Recap: End of 6th grade and other stuff

Pretend it's April/May/June.

Right after Elena's Honor Choir field trip, she had a field trip to Shenandoah National Park (literally the next day). The weather was horrible (pouring rain), Elena got left behind on the hike (I was seriously pissed off, but things happen). She was with her aide and myself. Long story, lessons learned, etc. but in essence, just about everyone on that trip was pretty miserable. At any rate, it was *memorable*.

Just...horrible. (This was a short break in the pouring rain.)

We went to a friend's beach house (so lovely!). We played games, played in the ocean, E and Viv even got to kayak and paddleboard! We had such a GREAT TIME. Super fun, and the kids were pretty independent. As a matter of fact, their first move on the beach was to paddleboard out of sight (quickly followed by parents).

Paddleboarding!

How I like to kayak.

Elena had her 12th birthday. TWELVE. Honestly, there's so much to say, but as I'm still playing catch-up, I'll leave it at this: Elena is rocking it right now. She has a good sense of her disability, is very real about it, but tries very hard to not let it get in her way. She is growing more responsible and mature (but not too quickly!) and makes us proud every day. We love you E!

E at the school Track Meet. Her relay team was AWESOME. She is carrying her baton in her "pocket shirt".

May consisted of school SOLs (Standard of Learning) and Elena had goals to pass all of them, with an Advanced Pass in Language Arts (she has never had an advanced pass, and in the past these tests have been incredibly anxiety provoking and she has failed several). She only had two; she passed her Math SOL (solidly!) and was one point away from an Advanced Pass in LA. Wow!

June was the end of school wrap-up; concerts (Elena), performance (Vivian), sports (baseball for Viv), and a flurry of academic presentations to showcase the kids' achievements. Honestly, it felt like something was happening every evening for the first two weeks of June. I loved seeing what the kids (and their friends) had accomplished this year--impressive!

Vivian ended the school year with great grades (numbers, not letter grades or tests yet, much to her dismay) and Elena ended up with all As (including MATH!!!) with one high B (Language Arts). She worked HARD for those grades, I tell you. What a year. I can't believe I'm writing this, but 6th grade was a smash hit!!

Welcome Summer!

This week Elena and Vivian had their last day of Fourth grade and Kindergarten, respectively.  Both are ready for summer!

Welcome Home for Summer!

This year has been HUGE for both kids.  Vivian loves school, and was totally ready for full school days.  Halfway through the year, I let her join an after school activity (tap dancing). She is very bright, is a voracious reader, is a quick math study and loves to play with friends. She has grown leaps and bounds socially. My only concern for her is that first grade will not be challenging (we are pursing options about that).

Elena had a banner year. Fourth grade means real grades, not just a number system for effort and mastery. Elena struggled with math at the beginning of the year. She studied and practiced hard, and with the help of her Math Coach, she ended up finishing this year with straight As!  THAT IS HUGE. She worked through lots of knee pain. She auditioned for and won the lead in the school musical and was AMAZING. We had more playdates than ever. She passed all her SOL tests--for the first time EVER! She has grown more responsible, more mature, more accountable, and more social.

Both girls are healthy and happy, enjoyed school--but very ready for a well-deserved break!  Every year I make them a chalk welcome on our driveway. They enjoyed running all over it. We've made our Summer Bucket List, and we're ready to start checking them off!

Chalk Work under fire

Water Fight

Water Fight

School, Summer, and Operation possibilities

School

So, right now Elena is having her Standard of Learning tests in school. For anyone not familiar with these test, this is a nationwide standardized test administered in public schools for grades 3 and up. the testing is controversial; the scores do not enter into the (elementary) student's record (they do in higher grades), but rather are used to assess how well the teachers/school are conveying material to students. In other words, it is a measure of the school, not the student. I have taken  few of these; the questions can be quite difficult, and some require more than one degree of inference. The tests are not mandatory, per se; parents can opt out their children--but what they may not know is when they do, the score for that student becomes a zero and lowers the school performance record.

These tests bring out the worst of anxieties in students, and Elena is a perfect example. I wrote about this during her third grade year; she was awash in nervousness and extremely disruptive. Tackling anxiety, quite simply, is going to be a problem for us (with Elena). While I don't look forward to testing, I do think it can be a way to measure if Elena is making progress dealing with her emotions.

Which…is debatable this year. Last night was the eve of her first (out of four) days of testing. She has accommodations in her IEP for extra testing time, but since the test is divided into two days (thursday and Friday) she cannot go over the weekend (or start early) if she needs even more extra time. Granted, she has the entire school day if she needs it (most kids are done in 3-4 hours, with breaks). She is, without a doubt, very articulate in her fears (once she calms down enough to discuss them) but she can be incredibly disruptive when given a lot of attention (our normal reaction is to disengage and let her calm down on her own--she doesn't like that b/c she feels we are ignoring her). After a huge meltdown the eve and morning of the test, I had low expectations for the day.

But, Elena surprised me. I received only positive feedback from her teachers regarding her test-taking. I'll call that a win.


Summer

I am trying to get plans in order for the summer. Currently I have spots reserved for both elena and Vivian and Camp Holiday Trails, but I haven't finished all the paperwork yet. I also applied for funding for Elena though the IFSP program (more on that later) an dI'm trying to wait to pay for certain summer things until I hear back regarding the funding. Dealing with heat, mobility, and size (vs. peers) are going to be issues for Elena this year I think. Heck, the heat is an issue for me right now--and I LOVE hot weather. I haven't been able to acclimate to the warm weather b/c I still have a difficult time navigating outdoor terrain. I'll get there.

In case anyone cares, here is a current picture of my "winky face" knee (almost 7 weeks post-op).

My left, your right. Still swollen and hates to bend.

New Op?

I'm currently researching epiphyseodesis (bilateral anterior distal femoral tethering) for Elena. Her main ortho recommends it, and E is scheduled for this at the end of September. In layman's terms, this is referred to as growth plate tethering. Basically they put some sort of splint/staple on either side of the distal femur (maybe proximal tibia?), kneecap side. This will temporarily halt Elena's bones from growing in the "front" of her legs (like mine, shown in the picture above), while allowing the back of her legs to continue to grow--essentially "growing out" of her crouch.

It's outpatient, quick recovery (comes home in some bandages only), slow changes, and temporary. The tethers come out in about a year or so and then she would continue growing as normal.

It seems like a perfect solution for a growing kids with CP. I'm sure it's not perfect, but it sure sounds good. I'll be digging up more information and posting what I find out.


SaHM experiment

My first attempt at making crutch covers! I'm not great with a sewing machine, but I am trying. These are a little snug--I'll probably perfect it with the next few attempts. Better than the hard plastic, and much cheaper than buying them (with no color choice).

Moi as hand model

Pink canvas and orange soft interior

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.

Third Grade Grades...and Tests

So, here's the short story.  E is mainstreamed in school, and is doing well (I think, anyway).  Jason and I were most worried about her social integration and psychological well-being.  Her academics seemed to be coming along fine.  Once her language emerged (age 2.5 years, before that she was essentially mute and we used sign language) things started to fall into place--she could talk to her peers, reading came easily, as well as counting and simple number play.

Surprisingly--and to our great relief--the staff and students at school have been very welcoming, and as far as Jason and I can tell, Elena's social development is going very well.  When I visit school, she is smiling, playing with her classmates, and running and keeping up as best she can at recess.  It makes me want to cry, it makes me so happy.

Her grades (if you can call them grades, right now they are numbers) are good.  It is obvious she has some difficulties in math.  We have a private tutor that she loves.

Third grade has more standardized tests than any other grade in public school (I think this is right; I may need to check).  Part of it is beta-testing for future students, part of it is getting kids used to tests, part of it is the government issued mandate.  Personally, I do not have a problem with standardized tests--I understand that there needs to be a way for teachers to evaluate and report what their students know.  Most teachers I know do not like standardized tests--but what is the alternative?  Teachers are expected to do so much already, how can society expect them to find a test that "works" on an individual basis?  And with what "spare" time?

That being said, Elena had her first mid year tests.  She bombed them. 

The first problem was...well, she had a complete, full-on meltdown at the beginning of the first test.  Crying, moaning, disrupting every other student, inconsolable.  I don't know why, either.  I know it isn't pressure from Jason and I, because neither of us were aware that the test was even happening (we probably should have) and any other test she's done well or okay on, and we get the results late anyway.   I wasn't there, but I know how it goes--we had this during our nighttime issues.  I got a call from the teacher--and the principal.

My guess is that is her reaction when she is overwhelmed, and doesn't have a coping mechanism to calm down.  At home, we have completely tamed this beast at night (and almost any other time) but our go-to is disengagement (Ferber method) over time--and we rarely have to do that any more.  Regardless, that simply won't work in school, and won't work for tests in general.

As for that test on the first day, she started it late, and was allowed to do it on paper (it was a math test) instead of the computer.  (I understand that the computer element can increase the difficulty for a lot of kids).  The second day (language arts), she had another meltdown (maybe not as bad?) but they had her in a room by herself and one teacher.  That teacher is on her IEP team, and got a little information out of her (see later in the post).

I'm not upset about the tests.  I am super upset about her emotional state of mind and her disruption of other students.  The principal, her teacher, and others on her team and I have spoken about what to do next.  The first thing that came to mind was special accommodations--which I am not immediately a fan of, since I feel this is more of a lifelong skill of emotional management, or the hope that more exposure to tests will lesson her extreme response.  I am not against accommodations (written vs. computer, extra time, individual or smaller group testing sessions, etc.) in general--but I only want them if Elena actually needs them.  To quote the principal, no one wants to "over-accommodate her" but all of us want her (and the rest of the students) to be in the right environment to do their best.

So we start the process to figure out exactly what that means.

For some reason, one which I have never seen myself or even heard about until the teacher/principal phonecalls, Elena is panicked about tests.  We've talked about it at home, but I don't have a clue why she's so worried about it.  I feel like if she could find a way to calm down, have confidence in herself, and cut herself a break, she would do fine.  Is she that worried about disappointing us?  I certainly hope not!

So, here is what I learned (in no particular order):

1.  She knows she didn't do well on the two tests.  She also knows we're not mad at the grades (we are upset at her behavior).  She knows she needs to change her behavior and that we are willing to help/support her (as are her educators).

2.  She knows she'll probably have after-school help (tutors) to figure out how to improve her performance.  This is actually a huge bonus, b/c they will also help/guide with homework, which means she'll have MORE free time at home b/c she drags her feet doing it until the last minute.  She does not seem upset about this.

3.  She also knows I'm not going to shove tutors in her face at every opportunity.  Elena needs outlets that are just fun.

4.  The goal of initiative comes into play here--not speed, but the idea of starting on time.  Finding less distraction, and a focus on the start (maybe we'll need focus in the middle and end, but the start is what I'm looking for here).  Elena is getting the idea that she is accountable for this.

5.  Elena needs to advocate for herself.  She was prompted with "are you uncomfortable?" and she answered "my legs hurt if I sit too long" WHICH IS THE FIRST TIME I HAVE EVER HEARD THIS IN HER ENTIRE LIFE, except right after surgery.  I was shocked to the core--mostly b/c IF this is true, it needs to be changed immediately, and if she was just using it as an excuse, completely unacceptable.  She is learning, especially in a testing environment (but in school in general) that if she needs something to be more successful, she may (or she should) ask about it--because other people can't read her mind.

6.  If I was still working, I would have not responded to this as quickly.  I think Elena needs me.  I want to be that positive force for her, to support her when she needs it.