Just a quick post: Elena has had three playdates in the past week! That's a RECORD!
Playing with friends has always been awkward...people have come to our door asking Elena to play ONE TIME (but what a great one time!!) in her life (so far). Since last summer, we've been out more often, as E's endurance and outdoor balance have improved. Slowly, play invites have been coming in...this week's been busier than usual.
It's LOVELY. It's WONDERFUL. Elena is in HEAVEN. We're all so proud of her, and happy for her and her friends.
You know, just doing normal kid stuff. WEEEEE!
Tuesday, January 24, 2012
Saturday, January 21, 2012
West City Soccer: Family Night
I asked several times previously about soccer programs for kids--Elena did one several years ago with the YMCA. She did well, but she was just starting to walk on grass with her crutches. She was very slow, and managed to get to the next activity just as everyone was finishing. E was proud of herself, though. We opted to try to work on her outside skills before trying again.
I called the local soccer league and asked if they would be open to the idea of E on the soccer pitch. They were EXTREMELY hesitant, but did not say no. Even though they didn't say it, I felt like it would have been a disaster, one that I'd have to fight for E every step of the way. I just wasn't ready for that. I rarely shy away from peer activities--but groups sports isn't something in which I can engineer success for Elena. I feel like I want Elena to be successful in gross motor activities so she can want to do more of them. A scrimmage between lots of semi-competitive kids, who run fast, kick hard, and tussle around doesn't seem like a wise place for a pint-sized kid who gets tangled in her crutches when trying to walk ALONE.
Some friends of ours told us about a family soccer program--their kids LOVED IT. I had talked to Coach West before--but the timing was terrible--outside, a school night, and would end after Elena's bedtime. The timing was all wrong.
This season, the timing is RIGHT. It's a Friday night, it's indoors, and the gym is literally a five minute drive from our house. I was still worried that it would be a bad fit--but it was the best fit we were going to have. I had played soccer with West (against his team, anyway) and he has seen Elena before. We've talked on the phone several times, months apart, regarding whether or not it was a good idea for E. West ALWAYS said it was. I wasn't sure if he would resonate with Elena--or kids--b/c on the field, he could be pretty intense.
We've been three (four?) weeks now.
WEST CITY SOCCER ROCKS!
Family night is just that--the entire family, including younger siblings and parents, all do drills together. It's not competitive; it's a workout; it's cooperative. The other kids ARE WONDERFUL to Elena, which is always a relief for me. There are about 4 other kids her age, and most of them have younger siblings and parent(s) that attend. Elena might be the only one who uses crutches, but she's not the only one who falls, or who has difficulty dribbling a ball or trying to do a drill. The other families are wonderfully inclusive, their children are curious and warm to us, and everyone enjoys themselves. The exercises ARE FANTASTIC--and are things I'd never have considered.
Elena's just another kid out there. Seriously, the first night, I almost cried when one of the other 5-7 year-olds picked E as his partner. They had to follow each other with a ball--something neither of them was particularly good at, but they BOTH challenged EACH OTHER, which was something I didn't think would happen.
West and Lily's drills are confidence building and challenging. They are fantastic for kids, for novices, and for experienced players too. I will make a list of them for another post.
Tonight, at the end of the session, we had our first scrimmage. My worst fear regarding E and soccer skills was tested.
First, the adults played--the rule was NO TALKING and no kicking the ball in the air. Then West picked some kids (the older ones, of which E is one) to come out and play with the adults. ALL the kids got touches--INCLUDING E (I WAS SO EXCITED!)--and no one fell. One of the last plays, E stopped a pass and then it got stuck between her legs. The kids all went for it--but were gentle not to push her, or kick her crutches. They eventually kicked the ball out from her--but NO ONE got hurt, and EVERYONE had a BLAST. It was the antithesis of everything I thought E's first scrimmage would be like. It was GREAT!
Thanks Coach West and Coach Lily--we'll see you next week!
I called the local soccer league and asked if they would be open to the idea of E on the soccer pitch. They were EXTREMELY hesitant, but did not say no. Even though they didn't say it, I felt like it would have been a disaster, one that I'd have to fight for E every step of the way. I just wasn't ready for that. I rarely shy away from peer activities--but groups sports isn't something in which I can engineer success for Elena. I feel like I want Elena to be successful in gross motor activities so she can want to do more of them. A scrimmage between lots of semi-competitive kids, who run fast, kick hard, and tussle around doesn't seem like a wise place for a pint-sized kid who gets tangled in her crutches when trying to walk ALONE.
Some friends of ours told us about a family soccer program--their kids LOVED IT. I had talked to Coach West before--but the timing was terrible--outside, a school night, and would end after Elena's bedtime. The timing was all wrong.
This season, the timing is RIGHT. It's a Friday night, it's indoors, and the gym is literally a five minute drive from our house. I was still worried that it would be a bad fit--but it was the best fit we were going to have. I had played soccer with West (against his team, anyway) and he has seen Elena before. We've talked on the phone several times, months apart, regarding whether or not it was a good idea for E. West ALWAYS said it was. I wasn't sure if he would resonate with Elena--or kids--b/c on the field, he could be pretty intense.
We've been three (four?) weeks now.
WEST CITY SOCCER ROCKS!
Family night is just that--the entire family, including younger siblings and parents, all do drills together. It's not competitive; it's a workout; it's cooperative. The other kids ARE WONDERFUL to Elena, which is always a relief for me. There are about 4 other kids her age, and most of them have younger siblings and parent(s) that attend. Elena might be the only one who uses crutches, but she's not the only one who falls, or who has difficulty dribbling a ball or trying to do a drill. The other families are wonderfully inclusive, their children are curious and warm to us, and everyone enjoys themselves. The exercises ARE FANTASTIC--and are things I'd never have considered.
Elena's just another kid out there. Seriously, the first night, I almost cried when one of the other 5-7 year-olds picked E as his partner. They had to follow each other with a ball--something neither of them was particularly good at, but they BOTH challenged EACH OTHER, which was something I didn't think would happen.
West and Lily's drills are confidence building and challenging. They are fantastic for kids, for novices, and for experienced players too. I will make a list of them for another post.
Tonight, at the end of the session, we had our first scrimmage. My worst fear regarding E and soccer skills was tested.
First, the adults played--the rule was NO TALKING and no kicking the ball in the air. Then West picked some kids (the older ones, of which E is one) to come out and play with the adults. ALL the kids got touches--INCLUDING E (I WAS SO EXCITED!)--and no one fell. One of the last plays, E stopped a pass and then it got stuck between her legs. The kids all went for it--but were gentle not to push her, or kick her crutches. They eventually kicked the ball out from her--but NO ONE got hurt, and EVERYONE had a BLAST. It was the antithesis of everything I thought E's first scrimmage would be like. It was GREAT!
Thanks Coach West and Coach Lily--we'll see you next week!
Sunday, January 15, 2012
Baby, it's Cold Outside
Well, it looks like winter is catching up with us!
Like lots of kids with spasticity issues, it's harder for Elena to move in the cold. Her body gets stiffer, and if she layers up in bulky clothes, it's harder for her to move too. Elena can wear gloves, but she can't get them on correctly by herself--not yet, anyway.
We had some convertible mittens--fingerless gloves, with a "mitten" top that can go over them--but Elena needed the mitten off to zip up her coat, and by the time her hands were in her crutches, she couldn't get the mitten top on. So, she'd just wear them with her fingers bare, getting cold the whole time. I ended up buying some knit gloves instead, as I figured her hands would be warmer that way. Still, not the best solution.
The issue is, most kids are fine in those regular gloves--if their hands get cold, they can pop them in their pockets to warm them up. Not Elena--she needs her hands on her crutches.
It's Mother of Invention time!
Introducing: Crutch Mittens 1.0
I don't really have a pattern; I ended up "winging it" and Grandma helped with her sewing machine. Basically, I used a 9" salad plate as a pattern for the mitten, cutting some off the top to make it even for the cuff. We left a 1.5" (ish) hole for the crutch handle to go through. The cuff is made of a little thicker fleece than the pocket, so it will "stand up" better. There is a tie to secure it to the crutch.
Here's the mitten as it goes on the handle:
And then the tie:
Voila! Happy Warm Hands!
My original plan was to have the mittens hang from the crutches (off the handles) when E was indoors. That won't work, as they are too bulky if they are off the handles. So, when E is indoors, the Crutch Mittens have to be removed and put with her coat. This means that currently Elena will need assistance getting the mittens on and off the crutches, b/c she can't tie them on the side (the ties are a little short--and even if they weren't, I don't think she can tie them right now. I might have to switch to velcro). So, this version isn't perfect--but E LOVES the fact that her hands are warm!
Like lots of kids with spasticity issues, it's harder for Elena to move in the cold. Her body gets stiffer, and if she layers up in bulky clothes, it's harder for her to move too. Elena can wear gloves, but she can't get them on correctly by herself--not yet, anyway.
We had some convertible mittens--fingerless gloves, with a "mitten" top that can go over them--but Elena needed the mitten off to zip up her coat, and by the time her hands were in her crutches, she couldn't get the mitten top on. So, she'd just wear them with her fingers bare, getting cold the whole time. I ended up buying some knit gloves instead, as I figured her hands would be warmer that way. Still, not the best solution.
The issue is, most kids are fine in those regular gloves--if their hands get cold, they can pop them in their pockets to warm them up. Not Elena--she needs her hands on her crutches.
It's Mother of Invention time!
Introducing: Crutch Mittens 1.0
I don't really have a pattern; I ended up "winging it" and Grandma helped with her sewing machine. Basically, I used a 9" salad plate as a pattern for the mitten, cutting some off the top to make it even for the cuff. We left a 1.5" (ish) hole for the crutch handle to go through. The cuff is made of a little thicker fleece than the pocket, so it will "stand up" better. There is a tie to secure it to the crutch.
Here's the mitten as it goes on the handle:
And then the tie:
Voila! Happy Warm Hands!
My original plan was to have the mittens hang from the crutches (off the handles) when E was indoors. That won't work, as they are too bulky if they are off the handles. So, when E is indoors, the Crutch Mittens have to be removed and put with her coat. This means that currently Elena will need assistance getting the mittens on and off the crutches, b/c she can't tie them on the side (the ties are a little short--and even if they weren't, I don't think she can tie them right now. I might have to switch to velcro). So, this version isn't perfect--but E LOVES the fact that her hands are warm!
Tuesday, January 10, 2012
An Eye Update
We just had our yearly ("big") checkup with Dr. P, Elena's pediatric opthamologist. WE LOVE DR. P. I cannot stress that enough--he is the epitome of a gracious, respectful, patient, knowledgeable, conscientious--all around EXCELLENT doctor.
For those of you who don't know (or started following us late), E had congenital strabismus; her first eye surgery was around 8 months (I forgot exactly) of age, with a doctor in-town. After her follow-up, I switched doctors to Dr. P. She has had two subsequent surgeries (her official diagnosis is (infant) esotropia), with the hope that she would use both eyes together, and hopefully, with depth perception.
Today is a great day!
After a 3-hr appointment, it's official: Elena has excellent vision (with corrective lenses). In the past, the prognosis was that Elena had two healthy eyes that may or may not be able to work together. Today, the word is that Elena not only has two healthy eyes (she does have a corrective prescription for astigmatism), but these two eyes DO work together, AND she has depth perception.
The biggest issue is her eyes do NOT work together all the time; when she is sick, or tired, it's obvious that her eyes drift. One more than the other (I forgot which), but they both do it. I can't imagine what that must be like...just tired? or headache-y? When she is wearing her glasses, and she is alert and healthy, her eyes look fine and move together.
All I care about, at this moment, is that 1) she is healthy and 2) reading is not uncomfortable for her. Since she read her book the whole way up to Dr. P's office, I assume that is not an issue.
Driving 3 hours out of your way (each way), spending the night away from home, pretty much sucks. Seeing a doctor that "gets" your kid? WORTH EVERY MINUTE.
For those of you who don't know (or started following us late), E had congenital strabismus; her first eye surgery was around 8 months (I forgot exactly) of age, with a doctor in-town. After her follow-up, I switched doctors to Dr. P. She has had two subsequent surgeries (her official diagnosis is (infant) esotropia), with the hope that she would use both eyes together, and hopefully, with depth perception.
Today is a great day!
After a 3-hr appointment, it's official: Elena has excellent vision (with corrective lenses). In the past, the prognosis was that Elena had two healthy eyes that may or may not be able to work together. Today, the word is that Elena not only has two healthy eyes (she does have a corrective prescription for astigmatism), but these two eyes DO work together, AND she has depth perception.
The biggest issue is her eyes do NOT work together all the time; when she is sick, or tired, it's obvious that her eyes drift. One more than the other (I forgot which), but they both do it. I can't imagine what that must be like...just tired? or headache-y? When she is wearing her glasses, and she is alert and healthy, her eyes look fine and move together.
All I care about, at this moment, is that 1) she is healthy and 2) reading is not uncomfortable for her. Since she read her book the whole way up to Dr. P's office, I assume that is not an issue.
Driving 3 hours out of your way (each way), spending the night away from home, pretty much sucks. Seeing a doctor that "gets" your kid? WORTH EVERY MINUTE.
Wednesday, January 4, 2012
Year 2012 Goals
Happy New Year!
It's time to think of some new goals. I wanted to be more eloquent, but it's late.
In no particular order, for Elena:
1. Carry a regular umbrella, with or without crutches. Elena has an umbrella hat, that she uses when she wants to walk in rain with crutches. She loves it--but it's not super convenient to get it on her head.
2. Elena will go up and down steps (that have a banister or handrail) with only one hand holding it, one hand free, without supervision, regularly alternating right and left feet, at a good pace. When she wants to go up/down steps quickly, she scoots down on her rear and crawls up. She and I have talked about this a lot. When she gets better at standing up to go up/down steps regularly, she can get her ears pierced!
3. Elena will take a group swim class and/or swim without floatation devices in the neighborhood pool.
4. Elena will get in the bath, wash herself and her hair, get out of the bathtub, dry herself off with a towel, and put on her own pajamas. She can do most of these things in part, but has never done them sequentially on her own.
5. Elena will play mini golf, with one or both hands, either with or without crutches.
6. Elena will make her own breakfast. We'll have to put something she can reach.
7. Elena will dress herself in time for school.
8. Elena will spend the night at a friend's house with NO meltdown.
9. Elena will point and flex her feet on demand.
10. Elena will do some of her own stretches herself before bed, instead of us moving her body to do all her stretches.
Crazy goals for E?
*1. E will twirl.
*2. E will walk a dog, without falling while holding the leash.
*3. E will bike up a hill.
*4. E will ride a wave in on a float.
*5. E will catch and throw a frisbee.
And goals for me:
1. Find a way to relax. I'm not sure how to do this.
2. Stay up after the kids go to bed. After such challenging days (especially when Elena is melting down, or not going to bed well) , I've literally been tapped out. I hope to make this time "me time", at least most nights.
3. Get E on the bike more often. Myself, too--I have mine on a trainer in the garage ready to go.
4. Do some rides/runs/multisports races around town. Some of them our whole family can do together.
5. Find an artistic outlet. I do science for a living, I juggle the family life, I'm a chronic multitasker. I need a right-brained activity that helps me unwind.
It's time to think of some new goals. I wanted to be more eloquent, but it's late.
In no particular order, for Elena:
1. Carry a regular umbrella, with or without crutches. Elena has an umbrella hat, that she uses when she wants to walk in rain with crutches. She loves it--but it's not super convenient to get it on her head.
2. Elena will go up and down steps (that have a banister or handrail) with only one hand holding it, one hand free, without supervision, regularly alternating right and left feet, at a good pace. When she wants to go up/down steps quickly, she scoots down on her rear and crawls up. She and I have talked about this a lot. When she gets better at standing up to go up/down steps regularly, she can get her ears pierced!
3. Elena will take a group swim class and/or swim without floatation devices in the neighborhood pool.
4. Elena will get in the bath, wash herself and her hair, get out of the bathtub, dry herself off with a towel, and put on her own pajamas. She can do most of these things in part, but has never done them sequentially on her own.
5. Elena will play mini golf, with one or both hands, either with or without crutches.
6. Elena will make her own breakfast. We'll have to put something she can reach.
7. Elena will dress herself in time for school.
8. Elena will spend the night at a friend's house with NO meltdown.
9. Elena will point and flex her feet on demand.
10. Elena will do some of her own stretches herself before bed, instead of us moving her body to do all her stretches.
Crazy goals for E?
*1. E will twirl.
*2. E will walk a dog, without falling while holding the leash.
*3. E will bike up a hill.
*4. E will ride a wave in on a float.
*5. E will catch and throw a frisbee.
And goals for me:
1. Find a way to relax. I'm not sure how to do this.
2. Stay up after the kids go to bed. After such challenging days (especially when Elena is melting down, or not going to bed well) , I've literally been tapped out. I hope to make this time "me time", at least most nights.
3. Get E on the bike more often. Myself, too--I have mine on a trainer in the garage ready to go.
4. Do some rides/runs/multisports races around town. Some of them our whole family can do together.
5. Find an artistic outlet. I do science for a living, I juggle the family life, I'm a chronic multitasker. I need a right-brained activity that helps me unwind.
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