Summertime

I don't know where to start, it's been so busy lately!

 At Elena's last week of school, I got to visit!

 

E and her reading buddy, A

E has changed so much this year.  She is a great reader and very imaginative.  Her favorite class is PE (physical education).  Not only has she progressed wonderfully academically--physically she is much stronger, faster, and her stamina has really improved.  At the beginning of the school year, she required her push chair to make it through the school day.  By the end of this year, she only uses it on fire drills and maybe on a field trip!

E in the school's Japanese Garden

We are looking forward to summer playdates with her classmates, as well as E's online attempt at Edmodo (sort of like a school Facebook for kids).

Elena went from being a Daisy to a Brownie!

Bridging to Brownies

 Last Day of School! 

a little chalk surprise when E got off the bus!

Summer to-do list!

Let's Do This!!

A Girl Like You

I had the opportunity to finally connect with a family that lives a few hours away.  Josephine and Gabe are the parents of three lovely children; their eldest, Avery, has cerebral palsy and is a year younger than Elena.  Josephine contacted me through this blog (contact info on the side panel) and we've been emailing off and on.  She was one of the first to join the Holiday Card Exchange last year, and we have their family picture on E's buddy board in her room.  

Avery recently started seeing our Feldenkrais practitioner, Keith.  They had an appointment earlier this week and she suggested a playdate for the kids.  ABSOLUTELY!!

It was a gorgeous day, so I suggested we meet at playground close by.  This playground has a water splash park and climbing structures and swings--I've mentioned it here and here.  

Elena had met Avery before, briefly, at Keith's.  She was very excited to see her again!

E and Avery

It was everything I ever wanted.  A chance for Elena to play with a girl who understands her life.  They immediately started talking, chatting their way to the park.  They looked at each other's equipment, and talked about their walkers/crutches/wheelchairs, with no "weirdness", or judgement...I dare say they were excited to talk about those things with each other.  And other things, of course.  

Walkers in the park

Viv is cold and excited

The similarities don't end there--Avery is the eldest sibling in her family also, and her eldest brother is Vivian's age.  I felt they subconsciously also had a common bond; a sister that moves differently than they do, and all the peripherals that come with that. 

Viv and Brogan

And to top it off, E and Avery weren't the only two kids with CP at that park.  Another girl (quite young) that we had met at Kluge was also there, crawling around the sprayground enjoying herself.  It warmed my heart.

When the sprayground got chilly, the kids moved into the sunny part of the park.  

Swings

E had thrown her crutches by a bench, up the hill (even though I told her to "park" them nicely).  We were summoned by one of E's classmates, L, who recognized E's crutches and was running all over the park looking for her.  There was lots of squealing--pretty adorable, actually.  After it got too hot in the sun, time to cool off...

Beach Walker 2.0, back in action

Vivian on the water attack

E retreats as L readies her water cup

After another visit to the sprayground, the kids started getting hungry.  We all opted to go to our favorite pizza place.

Tired and hungry

Avery used her manual wheelchair, and we all sat outside.  The adults actually got to sit by ourselves for a little while (!), where we freely chatted about diagnoses, surgeries, therapy, and all sorts of other things--including Josephine's initial reluctance to Avery's chair (kind of where I am right now), which I found very helpful.  And on the subject of wheelchairs:  while we were eating, two women came to the restaurant--one in a power chair, and another in a manual one.  Avery and Elena immediately started chatting them up--it was one of those moments in time that I want to keep forever.  To me, it felt like the veil of disability vanished.  No wondering stares, no pity, no insecurities, no reservations.  Pretty amazing.

Seven

*I wrote this on the eve of E's birthday, but now it's out of order b/c Blogger had a facelift since my first draft.*

April 30th, 2012

Dear Elena,

Today you are Seven years old.  I can't believe how much you have changed!  Your features are more grown-up, you are a fantastic reader, and the best big sister EVER.  

Notice Anything Different?

New Ears

New Smile

You chose "Under the Sea" as the theme for your birthday party.  It started off with a collaborative painting, with potato stamps and paint colors that you helped mix!

The Masterpiece

We started with "Goldfish Says"--a version of Simon Says. Then I showed a little movie of life under the sea, and everyone yelled out animals they recognized.  I also showed some examples of ocean camouflage, including an amazing octopus!  After that everyone enjoyed some pizza, and then we started our featured game...Sardines!

Sardines is a game of hind-and-find.  The Sardine hides, and everyone tries individually to find them--silently and independently.  When someone finds the Sardine, they hide with them, until everyone is packed in the hiding place.  We played it throughout the house.  This is a big deal this year because you can navigate the whole house by yourself--we are so very proud of you!  Everyone loved the game!  After that we enjoyed mini Ocean Blue cupcakes.

Elena, you are still the hardest working kid I know.  You apply yourself in school, you are hard-working in therapy (even though you get frustrated with yourself), you are courteous at home (most of the time--you are seven, after all).  You constantly amaze us with your progress, your humor, your writings, and your stories.  We love you always, in all ways.  You asked us for something special as a birthday gift.  Daddy and I know you are ready for this responsibility.

Fishtank!

Happy Birthday Doodle!

Love,
Mommy, Daddy, and Vivian

School of Hard Knocks

Elena's had a tough week.

She's been a little "rickety" lately.  Less control (or effort) when stopping in space, knees buckling deeper, on tiptoes constantly, leaning hard into her crutches to stand.  It's a 'gross motor regression' phase.  I see this more often when she's growing, when she's sick, or when she's overly tired.

Because I know this, I try to anticipate growth issues by planning doctor's visits in advance, or try to give her breaks or rests in the hopes of making this period as short as possible.  I'm behind schedule.

Elena had a bad fall at home this week.  Vivian had moved her bed stepstool to her dresser, and for whatever reason, Elena "twist and fell" (most likely because she only had her left foot down when she lost her balance) and slammed her head, just behind her left ear, on the stool edge.  She managed to get out with a nice bruise and a bad scrape behind her ear (it would have been worse--her protective response when falling is decent now).  But, we found out later, the location of her injury made wearing her glasses painful.  (Her glasses prescription is mainly for esotropia; one lens corrects slight farsightedness.)  I figured, two days without her glasses should let the scrape heal enough to wear her glasses again.

The next day at school, Elena had two more falls, resulting in reinjury behind her left ear and repeated bruising on both forearms.  One fall was the result of a student running from a bee--Elena said she "tried to move out of the way" but the collision seemed to be a rough one.  The other fall I think was due to carelessness/tiredness/lack of awareness on Elena's part, or classmates, or both.  Either way, those falls are confidence crushers.  Falling with loftstrand crutches is a messy business...because of the cuffs, E's arms are pretty banged up, and they complicates her protective response--regardless of the impact terrain (playground steps?  Black top?  Probably not grass...).

She was a mess at home...just really upset.  Embarrassed about falling/crying in front of her classmates, frustrated at the student(s) that caused one of the falls, sad that she has to deal with this, and physically hurt.  We tried to be supportive, caring, loving...but aside from that, what can I do?  I started thinking...

She's probably growing.  Just last weekend I had raised her crutches up another notch (I should have done that SO much sooner!).  She's dragging her right foot so much it's wearing out the sole of her shoe...maybe she needs a different shoe?  Her old pair didn't do this as quickly--but she also wasn't moving as much or as fast as she is now.  Either way, I figured E needed a new pair of shoes.  And probably a new pair of SureSteps (the plastic support part that goes in her KiddieGait in her shoe)--her orthotist said she didn't need them right away, but I bet she's overdue now.  And I'm sure the lack of glasses wasn't helping the fall situation.

The next morning (today) wearing glasses was out of the question...she was more swollen than before (nothing serious, just really uncomfortable for wearing glasses--this injury is just really in a bad spot).  Her teacher Mr. M and her aide were extra vigilant in trying to avoid another fall.  E did fall in P.E. today-but it was most likely due to carelessness on her part (didn't slow down before entering a room full of running people--she knows better) but that didn't seem to faze her, she was fine.  Mr. M did tell me that Elena nearly walked right into a table--which screams to me that she needs her glasses on--she probably didn't have any peripheral vision on one side b/c one of her eyes drifted.  *sigh*

One of our mantras is "Everybody Falls".  Not everyone is peppered in bruises, though.  Elena prides herself on being a "tough cookie"--which she totally is...but girl needs a break.  Here's hoping for a bit of an injury reprieve before summer vacation!

IEP Time

I know a lot of parents are very apprehensive of IEP season. I've been there...but not lately. Elena's educators seem to anticipate my every move. They are incredible.

SO--in case this helps anyone else out there, here is a condensed version of E's IEP.

Elena is in mainstream first grade, with what I consider an exceptional teacher. Mr. M is calm, patient, and allows/facilitates the kids to try to creatively solve their own problems--whether they be academic, personal, social, or physical. He follows curriculum and teaches them critical thinking, which in my opinion seems to be buckling in many classrooms under the pressure of standardized testing.

All parties believe that Elena is capable of participating in all activities in the general education setting. The focus of her IEP stresses "access to the curriculum" due to orthopedic impairment. Her goals relate to keeping physical pace with her classmates--transport within and between classrooms, using utensils (eating, writing, cutting, etc.), getting seated, staying focused, etc.

Elena's needs involve adult guarding for safety when navigating steps and appropriate accommodations during physical education, playground, and transitions to address her balance and mobility issues. As she gets older and more capable, she needs less help, and is nearing independence for most of the school day. Stairs, carrying, physical education and recess continue to be the areas of greatest need.

The following adaptations/modifications are required by her IEP:

1. Adaptive seating (cube chair for circle time, chair with foot support for classroom and lunchroom (tables are higher in some rooms).
2. Assistance to have her shoes/braces repositioned as needed.
3. Close proximal monitoring for transitions in/out of chairs/stroller/wheelchair as needed.
4. Extra time for transitions.
5. Guidance or assistance carrying items, managing clothes and equipment.
6. Individualized support for safety for all transitions outside of the classroom (including bus dismissal and arrival).
7. Physical support, adaptations and monitoring for access to PE curriculum.8. Stroller or wheelchair available for extensive transitions.

IEP goals for Elena in the upcoming year:

1. With support (hands held or wall) E will demonstrate a jump and landing without falling at least five times in a 30 minute period.
2. Elena will ambulate up and down 8 steps with one handrail and an adult for stand by assist keeping pace with her peers moving in the hallway.
3. Elena will consistently ambulate in the classroom without her loftstrand crutches demonstrating adequate deceleration and balance.
4. Elena will ambulate to/from lower playground safely with her loftstrand crutches and access climbing playground structure and slide with stand by assistance within a regular recess period.
5. Elena will transition from a seated position on the floor by half kneel to stand with hand support.



AND, if that wasn't enough, E's current first grade teacher will be "looping" with her class--meaning, he will be her second grade teacher as well. I am really looking forward to this arrangement!

Dogwood Duathlon

After Elena and Vivian's success in their Kid's Dash, I've been looking for another opportunity for them to 'race'.  There have been a few...but some were for older kids, others were in fields, or the timing was bad.

Then I found the Dogwood Duathlon.  It's an event for kids 7-16.  For Elena's age group, the distance was a 1/2 mile run, 2 mile bike, and 1/2 mile run.

Now...I know that Elena can do a 1/2 mile distance.  I don't expect her to run it.  I also didn't expect her to do it twice, or with a bike inbetween.  But I inquired, b/c I wondered if we could work within the confines of the race to create a successful experience for Elena.

The race coordinator was wonderful.  She wanted me to know that Elena was welcome, and she even had some ideas to help make it a positive experience.  Her first suggestion was to make the running distance shorter.  I wasn't able to see the course until the night before the race, and it had some pretty big hills--so the shorter distance was key.  They made a special turnaround cone for Elena, with a big "E" on it.  Her running distance was 1/4 mile for each leg.  Because it was basically one big hill, I decided I would walk it with her--especially if she fell.  The coordinator also suggested a shorter bike course--but since there were hills, Elena wouldn't be able to bike solo; currently she cannot scale up a hill, and does not always brake sufficiently by herself when on a decline.  We decided to do the entire bike leg, together, on the trail-a-bike.  I was the only parent allowed on the course with a participant.  That was a little odd, but I think the others understood our situation.

Team Doodle before the race

Sure, Elena got some looks when we arrived.  Some stares.  The volunteers knew all about Team Doodle and were all wonderfully supportive.  The other kids, once the stares were over, were too.  

The starting line was worrisome...lots of legs and arms moving around a crowded space, and oftentimes E doesn't walk in a straight line.  I served as a buffer so E didn't get knocked.  She walked down the hill, and she ran most of the uphill.  I have to say...I wish I had a video.  It was fantastically inspirational.   Everyone cheered for us!  And since E's distance was shorter, we managed to be around other race participants--not being last was a new experience for Elena.  Last position isn't something we stress, but normally, Elena is so far behind speed events she never enjoys the thrill of the group.  This was something new--and helped E be a part of something special.

We had some help mounting our bike, and then we were off!  Elena loves going fast, and she considers it her job to pedal when I pedal.  I can feel her pushing the bike as she pedals--I love it.  She does tend to hold the handlebars hard to steady her body when she is trying push her feet, which can make the bike hard for me to balance at times.  One of her feet came out of her straps (I strap her feet to the pedals so they will stay on) so I had to dismount and fix it.

The last running leg was the most difficult.  She was out of breath after the bike, and sat for a rest and some water before continuing.  She was a little "rickety" as we left the transition zone--but the cheers buoyed her up and her form improved.  Again, she walked down to her cone and turned around and started to run.  

The finish was slightly off course, up a path through an inflatable arch.  The path was thin, so we waited for a bunch of runners to pass.  As we got on the path, everyone was cheering-Elena was BEAMING with pride!  It was AWESOME! 

My Little Duathlete!