Tuesday, January 28, 2014


Elena has been taking piano lessons, roughly once a week, for a few months now.  It is going very well.  It was a very very rough start, though.

Elena had been asking to take piano and voice lessons for quite some time.  I wanted to schedule some, but there just wasn't time--nearly everything I could find was on a school night and time is precious on those afternoons/evenings.  We decided to try late afternoon on Friday, b/c there was an opening at a well-recommended teacher's home.

Jason and I were looking for something that Elena wanted to do, that she could explore, that wasn't physical.  She seems to enjoy music, so that was a plus.  I liked the fact that music is both a right and left brained activity--it's artistic, but also mathematic.  And I liked the idea of Elena using her hands in a different way.  We were all cautiously excited.

All of us had a lot of learning to do.  (Keep in mind that neither Jason nor I are musically inclined.  I played several instruments in my youth, but never well, and never really learned how to read music.)

Nicole is an incredibly enthusiastic teacher and vibrantly engages her students.  Elena loves seeing her so excited, and feels a great sense of accomplishment.  Nicole was initially, maybe, too excited.  Elena kept telling us how "easy" everything was, and never wanted to practice.  I did not want to make her practice, b/c I didn't want it to be another thing I was nagging her to do.  In the beginning, practice wasn't something Elena could readily do because our (large) electric piano did not have an easily accessible resting place.  We would clear off the table and have her use it there, and she wasn't really interested.  So we didn't push it.

It became obvious to me, after several lessons, that Elena did not understand what was on the written page.  Her rhythm (in general) is not steady--that could be due to poor trunk strength/stability when clapping or tapping feet--but the difference in quarter and half notes was not something she picked up immediately.  She also had issues following the music--the idea of the treble and bass clefs flowing as a unit was lost (she was looking at them more like reading a book, "one line at a time").  She became frustrated, refused to practice at home, and cried a lot.  Jason and I tried to be patient--but her wanting help and at the same time refusing to listen or work with us became problematic.  I spoke to the teacher about our frustration, and told her I was going to take a back-seat and see what the two of them could work out.

None of this seemed a deal-breaker to me; music is complicated.  It's a different language, with hand-eye coordination, repeating letters (notes) that have the same shape on different assignments on different clefs, and if your eyes leave the page it's easy to get lost.  It's so different than anything else.  It was a real eye-opener for Jason and I, to see Elena's learning process in action.

One day there was a breaking point.  I told Elena that I was not going to pay for lessons if she refused to practice at home.  I rearranged the furniture and found a place for the piano to live, where she could easily access it whenever she wanted.  It was obvious at her lessons that she didn't know what was going on, and Nicole called her on it--she told her lessons were where she was supposed to learn new things, not only review what they did before.  Elena barely kept back tears and said she didn't know what the note was on the page, or she couldn't follow where she was.  Nicole managed to turn E's attitude around a bit, and finished her lesson.

That evening, E was determined to practice.  So I sat with her.  We talked a lot about what was on the page.  Obviously, people don't always learn things the same way--but Elena learns music a lot differently than I do, but once we figured out what worked for her, it worked beautifully.  It took a lot of time and patience.

Jason and I wanted an activity that Elena chose that didn't have to be so hard.  Piano was not the best choice for that.  Music is complicated, and our idea that piano wasn't physical was dead wrong.  It takes good posture, core strength, finger strength and overall hand dexterity--all things that Elena lacks, and she could use a fun channel to improve those deficiencies.  Now that we found what information Elena needs to be successful (it's hard to explain--she needs the letter note and a sort of orientation of where that note is on the scale, rather than just to hear it and figure it out from there) she is really enjoying piano.  She sits down to practice several times a day, unprompted.  Her practice is anywhere from 2-20 minutes, typically less than ten each time she sits down to play.  She loves going to lessons, and is making great progress.

The entire family has learned a lot though piano lessons.  One, that an activity that is not cardio-vascular in nature does not exclude it from being physically demanding.  Two, Elena does not typically ask for help when she is lost.  We are working on this in terms of self-advocacy; I noticed this with her academics at about the same time.  It's actually nice to have a musical, fun way of reinforcing this idea of responsibility for practice, problem solving, and seeking help.  Three, making the piano freely accessible relieves most of the parental pressure from the responsibility of practice.

She really does enjoy music, and continued to ask for voice lessons.  I rearranged her schedule, moved her longstanding regular PT date, and postponed tutoring so she could join the Glee club at school.  It starts tomorrow.  I think she'll love it!

Tuesday, January 14, 2014

The Give and Take

Well, I've learned a lot in the last two weeks or so.  With school back in session, and me home now, I have a more complete picture of how Elena handles her day.

Our current situation operates on a fulcrum, and I see it everyday, in every thing, regarding Elena.  It's hard to explain, b/c it encompasses....everything.

As she spends mornings in her stander, her legs get a stretch.  But her sitting posture suffers.  In her stander, she can't practice keeping her hands out of her food like she does when she sits at the table.

We practice math after school.  She is doing great!  But that extra 45 minutes of math means that there is no free time because it's bath night, it takes her an hour to do her homework, and bedtime waits for no one.  She needs her rest.

She wants to do things herself.  We want that too.  But we limit what she can do in the morning (we dress her, but she brushes her teeth, etc.) or else she can't get to the bus on time.

Time.  Independence.  Strength.  Spasticity.  Academics.  Tightness.  Play.  Rest.

When improving one results negatively in another, what do you do?

And as her younger sister handles more than one of the above (with ease), it just exacerbates the situation.  We're between a rock and a hard place.  All the time.

The good news is, I really see this balancing act now.  I'm still working out some options (possible homework accommodations, looking for time saving ideas around the house, dropping some after school engagements, giving Elena more choice time) but it is a constant struggle.  The other piece of good news is Elena and I are communicating about it.  She is better at understanding why these things are important (therapy, homework, stretching, practice) and she knows that I am trying to give her things she needs--but also things that she wants--like playtime, creative time, break time, friend time.  I know those things are important too.

Sunday, January 5, 2014

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.

Thursday, January 2, 2014

New Years Goals, 2014

Happy New Year!  I hope everyone is ready to say goodbye to 2013.  For me, 2013 was a giant stressball of work and home--with some great times wedged in the chaos.  I am ready for something different.

I asked E and Viv for their input for these goals.  Here we go!

1.  INITIATIVE.  I'm not sure how to measure this, but I want Elena to respond quicker to just about everything.  Getting to the table when we call her, starting her homework, doing what her teacher asks, moving toward a destination.  She waits until the third or fourth time we ask, and frequently until we get upset at her for lack of starting an activity.  She is late at school when leaving a room, starting work, cleaning up, etc.  My guess is part of this is learned, b/c until end of 2nd grade, she typically always had an adult helper for clean up, carrying, escort, etc.

2.  Summer of Independence.  We usually work on something giant during summer break--before it was No Carrying, then transitioning to crutches.  This year it will be self-sufficiency.  Dressing herself, brushing her own teeth, taking her own bath, making her own breakfast, etc. She does these things individually, but never together (due to time constraints and school).

3.  Have another stretching trial.  We'll be using the stander from now until her birthday in an intense regimen to try to keep her legs from getting too tight.  E has approved the plan.


5.  Have a playdate twice a month.

6.  Take a trip to visit a friend.

7.  Go camping in our new tent!

8.  Run a race.

9.  Go to an aquarium.

10.  Go kayaking.

11.  Go up and down the stairs, with one hand on the railing, the other free, regardless of footwear, on a regular basis.

12.  Do the cha-cha slide (or other dance) without crutches.

13.  Write a story/poem/comic and submit it to a contest (there are a few we like, either in the paper or on radio).

14.  Ride her bike (with training wheels) independently.  Meaning, if she has to brake, she does.  If she has to get on/off, she does.  If she falls, she gets back up and on the bike.  Right now, she's done everything but the fall independently, but with very close supervision.

15.  Hunt for shells at the beach--standing up, carrying a bucket.

16.  Try to FaceTime (or other video chat) with a friend.

New Years Goals for Vivian:

1.  Make her own breakfast (cereal, toast, or some other low-maintenance option).

2.  Put her laundry in a clothes hamper.

3.  Ride a bike without training wheels.

4.  Roller Skate with her new skates.

New Years Goals for Me:

1.  Have a regular exercise regimen.  It doesn't have to be the same thing every week, but the frequency of activity should be more than once a week.

2.  Do two large races.  I've already signed up for a bike race (ride, for me--I'm not racing).  I hope to enter a short triathlon as one of them (but we'll see).

3.  Reduce clutter in the house/clean the house.  I'm doing a good job on this, but I'm not finished.

4.  Make some sort of beach shoe for Elena to wear with her KiddieGaits.  I have some ideas we'll be testing out before our summer beach trip.

5.  Grow a garden for food and flowers.  We didn't get much to grow last year.

6.  Volunteer at school.

7.  Add enough fiber to our diets (specifically, Elena's) to try to eventually discontinue use of her laxative.

8.  Read five books (or more) this year.

9.  Visit a new city, with the kids, on a school break.

10.  Go out for a family movie.


Wednesday, January 1, 2014

Doodle Commenter Shout-out

I think the best piece of advice I got from a blog reader was from MELISSA, a woman with CP, from this post.


It was from 2012, but I remembered it a lot in 2013.  Some good advice, with empathy, and a little humor.  So thanks.