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.

Ambitious Summer: Here we go

Our "Ambitious Summer" plan involves a lot of things--therapy, more independence, activity, social interaction, and one huge one--FREE WEEKENDS, to do family time, or travel, or NOTHING. This is a big deal, b/c up until now, Elena's only free day was Sunday, and that was mainly spent getting ready for the school week.

E still has therapy 4x/week (2x Feldenkrais, 1x PT, 1x Hippotherapy). We try to make it to the neighborhood pool 1x week (typically with friends), and E has library time and community time (local happenings, like the Whole Foods Kids Club or library concerts/shows) and park playtime. We have our Fantastic Nanny Annette, as well as our facilitator S, and another helping hand or two (more on that later) to get the kids out and about and crazy fun.

Last weekend was Father's Day: Elena's present was to make dinner. I was going to do a separate post about it, but I forgot, so I'm just going to post a few pics here.

Taking the Order at "Elena's Cafe" (menu was included)


Chef at Work (she did the most of the cutting, spreading, and all the assembly)





We tried to let her carry the tray, but E's not quite up to that task yet, so she got some delivery help from Viv and I.

Dinner Smooches for the Best Dad!


Thursday we went to the pool (Dinner at the Pool night). Both girls were so excited about the pool! I tried to see if Elena could get in the pool by herself. I strategically placed two deck chairs as hand holds, and with me close by, she walked from our table to the rail, and holding on with both hands, she went down the steps into the pool BY HERSELF! She swam a ton (she looked tired!) in her swim vest. When it was time to get out, she was unsuccessful getting out by herself. She needed assistance due to fatigue, weight of the water, shivering from being cold, or any combination of those and she exited holding my hand to a chair (and warm towel) right by the pool. A+!

This weekend we had friends over for dinner and movie (Finding Nemo), and Saturday we went to the Splayground with another friend--and saw TONS of other people there! The Splayground had lots of kids--but with the Beach Walker, E had a great time. The other kids were curious, the other parents loved it and asked questions, and everyone had a great time.

(I will have to raise (raze?) the Beach Walker, as it needs to be a little taller. I'm working a new version in my head--one that comes apart in two pieces, to both better fit in the car and to be easier to "size up". Hopefully that will be done by the end of the summer.)

Sunday we went for a bike ride in our neighborhood (HILLS EVERYWHERE) in E's Pink Cruiser trike. I don't have any pictures, b/c downhill it was me running after her (and slowing her down the hills by holding the seat back), and pushing her uphill (ONLY if she was also pedaling--no free rides here!). We went to feed the geese--both kids loved it, and it was a nice short ride before it got too hot. My major observations are that Elena can really engage that trike--even on the hills, although she's not strong enough to do them herself right now. I also taught her how to operate the hand brake. The tension on it is very high, and her little hand can just barely span the handlebar and the brake, nevermind having the strength to actually squeeze it. She did do it once, but at the expense of losing control of the bike (Mom at the ready, so no worries). (I do have to work out a different pedal arrangement (same shown in the link)--this one is cumbersome and she needs more support on the right side.) E was VERY proud of herself--and, more importantly for me, this trip didn't involve packing bikes in a car. We'll be doing this a lot this summer, I think. I'm also contemplating this kind of a arrangement...

The Sprayground: The Beach Walker Strikes Again!

Last year, we went to one of our local spraygrounds (sprinkler + playground) for a birthday party. It was heartbreaking. All the kids were running around like crazy, having a fantastic time, and I'm unhappily wet, holding my girl's hands, trying to have her enjoy the fun while the other moms chat and eat cake. It was a rough day.

Well, one year and one Beach Walker later, how about THIS!!

Plowing through the sprinkler


Wet Face


E and mom in "mushroom fountain"


E runs through the sprinkler


Viv is soaked


E on the fountain before it erupts


E sprayground run


V sprayground


Without the Beach Walker, E would need one or two hands held at all times. She's so stimulated, and on her toes, that I'm sure she couldn't balance upright for more than two seconds. She wouldn't be safe with her wrist crutches either, for the same reason. I don't want her to wear her AFOs, b/c she can't stand in them without shoes, and we only have one pair of shoes. Before the Beach Walker, I hesitated to use her DME (walkers, loftstrands) in wet conditions b/c I was afraid they would rust (and most were loaners), and/or they would get slippery and dangerous when wet. And NOW--I can play with both kids at once! It's a miracle!

So far, my only complaint using the Beach Walker is that if she's going down a steep-ish hill, she can't stop herself--especially in bare feet. FYI--she also used it in the mulch playground, next to the spray area (picture not shown). She has not rolled it up curbs--I think a stronger, older child might be able to.