Family Camp at Camp Holiday Trails

I've written before about Camp Holiday Trails, the local camp for children with special health needs. We've had a blast attending Family Day in the past, which is a single-day event.

This year, we decided to do Family camp!  Since we just had a beach vacation, Jason and I didn't have lots of time off work...Annette came with us, and I left during lunch and rest time and Jason visited when he could.  We got around the camp by golf cart or E used her crutches.

There were several other families (six?), all with children with different needs.  Again, Elena was the only one with an obvious motor impairment (although, not the only one with CP).  I am constantly amazed at the staff--the counselors are always ready to help, always ready to involve Elena, and everyone has a fantastic time!  Even in the summer heat, or the sudden rainstorms, or with challenging events--nothing seems to intimidate this camp.  They are incredible.

Challenge course!  Elena decided to try the rock wall on her own this year.  In years past, she's had someone right with her during the climb.  She was the only kid in a full-body harness (with the exception of Vivian and her friend A, both of them 3 yrs old).

E on the way to the top

She did it!

Vivian is ready!

Vivian made it a short way--her feet slipped, and she didn't like being suspended by her harness.  She was DONE.

After that, the kids made up their own carnival games. They used cardboard, paint, cups, ramps, dress-up clothes--anything they could find.  At Elena's suggestion, we made "Pirate Golf", where you try to putt a ball into a pirate ship.  At the end of the day, there was a great carnival celebration!   The kids got tickets for playing in each other's games, and they could redeem these tickets for cool prizes.  Everyone LOVED it!

Stephen came to the carnival!  WE LOVE STEPHEN!

Viv playing Pirate Golf

We also got to tie-dye shirts for our family.  The girls enjoyed picking their own colors, and we got to wear them home on our last day at camp.

We had a waterfront adventure--both girls liked riding in a canoe!

E's ride

"Fearless" Vivian at the front of the boat

 We went fishing!  The girls weren't patient enough to catch one, but I did!

Catch of the day

We also used the paddleboat.  E was disappointed that she couldn't reach the pedals...she was looking forward to helping me power the boat.

one more ride

Every day there was also a free swim time in the pool.  Both girls swam every day.  Vivian preferred her swim vest (she was the only one to use one, besides E) and Elena ended up ditching hers after the first day.  The shallow end of the pool was only 2 feet deep, so E could touch the bottom.  That didn't mean she was safe--if she slipped, she didn't always remember to put her feet down or try to swim up to the surfact, so I had to be right next to her and extremely attentive.  She made a HUGE amount of progress in those three days--from needing a Mommy rescue every 5 minutes or so to only needing one or two every half hour.  She also did a great job swimming for a few feet (her version of doggie paddle)  while wearing goggles, and enjoyed doing this back and forth across the shallow end without drinking too much of the pool water.  (I need to get the kids swim lessons, but I haven't been able to fit it in yet this summer.)

Both girls got to try archery!  Here is Dustin helping Elena.  I assumed I'd be holding her waist, but instead they grabbed a chair for her--it was a great idea.  Elena had a hard time pulling the bowstring all the way back (lots of kids did), but she was able to hold the loaded bow and release the arrow, hitting the target!

Archer Elena

Vivian needed more help, but still she loved the experience.  She was SO proud of herself!

Archer Vivian

We all sang silly songs, and enjoyed a last campfire.  We sang silly songs, and made a "wish boat" where we had to whisper a wish into the boat.  The boat had a candle, and we lit it and set it free.  We had lots of wishes...Elena wished she could be in the olympics, Viv wishes she can swim fast and that she is Spider-Man, Elena wanted to swim without a vest, and all of us made a wish to come back next year.

Campfire Cutie

S'mores with Katie

Huge thanks to Katie, our family counselor, and to the rest of the CHT staff.  Katie helped take care of E and Viv, especially when I had to be at work, or in the pool, sometimes even at bedtime.  And thanks to Annette, who joined our family for camp days, even though the summer heat isn't her favorite thing!

E, Viv, and Katie

THANK YOU CHT!  WE HAD SO MUCH FUN!  WE'LL SEE YOU NEXT YEAR!

Beach Vacation

We just got back from our beach vacation!  And what an amazing vacation it was--beautiful beach, very warm water, lots of family, wonderful weather--a well deserved break with the best kind of company.

(I have some great pictures, courtesy of my sister and Dad!)

The beach house was less than a block to the beach--too long for E to walk it without her crutches (not getting those sandy!), too short to drive (sometimes).  E used her beach walker some of the time, or got a piggyback or wagon ride.  The closest beach access point was not handicap accessible (more on that in a minute) so there were a lot of steps--Elena did most of them when she wore her beach shoes (but they got so full with sand they became a problem and we opted to carry).  

Once on the sand, E was more independent than ever.  A dream come true.  She did use her beach walker, but not much.  We did get a few questions from vacationers (one of them a pediatric OT!).  In general, Elena walked on the sand (with or without a hand) or crawled (if around tidepools).  I'll admit, her gait looked pretty bad, even painful at times.  But she was independent and she enjoyed herself, and she sure does need a break, so I let her do it her way a lot of the time.

Girls loved the tidepools!

The Beach Walker got left behind a lot this year

Viv and the lounge-a-gator

Making a pool is tiring

"Baby whales"

Since Vivian is older now, and E's mobility has improved, I wanted to try a few new things at the beach.  One of them was having E ride a wave...which at first, petrified me.  She can now right herself in a swim vest, swim independently in a swim vest, and even swim a few feet without one.  But I was worried about waves and the current.  I thought about it a lot, and decided with the right supervision, water depth, and gentle waves, we could do it.  

E on a skimboard

Skimboarding was one of Viv's favorite activities!

Skimboarding with Daddy

Elena loves to "Wave Jump".  I'm glad she likes it, but it is REALLY hard on my back.  

Ouch

Viv jump on the way to another wave

And now...my favorites--kids and I CATCHING A WAVE!

Vivian

Vivian

Elena and I wait for the right one

Elena

Elena

Vivian

Elena

E cant' wait until the next one

Vivian

 Out of the waves, we had all kinds of fun too...playing with family, including cousins from Ohio!

Pool Party!

Cousin catepillar

E and R playing chess

Puzzle

Sorry championship (insert pic)

And another personal favorite of mine...Bike riding!  ON THE BEACH!  I took the trail-a-bike down the handicap access ramp a few blocks from the beach house (it was still really close).  We just made it around the corners...the trail-a-bike is pretty long, and we need a large turning radius.  Elena was strapped in and I walked the bike in the parking lot, on the ramp, and in the deep dry sand.  I was sweating...it was hard to keep the bike up in the slippery sand, but I did it.  It was worth it.

Sand Riders

And some of my favorite pictures...my kids, both of them--walking--on the beach!

Family

Sisters sitting in a W (verboten, but they did it anyway)

Walking Together

Elena on the beach

Huge thanks to my parents for making this beach trip possible!  I couldn't have handled the girls without help from Aunt Kate and Uncle Andy (and Ms. M), and it was wonderful to see the Ohio crew of MA and Hawk, and Matt and Alli and the kiddos!  Thanks always to FAS for making the trip from New Orleans--it is always great to see you!  THANK YOU!  

Elena's Disability Awakening

This post has been a long time coming.  I'm not even sure how to tackle it, so, here goes...

I know I've mentioned that the fact that Elena has cerebral palsy is not a secret.  She knows her diagnosis,  and she knows she is different.  We don't mention cerebral palsy or CP a lot, mostly because E is a smart girl, and I don't want her to start using it as an excuse.  I don't explain her disability to others often, because I expect her to do it, in her own words (whatever words she wishes to use).  Sometimes she does, and other times she tires of looks and stares and goes about her business.

Some things have changed, though.  Before summer break, Elena's adaptive P.E. school aide mentioned to me several times that I needed to have "the talk" with E regarding her disability.  I didn't understand this, b/c the fact that E has CP is not a secret among us, nor does she seem overly upset about it.  It just so happens that Elena does not like her time with the P.E. aide--for several good reasons, none of them being that M. is not kind or considerate or knowledgeable.  So M. saw a different side of Elena, and assumed (correctly) that it was related to the fact that E has CP.  M. gave me lots of really fantastic books, listed here--and E has read some of them.  She didn't feel like talking much afterwards; she felt like playing, so that was the end of it.

I got a video from our wonderful Coach Tom; I haven't found the right time to share it with Elena.  E's seen a few youtube videos of other kids with CP, but not many.  One type of video that does resound well is the commercials for the 2012 Olympics in London; here they show the Olympians and Paralympians and it is wonderfully fascinating.  E and Vivian LOVE the Olympic trials, and I really hope that we get some coverage of the Paralympics.  It fits so beautifully well with what we always tell Elena:  There is always more than one way to do something.  Sports are no exception, and that really resonates with her and she seems more proud than upset at her athletic attempts.

One phrase we get A LOT of these days is "why did that happen?", regarding a fall, or a trip, or an unexpected slide.  At first I thought this was a complaint, a "why does this always happen to me" type of whine, where she is just waiting for me to blame it on CP so it gives her permission to do so.  Our PT suggested (after a particularly trying session) that Elena is curious about the way her body moves, and we should answer as such (within an understandable vocabulary).  So, now when E says "why did I fall?" we try to tell her that while it is true that certain activities are more difficult (stopping, stairs, carrying), it just means that she needs to really be attentive and try to focus on being slow, being safe, making a good choice (going around legos on the floor instead of plowing through them and falling on them, etc.).  We are trying to build some accountability for her falls, while at the same time, understanding that she's a KID--and most kids don't have to think that hard about how they are going to move.

Exposing Elena to others like her, from an early age, I believe has helped immensely.  The Holiday Card Exchange, with the pictures and stories, was wonderful.  To Danielle, Earl, Oia, and others, the (birthday) cards were fantastic.  Danielle, E listened very intently when I read her your letter--thank you SO MUCH.  Having a friend with a disability really struck a chord with Elena, in a great way.

So, in essence, we haven't had The Talk.  But we regularly celebrate differences, offer encouragement and support, and mention how much we love our family and friends, and try to keep an open dialogue--be it about feelings, aspirations, frustrations, or silly ideas.  Vivian is a typical younger sister, in that she tries to emulate Elena--whether it be using her crutches (and falling badly while trying), or wanting to use her chair, or stander, or want to be involved in therapy.  It's a typical family dynamic--and that's a celebration in my book.

I've always felt like that sentiment "well, I love (so-and-so) and I wouldn't want to change them for the world" was garbage.  Seriously.  I mean, if I could magically take away E's disability, would I?  OF COURSE I WOULD.  But if that involved changing who Elena is...starting over...no way.  She's an incredible person, a wonderfully engaging girl, a real gem of an individual--the way we feel about all our children (as we should).  I hope that Elena realizes this.  Maybe not now, maybe not next year, but some day, I know she will celebrate her differences and know that her individuality--though sometimes hard to bear--is one facet of the brilliant diamond of herself.

Summer Roundup

We've been out and about this summer!  As soon as I put up banners with Summer Activities, Elena's been asking about some of them each day.  So, in no particular order:

Run A Race
In June, there was the Summer Track Series where there was a kid's track races (with/without sibiling/adult participation), run by some local running gurus.  I had inquired before about training programs, but got a lukewarm response.  The tagline for these races was "runners of all abililites welcome"--which, I guess, meant kids that could run.  Well, Elena CAN run.  Needless to say, we weren't what they were expecting.  We showed up and registered.  Everyone would get a ribbon at the finish of each race.  My only request was that Elena and Vivian ran in different heats (I didn't want competition between siblings).  They ran by age.  That's no big deal--in all honesty, Elena would be last in almost any age range.  That is okay.  I just wanted to her to finish, and be proud of herself.

Viv's 100m dash!

Elena's 100m dash!

In the past, E has normally taken 5-6x as long as her peers.  Her 100m dash time is 3-4x, so that's a huge improvement!!

We also entered the parent/child 2x400.  I thought it was a 2x200 when I signed up for it, so I panicked at race time--we ended up doing a special race where Jason and I (paired with Vivian and E, respectively) did a 600/200 race, with the kids doing the second leg.  Needless to say Jason and I were the slowest adults at the meet.  But, I thought, that was a good example for the kids--we had a great time, no matter the place.  Having E and Viv do 200m vs. 400m was a good move--they ended up finishing just behind there peers, but they could still see them and were obviously in the same race.  Everyone got a ribbon, and the girls were very happy!  And a special thanks to the kids who came up to Elena after her race(s) and told her "hey, good race!".  Class acts, those kids!

Play in a Sprinkler

Elena has never been through a sprinkler until now.  The difficulty with water, no shoes, grass, and no handholds is enough of a problem--never mind the fact that we don't have a sprinkler.  Thanks to Pinterest--we decided to make one--and make an event of it.  Introducing...

The Kid Wash!

inaugural wash

E likes it!

everyone wants a turn through the wash (even parents)

After phase one, we broke out the slip n' slide!  Most of the kids liked it--it was hard for Elena to take a running start, so she had help.

big thanks to Antonio to keeping the slide smooth

Phase three was popsicles...total success!

Summer PT

Elena is learning more of the actual riding portion during hippotherapy--here is E's most recent development--posting!

At the end of her lesson, Viv normally gets a short ride.  This time, they got to ride tandem...what a sweet treat!

Viv is beside herself

smiling the whole time

Clemyjontri Park

We planned on visiting my brother and some friends last weekend; since our rendezvous was late, we used the day to visit a new park.  Clemyjontri park is nestled in Fairfax, Virginia--and it is a gem of an accessible park!

We got there at about 2pm, which is normally Vivian's naptime.  It was warm, and there was no breeze.  The kids had been in the car for a few hours, and needed some exercise.

They have a huge carousel!

Elena's first stop at the playground

Viv and Dad riding

The climbing/play structures are wonderful.  Ramps galore, small steps, supportive swings, low-level bars, you name it--this park has it.

Walkin' around the vehicle section

going to the playground

Besides the carousel, Elena's favorite parts were exploring the jungle gyms, and using monkey bars that she could reach.

One type of monkey bar

Elena's favorite type of monkey bar

Rings!

Big hopscotch outside the kid maze

tire swinging with a new friend

Rockers

Elena was the only person I saw with an obvious physical disability for about an hour.  Then we saw a girl in a little purple power chair, on a "racing track" with some other kids.  She'd drive (fast, I might add) and the kids would race her in their "lanes".  Pretty adorable!

Everyone loved The Bus!

seriously, tons of kids piled on after this picture

"This is the AWESOMEST park EVER!"

Last carousel ride

Unfortunately, the heat got the best of us.  Elena used to totally wilt in the sun...she made a lot of progress with her outdoor endurance and heat tolerance last year, which was our first real year doing anything outside.  Still, without a breeze, the sun exposure was a bit much.  I figured she would last a little over an hour, which was just about right.  We'll definitely be back here--but we'll have to wait until the summer months are over, I guess.