Yesterday a friend said something that I reacted so strongly to, it made me realize I still have a lot of raw emotions around this stuff with Hannah. I know she came from a place of good intentions but that's not how I received it. Here's what happened:
I was sharing that the girls have been sleeping horribly lately and that maybe it was because they haven't been getting a lot of fresh air and exercise because of all the cold and snow and the fact that they've been sick on and off for the past month. I then said that it would be great to be able to go down to my parents' for a few weeks where I could get some extra help and R & R. My friend, S, asked if I would consider making the long trip down to their house on my own, without B, and I said that I thought it might be easier when they're older, and when Hannah was independently mobile.
S then asked (and this is what got me), "Are there any activities or things that just Isabelle could do, like gym classes or something like that?"
I think that S probably had good intentions in mind when she asked this. Although she didn't say this, I imagine she probably offered this as a possibility to help deal with the sleep issue. I'm guessing maybe in my comments, she heard "lack of physical activity," and "hard to do because Hannah is less mobile" and thought perhaps at the very least, there was something Isabelle could take part in to help out with some of what's going on.
But what my ears heard her say is not at all what my heart reacted to. I felt myself get stiff and tense and flushed, and I said something like, "there really isn't anything that Isabelle would take part in that couldn't be adapted so Hannah could participate as well." And then, "and we're not at all there, anyway, in terms of separating them and getting them involved in different activities."
I'm sure S sensed my tension so we dropped the subject. Later that day I had more time to think about why I reacted so intensely to her comments. There are the environmental factors:
-I was operating on about 5 hours of sleep, one in a sea of many days this past month that I've had less-than optimal sleep
-Winter has come early and relentlessly to our neck of the woods and I'm feeling the affects of being cooped up, sedentary, and without much fresh air or sunlight
-I have PMS
These things made it that much easier for my buttons to get pushed by what she said. The "is Isabelle missing out on important experiences because Hannah is holding her back?" button; the "will there ever come a time when Hannah can fully participate in physical activities like her sister can?" button; and the all-encompassing, "am I doing enough at all for either of my girls?" button.
I also thought I heard in S's comment something bigger, something that gets to the core of the "mainstreaming special needs kids," debate. S is a generation older than I am, and I wonder if she, having likely been raised in an educational system that kept special needs kids out of regular classrooms, has a bias, unconscious or not, as a result of that experience.
We are new to this "differently abled" world and because the girls are so young and Hannah's limitations not that obvious to the casual passerby, we haven't yet had to deal with other people's opinions about making accomodations, adjusting curriculum so all can participate, being inclusive, etc. But this encounter with S made me realize that we will be faced with this, and have to deal with it.
I may have over-reacted and read way too much into what S was trying to say, but the point is this: I am coping well, but I am still raw, and given the right combination of things going on, I can be easily set off. And while I'm getting better at navigating play groups and story time and other casual kiddie encounters, as the girls get older it's going to get more and more challenging to navigate the maze of social, cognitive and physical opportunities and find those that are the right fit for both of our girls.
It's overwhelming. And I need to remember to take it one day at a time.
I know I'm always referencing Thing 1's school, but I want to do so again - today all the kids with their varying gifts, talents, and abilities came to campus to sled. Being two buildings over, I went and joined in, and what fun! I'm seeing amazing inclusion -- many just need to catch up and realize that this is how we do it now and that it benefits everyone. I saw some kids with very severe physical limitations right in there. One kindergartener, who is completely immobile (and unable to sit erect)went down over and over again -- and not just with a teacher, either - I pushed her down the hill more than once myself, sandwiched between two other kids -- and she laughed. They all laughed. The kids with milder challenges were impoaaible to sort from the typically developing children in this context -- everyone rolling in the snow, sledding, goofing around. About 30% of the kids in the school have special needs -- but they mainly need to have fun and learn, and work just like everyone else. S probably just doesn't know. You do!
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