Wednesday, July 4, 2012

Our first parade

Alexa and I participated in the local "anyone can join" parade today.  There was no way I was going to be able to stand around while waiting for the parade to begin, and then walk in it too, so I decided to bring my scooter.  We needed to test the battery before taking it to Disneyland next week anyway since it's been sitting in the storage unit for a few years now. 
We had so much fun.  This is one of the days that I love living in a small town.  Within minutes of arrival, we saw someone we knew.   After talking with them for a few minutes, Alexa saw a little digger that was pulling a trailer in the parade, so we went over to investigate.  After I mentioned that Alexa loved diggers, the owner turned it off and helped her to sit in the seat.  After about 3 seconds she got down to go investigate the digger bucket part (I don't know the correct name for this kind, it was the kind that's as wide as the whole vehicle, and flat on the bottom, maybe it's a loader?)  anyway, she was signing digger, digger and jumping up and down gleefully.  Even when she's not using the talker she communicates very effectively. 
By the time the parade started, we had seen at least 15 people we knew.  We were loaned some shiny bead necklaces for Alexa, because we hadn't planned ahead for this and finally we started walking.  It was quite the exercise in working together, there were a bunch of kids on bikes and scooters, and it was very challenging not to run into anyone with the scooter while trying to see where I was going through Alexa's head.  What was really fun was seeing all the people who turned out to watch this motley collection of people walk through the streets of town.  I felt very much a part of a community, and I felt lucky that this is one of the ways in which Alexa is exceptional.  She loves people, and they love her.  I know that it's possible we will have to leave Corvallis someday when David gets a job somewhere else, and I hope that I remember how important it is to get out there and participate in the community that we live in, even when it seems like work. 
This experience of belonging in our community made me think about when I heard David Pitonyak speak at PIP in April.  You can read about him here.  The theme of his talk at PIP was that people are hardwired to belong, literally.  The human brain experiences and responds to rejection in exactly the same way it responds to a punch in the face.  This talk further crystallized my already growing realization that what Alexa needs to learn in school is not how to be completely independent, but how to give and receive help from others.  None of us is independent in this life.  We all buy food that we didn't grow ourselves, we visit doctors and lawyers, we count on family and friends for emotional support.  I'm not suggesting that we discard academic pursuits, but that it be balanced against the equally important need to belong.
My greatest fear regarding Alexa's future is that she won't have friends and family to support her when David and I are gone.  It may be that Alexa will need more adaptations to allow her to live a full life than that hypothetical "typical" person, but all of that is easy to provide, what isn't easy to teach in a segregated classroom, is how to be a friend.  This is not because I devalue the friendships I enjoy with those who have IDD, but because 99% of the world does not have IDD, and it's very hard to learn how to behave like a 3rd grader when you don't spend time around a bunch of other third graders.  Alexa has always been surrounded by adults who will do the work of conversation for her, so she gravitates toward them, only in the past year has she begun to learn how to ask questions and comment on things with her same age peers.  Alexa has spent 3 years in a segregated classroom, but none of her classmates from that class came to her birthday party, whereas about 10 classmates from second grade were there.   We have been fortunate enough to make a real friend or two (ones not forced by parents) from the grade level classrooms.  One of them told me today that she loves Alexa's uniqueness.   This kind of friendship wouldn't have been possible had Alexa not spent part of her schooldays in the general ed classrooms.

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