Kliewer: A Personal Experience.. A Lifechanging Exchange...

My Life in Special Education: Personal Recollections

Reading Citizenship in Schools: Reconceptualizing Down Syndrome by Christopher Kliewer really made me reflect on my own personal experiences. After graduating from URI in 2007, I found that the education job market was completely saturated with history teachers. Thirty history teachers graduated from my program at URI that year alone, and I can only imagine how many others from different colleges and universities as well as those who have been subbing in the system for years were vying for those coveted public school teaching jobs in Rhode Island. My mother suggested applying through the diocese, but because I have unfortunately become a “cafeteria Catholic” (you know, picking and choosing what I want and don’t want from religion), I felt uncomfortable asking my parish priest (who was there when I was baptized) for a recommendation. I lasted three months subbing in the West Warwick public school system. It wasn’t the kids that turned me off from the job; it was the inconsistency in hours and lack of health insurance. I decided to look for anything that involved in the education system. I came across an advertisement for a teacher’s assistant where the description was handling children with “developmental and behavioral disorders.” Well, I’ve never worked in special education before, but I applied anyway. Within a day of faxing over my resume, I received a phone call to go on an interview at the Sargent Rehabilitation Center Day School- a school designed specifically for students with severe and profound special needs. Now after going on a successful interview with the hiring director, I started in a “high school classroom” with children ranging from 14-21.

I absolutely loved my two years I spent at Sargent. Honestly, I would have stayed there but I knew ultimately I wanted to at least give public school a try (to this day, I credit my experiences at Sargent with the reason why NPHS hired me in the first place, and I always request the inclusion classes at the high school). I worked with a population of students who I would have never gotten a chance to work with had I been able to find a teaching job right out of college. I was a teacher’s assistant for about a year until I was promoted to reading/ literacy teacher of the entire school of about 40 kids. As Kliewer states from Judith Snow, “how absurd to be judged by others at all, especially by those who have never experienced a disability or who are unwillingly providing us with support or who don’t listen to the voices we have.”(72) I worked with children who were verbal and non-verbal, so I got to figure out ways to communicate that involved other methods, such as tech-talk devices, sign language, writing on paper, spelling, or simply reading body language. I worked with children who were severely on the autism spectrum, traumatic brain injury, and literally other disorders I had never even heard of because of their rarity.

I was complaining one day at Sargent how I still made minimum wage at my 20 hour a week job at the YMCA despite my four year college degree and the fact that I was working with the Y for over two years at that point. I was then introduced by a co-worker at Sargent into an agency that specializes in HBTS (home-based therapeutic services). I applied for the job where I literally made double the amount of money and had more flexible hours. I quit the YMCA, and for the first time ever in my life, I had two jobs that BOTH focused on a severe/profound special education population. I started working with a young, 14 year old girl named Wendy* (*names have been changed) who has a disorder so rare that it is a 1 in 200,000 chance both parents carry this recessive gene and it is only a 25% chance a parent who has one child with this disorder (her older brother) would have a second child with the same genetic issues. Wendy will be turning 18 this month, and I still work with her (over three years now) despite being enrolled in this master’s program and working as a full-time teacher.

I could not help but think of Wendy throughout this entire Kliewer reading. I am sure taking one look at Wendy and her brother Peter*, ordinary people would just see their disability. Physically, Wendy is only about 4 feet tall, and her older brother uses a stroller to be pushed around in. So, when Kliewer talks about how John Dewey believes that “democracy is a way of life in which community both establishes and is derived from each individual’s recognition of the value of every other individual.” (72), he is essentially saying that humans need to find the value in ALL humans, not just the ones that looks or act the same way we do. I find that Wendy has impacted my world just as much, or even moreso, than I impact hers…

Sometimes it is the little things that we need to appreciate. When I am out in public with Wendy, Peter, and their mother, I get angry when I see people stare. It’s inevitable, but I wish I could go up to parents who are screaming at their kids for touching groceries and say “you should be grateful your child has the ability to help you.” When describing a student named Lee, Kliewer writes “People see him. They see mental retardation, whatever you want to call it. That’s what they see, but they wouldn’t be seeing him. Do you know what I mean? Because Lee is Lee, and anyone who knows Lee knows.” (84) This is what I want to verbalize when people see Wendy. I wish people knew her for her, and not just her disability. The way Wendy and I interact may seems as odd to those who don’t know our relationship, but I find communicating with her, despite the fact she is non-verbal, to be relatively easy. She loves power tools, and sometimes we spend 15 minutes mimicking the sound of a circular saw or a lawn mower. She loves singing and playing “follow the leader” around the house. We read books together, despite the fact she cannot read at all but merely holds on to my finger as I read each word to her and she smiles. Her receptive language far supersedes her expressive language; she can point to various objects in the house and knows exactly where they are. She loves ice skating, despite the fact she’s never been on ice. She loves snow, and we listen to Christmas music no matter what time of the year it is. Yes, she may be different, but she is who she is. When I first met Wendy, I saw her as a child with a severe disability. Now I see Wendy as a typical teenager more and more every day. She wears skinny jeans, sweater dresses, and knee high boots with fur. Her love for dancing is evident at every school dance. She always hogs the radio when we are in the car and sings incoherent sounds to the melody at the top of her lungs. When Kliewer quotes Shayne by saying, “So what if you don’t fit exactly what you’re supposed to?” (77), I ask the same thing to those people who have never experienced working with a child who needs more assistance than normal. Don’t judge before you know them.

Wendy attends Meeting Street school, which at her level is not inclusion and she has never experienced being socially around typical kids her age ever in her life. When she was in elementary and middle school, educational policy was the segregation that Kliewer fights so avidly against in his article. I think it is great that Vygotsky, a well-respected theorist in child development believed that “the culture of segregation surrounding people with disabilities actually teaches underdevelopment of thinking through the isolation of children from socially valued opportunities.” (83) It is utterly disappointing that Wendy, because she is non-verbal, was placed in a classroom for other non-verbal children. How could Wendy’s life have been different if she only heard other voices of her peers while growing up? How come Wendy talks to me? Oh, it’s because I force her to, engage her in conversation, and talk TO her (not AT her). How come I was able to get Wendy to stop signing the word yes (shaking your fist up and down) to say the word “yes” out loud. She says “Hi Tina” (I mean, she SPOKE my name! It took 2 ½ years, but she finally said my name!) It is important to remember that “school citizenship requires that students should not be categorized and separated based on presume defect.” (85)

While closing this personal account, as is evident, this is a topic that is close to my heart. I want to conclude with a quote from Kliewer. Please, remember as an educator that, “a sense of reciprocity or shared value exists in relationships in which individuals, including those with the most severe disabilities, are recognized as thinking, feeling, caring human beings with personalities of their own.” (88) Wendy has more personality than some mainstream students that I know. I wish everyone had the ability to work one on one with a child who has a disability just to appreciate patience. Just to appreciate the little things. Just to appreciate success in situations that seemed like there wouldn't be success. And really, just to appreciate.