Jan 31

Not so Equal in Middle School

My nephew is going through some major struggles during middle school. I remember those awkward years quite well. Trying to fit in to any type of group that will have you. Those years that you are not a kid and not yet a teen. You are in search of yourself and your independence. I’m sure I felt some of the same ways my nephew is feeling now, but being disabled my experience was very different. My lovely school system had all summer to hire a school aide for me, yet they dragged their feet. I needed an aide with me throughout the day and take care of my tracheotomy, oxygen, and be there in case of an emergency. The school wanted my mom not to send me the first day of middle school, to wait until they hired someone. My mom said, “No, she will be there the first day like everyone else.” I was there the first day and so was my new aide. Sixth grade was particularly difficult for me. My new classmates had tons of questions about my disability, when I just wanted to blend in. I had an adult with me constantly, and could never just be alone with my friends.

Things became worse that first year when my newly hired aide found out she had breast cancer. Now my home nurses and mother was filling in for her. Can you imagine middle school with your mother with you? Man, it makes me shutter all these years later. I was always connected to an oxygen tank or at night a ventilator. That meant no sleepovers at my girlfriend’s houses. I could not go hang out at friends’ houses. Despite all my health problems, I still had normal wants and needs. Your friends and your privacy are huge at that age. You don’t want your folks or any other adult in your business. Any little thing can embarrass you. You’re changing in so many ways. When I got to middle school the school felt it would not be safe for me or my classmates if I attend regular PE. I grew up with three older brothers so I loved sports and had a pretty good athletic ability for someone who was 3’5” and hooked to oxygen. It was my favorite class and now I was stuck in adapted PE with a teacher, and my aide and that’s it. It’s hard to get an education when your own teachers in your school system are scared of you and your health problems. I have had to deal with so much discrimination in the school system growing up, but hopefully it paved the way for others.


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  3. DeeDee

    Thanks for sharing… I am one of those Aide’s.. I work one on one with a autistic boy, non verbal, runner, in the elementary level and will follow him as long as they need or want me to. I try very hard to give him the space he needs but yet I know I cant be more then an arms lenght away from him. I cant begin to imagine what thoughts go through his mind each day as he looks over his shoulder and sees me every moment in his sight. Any thoughts on what I can do to make him feel more free…

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