We go to this pumpkin patch every year. There are TONS of stuff for kids to do and see--this year, we didn't get to see it all. Vivian did not sleep well the night before (bad luck, I guess) and she was pretty cranky around naptime.
Elena LOVES this place. She walked A LOT this year, too! We brought our wagon (which needs to be replaced...any suggestions out there?) for the kids, and Vivian probably ended up spending more time in it than Elena--that was a HUGE surprise. E used her crutches most of the time, and her endurance was pretty good.
The first person we saw? The Pumpkin Princess! Vivian gasped "WOW! A REAL Princess!" so we had to get a picture.
Our first stop: The Kiddie Bouncer
Overall, this was a good experience. I did see a few sad expressions on Elena's face...kids on this bouncer move SO EASILY, even the very young ones, which did not escape her. But that was okay. We all had a good time, even if I was the only mom on that thing.
Barrel Train
Elena cheering Viv down the little slide tunnel (E did this too--she had to climb up a big haystack)
Always the Best Part: The Zipline
On our way
I see such improvement year-to-year in how E moves--this is really noticeable on the zipline. She did almost everything herself--up the steps (we were there with her b/c some steps did not have a handrail), launching herself on the zipline (she did need a push to get all the way across, but so did many other kids), and we were there when she let go of the zipline handle. She was SO proud of herself! We were too.
My first time letting E go alone
E launches, with Viv in the background (she needed help, which was a big deal to E)
There she goes again!
Viv loved feeding the goats
The girls are 3 and 2.5 Pumpkins Tall this year!
Sunflowers
Corn Maze (actually, it's sorrel)
This was tougher than we thought...it didn't help that Jason went in the exit to the maze. We (mostly Jason--gotta hand it to him, he did a great job) had to do all the hints backwards, and I asked if there were any overpasses (built-up bridges with steps, since we had the wagon) and one employee said "no, not if you do it right." Well, three employees helped us hoist over the wagon near the end. The girls thought it was very exciting.
Family Slide
Pumpkin Hunting
E had a hard time with the vines around the pumpkins again this year. It's SO easy to trip! Still we all found great pumpkins, and had a great time. Vivian was done after finding a pumpkin, which is evident in this last picture.
Next year, we are so totally going to do the tractor go-karts (like a bicycle, but E is a little small) and the ropeswings (we didn't go in the barn this year--we were so busy we forgot!)!
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