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

Tuesday, February 28, 2012

Bits and Pieces

Oh, how I miss this space of mine... I hope the feeling is mutual. I wouldn't call this my best post ever but it is my best attempt at letting everyone know we are here, staying afloat, and trying to savor all the crazy details amoung the chaos. Here are some bits and pieces of what's going on around here...

Oia had been sick for all of last week and demanded a lot of monitoring and TLC to make a full recovery. Therapies and school were a no-go all week long. Whatever the illness, it rendered her fatigued and couch ridden with a fever for 3 days. It's taken a number of days after that for her to find her normal again but yesterday she woke up smiling, and in a delightful mood, so we can say life is good again. Now it's Esme's turn to battle the mystery illness. I'm new to having a coughy, raspy, feverish baby and it's a pitiful, worrisome sight. Oia never even got the sniffles as an infant... perhaps we can say that's because she never had a big, preschool sister hovering over her every move. I do hope our tiniest Teaster gets better soon.

Aside from trying to kick the yuckies in this house, we are trying to tackle some um, let's just say undesirable behavior as well ~ from our biggest Miss. We believe most of Oia's outbursts are the result of a mixture of things but regardless of the reasons, it is still not cool with us and we make no excuses. Her frustration can quickly turn into biting, scratching, or hitting someone. If she becomes frustrated with a toy or any other object, she'll launch it and let me tell you, the girl has a dangerous arm. All ill actions land her in time-out immediately. Some days, she never sees a time-out because she's an absolute angel. Other days, it seems she lives there with horns atop her head. And those are the days when it seems like the whole world and everyone in it is standing on my last nerve and leaves me questioning my success as a mother thus far. It's a phase (I hope) but it's still not settling well with me. I could live without this particular parental challenge as we have enough challenges without this one. Maybe the "terrible two's" are finally catching up to us at 4... but Lord, have mercy. It seems to be my daily motto.

We took the month of February off from private ST. I sensed Oia was getting burned out with the same activites each session and her attention span (which already is that of a gnat) was growing shorter and shorter by the session. Quality is always better than quantity in my book so hopefully when we resume ST in March, it will seem fresh and new again. Breaks are nice and we all need them from time to time. Even when you're just 4.

As most of you know, growth is a bittersweet word when your kiddo has CP. Growing bones make for tighter muscles. Tweeks and changes to Oia's orthotics must be made along the way to minimize the compensations she makes in her stance and gait pattern. Her walk is constantly evolving. Oia's left leg has been brace free for (I believe) about 2 years now. She currently wears an SMO and KiddieGAIT on the right only. In recent months, we have been monitoring the inversion of her left foot, due to the tightening of a muscle aside her calf area. At our last appointment with the ortho doctor in January, we all agreed it was time to support the left foot with an SMO. We picked up the new brace today and Oia seems to carry on with it just fine though I imagine it feels a little odd to wear a brace on a foot that has been free for so long. I don't own a crystal ball but I'm willing to bet that lengthening surgery for the left leg will be a topic of discussion at some point in her life but for now, the new SMO should do the trick.

Friday, February 10, 2012

CVI and Visual Clutter

I recently met with the new vision specialist that services Oia's school. She is different than the specialist who assessed Oia last year and thankfully so. This recent meeting has shed some light on things that were going unnoticed by both myself and Oia's teachers. Namely, visual clutter and the behaviors that stem from it.
If you Google the term "visual clutter", you'll get all sorts of articles pertaining to messy desks and unorganized spaces. Refine your search to something pertaining to clutter and visual impairments and you get more than enough on CVI, Cortical Visual Impairment. Those with CVI can have normal eye capacity (healthy eyes) but once the image reaches the brain, it is often difficult to interpret or process correctly, usually due to an interruption of information as the result of a severe injury to the brain or a brain malformation. Focus and concentration are not amoung the easiest of things to do when the brain doesn't play nicely with the eyes. Is this why my child never stops to sit for long, or at all most days, not even to eat? Anyways, I digress...
Oddly, until now, CVI has never been mentioned to Rob or I by neither a neurologist or an ophthalmologist... and remember, Oia has a significant congenital brain malformation. Because the term has never been bounced in our direction, we assumed Oia wasn't effected by it and therefor we've spent no time researching it or living life as though she has it. But after doing the smallest amount of research on CVI since our meeting, it seems like CVI is almost a given when brain injury or malformations are present. The vision specialist noted that many of the behaviors she observed while working with Oia were classic behaviors for kiddos with CVI. For example, Oia gets "lost" before some activities even begin if the activity involves multiple objects/materials. Objects must be sequenced, and introduced one at a time in an uncluttered environment to increase Oia's ability to focus. If her sweet brain is trying to channel and process too much at once, she's over the task before it even gets started.
Another example, the specialist noted that Oia looked at an object on the table in front of her, glanced away from the object, then while looking away, reached and picked up the object with accuracy. For reasons that are unexplained, seeing objects is sometimes easier for CVI folks when not looking directly at them. Think about trying to walk around your house in the dark... ever turn your head slightly and look away from the direction you are trying to head to find that you can see your destination a little better? Perhaps this is the same concept for Oia in the daytime. And is this why she so reluctantly looks at our faces, or makes eye contact when speaking or being spoken to, especially during speech therapy? She will and can look at someone when asked to but quickly chooses to look away... hmmmmm.
I realize a vision specialist is by no means a doctor but her input is definately something to think about. We will just continue with the visual accommodations we have been using and be more mindful of and implement the visual strategies I've found in my searches that are helpful for kids with CVI. I'll be adamant that Oia's teachers are mindful as well. CVI or not, Oia is amoung the visually impaired population and these strategies can't hurt her. The vision specialist will schedule with Oia's teacher once per grading period for 30 minutes to offer suggestions that will hopefully enhance Oia's learning environment by avoiding the visual clutter. One of the comments on Oia's most recent IEP report stated that "Oia is interested in learning new concepts however her vision is a major obstacle to her learning at this time." Reading that sucked and it was the first time vision difficulties have ever been noted on her report. But it is what it is. Visual accommodations are a must for our preschooler now more than ever. Bolder prints, larger fonts, contrasting objects, simple generalizations, minimal "clutter", realistic pictures, and whatever else we need, we'll do... all for a girl who deserves to see and learn the world like anyone else.