Monday, April 14, 2014

Let's Talk About CP

I didn't think things were different than usual.  Things were normal.  Well, normal for us.  But one day Theresa (our PT since E was 8 months old) said that she thought it would be a good idea to talk about Elena's cerebral palsy more often.  

I mean, it's not a secret.  We know it, she knows it, but...we don't mention it often.  Quite frankly, I didn't want to bring it up unnecessarily because I was worried Elena would use her condition as an excuse for things, which is something we just don't do.  But Theresa was persistent.  She thought it would be beneficial for us to "bring cerebral palsy up as often as possible".  

In her view, she thought it would help Elena understand why her body moves the way it does.  I thought it would give her a reason not to try as hard.  Theresa also said that by making it part of our everyday conversation, as often as possible, as easy as possible, would help Elena open up--to lots of people in her life--about living with CP.  Maybe not now, but maybe later, when communication might become more difficult.  

Elena and I communicate pretty well right now.  But I definitely welcome any advice that might help us understand each other as we get older.  

I spoke to Jason about it, and we both immediately got on board.  We started talking about it more often.  Peppering it into conversation, using it to describe why she is tight, or why breaks on road trips are really important.  Or why we want her hands to feel comfortable on her crutches, or why exercise and proper seating are important, or why her testing is different than her classmates.  

You know what?  It's been great.  A really, really great piece of advice.  I haven't experienced a lot of Elena instigating conversations about cerebral palsy, but I feel like they will come easier with this new approach.  She seems...more at ease, in a way, as if she knows I will be a better listening ear.  

If you have cerebral palsy, did your parents/caregiver/therapist do this?  What age?

Sunday, April 6, 2014

Spring Break 2014--ROAD TRIP!

Since I didn't have to be working seven days a week, and the kids were out of school, Jason took a week off and we decided to take a road trip for Spring Break Vacation.  We drove up to see his parents, otherwise known as Nana and Pop Pop, in New Hampshire.  We decided to break the trip up in pieces instead of drive all night, like we did when Elena was a baby.  We figured that the kids wouldn't sleep, and I worried about how tight Elena would be if she had to sit for long periods of time.  We stopped every 2.5 hours (or sooner) and tried to work in exercise along the way.

We started our trip with a slight detour--Jason was speaking at James Madison University.  So, we drove to Harrisonburg and dropped him off.  The girls and I had a few hours to kill, so we went to Luray Caverns!

The Cavern tour is approximately 1.25 miles of walking--down dark and windy paths (paved), and some impressive hills.  There are some steps and in many cases, a guardrail.  Still, the terrain was challenging (the hilly parts, mainly) but Elena was never worried about losing her balance and falling.  I was, but she proved me wrong.  She kept up with the group quite well, and walked the whole tour.  There was a chair lift (like the type you get in homes to go up/down stairs) and Elena rode that up and down to tour.  It saved her 70+ steps, which was a good idea.  

Kids loved it
I have a lot of pictures, but I only showed a few here.  Their favorite parts were the Wishing Well (not shown) and the Pipe Organ, an instrument that uses the resonance of the rock formations to play a song!


After Harrisonburg, we made the long trek to New Jersey where we stayed the night in a hotel room.  Before we arrived in NJ, we dined at a little restaurant called Rhubarb House in Hagerstown, Maryland.  (Jason loves the aggregate review Yelp!.  I never thought much of it until this trip--now I LOVE IT.  We don't like to stop at chain restaurants if we can help it, so we turned to Yelp! to find well reviewed restaurants/attractions along the way.)  It was rainy and nasty outside, and when we arrived the door was locked--they weren't open yet.  But they let us in anyway, and we had a fabulous time talking with the owners and had a delicious meal.  It was fabulous.  

After dinner we headed to our New Jersey hotel. The next morning we saw good friends in Poughkeepsie at Vassar College.  Our kids had a great playdate, and breakfast was fantastic!  We got back in the car and drove until lunch.  We ate at The Starving Artist Cafe in Lee, Massachusetts.  A beautiful little creperie, where every crepe can serve two people.  There was a great little folk music couple playing and the girls sang and danced, and even got a little lesson with a rhythm clapper. 

Live Music

Elena tried the Dancing Man!
Then we arrived in New Hampshire.  The weather had just turned nice--the week prior it was all snow, ice, cold and slush.  It was warm(ish) and the snow was melting.  The kids couldn't wait to see their grandparents.  We had an easy dinner, and relaxed for the night.  

The next day we headed off to a mall to get some exercise--mostly to ensure that Elena didn't get too stiff.  It was still cold and rainy, so we headed off to a mall and did a lot of walking.  

Orange Julius after exercising

We stopped at the neighborhood where Jason grew up, and visited his friends' parents who still live on the street.  They even had a playroom with toys that the girls could enjoy!

We had dinner with some of Jason's friends in town.  They have a daughter one year older than Elena, and we had a great meal with great company.

The next morning we headed to Jason's alma mater, the University of New Hampshire. We talked to some of Jason's business friends while walking around the campus, at least 2 miles.  The weather was beautiful and Elena kept up beautifully.

UNH Wildcats!

We took a small detour after UNH to the Hampton Beach.  We kept the destination a surprise--when Vivian saw the ocean, she was so excited she wanted to go in the water.  She whined she didn't have a bathing suit, so I told her if she wanted to go in, that was fine, but she couldn't wear her clothes in the water.  She stripped off her shoes, socks, and pants right there (while another family was playing in the sand with their winter coats on, mind you) and ran to the surf.

Vivian insists the water isn't too cold

Vivian still insists she is not cold (SHE IS!)

 After getting reclothed, we went down the beach a ways and found a cute playground.  Lots of stares with Elena's crutches.  No big deal, though.  Then back to Nana and Pop Pop's house for the evening.

Beach Playground

The next day we drove into Boston, to the Science Museum.  We took the subway ("The T") into the city, which the girls loved.  We had to walk about a half mile from the T to the museum.  E looked great.

Fog Tornado!

Plasma Tube!

 The big highlight was the Lightning Show.  There was a HUGE Van De Graaff generator as well as some impressive Tesla Coils.  We all enjoyed the loud and sparkly show!

Lightning Show was awesome!

Vivian's favorite exhibit was the one about space.  She thought the Gemini Capsule was her own personal refuge.

Gemini Bunk

Vivian LOVED her "spaceship"

We all walked about 5 miles to/around/from Boston.  Elena looked a little wobbly near the end, but overall she looked fantastic.  When we did stretches that night, she was looser than ever.  She was not sore the next day when we went to the Maple Barn (the end of syrup season) for breakfast.

Parker's Maple Barn

Sugar House--where they make syrup!
We had a great meal, and since we had to leave before tour time, they gave us a private little tour of the Sugar Shack and how syrup is made.  

That was our last stop in New Hampshire.  We broke up the trip on the way home with a stop at a unique resort in Connecticut.  It was a pretty fancy place.  The girls were on their best behavior and had wonderful manners at dinner.  The staff were on a first-name basis with the kids before we left!

Beautiful girl on a beautiful day at a beautiful place

Girls loved the Game Room

Our room for the night.  It was super cool!

We left later than we had expected that day...we were hoping to make one more stop in Hoboken but had to bag it b/c the drive home was going to be a long, rainy slog.  We took breaks every 2 hours or so for potty breaks or just to get up and stretch/walk.  We made it to my parent's house (Grandma and Grandpa's) around 7 pm for a late dinner.  We ended up staying the night with Uncle Andy and Aunt Melissa, which was fantastic b/c I was too tired and the kids were too cranky to make the short 2 hour drive home.

We finally made it home mid afternoon Saturday.  Our home sweet home.  Our cats were happy to see us (big thanks to the neighbors who helped take care of things while we were gone!) and we are getting back into the swing of things.

I admit, I was very very nervous about the idea of a long road trip--Elena tends to get super tight from prolonged sitting, so much that her movement is impaired for the next two days or so.  Or, she has problems with dehydration during the trip and gets constipated.  This time?  NOTHING.  She moved beautifully, never felt sick, slept well, met a lot of new people, and had fun. Vivian had to be carried a few times b/c she was out of gas--but Elena did not.  This opens up a whole new possibilities for adventures for our family.  It was a wonderfully different sort of Spring Break.  Now we have to figure out where our next road trip will be!

Big thanks to The B family, Luray Caverns staff, Rhubarb House, The Cliftons, The Starving Artist Cafe, Aaron at UNH, Kevin and Pat, The Trembleys, The Winvian, Nana and Pop Pop, Grandma and Grandpa, and Andy and Melissa for making our trip such a positive experience!

Friday, March 21, 2014

IEP Meeting Recap

I had to reschedule E's IEP meeting b/c I ended up severely ill.  (I'm still recovering, actually, activity-wise).  I'm still waiting for the final document to sign.

Elena has a fantastic group of educators.  We don't always agree, but I trust they have Elena's best interests at heart.  The only negative about this group is that there can be up to 7 people--and that can be hard to communicate well with that many people, so some ideas/issues get lost in the shuffle.

In no particular order, here are the highlights:

1.  Elena is expected to keep up with her class.  She rarely uses her crutches inside the school building, and can walk at a good pace if she is not distracted (she talks a lot).  She typically (but not always) will put her hand on the wall intermittently.  She is absolutely not supposed to use other people to stop (rarely does, but frequently walks into furniture or walls to stop when without her crutches, as "stopping in space" is a constant struggle).  When venturing up steps (there are a few steps within the building) or into a learning cottage (trailer) outside, she uses her crutches.  Stairs/steps are where E lags behind, especially descending.  E is expected to care for her crutches when she brings them anywhere, but the stairs are a bit of an issue...if she uses two crutches, with kids going in both directions on the same steps, it's a trip hazard.  If she lets them dangle from the arm cuffs, that's fine--ascending steps.  Descending, one frequently get stuck on a step (as her other hand is holding the handrail). Elena found a way to kick a stuck crutch down to the next step, but as you can imagine, it looks like an accident waiting to happen, and it takes extra time.  I recommended that they give Elena one crutch to go to classes within/right outside of the building (making steps easier) and to have her use it in her right hand (to facilitate total weight bearing on her right side).  In PE and recess she should use both crutches as she pleases.

2.  We discussed initiative.  Elena is slow to start every activity, and requires frequent prompting to get started.  This is improving a bit as she is becoming more responsible.  She is also slow to stop an activity; I still call this "initiative", as she waits for a private prompt to "clean up" or "pencils down".  Her teachers sometimes make her stop an activity early, which I don't like--but I completely understand, as we have to do that at home too.  We are seeing improvement with this, but it is at a snail's pace.  Sigh.

3.  We discussed her morning routine.  In the morning, the students have time to finish their work ("ongoing studies") or do some free time (I forgot the name for this).  Elena NEVER has free time, b/c she's always late finishing something.  I found out that Elena is also the latest kid to the classroom in the morning--because she was always last off her bus!  WHAT?  I think the bus driver/aide was trying to keep her safe with the swarm of kids entering school (it is dangerous for her), but it was taking time from her morning routine.  I felt horrible b/c I didn't know this.  It's now in her IEP that E will be the first one to get off the bus in the morning.  I balked at this, wondering if that wording was necessary...the principal countered "this is an IEP.  Don't mince words".

4.  Testing.  I didn't want to over-accomodate Elena.  No one does, really.  But given the technology piece (SOLs are all on the computer), Elena's previous test meltdowns, and her spasticity issues related to sitting for long periods, they suggested a ton of accommodations and recommend we work on taking them away as needed.  They are: 1)  paper/pencil tests instead of on the computer, 2) private testing sessions (1:1), 3) extra time (including taking a test over multiple days), 4) mandatory breaks every hour (offered at 30 min, must take one within the hour), 5) proper seating.  **I'll check if there are more.

5.  There's something in there about modifying homework (dictation, shortened assignments, etc.).  I don't love this one, but since this IEP could last 3 years (into middle school), they thought we should have this in place.

6.  Continued work regarding independence in the lunchroom.  She buys lunch on Fridays; she can now carry her tray with some things on it (including a closed milk carton, bag of carrots, napkins, utensils).  So far they haven't tried pizza on a plate or open liquids.  I can say at home she has dared to carry quite a bit on a tray--before I could stop her--and she didn't make a mess (I was surprised, relieved, and proud, in that order).

7.  E should carry her backpack to/from school.  She typically carries it, but has help putting it on.  The push is for her to easily put on/take off her backpack and be able to carry whatever is in it.

**I'll update this with other important highlights once I get my copy back.

Wednesday, February 19, 2014

Second Big Snow and SKIING!

Happy February everyone!

We have had a busy month.  Lots of school work, Valentine-making, and crazy winter weather.  LOTS of snow--and snow days off school!

This snow was perfect for making snowmen!

Three snowmen, actually

Elena was moving pretty well in the snow.  We left her crutches inside, and she walked around with a hand, or by herself (which was pretty impressive, as we got around 16 inches of snow in total).

E got to go on a fancy ride!

Knee Deep

We even let the girls stay up late one go night sledding at the neighbor's house!  This was a big deal.  School was cancelled for the next day.  Even when our girls can stay up late, they don't stay up too late past bedtime--E really needs her rest or she is a complete grouch.  Neither girl sleeps in late very well.  Anyway, the night sledding was beyond great--Elena would get up from her sled and walk back up the neighbor's steep driveway BY HERSELF for the next run.  It was AWESOME.

The snow couldn't have come at a better time.  We had planned a skiing day for the following weekend!  We set up a ski day with Therapeutic Adventures.  Elena hadn't been skiing for two years--and then, Vivian was too small.  This time, all of us got out there.

Elena started off four-track; skis on her feet, and skis on forearm crutches.  She had a facilitator, Jake, who was very patient.  Besides the four-track, Elena had a chest harness (to grab for leverage) and a "trombone", a sizeable metal apparatus that prevents skis from crossing (worn at the toe tips).

Four-Track; crutch skis are flipped up here

Last time E skied four-track, she was between a facilitator's legs, basically being held up.  This time, she was on her own, with a facilitator at the ready to support her via the chest harness.

It was a disaster.

There were two large inhibitory factors; one, Elena's left-side weight bearing meant she rode the right ski edge; and two, the trombone kept getting buried in the snow, causing her skis to get caught and turn around (as a unit, since they were bolted together by the trombone).  It took thirty minutes for E to get down the hill.  She had a full-on meltdown.  Jake handled it as well as he could--this experience was new for everyone, and no one expected it to start off so poorly!  Vivian and I tried to help as best as we could.  We left the crutch skis on the hill, and Jake supported her down the hill between his skis.  Halfway down he also took off the trombone.   I hugged Elena, took off her skis, and took her inside to regroup.

E calmed down quickly.  I told her that this was a work in progress--and sometimes things don't work out the first time.  We ate an early lunch, and then I talked to Jake.

I asked that E get less support--she tends to lean into any support she's given.  Since she needed to really push through her legs, I told him to support them the least.  I also gave him a few voice cues, and we all decided E would use a pole--I had been using one with Vivian, and it was working quite well.  I didn't think it would be successful with E and just one other person--but with a helper on each side, maybe.

E had a positive attitude when we went out the second time.

Pole Skier!

Second time's the charm!  E was fantastic!  Jake and Avery (pictured above) helped E ski down four times in a row (two was the most she had previously ever done sequentially)!  She had no other help besides the pole (no trombone, no tether, just the pole).  She did wear her harness, and they did use it when she got tired (after the fourth run).  We went inside for our second break!

Viv and I are the upright twosome here

Someone likes it!
After our second break, we tried to go out again, one last time.  By then, the sun had gone down and it was noticeably colder, especially on the lift.  It was also much more crowded, so there was a long wait time standing in line.  Elena made it halfway down the hill and said she was done.  She got a carry down the slopes and we started to head home.  Vivian was done too.

Overall, this was a great experience.  Elena's progress was HUGE.  I don't think she realized how much less support she got this time than she got two years ago.  And if all we need is another skier and a pole?  WE COULD GO ANY TIME WE WANTED.  We wouldn't necessarily need adaptive ski staff.  We LOVE Therapeutic Adventures--they are wonderful with our family, and are so patient, kind, and positive.  I just didn't imagine a ski trip without them.  But now, I actually can.  Isn't that GREAT?!

Huge thanks to the Therapeutic Adventure Team--Mark, Avery, Sean, and especially Jake.  Their patience and encouragement is astounding!  

Eye Checkup and First Big Snow!

Well, I'm playing catchup from last month.  January was rough.  I blame it on third-grade tempers and spasticity, which doesn't always mean the best of things.  Still, we had some highlights...

We went for an eye checkup at her opthalmologist.  E still has two eyes that don't like to work together.  That's all good--I'm happy as long as things don't seem to get terribly worse.  One of her eyes are farsighted, and has changed a bit.  The other might have too, but in general, Elena's eyes are holding status quo.  She gets a small change in prescription.  

The big news during this trip was we were due for our first big snow.  We've had some snow this season, but either it didn't stick, or it was a slushy mess.  I didn't want to miss this I packed EVERYTHING.  Snow gear, sleds, gloves, hats--and kept them in the car.  We were ready.  

We ended up at her appointment super early so as to not get snowed out--and then we got home in time to have lunch and get outside in the awesome SNOW!!!

Ready to go!

The snow was cold and dry, so great for sledding but not for making a snowman.

Angel girls

We wen sledding right outside Grandma and Grandpa's house, but that wasn't we drove a short way to a popular sledding hill.  The girls had a BLAST!  (no pics/video--it was cold and pretty labor intensive for grown-ups).  We stayed an extra day before heading home.  Before we left, E and Viv helped wipe off our car and Viv helped Grandpa shovel the driveway.

Grandpa's little helper

Thanks Grandma and Grandpa for letting us stay with you before, during, and after the storm.  Your hospitality and snow help were wonderful!

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!