school

Having an Aid for the Day

As the last few months of elementary school came about, I heard talk of the idea of getting an aid for me in middle school. When I say heard, I mean my parents tried to have a mature discussion with me about it, but the minute I heard “Kristie” and “aid” in the same sentence, I left the table. I think my parents got the point: NO AID FOR KRISTIE. But they ended up requesting one for next year anyways.

I was very reluctant to comply, but gave in when I realized that I wasn’t interested in rolling around a huge CCTV around the school. I figured I’d also need someone to enlarge my papers and tell me what’s on the board if I didn’t want to drop out of school (I didn’t have a lynx at the time and could barely use the CCTV).

One day in fifth grade, I’m going about my usual routine and working on the math workbook when in comes a lady. She grabs a chair and plops right next to me. Confused, I glance at my teacher for reassurance, and she tells me that since I was getting an aid next year, the school wanted me to experience life with an aid for one day, to see if I really needed one or not. Right off the bat, this threw me off my game, as I found it impossible to concentrate when someone was watching my every move. Her face was only a few inches from mine, and her piercing eyes stared unblinkingly at my workbook, following my every pencil stroke. So obviously, as I was uncomfortable to say the least, I got a problem wrong. And just as I was about to fix it, my day aid slowly moves her eyes to penetrate my face and shoves a finger on the incorrect answer.

I think it’s fair to say that I’ve never wanted a day to go by faster.

The scariest part of this whole aid experience was that she pretty much didn’t say a single word to me the whole entire day. When I asked for an aid that didn’t talk to me, I didn’t mean it literally…

But on the bright side, the experience made me realize that I did need an aid. For the whole year, my fifth grade teacher would enlarge all my papers and make the screen extra large for me. I was lucky enough that in this classroom, the front row was right up against the screen, so I could see the board and take my own notes. But on this particular day, my teacher didn’t give  me special treatment, and I needed my aid to enlarge the handouts and write down the homework that was written in green instead of the usual black. Hence, I realized that in middle school, my teachers wouldn’t go out of their way to accommodate me anymore, and not the classrooms would have an ideal seating arrangement. Coupled with the fact that because we changed classes in middle school, I would need someone to help me carry all my enlarged textbooks and equipment, an aid was something I now knew that was unavoidable for my future.

Did I finally accept that I needed an aid? Yes. But did I like it? No.

TIP: Having me test out how things were like with an aid for one day before getting me one full time was a very smart decision. This gives the student a taste of what having an aid will be like, and allows them to see what works and what doesn’t work. For example, if the student spends a day with an aid that is quieter and leaves the kid alone, and realizes that he or she needs someone who is more involved, this can be taken into consideration when hiring the permanent aid. Thanks to this experience, I now knew that the best aid for me would be one who was a little more social and left me alone when I was doing my work. This is much easier than finding out that a partnership doesn’t work after the aid has been hired, and having to go through the whole process of changing aids. Additionally, I would advise that if a student is reluctant to have an aid as I was, that all adults including parents and teachers refrain from accommodating them   too much, as this will make them realize the importance of getting one.  

You Hate Me Because I’m Blind…?

Although I did handle the last year of elementary school rather maturely and gracefully, I did encounter the first demons that come with being visually impaired. For the first time, I started experiencing occasional moments where waves of shame and inferiority because of my eye condition would envelop me. This was facilitated by some of my not so accepting peers.

Whenever we had silent reading time, and if my book was not available in audio format, my teacher would allow me to choose a friend to read the chapters aloud to me in the hallway. Usually, a good handful of people would excitedly volunteer to help me. I would always choose my best friend and we joked around and gossiped more so than read. However, midway through the year, we transitioned to literature circle books, in which a different book was given to each small group of five. Unfortunately for me, I was stuck in the group that contained all of the “cool and popular kids”, the members of the “in group” everyone longed to be in at some point or another. This was also the group that had no interest in associating themselves with a blind person. When it was time to read, none of them volunteered to help me and instead exchanged glances at each other until my teacher came over and randomly selected one of the girls to take me into the hallway and read. The girl shot me a icy cold lingering glare before unleashing an exasperated sigh and reading in the quickest and most monotone manner she could muster. After she had finished the assigned chapter for class, she started reading the homework chapter- not aloud, but to herself.

That day, I realized that in this world, there are both nice and not so nice people.

Never before had I felt like such a burden that needed to be catered to like a child. Never before had I felt lesser to anyone else because of my visual impairment alone. Never before was I so ashamed of something out of my control

Unfortunately, an even worse incident took place.

There was a boy in my class who was my friend’s friend, but I did not know him very well. Up until the fifth grade, he was always polite to me when we did occasionally cross paths at parties or during recess. Yet after hearing of my visual impairment, I noticed a dramatic shift in his attitude; during recess, he would try to latch on to my friends and try to convince them to play games that blind people obviously would struggle at, like hide and seek. When he was paired up with me to complete a worksheet, he adamantly requested to switch partners and made sure to express his joy and relief when my friend traded places with him. One day, my friend was planning a birthday party in which both he and I were invited. I overheard her tell my other friend that he wouldn’t be coming: the reason being that “he doesn’t want to be there if Kristie is there. He hates her because she’s blind”.

After hearing that, my fury towards that boy erupted. I made sure to express my hate of him loud and clear, and took every opportunity to make a nasty remark to his face or insult him in front of his friends. Even on his yearbook at the end of the year, I wrote “I HATE YOU” in a thick black sharpie (the deed was replicated on his part). I was not the bigger person here, and instead of letting the matter go and focusing on myself, I devoted an excessive amount of energy to getting revenge on him. But now as I look back, under all my rage was a layer of hurt. His comment had sliced a deep wound in my ego and perception of myself, as I increasingly found myself ashamed of having a visual impairment and hiding my blindness when meeting new people. BUt even beneath all that, I sensed a building fear and paranoia of not being liked and accepted by people, for reasons that extend beyond my eye condition, that still plague me today.

Out of all the comments made on my eyes, this was by far the one that lingers in my memory most. The fact that someone hated me not because of my personality or behavior, but because of my eye condition made me feel like for the first time that my blindness defined who I was. I feel that these two incidents really did stick with me throughout my middle school years and heavily contributed to my future denial of my visual impairment and refusal to ask for help.

TIP: Let’s not sugarcoat the fact that there will people in this world that are naïve and unaccepting who will condemn you for your blindness. Unfortunately, reality is that there will be people who will put you down and you can’t control what other people think or do. However, it is up to you to not let these people affect you, and instead use this as motivation to prove people wrong. Although other people’s comments may be upsetting, you need to realize that dwelling on them is not going to get you anywhere and the best thing you can do for yourself is to forget about them. Thinking positive will definitely help with this. For example, instead of holding a grudge against that boy who hated me for being blind so much so that he didn’t want to be at the party as me, I should have focused on the amazing friend I had who still invited me even even if I prevented her other friend from showing up. You should also try to avoid those types of people instead of trying to make them like you or going to extremes to get revenge on them as I did. I cannot stress the importance of surrounding yourself with those who love you most for who you are. Society can be cruel, and although you may not have control over others’ actions, you do have the control to turn negative comments into fuel to push you forward in life and make you stronger.

Fifth Grade: The WHOLE CLASS Knows

Fifth grade was the first year I entered with my visual impairment. Right off the bat, I received special treatment, as I was given the chance to request three friends to be in my class- and sit next to me for the whole years. It also seemed that every other day, a new piece of equipment would show up at my doorstep, and by the start of fifth grade, I had a dozen magnifiers, a lynx, a brailler and a stash of large print books. I was introduced to a lady who was my designated counselor from the Commision for the Blind, who was apparently going to teach me Braille.

What is happening. Why am I learning Braille. I can still read…

The first day of school rolled around and I felt like every other kid in the classroom. Besides sitting in the front center seat, my new eye condition had no other effect on me. I planned to keep my visual impairment more or less a secret to my new class, with only my close friends and my teacher  knowing. This approach worked well.

For the first day.

On the second day of school, I walk into the classroom and lo and behold, I see none other than my Commision counselor situated in my seat.  With much apprehension I approach her and she spits out words of horror; “Hi Kristie! I’m here to tell your class that you’re blind!!!” As you can imagine, this didn’t go over too well with me and I spent the next half an hour pleading with her in the hallway to leave and trust me to inform people about my condition when I needed help. The last thing I needed was for people to treat me like an outcast, like someone inferior to the rest of the crowd. Although I did inform many of my peers in the fourth grade, “glasses don’t work on me, so I get these cool glass bar magnifiers” is much different than “I’m legally blind so I can’t do things like reading books and drawing pictures that everyone else can!” Eventually, I gave in to a very irritated counselor, as I did not fancy the idea of a phone call home to my parents. I was given the option to tell the class myself, but I declined, as I was too embarrassed and quite frankly afraid, to do so myself. I still remember the agonizing twenty or so minutes where I had to stand in front of the classroom with all my peers staring at me as my counselor bluntly revealed my blindness and limitations to a bunch of people I barely knew. After that day, I felt that everything had changed. Aside from my close friends, many people treated me differently, talking to me like I was younger and acting like I was a sort of alien. My teacher went over the top to accommodate me, treating me as if I were royalty. She gave me excessive attention even in areas that had nothing to do with my eye condition; she would use my name in test questions, always allow me to write on the SmartBoard over other kids, and even give me clues to test questions I was unsure of. At the time, I embraced this new attention (to this day, I am still an attention whore); only later did i put two and two together and realize that this exacerbated the perception my peers had of me.

My social life had changed drastically from the fourth grade. Until then, I had always been a part of a large group, and I was in the so called “center ring” of that group. I was quite popular within that crowd, but in the fifth grade, I felt myself slip away from them. As I was no longer able to participate in many of the groups’ activities such as movies and tennis, I subconsciously drifted toward a smaller crowd. By December of that year, I had established a very close circle with five others, none of which I had known well before my visual impairment. My transition from the large group to the smaller one did not phase me at the time. I was just as happy with the latter as former. Although I no longer was popular and many of my peers did treat me like an outcast, which obviously did bother me, my close friends and family didn’t hold my eye condition against me, and at the time, that was all that mattered to me. Looking back,I feel like the way I handled my visual impairment and my social life in the fifth grade was well beyond my years and unfortunately, much better than I did in the years that were to follow.

TIP: As much as I hated it when my Commision counselor told the class about my eye condition, I feel that in retrospect, it is important that your peers are aware of your eye condition. However, I strongly suggest that you yourself are the one to speak up for yourself and inform others about your visual impairment, as uncomfortable as it is. Parents of blind children should avoid telling others about the visual impairment for them, as they may learn to expect others to understand and help them without having to express their needs on their own. Additionally, it is essential for family and friends of the legally blind to love them for who they are and not allow the eye condition to affect the relationship. You cannot control what the general public think of disabled people, but you can help prevent your visually impaired loved one from feeling inferior or unworthy by providing unconditional love and support, as my family and close friends did for me which dramatically eased my transition into blindness. After all, it is the actions of those closest to you that have the mos timpact.

…More Eye Appointments

Stargardt’s disease…I sat there, dumbfounded at what that even meant. Across the room, my mom looked as if she was about to pass out. “What- what’s that?” my mom stutters, posing the question I too was pondering. “We don’t know much” the doctor replied. “This is rare disease, found only among 1 in every 20,000 people. But it does include macular degeneration of the central vision”. “So does mean glasses won’t work on me?” “No”. “So will I ever be able to see clearly again?”

The doctor sighed. “I don’t know. As of now, there is no cure. But in the future, there will be one to help you see clearly again”. At the time, this was enough for me; as a naive ten year old, I thought to myself that “this works- I ‘ll have bad vision for a little while and then it’ll be fixed with some medicine, and I’ll my perfect vision back without even having to wear glasses”.

Obviously, my parents were more worried, as we stayed in the eye doctor’s office more quite a long time as they discussed the proper course of action for me. I didn’t listen much, as although I was confused on what was happening to me, I didn’t get the sense that it was a big deal. After all, my vision would come back someday right? On the car ride home, my parents didn’t talk much. They just reassured me that everything would end up okay, and that we would deal with anything that came our way, but I could feel the tension and the concern they exuded. I think deep down in me, I knew that something was very wrong, but like my parents, I subconsciously protected myself from the truth and told myself that everything was perfect. Only later, when I came back in touch with real life situations, did reality strike me, and it did hard.

The day, I found myself back at another eye doctor’s office. My parents told me that this was specifically a retina specialist, and they wanted confirmation and advice from more of an expert. Like the previous day, the same procedure ensued, as I was given a series of eye tests, given various prescription lenses that were ineffective, and put through another eye dilation and examination process. The results were run, and the same verdict was delivered- Stargardt’s eye disease. Like the other ophthalmologist, he didn’t have much information to offer about the disease, except that I should wear sunglasses to protect me from the UV rays and avoid Vitamin A rich foods like carrots. He also warned my parents and I that my central vision was likely to deteriorate up to a point and then level off, although no one would know when and how much worse my vision would get. When I heard the confirmation of eye disease, I was genuinely disappointed. I was hoping that a mistake had been yesterday and that I would come home with a pair of glasses and 20/20 vision again. But this feeling only lasted a split second, as I returned to my fantasy that in a few weeks, a cure would come out and I could have clear vision without the title of “four eyes”.

The last few weeks of school went by more or less the same as the last few months. My teacher was informed of my eye condition, and I was given a bar magnifier for my work. The class changed seats again, and I was given a seat in the front of classroom. I felt and was treated no differently than any other kid at the time, and I can say that I truly enjoyed being visually impaired for the first few weeks after my diagnosis. My classmates had no idea what my bar magnifier was, and consequently were all over my cool new toy. I told some of friends the “secret” of my eyes, and before long, I had everyone in the class begging me to let them in on this secret. I bathed in this new attention with great pleasure, as I was hailed for having these “cool eyes that glasses didn’t work on”. No one, including myself, actually understood the full scope of my visual impairment at the time, and hence, no one saw me as disabled or different from them in any way. As I now look back, I could never have expected this to last; it was the last week of school when all anyone did was trade food, draw pictures or play with their Webkinz. It wasn’t until later, when my limitations and my need for special treatment were exposed that everything changed.

TIP: I have to applaud my parents for taking me to multiple eye doctors before fully accepting my diagnosis (that summer, they took to me to another retina specialist in China for a total of three confirmations from experts). Especially with rare eye diseases like mine, it is not hard for eye doctors to misdiagnose a patient. To be safe, first confirm that you or your child actually has the condition you are taking the best course of action for. Additionally, if you are parent whose child has been diagnosed with a visual impairment, I highly suggest you DO NOT shield him or her from the truth and instill a false sense of hope in them, as I had. Eventually, they will find out the hard way and be hit by harsh reality; this will likely be more harmful than if they are aware of the truth from the get-go. Sit down with your child and inform him or her that they have this visual impairment which means their eyesight will (insert progression path of vision for specific condition) which will limit them in (insert impacts) ways while still remaining optimistic about overcoming future struggles and giving them unconditional love.