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

Wednesday, December 22, 2010

O is for Oia

I struggle more often than I care to admit with the fact that my 3 year old has a significant expressive language delay, a delay equivalent of someone a third her age. Some days it never gets me down (okay, I'm lying) but too often it's on my mind and the older she gets the heavier it feels. Being around a toddler Oia's age who talks in sentences, tells complete stories, and spouts off random silly thoughts and questions leaves my heart a little achy. Aren't all parents supposed to be able to die laughing because of the darndest thing their child just said? I still remain hopeful for that day.

Despite the language delay, I never let myself underestimate Oia's receptive language and the potential she harbors. It could be an easy thing to do but I don't dare go there. Oia won't let me. Yesterday is an example of that.

After PT, we ran an errand to a local print shop to print a few photos. Oia was in her stroller as we waited at the counter for our order to print. The view from a stroller in front of a tall counter, as one can image, is less than appealing. Oia was ready to go as her patience were nearing the end. As I'm standing at the counter trying to be patient myself, I hear Oia below me saying her name repeatedly and with conviction, each name getting louder than the last. She grabs my attention with "Oia, Oia, Oiiaaaaa..." and as I look down I realize that all the while she is not only saying her name but frantically pointing to a letter O that she spotted within the sign that hung level to her sweet little face on the side of the checkout counter.

"Yes, Oia, that is an O for Oia! You do have an O in your name!"

And so those are the rare, beautiful moments I live for... a mere 3 seconds where Oia shows me a bit more of who she is and what she knows. I just love this girl, with or without the ability to speak many words, I simply love her.

Wednesday, December 15, 2010

In Defense of a Thoughtless Comment

I was recently on Facebook when a friend messaged me. This friend was near and dear to me in college, but as life often does, it took ahold of us and pulled us in entirely different directions. Sadly, at this point in our lives, our only communication is via Facebook. We began our chat and one of the first things she asked me was if I was still teaching or staying at home. Anyone who really knows me, knows that I stay home now and why so the question made me a little curious. Clearly, she did not know a thing about Oia (though I'm sure I once mentioned our situation in an email long ago).

Anyways, I told her I spend my days at home caring for Oia and have been able to do so since shortly after her diagnosis and her reply was "I'm sorry". I feel like that is the typical, safe thing to say when one doesn't know what else to offer. I hate hearing "I'm sorry". I dove in and asked her if she even knew about Oia and she apologized for not knowing. That's when I told her Oia has cerebral palsy. As I've heard a thousand times before, she said something to the effect of how God knew we would be the perfect parents for this girl and how lucky she was to have us but I quickly assured her that Rob and I were the lucky ones in this situation.

That must have been all of the topic she could handle because what she messaged next shocked me.... and kinda hurt at the same time.

Completely changing the subject, she says "On to a more positive note...." at which time she turned the topic into something insignificant regarding music.

No curious questions. No inquires about progress, Oia's current health, etc. No nothing. Just changed the subject, and in doing so left me feeling no colder then than I do on this 20 degree winter day in Virginia.

I'm just like any other mom. I want to talk about my kid too. Although Oia's different by medical definition, she is something worth talking about. She is not a taboo subject that needs changing. She is the most "positive note" I have to share with anyone. Who else can speak very little yet has so eloquently communicated and taught me some of the most beautiful lessons I'll ever learn?

There's no need to feel sorry. There's no need to change the subject. Next time, have a heart, show some compassion, and ask about my girl. She works too hard to keep her triumphs a secret. You'd be amazed and you just might even leave our conversation on a more "positive note".

Thursday, December 9, 2010

Don't Be Fooled

A while back, Oia's school asked if I would be willing to sign a consent form to have my daughter evaluated by the their vision specialist. (Not sure if "vision specialist" is the correct term but I'm going with it.) I never deny such things so I signed. I figure, the more supportive hands and watchful eyes on my daughter at this young, pliable age, the better.

Yesterday this specialist phoned to set up a mutual time for us to meet. She stated she had some questions she'd like me to answer regarding Oia's vision. We met this morning after I walked Oia to her class. I learned at this time she had already been working with Oia for 3 weeks. I would've liked to have known that before now but, whatever. I answered a few typical questions like How would you describe your daughter? Does she wear her glasses all the time? Is she on any medications? How well does her vision serve her in new places? Is she sensitive to light? How does she explore new objects; orally, tactically, visually, etc? and so on and so forth.

After some discussion, the specialist shared with me that according to her evaluations, Oia sees quite well but I've always believed this. As far as all can tell, her vision does not interfere with her level of function within her environment. To read of her vision history and diagnosis, it's really quite amazing. When asked by the specialist, Oia correctly pointed to near and far objects. Distance objects were seen looking out a window and near objects were tiny thumbnail sized pictures in print. She appears to see colors appropriately, correctly identifying red, yellow, blue and green. Her depth perception is on target. She does not over or under reach for objects and she lifts her little legs to the correct height when navigating steps. Don't be fooled by those little, thick glasses... this girl can see. If there is ever a stumble, it's due to physical challenges, not vision.

In addition to PT, OT and ST during school hours, Oia will also spend some time along side this vision specialist for the remainder of the year. As I understand, the two of them will do tasks together that require great visual focus (threading beads, etc). As Oia grows as a learner, she may require more needs from a vision specialists (special texts, larger fonts, etc) but for now this girl is holding her own.

My only request to all these therapists and specialist who work with my child during school hours... please work with our girl IN the classroom and keep this girl among her peers if and when you can. Getting pulled out of the classroom for one therapy session or another means she is missing out on valuable, educational activities that go on in the classroom. Our social butterfly would appreciate it very much.

Tuesday, December 7, 2010

Post Botox: One Week

Oia showed no indication of soreness or pain after the two injections of Botox to her right calf. She carried on as I hoped she would. Doctor told us that changes would begin to be noticeable after a weeks time so we were shocked to notice a huge change in her tone just 24 hours later. To say that her foot was flat, meaning all the way down to the floor would be a stretch, but it was pretty darn close. In fact, while in motion, Oia's right heel is now closer to the ground than her left heel. The relax in her right calf seems nearly miraculous.

Since the injections, it's been safe to allow Oia some time sans AFO. She is no longer walking so high on her right toes which means her ankle is no longer as susceptible to injury. Preventing an ankle injury has always been a constant worry.

So, are we pleased with post-Botox results? Absolutely. And if Oia could talk, I'm sure she'd tell you that too. Too bad the relief is only temporary.