Heel to toe. Heel to toe. Walk on the line. It’ll help.
Follow my finger. Not with your head. With your eyes.
Touch my finger. Touch your nose. (Moving her finger to different location) Do it again. Try with the other hand.
One often thinks of these as components of a sobriety test. These were not given to me at a checkpoint. These directives were given to me when I was eight after my 504 Designation and during my physical therapy (PT) instruction.
And, they were given to me again. And again.
I mean how hard can walking heel to toe be? I should be able to do it. What is wrong with me!?
Clearly, there was something wrong if I couldn’t do the simple task of walking in a straight line. Starting at infancy, my parents noticed I had poor passive motor skills. As I got older, I continued to struggle with coordination and strength. They talked to the pediatrician, who gave a possible diagnosis of why I was weak. They talked to the nursery school, who suggested to keep me another year so I would have time to grow taller and become stronger. Then they talked to the public school. The school started to make accommodations. Physical Therapy starting when I was seven and in Grade One.
The heel to toe directive, wasn’t just once. It was years’ worth of directives. But, before the frustration, when I started PT it was fun, games mostly. I didn’t know why I was being pulled out of class for games, and I didn’t know it would mean a future of tests and constant challenges. As the years of PT marched on, the differences between my classmates and I would become more apparent.
Before the differences settled in, I worked with G.L. when I was seven and in Grade Two. The big activity we focused on: stairs. Using the giant staircase at my elementary school, G.L. had to teach me to walk up and down stairs, like a normal person. The way I had always done it was similar to a toddler: hold on to the rail and climb one foot at a time. Left foot on the stair, right foot on the same stair, repeat. These lessons took the better part of the year and by the spring, I was getting the hang of it. After having nearly mastered going up and down stairs, G.L. was building reasons in for us to walk up or down stairs during each lesson. If I reverted to my old ways, she would correct me. Learning how to walk up and down stairs was so traumatizing and so difficult, even now, thirty years later, while I’m easily walking up and down stairs, sometimes I have to stop myself from crying because the enormity of being able to do this is so big. I’m walking up and down stairs (like a normal person on a normal day) and I’m just so happy I can do it.
In the days of learning how to walk up and down a flight of stairs or walking in a straight line, no one noticed I wasn’t in class and these lessons didn’t make me different. But, as my classmates and I got older, we perceived more than just our own world. We saw differences in each other. It was apparent if someone was missing from class, whether they were taken out for advanced science or they were taken out for special education. This is when PT shifted to before school. I wanted to have as little time to be perceived as “other” and as much time in class as possible.
Knowing I enjoyed school and wanted to be normal, my parents arranged for me to have PT before school when I started Grade Four so I wouldn’t miss class. This meant my mom had to finish morning barn chores (which involved feeding 27 horses, 3 dogs, 4 cats and the family of 4 breakfast) before getting me and my sister to school early enough so that I could struggle and to suffer through the humiliation of not being able to walk in a straight line.
I worked with two Physical Therapists nearly exclusively until Grade Five, when I asked to stop because I had “outgrown” it. What I didn’t communicate to my Physical Therapist is that I didn’t like being different and I was worried it would make someone who is already struggling to fit in look more different.
With this feeling of being the “other” and being different than my classmates, I felt like I had failed my parents. I couldn’t be normal like my younger sister, who could ride her bike so fast through mud puddles, mud would splatter up her back. She was fearless and capable of jumping off 5 foot tall retaining walls or climbing to the top of the rope at the farm where we purchased hay for the horses. Gravity, strength and fearlessness were not my friends. I had a hard time actively participating in recess. Sometimes when I did, younger kids, who were often bigger would pick on me. I avoided things like skipping or jumping rope. I hated the monkey bars, and the jungle gym downright frightened me. I mostly watched. The older I got, I became more tuned in to my differences. Relating was tough and I became more bookish. Part of it was because I couldn’t relate (and the less time I spent with peers I could relate even less) and part was because I couldn’t keep up physically. The least I could do was keep up intellectually. I gravitated to that more. I got it.
In that early morning physical therapy, while I was failing in so many things, like walking in a straight line or standing on one leg or skipping, there weren’t any students around to see me fail. It was my mom, the Physical Therapist and me. I was a disaster walking heel to toe or sitting on a stability ball or even using resistance bands. These things are normal now and in vogue for adults to do, but in the 1980’s these activities were unheard of. I was miserable. I hated being different. It was already tough being the smallest in the class, not quite fitting in and then I had the inability to physically keep up with my classmates.
Hyper-aware, I knew there was something wrong with me. I was seven when I entered Grade One and in the spring of that year, I started taking speech therapy. It was also in these formative years I started meeting with regional Pupil Services Director, who had kind eyes. One day he introduced me to another teacher. He was also kind, but a little more intense. I later learned he was the school psychologist who administered tests with some easy and hard solutions, but he always seemed impressed with my ability. Then one day, when I was in Grade Three my dad took time off from work, my sister stayed home from school and we drove to Farmington, CT so I could meet with these two men and a geneticist. While my parents and I traded time in the office/waiting room, I colored in my favorite coloring book with pictures of Victorian homes.
The geneticist confirmed the pediatrician’s hypothesis and what my parents feared. I had neurofibromatosis (NF). It is a dominant genetic disorder, affecting 1:3,000 births. Of those 3,000 births, 50% are spontaneous. I was spontaneous. I knew I was different because I had spots on my torso. We were told they were cafe au lait spots, and with these spots being one of the hallmarks of the disorder, I need five or more plus a combination of other items to meet the diagnosis. I was told that when I got older, I would get bumps (neurofibromas) and that learning may be difficult, but how much can you tell a nine-year-old. Most of the potential difficulties were hidden from me.
While most of the future was hidden from me, I was told I would be okay. In general, there is no way to predict long-term future with NF, but there are some guarantees. As I got older, I became more involved with understanding what NF was and what future health concerns may look like. I was in Special Education and read that there were cognitive delays and difficulties associated with the disorder along with dyslexia, fine and gross motor deficits, scoliosis, tumors growing on and throughout the body.
This “You’ll be okay” was possible by my new designation of 504. It is part of the Rehabilitation Act of 1973, which is a civil rights statute that prohibits discrimination against individuals with disabilities. The law requires school districts to provide students with disabilities reasonable accommodations to allow access to educational programs and associated activities to the same extent as students without disabilities. I had class with my classmates and the biggest difference between us was that my tests were untimed and when we had a class book to I often got editions of books with larger font and more space between the lines so they wouldn’t be jumbled. Sometimes, I would have the test read to me since audio processing was easier.
According to my patient history, by the time I was in 2nd grade, I was receiving 45min/week OT, 45min/week PT, one hour week/Speech Therapy; and 2.5 hours week of special education/resource room help. My physical therapist submitted notes that were ingested into my evaluation: prior to the evaluation say, “Sarah demonstrates slow gains in motor development and she requires a consistent program to further develop motor planning skills, overall coordination, functional balance and age appropriate gross motors skills. She has some difficulty keeping up with other children her age on the playground and in the physical education class.” The OT indicates “she has difficulty in motor planning, organizational skills, visual motor skills, upper extremity strength….
I was different. I hid from my disability. While there were the outward physical limitations where I had to have PT so I could “catch up” with classmates, there were cognitive limitations too. I could do it, it just took a hell of a long time for me to process or sometimes to even get. From the tests the psychologist administered, he found my IQ was above average and on the low side of Mensa. Unfortunately, when you’re in special education, no one cares what your IQ is. To the outside world, you are different, you can’t hack it and you’re seen as an idiot. I was able to hack it because of the 504 provisions. These provisions were barely 10 years old when I was designated and protected under 504 . People were still understanding and making modifications. Even though 504 is now over 40 years old, I am terrified of Betsy DeVos.
Betsy DeVos was confirmed on February 7, 2017 by a vote of 50/50, with two Republicans voting against party lines and a deciding vote cast by Vice President Mike Pence. Prior to the public education system falling under her purview, there was a confirmation hearing on Tuesday, January 17, 2017. And while the Democrats’ questions were compelling and emotional, the questions from Senator Al Franken (D Minnesota) hit particularly close to home. He asked her to demonstrate a basic understanding of education policy. In what has now become an epic failure, DeVos was unable to speak to whether a student’s success should be measured by proficiency or growth.
“I think if I am understanding your question correctly around proficiency, I would correlate it to competency and mastery, so each student according to advancements they are making in each subject area.”
Franken informed her, “That’s growth. That’s not proficiency.”
DeVos’s lack of understanding of the difference of growth and proficiency makes me mad and so fearful. At a very young age, I was able to discuss these two subjects. I knew there was the grade level I was supposed to be in… items that someone my age should master. Then, there was proficiency, things that I should master. In my annual meetings with teachers and various support services, these items were discussed candidly. When I was in high school and went to the meetings, I was given actionable items on what I could do better. What were the steps I needed to do to be better in an academic career? Part of the steps were advocating for myself for help or untimed tests. To ask clarifying questions. That is proficiency – I was very lucky to have a tailored program. Having a Secretary of Education who does not understand these two items, puts the most vulnerable, those who have or should have a 504 designation in peril. I am deeply fearful that these “others” those who need PT or untimed test or modifications will fall through the cracks. I was lucky because I grew up with parents who advocated for me. What about those students whose parents or guardians can’t or don’t advocate for them?
When there were large groups assembled for an activity and I wanted to see, my mom would always shove me to the front, even when people who were much taller angled to stand in front of me. Constantly, she would remind me, “you have just as much a right as everybody else to be here.” my mom made sure I advocated for myself. I know that not everyone is as lucky as me to have parents that push and lay this groundwork. But if we don’t have parents advocating for their children, surely, we need a school system to advocate for them. Public schools that get our tax dollars need to be held accountable that they are giving proper accommodations to students with the 504 designation. The accommodations are more than academic, they also include PT, OT, Speech Therapy, possibly an aide if the person has mobility problems. The 504 designation goes beyond K-12, by entering college with this designation, public or private, you are afforded accommodations based on this Civil Rights Law.
It feels hopeless. It feels like we lost the battle when Betsy DeVos was confirmed as the Secretary of Education. But, now is not the time for us to give up. There are local district elections. We have town elections to decide school budget or Superintendents. Just because we lost this one fight doesn’t mean we give up on Public Education. We can volunteer, mentor, donate books or supplies to our local schools. Betsy DeVos may be the Secretary of Education, but we as active community members are the boots on the ground. We can still help shape and change public education at a very local level.