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.


  1. Oh, that last picture: so priceless! Glad to hear about these great updates. Kindergarten is hard, so different from preschool... so much more time away, so much more opportunity for the ball to be dropped. We actually got a couple of kinks worked out this evening. Elijah is happy about school, so I'm happy too (just like you!). :)

  2. This post brought years to my eyes. I just love it when miracles happen and there is no other explanation. Here's to friends--God's priceless gift to us.

  3. As a soon to be SLP you remind me that parents know their kids best and I should always remember that Mo. Thanks.