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

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.)


  1. Thank you for sharing your journey. As you know, you are just a year ahead of us in this school journey, and my heart aches thinking of leaving car circle crying. I have so much anxiety about next year, about what Kindergarten will bring, what it will look like for my girl, whether they will "get her," whether they will try hard enough to get her . . . all of that. This road is not an easy one, without question. But it is a beautiful one. I love following along on your's and Oia's and Esme's journey, which is so very parallel to ours. The gifts our bigs give to our littles and vice versa astounds and amazes me.

  2. Every time I read your updates I have a tear in my eye and a smile on my face. I have been where you are right now back when my Hannah was in the first grade (she's 10 now in the 5th grade) they brought in a behaviorist and to be honest my suggestions worked better than anything a STRANGER can come up with ,we know our children inside and out and because of the communication challenges makes things even more complicated . Keep strong and this too shall be something you look back on and say we made it through something else and on to the next . :)

  3. I can't imagine how hard the school day if for you, but you are amazingly strong and an amazing mother. When it gets to much think of how far you have traveled and enjoy all the wonderful things that beautiful girl can do. Esme is so cute I could eat her up! I hope you and Rob are doing good! Luv and miss ya.