Individualized Education Program: My Headstart: Part 1 

By Rob Targos, originally posted 1/30/2018

I was born in 1972. I attended preschool and kindergarten through United Cerebral Palsy in New York City. The first teacher I remember is a cop. If you could see me: I was around five years old in Brooklyn. I held onto the steering wheel and I sat in the driver's seat. There were no traffic lights, no road signs but I went ahead because this was Greenpoint. I felt a tap on the shoulder.  I held the wheel still or as still as I could with the spasticity in my hands. With cars parked on either side, I wanted to stay in the middle of the road. I rolled along at about 3 to 5 miles an hour. Then from behind the cop stopped the car. I slowly got out, slow was my regular pace anyway. The reached over and put my hands in cuffs. 

It's not as dramatic as it sounds. But I added drama for effect. The handcuffs were mine because they were part of my crutches. The other part of that story was the cop did stop the car from behind because I was sitting on his lap and he braked after we got to my house halfway down the block. He allowed me to steer or in this case not steer by holding the wheel still. Sometimes the best move is not to move. If inertia is taking in a good direction keep going. This was not the only time cops had taken me home. You see, cops routinely took me home after I had spent the day in school at UCP in Manhattan. I fell, metaphorically, into a situation where it was easier for the cops take me home then for UCP to provide accessible van transportation for a kid that lived 20 minutes from Manhattan. They were real resource officers in multiple ways! :-)

I learned many things from those early rides.

When I got nervous, I held still, I didn't freeze. There is a difference.
Handcuffs had a different meaning for me.
Cops are cool. They solve some of life's mundane but weird problems.
I wanted to be a cop. At least that was the first and wanted to do. After all, I have my own Billy clubs. :-)
When faced with a choice I had to do the right thing.

Lastly, the cops were Robbed in a good way! :-)

I attended Catholic elementary and high school. They didn't have IEP's in the 1980s. My parents met with the principal to discuss and negotiate my mainstreaming process. There are basic and reasonable accommodations made by the school. The basic rules pertained to safety. Liability became the school's first concern. They obviously didn't want me to get hurt, but they also didn't want to be sued. During first through third grade, classes were on the first floor. Teachers gave me a 5 to 7-minute headstart, before the end of class to leave and get ready for the next class. Recess and lunch were the only times I needed to negotiate stairs. Teachers also allowed me to finish tests during recess. Related to recess, I wore sneakers all day with my school uniform, in the once-a-week in gym class In fourth grade, my orthopedist recommended hamstring surgery. After surgery and recovery, I went back to school in a wheelchair and the cast. The school made arrangements with janitorial staff, teachers and some of the administrators to help me in school. I remember having trouble focusing because of the issues and scratches that a cast necessitated. But those were minor distractions compared to using the bathroom.

Many times, even before the cast, I rushed out of class with ambulatory stiffness, legs braced and raced against the time given by my bodily functions. To my recollection, it averaged about once every two weeks.My parents arranged with the school nurse, to have extra changes of uniforms and underwear. My parents didn't want me to wear Depends or a diaper, because of the social stigma they associated with it. The cumulative impact of not having command of my muscles devastated me. But not having control of my bodily functions often obliterated my already shaky social confidence. To make matters worse, the gray pants I sometimes changed into had a noticeably different shade of grey. Then again, even grey/gray is spelled two different ways. The noticeable color change made me a soft target for misunderstandings and insults, especially with a groupthink mentality.

Social survivability became secondary to academic achievability. After all, I could control my mind with much more efficiency than the repeated revolutions of my spastic stiffness. Physical therapy every day at night were coupled with weekly afterschool visits to Jawanio, a New York UCP affiliate. I had occupational therapy followed by physical therapy. Social anxiety also caused stuttering, but my parents didn't view it as an emotional problem. They saw it more as a personal problem. Remember times were different then. My parents wanted conditional compliance. They and others equated expressions of individuality or lack of conformity to weirdness that stemmed from my actual and perceived instability. Luckily, I had one special education ally. Mrs. Murphy, my seventh grade English teacher understood my struggles more than my parents and my classmates, because she had a son, Daniel, with down syndrome. She and I understood the confusing complications and personal pressures, like no one else. 

I did have friends that helped me and stood up for me and even tried to understand my disability. My friend, Tricia, struggled academically. Even though we struggled in different ways. We understood each other because we were often both misunderstood. Years later, after high school, she received an ADD diagnosis. She later worked at a high school in special education administration in New York. 

Over time, just like I was conditioning myself to compete and succeed, I realize now, my classmates and teachers were becoming conditioned to my disability. I understand when students tell me they are often confused, and overwhelmed by the accommodations or inclusion process. When students with disabilities and struggle with a basic level for safety and security, it can be more of an ordeal to focus on higher-level needs. 

Next week, I will continue to talk about struggles with education in grammar school and how Chief Justice John Marshall rang my Liberty Bell.

Parent Tip Tuesdays are authored by Rob Targos, self advocate in the special needs community with a focus on Cerebral Palsy. Opinions and ideas expressed are his own. To contribute to Project: Just Like You, please contact us!