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Why I Walk for Autism

Amy Blumenfeld is an effective practice specialist in the area of autism spectrum disorders. She supports SSD staff with effective programming for communication, sensory, cognitive, behavioral and social needs of students with autism. For the past two years, Amy has served as the Autism Speaks Annual Walk Chair for St. Louis. Last year, 22,000 walkers raised more than $900,000. Amy's passion for supporting student's with autism is evident in the speech she gave at the walk kickoff this summer.

The question of why I walk isn't an easy one for me to answer. My story is very different from the stories of the talented and passionate previous walk chairs over the past eight years. I don't have a child with autism. I don't have a sibling with autism. I don't have a niece, nephew, cousin, aunt, or uncle with an autism spectrum disorder.

I do, however, have hundreds of students in my life and have been fortunate enough to be a part of their journey.

My journey into the field of education is what I call a wonderful accident. It started in 1995, when a teacher gave me the following assignment - “Walk a mile in the shoes of your future self.” I was supposed to work in my future career, and I really thought this would be a simple task.

I knew I was going to be an endocrinologist, so I contacted St. Louis Children's Hospital and inquired about shadowing one of the doctors within the endocrinology department. Little did I know that privacy laws would restrict my access to seeing what it was like to be a doctor. They couldn't even offer me access to sitting in on brainstorming sessions for patients, and I certainly couldn't be present when they met patients. Defeated, I went back to my teacher to brainstorm next steps. As the component of endocrinology that truly interested me was working with children, she put me in contact with a local Early Childhood Center, and by the next week I was scheduled to volunteer in a classroom of four- to five-year olds. I arrived at the school excited to see the students only to find out that there had been a flu outbreak in the classroom and they were overstaffed. Once again, I was turned away defeated. As I was gathering my belongings to leave, a teacher approached me asking if I would volunteer in one of the special education rooms as they were short-staffed that day. I thought to myself, “Kids are kids, right? Why not volunteer in that room?”

I walked into this new room and greeted the first student I saw, but he didn't return the greeting. As the daughter of an early childhood teacher, I knew that kids warm up to others at their own pace, so I didn't push the greeting but instead smiled at the student and moved on. The next student I saw was rapidly waving his arms and the teacher was trying to redirect him. A third student was spinning a block while another adult asked him what color his block was. As I stood there “taking it all in,” the teacher approached me and asked if I would play a game with a student. I greeted this student and was surprised when he echoed my greeting using almost an identical tone as mine. We sat down to play the game, but the teacher cautioned me that they were working on turn-taking skills. After the student's first turn when I thought it would then be my turn, I understood why she warned me turn-taking wasn't his strength. As I went to take a turn, what I learned later was called a full meltdown, took place. This young boy continued to scream and cry as he grabbed my hands and squeezed them. Not knowing exactly what to do, I sat quietly with him and squeezed his hands each time he squeezed mine, not really knowing why that made him get quieter each time I returned the squeeze. After a few minutes, I noticed the staff in the room watching the two of us sitting there just breathing while he calmed down. The teacher again approached me and stated that the student must really like me to allow me to hold his hands and to give him pressure. In my head, I was thinking that this woman must be crazy or she must have missed the fact that I caused him to cry when I took a turn. I thought they were going to thank me for my time and send me away before I caused any other meltdowns, but two hours later I was still there tagging along with this student. As the afternoon progressed, the teacher shared with me that the students in the room all had a disability called autism and that's why they weren't communicating with me in a way that I was familiar with. As I left the classroom that afternoon, I remember being thoroughly impressed by the teacher's ability to know what the students wanted when they weren't using spoken language and many times were crying, stomping or not looking toward the adults.

I headed home as fast as I could and looked up the word “autism” to see what it meant. A few hours later, I stepped away from the computer absolutely fascinated by this disability that meant so many different things for each person it affected. When Monday rolled around the following week, I returned to the Early Childhood Center and secretly hoped the original classroom was still down with the flu. (I know, that's horrible to wish the flu on anyone, especially children, but I really wanted to go back to the special education room.) Sure enough, the teacher asked if I'd be okay with working in the special education room. Week after week, I returned and worked with the students. The progress the students made over the course of the year was astonishing. I found myself not having the dreaded Sunday night blues because I knew Mondays meant I got to go see how the students were doing. As the months passed, the teachers in the room showed me different techniques for working through behaviors with the students and allowed me to lead activities with them. Little did I know that my dream of becoming a doctor was slowly changing into a dream of becoming a special educator. The directive to walk a mile in my future self's shoes took place, just not in the fashion that I expected it to.

I continued to return to this classroom to work with the students year after year while I continued my schooling. Each new group of students provided additional learning opportunities for all of us. One particular student caught my attention as he was participating in an intensive therapy program. His parents asked if I'd consider being trained to be one of his therapists, and I jumped at the opportunity. Applied Behavior Analysis, or ABA therapy, was gaining more momentum in the St. Louis area at the time and I was so happy to be a part of this student's team. I worked with him seven days a week, sometimes going to his home to provide therapy sessions and sometimes going to his preschool classroom to work on the same skills we focused on during discrete trial sessions. When I started with him, he would not sit down to participate in activities. He did not have a consistent method for communicating his wants and needs, and he was fairly aggressive toward anyone that invaded his personal space.

As we worked on communicating his basic wants and needs, I got to know his family. After sessions at his home, I would talk to his parents about future learning targets and I was surprised to hear from his mom that he'd never addressed her by the name “mom.” I knew he said “hi” to his parents when they said hi to him, but he never added the label “mom.” This piece of information stuck with me, and as I worked through our discrete trial training sessions, I added a greetings program to his schedule. For months, we worked in secret on adding correct names to a greeting in hopes that he would look at his mom and say, “Hi, Mom!” One night he was thirsty, so we went down to the kitchen where his mom was preparing his reinforcers for the next day's therapy sessions. I remember standing in the doorway watching him pull on her hand to get her attention. She got him his cup of water and then as I thought we were ready to go back upstairs, he looked at her and said two words that meant more to her than “you've just won a million dollars.” He looked at her and said, “Hi, Mom!” for the very first time.

Flash-forward 13 years and this little boy has turned into an amazing young man. When I see him in the school setting, he greets me by name and initiates a conversation. It's still a scripted conversation, but he initiates it because he wants to. There's communicative intent behind his interaction. From a three-year-old who was not using spoken language to a young man that shouts my name across a room or cafeteria, he's come a long way.

His is not the only story that I go back to in my mind when I'm asked to answer the question as to “Why I Walk.” I walk because when I started my career in 1995, the prevalence rate for individuals diagnosed with autism was 1 in 2500 and it's currently 1 in 110. I walk because our work here isn't done. We've come a long way, but as the memory I just shared illustrates, we have a lot of work ahead of us. I'll continue to walk until that last piece of the puzzle is figured out. I walk in support and appreciation of the families that have trusted me to be a part of their children's and their lives. Finally, I walk as a thank you to all of my amazing students that have touched my life in more ways than they will ever know.

 
Why Will You Walk?
Join the SSD Walk Team, "Aiming for Answers" on Oct. 15, 201. Entertainment begins at 11:30 a.m., 5K at 12:15 p.m. and thewalk begins at 1 p.m.

Register for the team.

Contact Amy Blumenfeld at ablumenfeld@ssdmo.org or Lesley McGilligan at lmcgilligan@ssdmo.org with questions.
 
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Special School District of St. Louis County (SSD) is a leader in providing special education services to students with disabilities and also provides a wide range of career and technical education programs.
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