Sunday, November 20, 2011
A Good Couple of Months
So, two months almost exactly have passed since my last update, so I thought it wouldn't be a bad idea to go ahead and do a quick post, since the past couple of months have yielded a lot of good surprises.
How have the past couple of months progressed? Well, to be honest...not badly! I don't want to jinx anything (nevermind superstition anyway, eh?) but we have noticed a wide range of improvements in Pele. From cognition gains to emotional control...we've been very pleased with what we've seen.
Since lowering her medication dose on September 26th for the last time in 2011 (beginning gradually again in early 2012) we have seen a dramatic increase in learning (including the beginnings of reading), and a general improvement in her cognition, attention and interaction. Pele is almost indistinguishable from most of her peers. Even though she has some minor language delays still (mostly due, I believe, to her still being on the medication) she is otherwise doing a lot better than she was.
This is not to say that things are 'normal' but they are closer to normal than I've ever seen them. If things continue along this path, then Pele probably will be considered neurotypical, and that makes me very happy. What also makes me happy is Pele's continued seizure control--almost two years now come January.
For now we're handling Pele's education at home. We're working on numbers and very early math, reading and writing, and other basic skills. I'll re-assess her situation as time goes by. With her special diet (no gluten, dairy/casein, soy, peanuts, etc) I don't feel like throwing her in a typical school with its glut of unhealthy, allergen-laden foods and also its 'lost in the shuffle' child syndrome.
I really want to get Pele going on our own before we throw her into the public school fray, if ever. My hope is that I'll either get into a good home school groove or that I'll find an affordable Waldorf school that I'd be comfortable sending her to, and where I'd know her dietary and supplement considerations would be honored.
This will work for now. I am just grateful things are going as well as they are. If that means having to homeschool her, then so be it. I know I'm lucky to be able to stay with her, even if I sometimes wish I had more time to myself, even if I sometimes wonder what I'm doing. But at least my efforts and my heart are in alignment, and I am working on doing what works for us.
In addition to these wonderful strides, we've also noted Pele's sleep stabilizing. She is sleeping a completely full night of sleep, in her room and in her own bed, for 10-11 hours a night! This is a far cry from what her sleep was like even as little as half a year ago. I know getting adequate rest is also essential to mental acuity and emotional stability.
As the year winds down I'm mostly trying to integrate what we've learned so far, and make goals for Pele's future, in a way that's sensible and also conducive to a continued environment of growth. Pele will surprise us all, I know, with her tenacity, sweetness, spunk, humor and intelligence.