Chapter 3: A Rogue Wave Just Before Kindergarten

While I was playing and learning at the Center, conscious only of the present moment, my parents and teachers were thinking about my future. My parents had a big decision to make, one that would effect the course of my entire life. Where would I attend elementary school?

    My older siblings attended a Catholic school, but going to school with them was out of the question as that school, and private schools in general, simply don’t have the resources to accommodate children with disabilities. Just a generation or two earlier, it would have simply been a given that I would attend the state school for the blind in Janesville. Children who live too far away to come home every night board there during the week, take a bus (or plane if they live really far up north) home on Friday evening and come back to school Monday morning.

    When I was first made aware that some children still do this, it broke my heart. I remembered being homesick just going to camp for a week. I couldn’t imagine having to say goodbye to my family for the week every week, and on the bus ride back, thinking of all the family memories that were probably made during the week that I wasn’t a part of. I couldn’t imagine enduring the loneliness of going back to a dorm room after a long day, rather than walking into a friendly home, getting a hug from Mom and telling her about my day. But Mom told me I never would have had to endure that homesickness because if it turned out the state school was the best option for my education, the family would have packed up and moved to Janesville so I could come home every night. But after a visit to this school, everyone, especially my siblings, knew there were better options.

    My mom loves to tell the story of that day. My older siblings must have had the day off from school because they all rode along on the visit. As the whole family toured the school, Mom and Dad didn’t like the atmosphere at all. It was basically a stereotypical, cold institutional setting with none of the warmth and genuine compassion of the Center. Meanwhile, Mom noticed the staff talking up the school to my siblings like expert salesmen, parading their best and brightest students in front of them and trying to convince them what a wonderful place it would be for me. The entire time, Mom noticed that all three of my siblings were impeccably courteous and polite to these people, and were even smiling. It was so convincing that Mom remembered thinking, “I really hope they don’t beg me to send her here.”

    But the moment we were all back in the car, and the doors were closed, my siblings let loose. “You cannot send her there! Please Mom, promise you won’t send her there!”

    When I heard this story for the first time, I almost cried. Like all sibling relationships, my relationship with my siblings had its share of rivalry and petty fights. Let’s just say they didn’t give me special treatment because I was blind, and I was no angel either. But this story made me realize that when you get right down to it, they love me and have my back. I hope I would respond the same way if one of my siblings ever needed an advocate.

    I do not remember this first visit to the state school at all, but five years later, I would get the opportunity to visit this school when they hosted the Braille Olympics. Blind students from all over the state were invited. I went to this event every year for three years, and overall, I had a blast. The event started on a Thursday morning and ended the following afternoon. I was an excellent braille reader so I dominated in the activities and always went home with medals. In the evening, there was a pizza party, games, a dance and time to swim in their pool. But as much fun as I had, I was always glad to get home. Even at that young age, I could tell this school was the kind of place that was fine for a short trip, but which would not be a pleasant place to actually live.

    The brick walls, hard linoleum floors and many huge echoing hallways radiated loneliness, and since the trend toward keeping students in their own districts took hold in my generation, the vast majority of students there were severely disabled. Among their handicaps was vision impairment, but it was obvious by the way many of them behaved that their vision impairment was a secondary concern.

    The one and only thing I would have loved about living at the state school was the library. I had a chance to visit it one year, and it was floor to ceiling bookshelves like you would see in a typical library, except all those books were in braille! I know this is cliche, but I really did feel like a kid in a candy store. At Burleigh Elementary School, there was one designated shelf in the school library for braille books, and in middle school, there were no braille books at all. Middle school had books on tape which I listened to, but there is nothing quite as magical as the old-fashioned pleasure of holding a real book and enjoying it silently in braille. But as wonderful as access to so many braille books might have been, it wouldn’t have been worth the loneliness or the lack of peers I could relate to.

    Another option for my elementary school was a school about half an hour from home that had a resource room. It was a mainstream school so I would have had some classes with sighted peers, but there was also a resource room specifically for blind students. Many of the children that graduated the Center at the same time I did ended up going to this school, and when I was in third grade, my vision teacher would take me to this school for lunch once a week to socialize with these students. This school wasn’t in the district where we lived, but there was a special bus that would have picked me up and brought me home every day. It would have been a long bus ride though, and for that reason, my parents hoped there was a better option.

    It turned out there was. With the passage of the Americans with Disabilities Act in August 1990–again, what perfect timing–came an increasing trend toward keeping students with disabilities in their home districts and mainstreaming their education as much as possible. It was a trend Mr. Zahn, the principal of Burleigh Elementary School fully embraced. He said the school had never had a blind student before, but he was open to the challenge.

    Many of the children at the Center had autism or other cognitive disabilities in addition to blindness, but my parents, and the staff at the Center–including Mrs. Reich who would transition to my school district and be my vision rehabilitation teacher from kindergarten through high school–could tell that blindness was the only disability that would effect my education. Therefore, with just a few accommodations, I could succeed in a mainstream classroom learning alongside sighted peers, go to college, and live a full, normal life. But before entering kindergarten, all children with special needs are evaluated by a school psychologist to determine their academic readiness, and to the shock of my team at the Center, the psychologist determined that I was nowhere near ready for kindergarten. But looking at the results, one of the teachers at the center realized that I had not been given a fair evaluation, and tipped my parents off right away. The teacher said she could fight for me at meetings, but parents really have more power. So Mom contacted the school psychologist, who, sure enough, told her that the test did not correct for visual impairment. On one hand, I can empathize with this psychologist who had likely never encountered a totally blind child because it is a low-incidence disability, and it would only have been four years or so since the passage of the Americans with Disabilities Act that began the trend of integrating blind children into mainstream classrooms. But rather than consulting with my teachers at the Center about how the evaluation could be modified, or at the very least, administering the visual components of the test as is but not counting the results, she administered the test as is, and counted the results against me! One component of the test for example had four pictures, three of which went together and one that did not relate to the others, such as an umbrella, raincoat, rain boots and an apple. The child was asked to point to the picture that did not belong.  

    I don’t remember taking this evaluation, but Mom says I was a very cooperative kid, so she imagines I just pointed to something at random on the blank-to-me page of pictures put in front of me.

   “Couldn’t you have told her what the pictures were and asked her to name the object that did not fit with the others?” Mom asked. 

    “No, that would have skewed the test,” the psychologist said.

    “Well, what about handing her a real umbrella, raincoat, rain boots and apple?” Mom asked.

    “No, that too would have skewed the test,” the psychologist replied, “it is a standardized test and to be fair to all children, we have to administer it the same way.”

    Mom didn’t have a good feeling about this psychologist, but she also knew of parents who lived in denial, unable to accept the severity of their child’s disability, and she didn’t want to be that kind of parent. So she consulted my other teachers at the Center, who were all just as surprised as she was.

    “She’s definitely ready for kindergarten. In fact, she is beyond pre-braille and starting to learn braille,” Janet said.

   If this psychologist would have had her way, I would have been placed into a class for children who were cognitively impaired. Given that children with disabilities are assigned a team of experts to monitor their education, I think eventually, someone would have noticed that a mistake was made, but just as with my delayed medical care because of the dishonest neurologist, the start of a proper education for me may have been delayed. But Mom stepped in to ensure that didn’t happen, demanding that this psychologist be removed from my team. She was taken off my team, and for the next eight years, we didn’t hear a word from her. Eventually, she was nothing but a distant bad memory for my parents. A fair evaluation that accurately reflected my abilities was administered, and I began kindergarten at the same age I would have if I weren’t blind. 

    For the next nine years, I did well overall. I was a typical kid who got in trouble because I didn’t always do my homework. I especially hated Math homework, a hatred that lasted through college statistics. My brain just didn’t get Math, or I would master a concept at school with the teacher holding my hand, but when I got home, I completely forgot how to do the problems. As early as third grade, I remember my teachers wanting me to use the abacus to solve complex multiplication and division problems, the equivalent to my peers who were learning to borrow and carry numbers using pencil and paper. But I would quickly lose patience with the abacus and just punch the equations into my talking calculator.

    Midway through the first quarter of seventh grade when midterm report cards came out, report cards we were supposed to take home for parents to sign, but which I admitted upon interrogation by my classroom aid and Mrs. Reich that I didn’t take home because I was failing Math so miserably, my teachers determined I needed to be in a slower-paced Math class. In this slower Math class, my grades improved dramatically. By eighth grade, I was maturing, physically in that I was developing a mature soprano singing voice that prompted one boy who passed me singing in the hallway to say, “see you on American Idol”, and intellectually in that I was discovering a passion for writing and national politics. 

    But in February of eighth grade, it was time to update my Individualized Education Plan (IEP) again as I was about to transition to high school. One Friday morning following choir rehearsal third period, I arrived back at the resource room the school set aside for me and all my braille equipment for study hall time as I did every day, when waiting for me outside the door was a person I didn’t recognize. She introduced herself and explained to me that she was a school psychologist and that as part of my education plan, an evaluation needed to be done. She handed me a fat business envelope she said contained important information my parents needed to review and sign. I politely thanked her, took the envelope, put it in my backpack and promised I would get it signed and returned right away.

    That afternoon when I walked into the house from the school bus, Mom and my sister who happened to be home from college for the weekend to recover from surgery to remove wisdom teeth, were all shook up. It turned out this psychologist had also called and left a voice message, actually two messages, in which she stammered and didn’t make sense. My parents suspect that she was so clearly nervous while leaving these messages because she remembered who I was, and maybe realized what a terrible mistake she had made. That evening, all the memories came back to Mom, and I learned the story of this ridiculous evaluation. Mom went ahead and signed the papers and let this psychologist administer the evaluation because at that point, she no longer would have had the power to jeopardize my education. I was comfortable with it too because I was old enough to know how to speak up for myself if she asked me to do something impossible.

    On the day of the evaluation, I was polite and did not mention that I knew this backstory. But I will confess that perhaps my heart was a little smug, as I remember going to extra effort to dazzle her with my brilliance, using bigger words, and trying to come off sounding more sophisticated than I might have otherwise.

The closest the psychologist came to acknowledging the mistake she made was gushing to my parents at the IEP meeting about how well I had done. I hold no bitterness toward this psychologist, especially now that I have been in the workforce, working as a paralegal at a Social Security disability firm for almost five years. Despite having a disability myself, that job humbled me, revealing how much I don’t know about other disabilities, and how out-of-touch I must have come off to clients from disadvantaged backgrounds. We all make mistakes, and we all have moments when we let our pride get in the way of common sense. I share this story not to malign the psychologist, but as a reminder, to myself as much as anyone, of the importance of humility, of asking for help when faced with an unfamiliar situation, and most importantly, of admitting when you made a mistake.

Published by Allison Nastoff

As I write this in 2020, I am 30 years old. I am blind, and Gilbert was my first guide dog. He passed away on December 2, 2020, but I decided to keep the title for my blog as a tribute to him because he will always hold a special place in my heart. In 2012, I earned a Bachelor of Science in Communication with a journalism emphasis, and went back to school for a Paralegal certificate in 2014. I worked for five years at a Social Security disability firm. When the pandemic hit, I did some reflecting and decided to resign from this job and take seminary courses. My dream is a career as a teacher or writer where I can be a blessing to others.

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