High Risk

It is a common assumption in our society that high risk is often paid off in high rewards. I have never been one to shy away from risk, after all, I consent to my husband riding a Ducati, in the Santa Cruz mountains. Recently I was given a choice that required a risk of the highest investment, Claire. Our school district contacted me last May. The classroom that Claire had been in, a county program at our local school was being shut down. We had the option to place her in a classroom for those more severely affected further from home or to place her in a new classroom at the same school. It seemed like an easy decision at the time, she should stay at the same school, close to home, in a class with kids that were higher functioning. Side note:stomach turns at the mere thought of higher functioning and more severe as the options. Being in a county program at a local school was oddly isolating, as much as everyone wanted to pretend that it was all one big happy group of kids, I had a hard time feeling like Claire attended the actual school as opposed to just the county program. I was very optimistic about how great it was going to be just being in the special ed classroom on campus. I don’t know what I pictured but as we are getting closer to the start of school (roughly 10.5 hours away) I am realizing just how delusional I was. At first I was a little concerned when Claire’s class was left off the class roster that was posted at school last week. It bothered me that the students in Claire’s class were invisible but I thought that maybe it was a small clerical oversight. Then, it all hit me like a ton of bricks today, as we went to the meet and greet. First we went to visit our teacher in the special ed classroom. She is wonderful! She believes in Claire. After meeting a few of the other students in that class we wandered over to her 1st grade classroom (she is repeating 1st grade due to a lot of environmental craziness) to see her teacher that she will be mainstreaming with again. As we crossed the campus I heard a lot of children say to their parents, “there’s Claire!” However, not one said hello to Claire. I wrote it off to start of school jitters. After 1st grade we headed over to meet the new school nurse. She was busy and called to talk to me later. Claire is missing a few immunizations. I explained that due to the regression associated with what we did not know at the time to be rett syndrome, we missed some but were working to be caught up. Her response shocked me. She felt that it wasn’t a big deal because the kids in Claire’s class didn’t really mingle with the rest of the students. As she said that I couldn’t respond as I was just trying to keep breathing without uttering a string of profanity at her ignorance. I somehow muttered that Claire was also in a reg. ed 1st grade class and she suddenly remembered that and went on with the rest of the interview. Between being left off the class list, being talked about and not to, as well as the assumption that Claire need not be immunized since she isn’t around that many children, I realized just how much was at stake, a lot. It is risky to challenge the status quo. Perhaps it would be easiest to just stay in her special class and not make the rest of the school see that there are people who are of high value and cannot walk or talk. I am scared. Claire is in the best place that I can remember in years. She is thriving. Tomorrow I hand her over to a new teacher, an aide who is wonderful but new to Claire and this role and an environment that does not lean in the direction of true inclusion or overall understanding of people with disabilities. Things can go one of two ways. Either I will be right, Claire will scream when she feels isolated and scare her aide to death when she stops breathing due to anxiety, she won’t eat for days and spiral into a pattern of seizures or it will go better than I could have dreamed of. Classmates will be yelling goodbye to Claire as I take her to the car and her aide will be telling me how seamlessly Claire pulled through her episodes and all of the fun they had through the day as they learned lots of fun new things. I really hope that I am wrong. I believe that I might be, rather hope that I am wrong. It is just so scary when the risk that you take is with your child but at the same time, if we had just retreated to the county program far away, there would have certainly been very little reward. So here is to hoping that my next post is about how you shouldn’t judge and how great school is going!

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