a blog about raising a daughter with cerebral palsy and learning unexpected lessons along the way

Monday, June 25, 2012

Short and Sweet

It's officially summer and the girls and I are busy living each weekday without a plan in place. We wake and unless therapy is on the schedule, we do whatever we please as we please to do it. Popsicles for breakfast and watermelon for lunch. We're taking it easy and staying wet. But still, these busy little bodies that I am responsible for each and every second keep me hoppin'. And quite tired. Once the scent of sunscreen has been bathed off and replaced with Johnson and Johnson's and each are cozy and (hopefully) sound asleep under their favorite blankies for a long night of sweet dreams, I'm done. Tapped out. DONE. I sink into the couch, catch up with the most wonderful husband, and wish there was more left in me to pound out a coherent post. But most nights, there just isn't.

I wish I had the energy to sit down and tell you that Oia's new speech goals from Nancy Kaufman arrived last week in the mail. Also, in the mail arrived our new K-SLP Workout Book and Kit 1 cards and all 7 one-on-one sessions between Oia and Nancy arrived on DVD. Last week felt a little like Christmas when Santa brings everything on your list.

I wish I had the energy to tell you what a tiny miracle the K-SLP method has been for our family. In a nutshell, we are scripting and it is working. Totally working. The list of new words that Oia has spoken since camp at KCC would no doubt end up more long than she is tall. Some spontaneous, some from scripting. Beautiful, beautiful words. She begs to read the Workout book multiple times a day saying, Read me, peez... Read me, Mommy, peez. How cool is that?

I wish I had the energy to share with you that our sweet Esme is now mobile. Crawling everywhere, opening everything, and eating all in sight. It's baffling to witness. And it's inconceivable that her mobility has come without the aid of a therapist. And even more mind blowing that in one effortless motion, she can move from back, to tummy, to hands and knees, to sitting, to pulling up onto her knees with the intent to stand. All on her very own. Add to the bag of milestones the fact that she is speaking her first words (Momma, Dadda, uh-oh, dog) and now you've got one really amazed, blown-away Mommy experiencing Italy. What a neat place.

And I haven't even had time to share a word about Father's Day, which already seems like forever ago. We celebrated with a picnic by the river. Rob's first Father's Day as a Daddy of two. The Daddy of two very fortunate and unique girls. A Daddy who works very long, often stressful days, but one who still comes home each evening and helps with bathtime, simply because he wants to. A Daddy who unknowingly drives to work with a bucket of sidewalk chalk on the bumper of his car, and returns home with said chalk in hand and a huge smile on his face. A Daddy who asks to put the littlest to bed just so he can have some quality time with the one who seems to be growing up way too fast. He gives so much. And he rocks. I couldn't do a lick of this without him.

I know there is more. More to document and more to share. For now though, this must suffice. Tomorrow is a new day and one with two therapies, and whatever else we get ourselves into. It will be fun, whatever it is, but I'm already tired just thinking about it...

Tuesday, June 19, 2012

Turtle Camp

As Oia's preschool year was ending for summer, I began to think How in the world am I going to keep this child entertained all summer long? She is so busy, rarely stops to sit, has a tiny attention span, and have I mentioned she's busy? I created a mental list, a summer bucket list if you will, of small tasks, crafts, and outings to keep the days from getting too long. One of the things on my list was to enroll Oia in a non-therapy related summer camp (ie. something FUN!) where she must attend without me and be among peers of the same age group all the while carrying over some structure to mimick preschool. This idea is a major leap outside of my comfort zone. I'm her voice, her interpreter, her safety net, her coach and cheerleader, her front line. Leaving her amid neurotypical peers without me is not my idea of easy. But I knew I had to make it happen, for the both of us. Growth happens outside the box. Usually.

I began collecting any local publication I saw that featured summer camps in our area. I have to admit, I read selectively for ones that may be geared for or have experience with special needs campers. It's just engrained in me. I also looked for camps that would offer a nice balance of physical movement and structured activity. Indoor vs outdoor, all day vs. a couple of hours per day, camper:instructor ratio, etc... I considered a number of things. After a few phone calls to various potential places, I finally decided to have faith and send Oia to a week of turtle camp at Explorations Play Studio.

We (the girls and I) went to an open studio session prior to making the decision. We had never been before and I had to check out the place first. The studio is small, one level, and full of plenty of things to do. Mainly self-guided exploration. Imaginative play. Trays of "stuff" to manipulate, make, mold, build, touch. Blocks for building, various manipulatives. Fine motor heaven. Not at all what my visually impaired, gross motor seeking Oia is interested in. My child is the total opposite of fine motor and self-guided. It was a stretch. But, I sent her anyway. I liked the balance between (flexible) structure and free play they provided. But still, I forced us both to step outside of the box with this one.

Camp (drop-off situation, no parents) was last week, Monday - Friday, for 3 hours each afternoon. Oia was one of 7 campers. The week's theme was all things turtles. Turtle books, turtle stories, turtle games, turtle figuerines, live turtles, turtle crafts, tons of turtles, turtles, turtles.... but I didn't care about that. I just wanted Oia to A) follow the structure and routine of camp, B) be an accepted part of the whole, and C) engage/communicate/play appropriately and safely with her peers. Sounds simple, but it's a continuous learning process for Oia. And because of this, she needed a shadow to help her successfully make the most out of the camp experience. So, that's what we got her ~ her very own shadow.

Our wonderful PT suggested a girl in her neighborhood that she thought would be a perfect shadow for Oia. The situation worked out beautifully. Oia quickly fell in love with "Anna", as she called her, and "Anna" was so dedicated and attentive to Oia that I felt completely at peace each day with Oia under her care. In discussions with the teachers prior to camp, they stated they felt comfortable enough to help Oia as needed but I knew they didn't fully understand her demands so "Anna" was a true blessing.

On the last day of camp, the teachers presented a brief slide show of photos to showcase the week's activities. All of the turtle masterpieces were on display as well and kids were busy showing their parents what all they did throughout the week. Some were stating turtle facts, facts I didn't even know. Impressive really, especially coming from the mouths of 4-8 year olds. But, bittersweet too. My child was at camp for other reasons, not to learn and retain turtle facts, although that would have been nice. I just wanted Oia to learn to speak the word "turtle". To focus. To pay attention. To remain on her mat for all of circle time. To attend a task or craft from start to finish. No, scratch that. To sit down and begin a craft. To interact with a new face and have that new face interact with her. I think she did that. Most of it, maybe. With the help of her shadow, at least. A shadow that the teacher's admitted on the final day was necessary for Oia.

I do believe camp was a good idea, even if just for the exposure of something new. For Oia, exposure is key. I'm proud of the smiles I got from Oia at pick-up each afternoon. Those speak volumes. I'm proud that by the end of the week, Oia could say "turtle" if I scripted it for her, maybe she got something more out of it, like some useless turtle fact, but I'll never know. "Anna" told me that the older peers of camp willingly helped Oia. That's nice to hear. I'm proud that by the end of the week, Oia was more attentive during group activities than at the beginning of the week. And really, I'm just proud that I have daughter to drive to camp and one who is able enough to be there and enjoy it. She went. And bottom line, I'm proud of my turtle camper and her personal best.

Non-therapy related summer camp. CHECK!

Photos: One of Oia's turtle masterpieces from the week, and Oia with her lovely shadow, "Anna".

Saturday, June 9, 2012

Hell-oooo Summer

A pint sized Adirondack with matching side table turned foot stool, a (pink) ice cream cone, and new pink Hollywoods are a few of the necessary accessories in Oia's world required for an enjoyable summer day...

because this girl has it all figured out.