Theresa worked with E sans AFOs today. She did pretty well--better than I would have expected!
The idea behind this approach is to challenge her balance/movement by giving her support further and further away from her core, while allowing E to (hopefully) initiate or complete posturing or movement herself. The goal today was to try to get her to stand up tall, with minimal support (at the ankle). Since she can already keep a standing position (with her AFOs) (for a while, but not indefinitely), Theresa also wanted to see how E reacted to getting from the floor, to a squat, to a standing position. She can do this when wearing her shoes/AFOs (with poor form) occasionally.
E wanted to use a ride-on toy; she's done this before in bare feet, with some success. Still, she is taller now, and with the shoes on the movement is usually labored. This is the best I've seen her do it in shoes!
Overall I am very pleased with this. I'm not a total convert, but I definitely see the benefit in working without AFOs. We'll see how she progresses in a few weeks--with exercise and "sneaker time" at home. We're going to start with 10 minutes a day of work, and then maybe some more of just playtime without the AFOs on. I still want her wearing her AFOs and shoes the majority of the day.
Wednesday, September 2, 2009
Monday, August 31, 2009
PT recap: Shoes-oui. AFOs? NON!
I will be posting over this, with pics/video, but last week E went to PT (Jason took her, as I had to be at work early) and Theresa had E work with her shoes on, but without her braces. Jason said she did pretty well--but, in all honesty, I didn't believe him.
Theresa asked us to find shoes to fit her feet, not to fit her AFOs. We found a cheap sturdy pair at our favorite store. It was a real treat to see her in shoes without braces! And much to my surprise--off she went, a little more unstable than usual, and took 5 steps to the next bench in the store! WOW!
I have heard of kids "outgrowing" the need for their AFOs. I thought this *might* happen for E, after she stops growing, before her twenties or so--and then only for short amounts of time. And just b/c she took some steps without her AFOs on doesn't mean it's happening soon--she can't take more than 3 steps in bare feet--but still, I was AMAZED that she moved as well as she did wearing only sneakers!
Theresa asked us to find shoes to fit her feet, not to fit her AFOs. We found a cheap sturdy pair at our favorite store. It was a real treat to see her in shoes without braces! And much to my surprise--off she went, a little more unstable than usual, and took 5 steps to the next bench in the store! WOW!
I have heard of kids "outgrowing" the need for their AFOs. I thought this *might* happen for E, after she stops growing, before her twenties or so--and then only for short amounts of time. And just b/c she took some steps without her AFOs on doesn't mean it's happening soon--she can't take more than 3 steps in bare feet--but still, I was AMAZED that she moved as well as she did wearing only sneakers!
First Day of 4yr Pre-K
Well...I have to admit, I was pretty apprehensive about E moving to a new school this year. Last year she was in the Bright Stars program at another school--it was AMAZING--I cannot say enough fantastic things about the program and the teachers there!
Not all elementary schools offer a pre-K program, which was true for our home district until this fall. This is the first time Stony Point is offering a pre-K program. I was nervous, b/c that means this year the school will be "working out the kinks"--and E was coming from a school that already seems to know what really works. Still, I wanted to look at the positives--E will be going to this school for several years to come, and it would be to her advantage to know her way around and to meet some friends that she'll see from year to year.
Prior to leaving for our beach vacation, we met privately with the principal, her teacher, and the special ed teacher next door (Elena is not in the SpEd class, but she will most likely be using their bathroom most of the time). They were all very nice. I shared some concerns regarding mobility around the school, naptime (she does not do well in a cot), toileting, and seating. They were very receptive. She uses a posterior walker for long distances (from the bus to the classroom, from the classroom to the playground), her crutches for shorter distances (to the bathroom, as needed), and encouraged to walk independently (in the classroom, as desired).
Between myself, the school administration, and the Special Education Bus Driver, we worked out a transportation schedule. Elena has to ride the SpEd bus--regardless of disability--due to her weight, as she must be in a carseat. I imagine she will ride the SpEd bus until she can 1) get on/off the bus independently (those steps are huge!) and 2) can carry her backpack. Jason and I had been talking up the bus ride for a couple of days, and E seemed very excited about school.
Waiting for the bus
NOBODY CRIED! We have received great reports from E this week, including rest time (last year she screamed so horribly at rest time she had to change to half-days). So far, I only have a few concerns, and they are minor, and mostly related to outside play (they are waiting for equipment to arrive, so there isn't much for her to do outside independently) (our in-school PT took care of my concerns in the classroom). I'm trying to be patient and let everyone learn how to best include E in all activities before I become an overbearing parent. :)
Overall we are happy--E likes school, she tells us (at least a little) about her day, and we get good reports.
Not all elementary schools offer a pre-K program, which was true for our home district until this fall. This is the first time Stony Point is offering a pre-K program. I was nervous, b/c that means this year the school will be "working out the kinks"--and E was coming from a school that already seems to know what really works. Still, I wanted to look at the positives--E will be going to this school for several years to come, and it would be to her advantage to know her way around and to meet some friends that she'll see from year to year.
Prior to leaving for our beach vacation, we met privately with the principal, her teacher, and the special ed teacher next door (Elena is not in the SpEd class, but she will most likely be using their bathroom most of the time). They were all very nice. I shared some concerns regarding mobility around the school, naptime (she does not do well in a cot), toileting, and seating. They were very receptive. She uses a posterior walker for long distances (from the bus to the classroom, from the classroom to the playground), her crutches for shorter distances (to the bathroom, as needed), and encouraged to walk independently (in the classroom, as desired).
Between myself, the school administration, and the Special Education Bus Driver, we worked out a transportation schedule. Elena has to ride the SpEd bus--regardless of disability--due to her weight, as she must be in a carseat. I imagine she will ride the SpEd bus until she can 1) get on/off the bus independently (those steps are huge!) and 2) can carry her backpack. Jason and I had been talking up the bus ride for a couple of days, and E seemed very excited about school.
Waiting for the bus
NOBODY CRIED! We have received great reports from E this week, including rest time (last year she screamed so horribly at rest time she had to change to half-days). So far, I only have a few concerns, and they are minor, and mostly related to outside play (they are waiting for equipment to arrive, so there isn't much for her to do outside independently) (our in-school PT took care of my concerns in the classroom). I'm trying to be patient and let everyone learn how to best include E in all activities before I become an overbearing parent. :)
Overall we are happy--E likes school, she tells us (at least a little) about her day, and we get good reports.
Thursday, August 27, 2009
Myrtle Beach 2009
We went to the beach for vacation last week (big thanks to Grandma and Grandpa!). I was really looking forward to the vacation--I needed days off from work, from therapy, from scheduling...and Elena did too. I was a little worried about the beach--after all, that would mean 1) a lot less time in her AFOs and 2) a lot more time being carried (see 1). I kept telling myself-"Elena needs a VACATION--she's earned it" and decided that time off her grueling schedule would not hamper her progress.
The car ride was long...normally it would take us 6.5 hours to get there, but it took us nearly 10. E needed breaks from her carseat, bathroom breaks, and little sister Vivian needed a high chair to eat, so the trip was slow going. Overall both children were angels on the long car ride. We arrived late, and went to the beach the next morning. E was super excited.
We spent a lot of time in the sand. Posture-wise, she spent a lot of time in the w-sit (she can move in and out of it, as well as taylor-sitting). That being said, she also spent a lot of her time on her knees in a high-kneel, so that was good. We did do some drills where we would "bulldoze sand" with our feet, or with our toes, or try to dig in the sand with our toes, so that was a nice drill. We also just had fun, too.
E loved the waves, but it wasn't very easy for the operator. E is longer now than her first trip to the beach; due to her weak core and tight legs, it's like holding a very long, heavy pendulum. She can help by holding on to your neck, and she can even wrap her legs around your waist (a little), but when in waves she is so excited she basically just keeps her toes off any surface to be "swept up" in the feeling of the wave. Great for a kid; painful for the operator's back. I imagine that doesn't change much as she gets older. I spent a lot of our water time reminding E to put her feet down. The pic below is an example of her leg tone when really excited--it's not always this bad. She can put her feet down, but she forgets after a few seconds. I do not think it is a sensory thing about having cold, moving sand/waves on her feet. I think it's just from being excited.
We also did some non-beach activities--fed the ducks, fed the fish and turtles in a pond, rode golf carts, went to a mall, and played mini-golf. I thought mini-golf would be a challenge, but a fun one. After all, she loves playing "golf" at PT (hitting small balls around with a noodle, she's pretty good at it). Well, I was wrong. WRONG WRONG WRONG. We took E in the middle of the day, to avoid the crowd--it was 95 degrees and no shade (oops). She got very frustrated when she could not stand up well when grabbing the club, and then even more upset when she had trouble hitting the ball. We played a 4 holes, the one in the shade--she actually liked that one, but was ready to be done.
There were two huge surprises during the beach vacation. One was at the shopping mall, I took E to the bathroom in the family bathroom and they had a little mini toilet and mini sink. She wanted to do the potty by herself. I helped getting her pants down, but she got up on the potty herself, wiped herself, got down herself, pulled up her clothes (mostly) herself, and washed hands (mostly) herself. WOW. I was AMAZED. If only small toilets were a standard fixture in homes and schools!!
The second surprise was when E was moving around the beach house without her shoes/braces on. Her feet--the right one, in particular, didn't look that bad. She could stand with (mostly) flat feet almost anytime when asked, and spent a lot of time flat without being prompted. She did try to stand without holding on to the furniture, she can reliably do that for a couple of seconds. She also tried to walk without her shoes on, and she could take three steps and fall.
The third surprise was playing our Wii game console. I have heard from other parents that they love the Wii fit and other games--but their kids are older. We played Wii Resort Frisbee. Elena had a great time taking turns "throwing" a frisbee. She didn't know what she was doing (and sometimes we made it work for her) but she was receptive to moving her body to play a computer game, which I think will be a great tool later.
When we got home, bedtime was a bit of an adjustment but our regular program of wearing her AFOs, using her crutches, trying not to be carried as much, and doing exercises/treadmill went back to normal without a hitch. Whew!
The car ride was long...normally it would take us 6.5 hours to get there, but it took us nearly 10. E needed breaks from her carseat, bathroom breaks, and little sister Vivian needed a high chair to eat, so the trip was slow going. Overall both children were angels on the long car ride. We arrived late, and went to the beach the next morning. E was super excited.
We spent a lot of time in the sand. Posture-wise, she spent a lot of time in the w-sit (she can move in and out of it, as well as taylor-sitting). That being said, she also spent a lot of her time on her knees in a high-kneel, so that was good. We did do some drills where we would "bulldoze sand" with our feet, or with our toes, or try to dig in the sand with our toes, so that was a nice drill. We also just had fun, too.
E loved the waves, but it wasn't very easy for the operator. E is longer now than her first trip to the beach; due to her weak core and tight legs, it's like holding a very long, heavy pendulum. She can help by holding on to your neck, and she can even wrap her legs around your waist (a little), but when in waves she is so excited she basically just keeps her toes off any surface to be "swept up" in the feeling of the wave. Great for a kid; painful for the operator's back. I imagine that doesn't change much as she gets older. I spent a lot of our water time reminding E to put her feet down. The pic below is an example of her leg tone when really excited--it's not always this bad. She can put her feet down, but she forgets after a few seconds. I do not think it is a sensory thing about having cold, moving sand/waves on her feet. I think it's just from being excited.
We also did some non-beach activities--fed the ducks, fed the fish and turtles in a pond, rode golf carts, went to a mall, and played mini-golf. I thought mini-golf would be a challenge, but a fun one. After all, she loves playing "golf" at PT (hitting small balls around with a noodle, she's pretty good at it). Well, I was wrong. WRONG WRONG WRONG. We took E in the middle of the day, to avoid the crowd--it was 95 degrees and no shade (oops). She got very frustrated when she could not stand up well when grabbing the club, and then even more upset when she had trouble hitting the ball. We played a 4 holes, the one in the shade--she actually liked that one, but was ready to be done.
There were two huge surprises during the beach vacation. One was at the shopping mall, I took E to the bathroom in the family bathroom and they had a little mini toilet and mini sink. She wanted to do the potty by herself. I helped getting her pants down, but she got up on the potty herself, wiped herself, got down herself, pulled up her clothes (mostly) herself, and washed hands (mostly) herself. WOW. I was AMAZED. If only small toilets were a standard fixture in homes and schools!!
The second surprise was when E was moving around the beach house without her shoes/braces on. Her feet--the right one, in particular, didn't look that bad. She could stand with (mostly) flat feet almost anytime when asked, and spent a lot of time flat without being prompted. She did try to stand without holding on to the furniture, she can reliably do that for a couple of seconds. She also tried to walk without her shoes on, and she could take three steps and fall.
The third surprise was playing our Wii game console. I have heard from other parents that they love the Wii fit and other games--but their kids are older. We played Wii Resort Frisbee. Elena had a great time taking turns "throwing" a frisbee. She didn't know what she was doing (and sometimes we made it work for her) but she was receptive to moving her body to play a computer game, which I think will be a great tool later.
When we got home, bedtime was a bit of an adjustment but our regular program of wearing her AFOs, using her crutches, trying not to be carried as much, and doing exercises/treadmill went back to normal without a hitch. Whew!
Sunday, August 23, 2009
At the pool
We met E's Bright Stars teachers one last time before the start at school. It was a pool play date. I begrudgingly agreed to try a different style of life vest (this one belongs to our main PT). Turns out, this one was a GREAT success! It gave E more confidence in the water. She still has trouble righting herself in the water, but I let go of her for 6-10 seconds and she could stay more-or-less straight up in the water.
One thing I have been working on with E when we "swim" (and at yoga, actually) is E's ability to really stretch out her arms. She can do it when reaching for a toy or coloring, but when her hands are above her head (or when she is in water) she really "shortens up". She also has a hard time relaxing her shoulders, but I don't know how to make her aware of that. Anyway, with the life jacket on and the cue "reach for my belly button", she not only reached her arms out all the way, but she could kick while doing so, which is a pretty big deal.
One thing I have been working on with E when we "swim" (and at yoga, actually) is E's ability to really stretch out her arms. She can do it when reaching for a toy or coloring, but when her hands are above her head (or when she is in water) she really "shortens up". She also has a hard time relaxing her shoulders, but I don't know how to make her aware of that. Anyway, with the life jacket on and the cue "reach for my belly button", she not only reached her arms out all the way, but she could kick while doing so, which is a pretty big deal.
PT recap: Musical Chairs, Move to Independent Toileting
One of the reasons I've been pushing for E to be more independent with maneuvering her sitting position is for her to be able to use a slide. Another is to have her be able to get in/out of a chair during mealtimes at school. And another--the Big One--is for her to be able to use the toilet independently. The fact that there is a hole in the middle of the toilet seat changes EVERYTHING. I know some of you parents of kids like mine know EXACTLY WHAT I'M TALKING ABOUT!
Anyway--Theresa thought of introducing E to Musical Chairs. It was a GREAT idea! Notice E's positioning when she almost has her feet on the ground when getting off the chair--I think doing bridges every night during our stretching regimen has really helped this motion.
We walked to the bathroom at the therapy center to try to see how E gets on the potty. This one has sidebars; this is the first time she's tried getting on a regular-size toilet seat (and the first time she's had one with sidebars).
We've actually been working on this (when we can--usually we don't have lots of time) since this session. Most of our efforts are for her to try to reach to the toilet paper, tear off some, and wipe herself (there is not much success with any of this yet), then for her to get down from the potty herself (most of the success is here, depending on her confidence) and then pulling her clothes back on (needs heavy assistance for balance at this point, but she gets the idea). The good news is the fundamentals are there, but the toilet size is the big problem. In some shopping malls, they have a "family bathroom"--where there is a miniature potty and sink. She can actually do ALL THAT HERSELF (two times, in two different malls)--it takes a lot of time and contact guarding, but she was SO PROUD of herself (and I was too!)!
Anyway--Theresa thought of introducing E to Musical Chairs. It was a GREAT idea! Notice E's positioning when she almost has her feet on the ground when getting off the chair--I think doing bridges every night during our stretching regimen has really helped this motion.
We walked to the bathroom at the therapy center to try to see how E gets on the potty. This one has sidebars; this is the first time she's tried getting on a regular-size toilet seat (and the first time she's had one with sidebars).
We've actually been working on this (when we can--usually we don't have lots of time) since this session. Most of our efforts are for her to try to reach to the toilet paper, tear off some, and wipe herself (there is not much success with any of this yet), then for her to get down from the potty herself (most of the success is here, depending on her confidence) and then pulling her clothes back on (needs heavy assistance for balance at this point, but she gets the idea). The good news is the fundamentals are there, but the toilet size is the big problem. In some shopping malls, they have a "family bathroom"--where there is a miniature potty and sink. She can actually do ALL THAT HERSELF (two times, in two different malls)--it takes a lot of time and contact guarding, but she was SO PROUD of herself (and I was too!)!
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