Friday, June 1, 2012

More involved

Having a child with rhombencephalosynapsis is difficult. We are often acutely aware of how difficult some things are for Abby. What makes these difficulties even more glaring is the fact that she is a twin. Watching Grace master things so quickly and watching Abby struggle has always been hard for all of us. When Grace was sitting up Abby could barely hold up her head. When Grace starting sitting up Abby couldn't even roll over. Grace was running (fast!) before Abby took her first solo steps.

Thankfully in the past couple of years the differences have become less relevant. Yes, Abby is slower, smaller and clumsier but they are such different children that it almost doesn't matter. I sometimes wonder if the gap seemed to close more because we have gotten used to it than because it actually is closing.

Well last week the gap seemed to become a canyon. We are in the midst of making decisions about next year. We had assumed the girls would stay together and that was our request to the school. When we finally heard back we realized that Grace had tested so far ahead (like third or fourth grade) that she would not be placed in the MDK class (multiple disabilities kindergarten) but Abby would. So not only are we being asked to split them up, Grace will be in a half day integrated classroom (because of her ADHD) and Abby will go full day.

I am guessing that by mid-next year we will barely remember this process. But right now the wounds feel so fresh. It feels like a stark reminder that Abby is different. The school uses the phrasing "more involved" but that hardly softens the blow. No matter how much we push to "normalize" Abby there will always be differences between her and her peers. RS will always be a part of her life. That makes me sad. We're lucky in that right now she doesn't seem to mind. She doesn't see herself as all that difference. (She's more upset about being smaller in stature than her peers than anything else.) But I guess only time will tell.

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