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

Friday, November 22, 2013

This, That, and a Playdate

Life is rolling right along. Funny the way that happens regardless of whether the present is good, bad, or status quo. Life goes on and thankfully so. Aside from a few hiccups regarding Kindergarten, it's all pretty good over here. Just a few little things worth sharing...

Kindergarten. I'll keep it in a nutshell, or try to anyways. So as you know, Oia began Kindergarten in a general education classroom which is considered full inclusion. We demanded it be that way with any and all proper modifications. She was set to receive collaborative SPED instruction for 1 hour/day (30 minutes for literacy and 30 minutes for math) in her classroom by a collaborative SPED teacher. With that explained, the school year all along has never felt right for various reasons. Oia's teachers and assistant have struggled to understand Oia and her academic needs and often I'd consider the efforts as weak or minimal. Oia wasn't learning and through my observations, she was just a student led through the motions by mainly the assistant. Staff efforts, in my opinion, fell under the "needs improvement" category. There is nothing "collaborative" about a teacher sitting with Oia at a small table in the back of the room, behind a tri-fold divider. Oia disliked it and her behavior with this "collaborative" teacher was quite defiant. Ultimately, Oia's team proposed to remove her from her general education classroom and place her for all hours of the school day into the SPED self-contained classroom. This goes against our beliefs entirely but after some "negotiating", Rob and I agreed to allow Oia 1 hour of SPED literacy instruction and 45 minutes of SPED math instruction in the self-contained classroom BUT the remainder of her school day must be spent in her regular education classroom (with proper modifications) with her typically developing peers who have now become her friends. The schedule change eliminates Oia's interaction with the "collaborative" teacher, thus part of our deciding factor in allowing some placement changes. Oia has seamlessly transitioned into her new schedule this week and she is shining. Lovely notes are coming home and Oia says she is "happy". Sometimes it's less about the classroom your child is in and more about the people who work with and teach your child. The fit must be good for Oia and it feels right to me, too. We're going with it because when Oia is happy, so am I.
Ortho. We moved Oia's ortho appointment from early in the new year to this week because the tightness in her right leg is currently of great concern. The tightness is beginning to jeopardize her overall stability and ankle alignment. Intervention is upon us and we didn't want to wait until January. We prepared ourselves with the idea that another surgery might be the suggestion, or remedy, to the current tightness. However, it's only been 2 and a half years since Oia underwent lengthening surgery and her doctor says it's just too soon to go through another one again. More surgery means more scar tissue and until Oia is done growing, the idea of surgery isn't necessarily the best one (if it can be avoided). This is the ugly game cerebral palsy makes us play. Grow, get tighter, choose best method to alleviate tightness, and repeat. Right now, best method seems to be a combined approach of Botox and casting (not a method we have done together yet, but seperately). With any luck, we can work in the Botox procedure and the subsequent 3 week casting period all before Christmas. And with any further luck, it will help our girl move with a little more ease and comfort.
A playdate. Our girl had her first one! H and Oia are mutual BFF's and I consider the relationship that these two have as classmates to be a prayer answered. H begged for a playdate with Oia and we made it happen. The two of them got messy making pizzas together that neither wanted to eat because no one was willing to stop playing long enough to take a bite. It was 3 hours of little girl bliss for H and Oia and 3 hours of "Oh my god, I can't believe this is happening but I'm so darn glad it is!" for me. It's a friendship made between two girls who chose to be friends. No family connection, or influence, because of the special needs community we often find ourselves in, but two girls who simply connected. For no other reason than that, they wanted to be friends. And so they are. That's pretty awesome.

So, the Kindergarten kinks have been ironed out (for now), hoping Botox will allow our girl some relief, and in the meantime, we will all just play the day away. We do that well around here. And if all goes as planned, we'll have one kind-of-a-big-deal thing to be thankful for this Thanksgiving. Stay tuned.

Friday, November 1, 2013

Halloween at UVa

Halloween on the Lawn at UVa is always over before we know it, but each and every year we end the night by saying "Man, that was SO much fun!" Hundreds of costumed people of all ages flock the Lawn to not only fill their bags (or their children's) with unnecessary amounts of sugar but to simply mingle while admiring and adoring all the creative attire. The historic grounds surrounding the famous Rotunda and the atmosphere of the evening really are amazing.
After picking Oia up from school, we headed straight into town to meet Daddy "at work", whose office is a part of the UVa health system and walking distance from the Lawn. Oia dressed as a black cat and Esme would tell you she was a "mernaid", which she demanded to be at least two months ago. Poor Elmo fell off her radar shortly after her birthday party and since then 'mernaids' have swooshed in as this 2 years olds current obsession.

As soon as we arrived to the Lawn, we funneled into line to begin our evening as beggars. We allowed the girls to fill the bottom of their bags before breaking from the line and venturing out into the more open spaces of the Lawn. And as all the years before, Oia just sat down in the cool grass as her heart pleased to absorb the craziness and endulge in some chocolate. Instant gratification. Little sister agreed that was a fine idea.

Oia amazes us. Not an ounce of fear could be seen on her face this year as she scanned over many costumes; some of which would have scared her in the past. This year though, she couldn't get close enough despite size and spook factor. She was on a quest to check out everything. The return of the famous viking crew fascinated her, and everyone else for that matter.
And so did the walking dinosaur skeleton, or whatever that thing is...
But Esme? Not so much. She took refuge in the safety of our arms until the scene was clear of horned men and other mysterious figures. You never know about those walking dinosaur things or what they may do...
The pups in costumes were far more Esme's speed. And I do believe the ratio of costumed animals to costumed people was nearly equal. The littlest Teaster has a deep passion for the four legged friends.
Then of course, you know, you have the random sea creature, banana, gingerbread man, and slice o' pizza. Supreme, of course.

Oia made friends with them all. So neat to see her bust out of her shell and take on the little things that were once her big things. We found ourselves trailing behind her as she bravely left us when a certain costume caught her eye. Rob and I would just look to one another, shrug our shoulders, and laugh in a way that translated to oh well, I guess we're going this way now!
Our family's 5th annual Halloween on the Lawn at UVa was another Halloween night well spent. It's one of our favorite family traditions thus far and I'm willing to bet the girls would agree. Neither of them were happy campers about returning to the car even though this year we stayed long enough to see the place clear out. All good things must come to an end though but Man, that was so much fun!