You may remember my post about The Faun; my reaction to watching a theater performance, starring Gregg Mozgala.
Since then, Gregg and I have exchanged some messages regarding this blog, Elena, dancing, and his performance(s).
They want to make a documentary about this story. They are soliciting donations to make this happen.
If theater isn't your thing, I understand (it's not mine, either). If dancing isn't your thing, I get it. But if you are the parent of a child with a disability, this story is amazing. Ballet changed Gregg's life.
What if Gregg was your son? He reminds me so much of Elena. If his story, the Faun performance, or this documentary could help one other person, or help educators envision another outlet for our kids--wouldn't that be fantastic?
I will certainly highlight it here if the film gets the green light. And if it does, please check it out.
Are there other films/movies that I should know about? Do you have some that really resonate with you, especially if you or someone in your life is affected by CP?
Monday, September 26, 2011
Thoughts on First Grade
I didn't have much apprehension about First Grade. Actually, I was looking forward to it-and Elena was too.
E's teacher this year is new to the school. He is very approachable, and seems to enjoy E in the classroom. He encourages autonomy and community within the classroom. One thing that surprised me was Mr. M's question regarding her in-school therapy time. Apparently, the PT was going to pull her out of recess. Mr. M. thought E might really like recess, and figured maybe I should weigh-in as to what E would miss while she was at PT.
I couldn't believe it.
I never thought of that before. E's been in public school for 4 years now, and this is the first time anyone asked me that.
Now, I'm not mad at the PT or teachers that E's had previously--I was so grateful that she was getting services in school, I never thought about anything else, and no one (including Elena) ever made me think that she was missing something during her therapy pull-out time.
But, things are different now. She's making friends, she's playing with others, her disability is front-and-center, and her playmates seem to be okay with it. She integrates herself in recess and P.E., and loves being active. I asked E's team (teachers, therapists, us parents, and E) what we felt was a good fit for school PT--and the decision was made that she'd miss a 1/3 of literacy time. That was a bit of a hard sell for me--Elena can read, but she still needs a lot of help. But we all agreed that she should not be pulled out of something physical to do physical therapy.
Right now, Elena still has her aide from last year, A. A still helps Elena with some things--pushing in/out her heavy tripp-trapp chair, carrying her lunch or tray in the lunchroom, occasional help in the bathroom, help on the playground and in P.E. She has an adaptive P.E. student help her once a week (they are great!). Elena still needs help on/off the SpEd bus. She gets the option to ride in her push-chair (wheelchair with small wheels) if she is very tired over a longer distance (after recess, for example).
We worked very hard over the summer for Elena to be more self-sufficient; the Summer of No Carrying paid off BIG TIME, as she can do so much more (hills, stairs, steps, etc.) and in a reasonable time frame. Over the school day, however, her endurance is not strong. I am expecting this to improve over the school year; by the end of First Grade, everyone is hoping that Elena will be fully independent (meaning no personal aide for normal school activities).
It's a big goal. But First Grade is a big year for us. I think Mr. M. is a good fit for Elena, during this physically, socially, and academically growing year.
E's teacher this year is new to the school. He is very approachable, and seems to enjoy E in the classroom. He encourages autonomy and community within the classroom. One thing that surprised me was Mr. M's question regarding her in-school therapy time. Apparently, the PT was going to pull her out of recess. Mr. M. thought E might really like recess, and figured maybe I should weigh-in as to what E would miss while she was at PT.
I couldn't believe it.
I never thought of that before. E's been in public school for 4 years now, and this is the first time anyone asked me that.
Now, I'm not mad at the PT or teachers that E's had previously--I was so grateful that she was getting services in school, I never thought about anything else, and no one (including Elena) ever made me think that she was missing something during her therapy pull-out time.
But, things are different now. She's making friends, she's playing with others, her disability is front-and-center, and her playmates seem to be okay with it. She integrates herself in recess and P.E., and loves being active. I asked E's team (teachers, therapists, us parents, and E) what we felt was a good fit for school PT--and the decision was made that she'd miss a 1/3 of literacy time. That was a bit of a hard sell for me--Elena can read, but she still needs a lot of help. But we all agreed that she should not be pulled out of something physical to do physical therapy.
Right now, Elena still has her aide from last year, A. A still helps Elena with some things--pushing in/out her heavy tripp-trapp chair, carrying her lunch or tray in the lunchroom, occasional help in the bathroom, help on the playground and in P.E. She has an adaptive P.E. student help her once a week (they are great!). Elena still needs help on/off the SpEd bus. She gets the option to ride in her push-chair (wheelchair with small wheels) if she is very tired over a longer distance (after recess, for example).
We worked very hard over the summer for Elena to be more self-sufficient; the Summer of No Carrying paid off BIG TIME, as she can do so much more (hills, stairs, steps, etc.) and in a reasonable time frame. Over the school day, however, her endurance is not strong. I am expecting this to improve over the school year; by the end of First Grade, everyone is hoping that Elena will be fully independent (meaning no personal aide for normal school activities).
It's a big goal. But First Grade is a big year for us. I think Mr. M. is a good fit for Elena, during this physically, socially, and academically growing year.
Kinesiotaping
I have some interesting pictures/footage of Elena wearing kinesiotape. If you haven't heard of it, kinesiotape is a type of skin tape used for lots of applications...in our case, to stimulate/differentiate muscles. The tape is stretchy in one direction; so, depending on the position of the body and the direction/tightness of the tape, you can promote (or discourage) movement. It's sort of like wearing a band-aid across your knuckle, along your finger--if you put on the band-aid when your finger is straight, you don't want to bend your finger.
Anyway, we've tried it a few times--over her knees (to promote taller standing/walking) and across her right hip to discourage turning in her leg from the hip socket.
For some kids, the difference is pretty dramatic. For us, that wasn't the case. While I do feel like it helps (a little? there's a lot of "hand-waving" here), there is no massive difference. Depending on the application of the tape (alcohol primer, no repositioning, good adhesion) it will stay on 1-7 days. Elena does not mind it, provided she doesn't pull on it when getting dressed (you can't rip stuck tape off--you need oil).
I am interested in trying this for a while--and I'd like to make some before/after video footage. Problem is, every time we've done kinesiotaping, she's been in her underpants or in a situation where you can't see the tape. I can say, if this shows some progress and we end up doing this on a regular basis, I'll be learning how to do this myself.
Anyway, we've tried it a few times--over her knees (to promote taller standing/walking) and across her right hip to discourage turning in her leg from the hip socket.
For some kids, the difference is pretty dramatic. For us, that wasn't the case. While I do feel like it helps (a little? there's a lot of "hand-waving" here), there is no massive difference. Depending on the application of the tape (alcohol primer, no repositioning, good adhesion) it will stay on 1-7 days. Elena does not mind it, provided she doesn't pull on it when getting dressed (you can't rip stuck tape off--you need oil).
I am interested in trying this for a while--and I'd like to make some before/after video footage. Problem is, every time we've done kinesiotaping, she's been in her underpants or in a situation where you can't see the tape. I can say, if this shows some progress and we end up doing this on a regular basis, I'll be learning how to do this myself.
Wednesday, September 14, 2011
Video/Picture Recap
Some new favorite videos and pictures that I'm too busy to write about...
At the Polo match
Pony Birthday Party
Tailgating at the Nationals Game
Viv loves Pepsi
At the Polo match
Pony Birthday Party
Tailgating at the Nationals Game
Viv loves Pepsi
Friday, September 9, 2011
Pictography
Elena has been going to bed PERFECTLY since I wrote the last post. Now, last night, I thought we were headed straight for the Meltdown ("MD"). We'd been getting a lot of talking back and defiant behavior (not uncommon on a therapy day), and sure enough, Elena threw a fit when we told her it was time to get ready for bed. She typically yells, screams, and hits things (normally not people). During these fits, she will say things that make sense, like "I am NOT HAPPY WITH THIS!" and other perfectly other reasonable feelings. But, if we don't give in (which Jason and I do not), then it turns to MD central, where Elena just yells and screams--no amount of talking will calm her.
Until last night.
Jason was on "MD duty" and he tried several different ways to try to calm her/explain the situation. I was upstairs putting Vivian to bed. 40 minutes later...it was quiet downstairs--conversational even! I went downstairs cautiously, and heard Elena say "I learned my lesson" somewhere in a sentence--and we went ahead with bedtime as usual once I entered the room.
Smiles. No problems. Not even a lot of questions.
After I kissed E and left the room, I expected the screaming to start. Even so, I figured, tonight was an achievement. But--it never got loud. Elena never called for me. She just went to sleep, like the two nights previously.
"Jason--what did you DO?" I asked, needing an explanation of this miracle.
"I drew her a picture."
THIS? This stick figure-picture saved the evening?! Basically, it says (left-side column) "Daddy and Elena ready to play (game of) Life, happy" and on the right column, "Elena hits--Daddy is sad. No Life."
Stick figure drawings are now our #1 weapon against MDs. Who would have guessed that??
Until last night.
Jason was on "MD duty" and he tried several different ways to try to calm her/explain the situation. I was upstairs putting Vivian to bed. 40 minutes later...it was quiet downstairs--conversational even! I went downstairs cautiously, and heard Elena say "I learned my lesson" somewhere in a sentence--and we went ahead with bedtime as usual once I entered the room.
Smiles. No problems. Not even a lot of questions.
After I kissed E and left the room, I expected the screaming to start. Even so, I figured, tonight was an achievement. But--it never got loud. Elena never called for me. She just went to sleep, like the two nights previously.
"Jason--what did you DO?" I asked, needing an explanation of this miracle.
"I drew her a picture."
THIS? This stick figure-picture saved the evening?! Basically, it says (left-side column) "Daddy and Elena ready to play (game of) Life, happy" and on the right column, "Elena hits--Daddy is sad. No Life."
Stick figure drawings are now our #1 weapon against MDs. Who would have guessed that??
Tuesday, September 6, 2011
Bedtime Disappointment
Well, here I am again.
Elena is acting out at bedtime again. I have no idea what set it off...we were doing so well over the summer. We spent the night at my parent's house one time, and E was TERRIBLE--screaming, shouting, just...awful.
Her outbursts have been sporadic since then, but seem to be approaching regularity. I am convinced it is not because of school (well, it's been happening through the summer too, anyway...whatever that means). She is seriously FINE throughout the day--happy, smiley, occasionally contrary (she's 6, after all) but when it comes to night time--as soon as she gets tucked in, she picks something to obsess about.
Is her blanket on right? (For the 5th time, YES)
Will I come and check her? (I DO THIS EVERY NIGHT, once she is asleep--I shut her door almost all the way, so she knows I've been there)
Does she have a tissue if she starts crying? (YES. I do remind her if she loses it, or needs another one, she's perfectly capable of going to the bathroom to get one herself if she thinks she needs one that badly.)
She will ask these questions in different (or same) ways at least 5 times. She KNOWS the answer, but will start screaming if we don't answer her. Then she'll say she "misses [fill in the blank]" (family, friends, a stuffed animal downstairs) or that she's "afraid of [fill in the blank]". She NEVER SAYS THESE THINGS until she is under the covers at bedtime. Then she's upset b/c she "can't fall asleep" or I "won't let her fall asleep", screaming about it for 20 minutes or more. Then she tries to switch the parent in charge.
It's almost like she needs 20 minutes of crying in order to rest.
It's INFURIATING. I am so disappointed. I am angry with her. I try not to show it, try to make bedtime as normal and unanxious as possible, but this makes my mouth and head hurt b/c I am gritting my teeth so much. Jason and I are dreading bedtime again. Elena is robbing any couple time we might have with her behavior--because once she is actually asleep, we are too drained to bother trying to talk to each other. Some nights we rebound, but normally I am completely tapped out.
So, today I'm calling back our psychologist. The one we graduated from this Spring. I told myself I wouldn't feel like a failure if I had to call back...but that's simply not true.
Elena is acting out at bedtime again. I have no idea what set it off...we were doing so well over the summer. We spent the night at my parent's house one time, and E was TERRIBLE--screaming, shouting, just...awful.
Her outbursts have been sporadic since then, but seem to be approaching regularity. I am convinced it is not because of school (well, it's been happening through the summer too, anyway...whatever that means). She is seriously FINE throughout the day--happy, smiley, occasionally contrary (she's 6, after all) but when it comes to night time--as soon as she gets tucked in, she picks something to obsess about.
Is her blanket on right? (For the 5th time, YES)
Will I come and check her? (I DO THIS EVERY NIGHT, once she is asleep--I shut her door almost all the way, so she knows I've been there)
Does she have a tissue if she starts crying? (YES. I do remind her if she loses it, or needs another one, she's perfectly capable of going to the bathroom to get one herself if she thinks she needs one that badly.)
She will ask these questions in different (or same) ways at least 5 times. She KNOWS the answer, but will start screaming if we don't answer her. Then she'll say she "misses [fill in the blank]" (family, friends, a stuffed animal downstairs) or that she's "afraid of [fill in the blank]". She NEVER SAYS THESE THINGS until she is under the covers at bedtime. Then she's upset b/c she "can't fall asleep" or I "won't let her fall asleep", screaming about it for 20 minutes or more. Then she tries to switch the parent in charge.
It's almost like she needs 20 minutes of crying in order to rest.
It's INFURIATING. I am so disappointed. I am angry with her. I try not to show it, try to make bedtime as normal and unanxious as possible, but this makes my mouth and head hurt b/c I am gritting my teeth so much. Jason and I are dreading bedtime again. Elena is robbing any couple time we might have with her behavior--because once she is actually asleep, we are too drained to bother trying to talk to each other. Some nights we rebound, but normally I am completely tapped out.
So, today I'm calling back our psychologist. The one we graduated from this Spring. I told myself I wouldn't feel like a failure if I had to call back...but that's simply not true.
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