Friday, May 30, 2014

Feeling a little...crushed

It's been a whirlwind as the school year winds to a close.  Vivian has finished preschool, Elena finished her testing (yay! with no meltdowns!) and has less than two weeks left until summer break. Jason and I went on a short vacation, with his parents taking care of the kids.

Things aren't bad here. But I'm stuck in a bad mindset.

Elena is tight. I know that, I've seen it for a while--the emphasis on testing/studying/tutoring results in a LOT of sitting. Her crouch gait is markedly worse. She hasn't grown a bunch in the last six months, so it's not about that. I don't know what happened (besides school?) but...frankly, her posture looks terrible.

I am hoping that with summer coming, she'll have lots of opportunity to stretch, move, play, and have fun. After her ortho appointment this week, though...I can't help seeing the future in dark colored glasses.

Her hips "seem fine", her contractures "aren't that bad", and her joints "seem okay" and she is "pretty flexible". Sounds okay, right? That's what I thought. Her main PT keeps talking about how she needs a sustained stretching regimen (impossible during the school year, unless it's at night--again, impossible to implement successfully during the school year) and her doc agrees. If that doesn't work, I assume surgery is on the table to try to help her get out of her crouch so she can avoid a lot of pain later in life. But with surgery comes weakness, with weakness comes poor posture, pain, less mobility. Elena is such a happy kid and loves to play. I don't want to be negative but currently I feel in a very hopeless emotional state.

She has patella alta (high kneecap) and honestly, probably has for quite some time but with a new diagnosis/description it hits like a ton of bricks. Common with people with diplegic CP with crouch gait. So I did some research (with any research on CP, there isn't much that I feel really fits with us, as every case is so unique) and I found this:  Cerebral Palsy lifetime care--four musculoskeletal conditions is an article that covers patella alta, hip dysplasia, spondylolysis, and cervical stenosis.

Elena does have shallow hip sockets; I'm not sure if subluxation is an actual concern, but developing early arthritis is. She has lordosis, crouch gait, and has had a rhizotomy, all indicators of developing spondylolysis. I stopped reading in a pile of tears. I feel most of this article rings true for Elena.

If her gait wasn't so poor lately (it got worse in the last 4 months or so) maybe I wouldn't be so emotional. And when I've reached a breaking point enough to write about it, things tend to turn up, so I am hoping this is true. As she gets older, and disability sinks in, I see her less likely to try new things and mix herself in a group setting. Not entirely-it could be that she is saving energy, or is smart enough to know what she likes and does not like to do-but to me, it seems like some of the "can-do" flame is burning out.

She hears all these suggestions from therapists, doctors, and Jason and I-things to hopefully make things better or keep bad things at bay. I'm afraid what Elena hears is "YOU ARE NOT TRYING HARD ENOUGH TO FIX YOURSELF". That isn't the message (!) but I think that is what she thinks it is. I'm trying to listen and learn and help her to use her body as best she can so she can do as many things as she wants to do.

Without going into too much detail (b/c I'm tired and emotionally drained right now) it looks like the short-term plan is night stretching, possibly botox (hamstrings, adductors, and calf/soleus? I don't know), massage with the intent of bringing the kneecap down (manipulation of some kind, it's "not supposed to be painful" but it sounds like it is), and a new stander. And fun stuff, but this isn't a fun-stuff kind of post.

Please comment if you know about this stuff. I'd love to know what you have done, or what you've told your kids, or what worked (short/long term) or what didn't. Any info is appreciated.

Wednesday, May 7, 2014

SOLs and other things

Welcome to May in our house!

SOL testing, for those abroad, is short for Standards Of Learning for a particular grade and the tests are government mandated each year.  Third grade has more tests (four in may, many over several days) than any other grade.  There are many parents/districts in an uproar over these tests.

Elena has a hard time with testing.  We are working out "kinks" to figure out her best testing situation--seating, duration, breaks, computer v. paper/pencil, etc.  There are a lot of learning opportunities here.  Your comments have really helped, so thank you.  I have brought them up in IEP meetings and I've spoken to Elena about them.  The biggest issue right now, is, unfortunately, test anxiety.

E's first test is tomorrow.  She is doing well in school (on grade level, very high marks in everything.  Her weakest area is math, but she shows tons of improvement).  As much as I try to reassure her that we love her, we are proud of her, we are not worried about her score, and that we want her to try do be the best Elena she can be--she broke down tonight.  It's heartbreaking.

But that's not the worst of it.

Look, you can throw theories out there that E's brain damage/CP is related to her anxiety/test taking issues, whatever.  She has extra tutors.  I don't love all the time spent tutoring, but like everything, it's finding a balance--and she seems cool with it.  But when E comes home with stories about other kids breaking down, giving up--eight and nine year old KIDS who GIVE UP and stop trying--it breaks my heart.  That's not what school should be about.  Elena is not one of those kids, but I never forget that she could be.

I stand by my statement that standardized tests are not inherently bad--there needs to be a way to ascertain what kids know, and it takes too long to do that individually.  Teachers are already overspent when it comes to time, and underpaid when it comes to effort.  Our school is fantastic.  I can't imagine a kid like E in a school that has less resources.  Fact is, these SOLs are hard.  I prefer the word "challenging".  As a third grade kid, I would have done well on these--but I would have had to read closely, as not to get tricked by the questions (which can be easily done if one skims them).  As an adult, I still have to read closely and frankly I'm surprised at the complexity of the questions for a third grader (surprised? impressed?  worried?).

Anyway, this has been our life for most of April.  May is full of tests.  We try our best to "be cool" at home, doing our thing (play, homework, dinner, bath, stretches, etc.) without trying to stress out Elena (she does a lot of this on her own), but I'm not sure how to best support her.  At worst, it's only a month, right?  SIGH.  

E, I wish you the best.  I'm not worried about the worst.  Hang in there, kid.

Happy 9th Birthday Doodle!

Elena turned 9 years old April 30th.

NINE.  She is definitely growing up, my girl.

We did not have a party.  April was way too busy. Tutoring, test prep (SOLs), spring break, therapies, homework.  We (all of us) decided to postpone Elena's birthday party until next month (this month, May.  I'm late posting this).

Dear Elena,

Happy, happy, happy birthday my darling.  We have learned a lot together this year.  You love school, your friends, being outside, being active...even though you--and everyone around you--know this is a little different for you.  And it's fine.  With everyone. 

You picked a pretty grown-up restaurant for your birthday dinner.  You still love olives, don't like oysters-on-the-half-shell (neither do I!), enjoy trying new foods,  and love a good soda drink.

You love singing, art, and playing outside (which is newly independent for you).  You love school and your friends.  We (your family) are your biggest cheerleaders.  Your favorite colors are still pink, purple, and orange.  You love to read and "work out".   Your favorite subjects in school (in order, I think) are Music, Art, PE, and everything else.  You love electronics and swings, biking and iPad, American Girl and helping Mom.

I won't lie.  You are a high-maintenance kid.  And worth every minute, girl.  We love every thing, and everything, about you.

We love you always, and in all ways,

Mommy and Daddy and Vivian