Thursday, September 29, 2011

Therapy Sifting

Well, here I am about a month into the school year. A month since we basically shut down a lot of Elena's schedule, so she could get used to the changes related to starting First Grade.

Here's what was removed from the schedule (more or less):
-Feldenkrais 2x/week
-bike ride/playground 1x/week
-art class 1x/week

Here's what was added (more or less):
-hippotherapy 1x/week (not really, but the horses get the month of August off)

Here's what changed during this period:
-E has to go to bed promptly by 815pm, up at 620am on school nights (bedtime remains the same on non school nights)
-E is in school (obviously) and has an aide to help
-E has PE 4x/week, and recess daily (not sure how much the aide helps in either of these cases)
-E got KiddieGait braces (rather than her DAFOs)--lighter, a little more flexion with the KGs
-E has learned to run (with and without her crutches)
-the focus in E's PT has been, more or less, away from CME. They have been trying some new techniques (Kinesiotaping) and evaluating her short/long terms goals (many of which are related to independent movement while wearing her braces and shoes)

Here's my big observation.

Elena's gait/stance looks WORSE.

She seems to
1) toe-in more often on the right side
2) weight bearing in standing is decidedly on the left foot
3) right knee/hip caving in more often and more pronounced, when walking or standing, especially when NOT wearing braces and shoes
4) confidence is lower when walking without a handhold (especially without shoes and braces)--immediately falls or whines about falling in the morning. In the evening she might not fall as much--but she's WAY on tiptoes

So, here I am wondering what key element(s) is (are) currently missing to account for this relatively abrupt change. My first thoughts are
1) Elena loves to go fast now. Faster movement is going to involve more spasticity--so her stance will look worse. I understand that, but it doesn't explain why her slow movements look bad.
2) I wonder if she's "coddled" at school? Meaning, if she whines, or is tired, she gets a ride or gets things brought to her rather than do it under her own power? She says her "right leg is weak" a lot now--as if that excuses her from using it. Sorry kiddo, not going to work with Mom.
3) I think E needs more CME. This is BY FAR my favorite therapy, and I've been slacking off at home and her private PT hasn't been doing much of it as late. I will devote some time to this (time to get creative so E will agree to home PT sessions!)
4) Do I need to get Feldenkrais back on the schedule? E loves the practitioner--but realistically, it's going to be HARD to get that squeezed in 2x/week.
5) Could this be related to growing?

I know a lot of you out there try to balance life and therapies--how much is too much? What kinds are important? How do you know if they are doing anything for your child? I guess the best way to figure that out is to remove it from the schedule and see what happens. So far, I'm not liking my decision to do this. Time to add one (at a time?) back in (by magically making more hours in a day??), and see if that makes a difference. Super.

Monday, September 26, 2011

Prognosis of a Faun

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?

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.


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 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.

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

Friday, September 9, 2011


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 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.

Thursday, September 1, 2011

Earthquakes, Hurricanes, and Bears, OH MY!

Last week was CRAZY.

Virginia had an earthquake (5.9 on the Richter scale)--my first experience. It was scary and fascinating. No one was hurt around here, and very little damage to buildings. Elena was scared--but kept her "brave face on", so proud of that girl! We've had several aftershocks--I'm ready to be done with quakes in general, though.

Elena started First Grade.

We had about a billion Hurricane Irene warnings--it was going to miss us, for the most part. We got some rain and some wind--again, nothing major. I feel bad for our neighbors South, and up North who got lots of wind and water. Hope you all are okay.

I had planned to attend a camping trip with some friends a long time ago. They are seasoned campers--as I've written before, I dislike camping, but I had promised Elena that I would take her and Vivian if they wanted to go. So, amid the arrival of Irene, we went. (And on the way, the car died--nice way to start the trip, no?)

Camping with a disabled 6 yr-old can have its challenges--but camping with a fiesty almost 3-yr old is HARDER. A giant bear (not kidding, HUGE!) greeted us at the campsite--I WAS PETRIFIED--but both Elena and our friends were okay with it (!!!), so we stayed (and, obviously, lived to tell the tale). It rained, as expected. We just dealt with being damp most of the time. It was actually quite pleasant while we biked, hiked, and fished the following day (we managed to do all those things inbetween buckets of rain).

Morning hot chocolate

Viv readies the line

Fishing (we even caught three fish!)


Biking during a break from the rain

This week our Fantastic Nanny Annette is on a well-earned vacation, so we're piecing things together. And with Jason going overseas for school in two weeks, I'll have more than ever to juggle. C'est la vie, non?