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

Monday, May 24, 2010


If miracles had volume; they would sound like Oia's voice. I'm convinced. Her voice is the sweetest and most innocent sound we've ever heard.

We get great enjoyment out of listening to Oia babble with intent while sometimes, to our surprise, real words do make their way out of her little mouth. Occasionally, Rob and I will turn to each other and simultaneously say "Did she just say ___?", but then we may not hear the particular word again for months.

I headed into town Sunday for a few hours while Rob and Oia stayed home to spend the afternoon together. Later that day, Rob asked me if I've heard Oia say "no Oia" yet? I had not. I suppose this is one phrase she has heard over and over again from the both of us, being the curious toddler she is, and now she is repeating it back to us and clear as ever.

It makes us happy for a couple of reasons. One, this is not just one word, but a two word phrase. Big step. Two, she is repeating us. All of her words and babble have been of her own formulation, not repeated. And three, she can communicate the knowledge of her own name by saying it!! I have only imagined what this would one day sound like...and now I know.

So, in true Mo fashion, I had to captured it on blank video last night. Granted, we prompted her to say it for recording purposes but you'll hear "no Oia" clearly 4x and you'll actually get to hear her say mommy and daddy, spoken more like day-ee.

Prepare to smile.

Saturday, May 22, 2010

Go Fly a Kite

Hippotherapy usually consumes our Saturday mornings but today's session was canceled. Instead, we headed to a local Kite Fest for Kids. A new kite plus free wind is sure to guarantee a lovely time and that is just what we had.

Oia had all the room in the world to walk safely as the location was nothing but open, flat, grassy land. She was in heaven.

I think we've found a new family past-time. Today, the sky was truly the limit.

And what makes the day even sweeter? Your very own fresh, hand-squeezed lemonade that's nearly as big as you are.

Thursday, May 20, 2010

Preschool: Part 3

Decide what follows EI. Check.

Start referral process into preschool. Check.

Observe special ed. preschool classroom during school hours. Check.

I wasn't entirely ready to close the door on the mentioned, cluttered, unsafe preschool. I'm generally an open-minded individual and an unsafe room due to inadequate storage does have a relatively easy fix. This preschool came highly recommended to me from multiple sources whom I value so that fact alone was keeping the door cracked. In addition, I wanted Rob to see the school and meet the teacher and staff so that together we could yay or nay on the final decision.

It's been about 2 weeks now since we observed the class. The preschool is one classroom inside a small, public elementary school; housing preschoolers - grade 2. We scheduled a morning observation. On this particular morning, there were 8 kids and 5 adults (teacher, OT, PT, 2 assistants). Not bad student:teacher ratio. Of all the children in the class, most seemed to have speech and language delays, while at least 2 were kiddos with syndromes and 1 had an obvious hearing impairment. None of the kiddos had the physical limitations that Oia has so that should work to our advantage.

We observed circle time. For those of you not up to speed on elementary lingo, circle time generally starts the day and brings the class together by doing whole group activities such as calendar, weather, counting, morning meeting, etc. Oia wasn't entirely comfortable being a part of the circle with the other kids but she did sit on her own chair between Rob and I just behind the circle. She sat for an entire 30 minutes, frozen and mesmerized, and watched the class as they participated. Toward the end of circle time was a chance for the kids to dance about with music before transitioning to the next phase of the day. Perfect timing because Oia was getting antsy at that point. She stood up from her chair, beelined through a couple of kids bounding to the music, made her way to a little boy who stood in the middle of the organized chaos, wrangled him into a huge hug, then planted one of her famous open mouth, sloppy kisses right on his cheek. You would have thought she knew the kid. The poor fella' didn't know what had hit him but he didn't seem to mind. Once Oia released him from her grasp, he returned with puckered lips for more. I guess we forgot to mention that couple dancing isn't until junior high school!

Our visit lasted 45 minutes. All of the adults were attentive and nurturing to the students and the class structure was organized. The kids knew what was expected of them and followed the routine with ease. It was evident to me that the room was less of a hazard zone than my initial visit. Certainly, it appeared a step in the right direction, but it wasn't perfect yet. I also know that the storage unit(s) which have been granted for the room were not yet delivered so my assumption is that more of the classroom will eventually be cleaned and freed of clutter. The 'no kid zone' was still there...not particularly happy about that. Perhaps over summer break there will be a classroom makeover....

Rob says his gut tells us to give it a try. My gut says the same. We are entitled to choose the frequency of Oia's time in preschool and at any time we can switch gears if something is not working the way we'd like it to. I have faith. I already see myself as being one of those moms so I'll know quickly when and if there is a problem.

So come August, preschool it is at C Elementary. Hard to believe. I'm excited for the social and academic opportunities that preschool will provide for Oia; but maybe a bit nervous still. This is my baby after all; and a physically challenged one at that...it's going to be especially hard to 'let go' for the very first time. I feel a little at ease though, knowing that she has at least found herself a cute dance partner.

Tuesday, May 18, 2010

Preschool: Part 2

So, after deciding that preschool was our next step after Oia ages out of EI in August, I scheduled a brief meeting in mid-March with the only special education preschool (that I know of) in our county. Our EI coordinator, the head preschool teacher, the school's speech therapist, another lady though I don't remember her role, Oia, and myself attended the meeting. Basically, the meeting was the initial step in the referral process and an overview of how the system works. Given Oia's diagnosis, she qualifies for special ed services. I had no doubts about that. I felt relieved after meeting the team. My nerves dissolved and I felt excited about the transition...that is until I stepped foot into the preschool classroom.

Let me preface this by saying that I am fully aware of what it's like to be a teacher and have limited space for storage and resources. Also, I am aware of what a classroom may look like at 3pm on a Friday afternoon (which is when our meeting was) after a roomful of kids tear out of the building like bats outta' hell-o because it is finally the weekend. However, the condition of this classroom was unacceptable and very dangerous for my child. Truthfully, it was shocking.

Pathways were not clear, tight, and very narrow. Toys, boxes, bins, storage, and things of the like were stacked at some places higher than my eye level. Stuff and clutter everywhere. To be fair, it probably wasn't really clutter but with little space and organization in effect it classified as clutter to me. One large area of the already tight room was sectioned off as the 'no kid zone'. Oh, no-no-no. I saw all I needed to see from the doorway; I went in no further. Honestly, I couldn't even let Oia down to explore the room on her own for fear of a serious fall, head bang, etc. I'm assuming that my face could have been read like a book since the teacher told me that the classroom was "...about 3 rooms crammed into one." I just kept thinking...how is this going to be safe for my daughter who lives in a wobbly world with limited mobility and less than prefect protective reflexes when she does fall?

It's not.

I made a few phone calls the following day to the neighboring county to inquire about open enrollment (public school), cost of tuition, etc. I explained our situation without going into too much detail but basically I got the answer I hoped I wouldn't get but was warned I would. Open enrollment is not an option for special education students. Why? The answer I got was because it costs more to fund special education. Not really a good enough answer in my opinion but one I couldn't change. I tried. It was made clear to me that even employees/teachers of A county who live in B county could not even enroll their own children.

So, we're stuck with a cluttered, unsafe preschool? Not quite. I called our EI coordinator to share with her the concerns I had. She too tried to inquire about enrolling Oia in a neighboring county and was turned down as well. She also, with my permission, called the preschool teacher to discuss the condition of the classroom from my point of view. Teacher understood.

Since then, the teacher applied for a grant to help fund the cost of adequate storage which will (I hope) be enough to free up the classroom and provide the least restricted learning environment as possible. Not just for Oia, but for all the students who attend, or will attend, this preschool classroom.

It's really an easy fix; a no-brainer really. Doesn't the condition of this classroom bother the other parents whose preschoolers come to this school each day? Makes me wonder...

Monday, May 17, 2010

A Watched Pot Never Boils

We took Oia to her 6 month follow-up with Dr. T, her neurologist, at the Epileptic and Pediatric Neurology Clinic Friday afternoon. Of all the wonderful things that have come out of our move to VA just under two years ago, I'd say Dr. T has a spot high on our list.

The visit went well and was uneventful which is the outcome we want for any appointment. Dr. T spent ample time observing Oia as she navigated and explored his small office. He noted she was moving very well, with super control, and was doing great. He asked us the usual questions regarding her eating and sleeping habits; all of which are fine. And of course the big question regarding seizures...have we seen any seizure-like activity that may cause concern? That question makes me want to tap, knock, rather bang hard on any wood surface I can put my hands on because, no, Oia does not suffer from seizures, at least thus far.

I have never seen eyes wider on a doctor than when we tell him this. "Wow" and "Let's hope it just continues this way" is pretty much all he can say. We know, but he reminded us again, that Oia has every reason in the book to have seizures. Medically speaking, EVERY reason. Thank you, Schizencephaly.

Seizures are the one thing I'm not sure I can handle and fortunately for us, we haven't had to yet. And yes, I say yet. I'm waiting on the ball to drop. Seizures are always, and I mean always, in the back of my mind. Every. single. day.

It's hard for me leave it alone. I asked Dr. T if there was a window in which kids can have seizures or begin getting them or perhaps even outgrow them. He said there are no definitive windows; really one could rear its ugly head at anytime although puberty can be an onset of seizure activity or increase the frequency if seizures are already present. And for females, estrogen is a booster for seizures. So, we have that going for us too.

It's scary to say the least. I know there are parents and kiddos who deal with these nasty, often uncontrollable, things on a daily basis and my heart hurts for them. I've even stopped reading postings from a yahoo group on Schizencephaly which I belong to because these kids are plagued with seizures and their parents are grasping for answers. It's too much for me handle; I'll cross that bridge if and when I have to. But I still wait...thinking that the waiting game will keep them at bay. They say a watched pot never boils and that's how I describe my grip on all of this. I'm watching my pot and hope and pray it never, ever boils.

Thursday, May 13, 2010

Preschool: Part 1

This little baby of ours is just three months shy of her 3rd birthday. At that time, our life as we know will change quite drastically, yet again. We have benefited from Early Intervention Services since Oia was just 7 months old. Essentially, it is all we know. To say that it has saved our life isn't far from the truth. EI has provided us with dedicated therapists who have driven to our home without complaint multiple times per week to assist in Oia's overall development by practicing meaningful therapy and to offer endless amounts of encouragement, information, and support as we trudge along on this very emotional journey in the special needs world. There is no doubt that without it, Oia would not be where she is today, nor would I.

All of this support is abruptly over the minute Oia turns 3. No more home therapies. No more Service Coordinator; our go-to gal. Game over. Apparently by the time a child turns 3, they are to be 'normal' and begin living as such. I realize the service is a privilege and at some point there will always be change but at times I feel like we've only just begun.

So, what do we do now? The next logical step; and the best one in our opinions, is to enroll Oia in a special education preschool program. EI has begun that transition and referral process for us so I know one little girl who will be venturing into a new world very soon.

Monday, May 10, 2010

Mother's Day

My Mother's Day was just as I hoped it would be; just like any other day. A day filled with Oia's sloppy kisses and her little arms wrapped around my neck. A day to actually celebrate not myself, but instead the one who made me a mother.

A day of play, and little work, and full of each other's company...at home, outside, with Rob and Oia.

A day in the slow lane. A day to relax and do next to nothing makes a day perfect in my book. I find that life in the slow lane is where one can best find the simple pleasures in life and there I like to remain if at all possible.

Even on Mother's Day.

Sunday, May 9, 2010

Who says...

...that a man can't multi-task? It may not happen all the time but here's proof that it is possible!

Saturday's Playdate

We spent our Saturday afternoon hanging out with our dear friend Elena, along with her mommy and little sister. We met at Short Pump, which is an outdoor mall that runs a train for kids to ride. We let the girls play in Pottery Barn Kids for quite some time. (This store is a little girl's heaven with all the play kitchens, dolls, and doll houses.) We stopped for snacks and a train ride, rode the escalator countless times, and then rode the train again. The girls really had a fun time playing in the pint-size train station after their train ride as well.

We had a great time with Elena and her family. I appreciate that we have someone like Elena in our lives that Oia can turn to for inspiration, and hopefully one day, for true companionship as the two grow older. Elena is a wonderful role model. She makes Rob and I smile and I assure you, Oia adores her too.

Wednesday, May 5, 2010

OT: Major Progress

To say that we have seen some improvements in Oia's ability to use and incorporate her right hand in daily situations would be an understatement. In the whole scheme of things, progress has been huge in recent months. She is learning to control both hands separately which is beyond challenging in most CP kiddos like Oia, especially when one hand has a tendency to remain closed or when the thumb finds its way tucked inside a fisted hand. (We are not out of the woods yet where a fisted hand is concerned but thankfully it rarely happens anymore.) And overflow is a bitch; nearly impossible to work through. But this girl is conquering it!

Below are proof that 3 of Oia's current OT goals have been MET! These goals have been the long term goals in place since Oia began OT when she was nearly 8 months old. Today, she is nearly 3. This is proof you can't rush perfection but even more telling of where Oia's patience and determination have taken her (and there's no doubt that 2 constraint therapies have made a difference as well.)

First Video, Goal 1: Gain the precision, strength, and accuracy to voluntarily grasp and hold a small object with the right hand (and while engaging the left hand at the same time makes this extremely difficult).

Second video, Goal 2: Stabilize or hold a container with the right hand/arm to carry or to place objects inside of with the left hand. And Goal 3: Transfer small objects from right hand to left hand and vise-versa.

Are her movements perfect, quick, with ease and fluidity? No. But they are just that; movements, and how remarkable coming from a girl who at one time in her life had developmental disregard for her right arm which means she never even knew it existed.

Oia, you've come a long way, sweet girl. You are simply amazing.

Sunday, May 2, 2010

Day-ee's Little Girl

When Rob and I were expecting, all we knew is that we were having one baby, not two, who we called "Peanut". We chose to keep Peanut's gender unknown until delivery. Why ruin one of life's greatest surprises by peeking at an ultrasound monitor? The waiting, wondering, and guessing of who our child was going to be only added to the excitement of pregnancy. However, we secretly hoped for a daughter...I guess you could say Rob longed for a 'daddy's little girl' and I had no problems taking a second seat to that.

And I have to say that the view from the second seat, which I have gladly taken, is considered another pure joy of being a mother. From here, I get to watch a father-daughter bond of admiration and love grow between the two most important people in my life. Of course for Rob, it was always love at first sight. No doubt. But now, I see Oia's connection with him growing stronger every day. Oia can't yet effectively communicate with words but no words are needed here to understand her desires to be around her Daddy; pronounced as best as she can, "Day-ee".

Even though one of the first words a child will ever say is Da-Da, it wasn't the case for Oia. For some reason, the word just never came out of her mouth. Until very recently, that is. It's a sweet sound for both of us to hear and needless to say; Rob has waiting a long time to hear it.

She follows her Day-ee around the house as to never loose sight of his whereabouts, especially on the weekends when he's home all day. If he is upstairs, she wants to be too. Her smile is never wider as she sits on the kitchen counter while the two of them prepare a pot of his morning coffee together. If she hears the phone ring during the day while Rob is away at work, she assumes the caller is him and repeatedly calls his name, "Day-ee, Day-ee, Day-ee..." He has always been the one to 'fix' her toys so that she could hold them better, sit in them better, and enjoy them more. He has a thoughtful mind and thinks things through long before I do. A good daddy for sure; it's no wonder she adores him.

I often flash forward in my mind to the father-daughter dances and afternoons of fishing the two of them will hopefully enjoy one day. It seems like a long way away but time is fleeting and this Day-ee's Little Girl is growing up fast. For now, I'm savoring the moments of today and enjoying my view from the second seat. I'm glad to be here. Oia is a lucky girl.

Photo taken May 2nd at the Kidney Walk for The National Kidney Foundation. Yes, Oia walked some of it on her own but why walk when you can ride on day-ee's shoulders?