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

Tuesday, October 22, 2013

More on Tackling Kindergarten

This thing called Inclusion Kindergarten is either going to kill me, cause me to drink large quantities of adult beverages on a daily basis, or it may just make me stronger. I'm going to shoot for the latter and hope for the best.

I touched briefly on the issues with school in my previous post (Oia's frustration, my sense of discomfort with the course of the school year thus far, lack of follow through, inside the box thinkers etc.) So, after yet one more note of how inattentive Oia was on a particular day last week, coupled with the feedback that Oia hit out of frustration, I made a prompt decision to yet again observe Oia in class in an attempt to catch these behaviors in action to then in turn target why. I like to fix things. I emailed her teacher stating I would be in the following morning to observe, through the hall window, where I would not be a distraction. In other words, pardon my presence but carry on.

My observation last Friday morning was for a full two hours of classroom activity. I observed, I took notes, observed and took notes. Two full hours. And you know what? Once again, Oia did amazing. She remained on task to the best of her ability and was easily redirected when off-task. She worked hard. She tried hard. She went through the motions just as any of her classmates did. But her team that consists of a teacher, a collaborative SPED teacher, and an aid? They disappointed me in a big way. I'll spare you the details, but trust me, I know a thing or two about teaching and more importantly, I know a lot more about MY CHILD and her needs.

So. The same day of my observation was the very same day I typed up an email requesting a meeting with Oia's principal to discuss the concerns that have been brewing over the last two months of K, and concerns that were the final straw post Friday's observation. And then I stepped far beyond the point of no return. I hit 'send'. My meeting with the principal was scheduled for 8:30 this morning. I was ready.

I was a tad nervous anticipating the meeting this morning but Oia's sleepy and toothless smile as she woke to face another day reminded me for the millionth time why I must step far from my comfort zone and do the things we do. Today, I spoke adamantly. I made very valid points. I provided solid examples noted from my observations of ways that Oia's academic needs are not being fully addressed, due to the lack of follow through from our final preschool IEP meetings and the lack of understanding Oia's conditions. Principal was receptive and never once tried to defend or stand up for the situations or the examples I refered to. It was a great feeling. She heard me and I truly feel as though she understood my perspectives. My concerns/frustrations/disappointments will be delivered immediately to Oia's teachers and hopefully a collaborative plan to address these areas will be implemented ASAP. I trust this will happen, partly because Rob and I will make sure of it. There is a seat under that hall window which opens into the classroom that I will find myself in yet again very soon just to be certain of it. I guess I'll just have to accept being *that* mom. And gladly, I will.

Meeting is over and today I feel good. I feel much less weight now that I've dumped all this away from my shoulders and onto someone who has the power to remedy the situation. I allowed the school year ample time to get underway, work through the back to school transitions that often take place, and now was the absolute right time to speak up. Inclusion is tough but it is so worth the effort. My girl is growing in all areas, at her own beautiful pace. She has friends; typical and non-typical peers. Playdayes are pending. Classmates birthday parties are being added to the family calendar. Our community outside the special needs world is multiplying. And we will prevail at this little but big thing called Kindergarten because Oia already is. And even though this is a subject that shall be continued, I'll still rest my head a little easier tonight because I did what was necessary for Oia. And then I'll sleep like a rock for the first time in months. Good thing because tomorrow I will need all the energy I can get as I brave a field trip with way too many 5 and 6 year olds. Her first K field trip. Oh, the fun never ends with this girl of mine.

Friday, October 11, 2013

Mumbled Updates

We're alive, mostly well, and enjoying the company and respite that my visiting mother provides. Our girls are in Heaven having their newly retired NeNe to pal around with. We have been busy and utilizing our "help" wisely but making sure to squeeze in plenty of fun and memories, too.

Now, I bring to you a random mumble of thoughts and a few updates regarding all things Teaster.
Oia. She's still amazing. Still a beautiful handful. And growing so tall. She is up from the 50th %tile for height since May to the 70th %tile currently. The growth spurt handed us a lovely pink night brace for her oh-so tight right leg, which is to be worn now throughout the night, 7 days a week. Naturally, Oia is not a fan. Once her pj's are on, she begs for us to not put the brace on by saying something along the lines of Boot off, I'm okay. That's when Daddy turns on his gears of genius. We all know and appreciate that misery loves company. So, one too-small snow boot on Daddy's foot each night, and one not-so-comfortable night brace on Oia's foot each night. She relunctantly gives in to the brace and falls asleep shortly after. Once Oia's asleep, Rob leaves her bedside and sheds the snow boot until the two go through the same ritual just 24 hours later, night after night.

Two "boots" reside by Oia's bed.

Oia's first nine weeks of school are behind us. It has literally been a day by day experience for all, teachers included. The transition period into Kindergarten has proven a hefty one. And although transition periods are inevitable and necessary, they happen to be somewhat of an emotional overload for me. From my end, much faith and trust goes into the process of someone new "learning my child" as there is much to learn, and so much to understand about this one person I call mine. The vision quirks, the mobility issues, the language challenge, the ADHD, the cognition gap... it's all so complex yet somehow she is still so simple.

Although not perfect, the beginning days and weeks of K seemed to pass as well as expected and without a major hitch. Aside from the usual "she's so easily distracted" report, which still comes on a daily basis, and the "she's not making the progress we'd like", things were okay. Just okay. I still leave car circle most mornings with a pit in my stomach (and admittedly crying). The physical challenges she battles with barely faze me in the least anymore. But I swear, the cognitive and expressive language delays pack enough punch to level me at any given moment on any given day. That shit's the hard part. And frankly, I don't see it getting any easier any time soon. But I'm working on it.
Then about 3 weeks ago, Oia's behavior began to take a shift. I suspected her limits had been pushed, because the work is hard for her, and it's common for kids with attention deficits to act out impulsively when frustrated. She began refusing work. Refused. Verbalized many firm no's to teachers. Apparently tossed materials and work across her table as her final attempt at stating I'm not doing this and you can't make me. Her impulsive behaviors to grab at objects, others and/or their belongings increased. Breaks from the room and tasks at hand, in the form of walks down the hall and back, were/are taken frequently. These changes in her behavior were delivered to me via phone call from her SPED teacher during dinner one evening, after a week and half or so since the behaviors began. SPED teacher called to ask if she could invite a behavioral specialist from the county to observe Oia. The result post observation would be a suggested behavior plan to help teachers better manage Oia's behaviors. I gave my permission. And I felt devastated. The teacher in me was shocked but more so the Mom in me was broken.

I don't make excuses and I'm decent at viewing the whole picture. I know areas where improvements from our team are necessary. But at the same time, I also must remind myself that her teachers have likely never had a student like my child. Oia's mold is unique to her. This reality is why I beg to work with them, require a daily communication log, offer suggestions, and demand daily academic modifications. I've walked a fine line now for 9+ weeks teetering on when to step in and when to step back, and honestly, I've done more of the latter. It's so damn hard. But, I know Oia best. And I bear the weight of her burdens almost entirely so I speak up when I must. I pray that our behavior plan/IEP meeting scheduled for next week will be highly productive. There is a little girl who needs us and this team of hers needs to be innovative and novel at figuring out what makes her tick and for ways to better work with her, all while carrying bucket loads of patience alongside of them. She lives outside the box and we love her that way. And I want everyone else to join her outside the box, love her, and love teaching her, too.

And little Esme. Oh goodness. She's a real piece of work, just as her big sister is. Words, and astonishing amounts of soaked up knowledge, flow effortlessly from her tiny self. The sweetest sound of all is the slight lisp that seems to gently kiss many of the words she speaks. We adore it.
I melted the first time Esme greeted Oia at the door after school recently with the most genuine Have a good day, Oia? one could ever imagine. Yea, Esme Oia said. And the Are you okay, sweetheart? from Esme to Oia after she falls. Oh my. Talk about a heart that could burst from ones chest. These unsolicited interactions are happening and it's a beautiful, beautiful thing.

Oia is still receiving private OT and speech each week. It's a rat race to travel 30+ minutes each Tuesday and Wednesday to get to after school therapies on time but it still must be done. Oia is not currently attending private PT (hasn't since school started) and will be discharged from private PT by the end of the year. That feels so weird to say but both myself and Oia's PT feel confident in the decision. Physically speaking, Oia is who she is. Thankfully mobile and mostly-able. We will continue to work on bike riding and other gross motor activities as a family but there is not a need to continue sessions to do so. What a blessing.

And speaking of blessings, each Thursday guarantees at least a couple of 'em. Our buddy, Landon, comes home with us after school on Thursdays so his momma can attend weekly meetings and my girls love this. I do too. We snack on popsicles and just be. Thursday's are a nice break from the rat race and these three together are a triple dose of all things right and good in this world.

Until next time. (Which won't be as long, I promise.)