Great Things That Come With Having an Aid

Most visually impaired students go through their middle and high school experiences with an aid to help with enlarging or Brailling papers, reading aloud tests, and monitoring extra time on tests. A visually impaired student’s relationship with his or her aid is crucial to the academic success of the student. Personally, I cannot claim that my aid and I have seen eye to eye on every matter, but I can genuinely say that I love my aid and my high school experience would not have been complete without her.

When we have our aid’s assistance in middle and high school, we legally blind students tend to yearn to be independent and dream for the day when we can finally won’t have assort of second school mother by our side. But as I have heard from many blind college students that despite the liberation of independence, you will miss your aid and everything she did for you once no longer have her in your corner. Here, I have listed some the more unusual benefits to having an aid that I will miss when I no longer have her help in college:

  1. You always have someone to talk to. Ever have a lunch period or study hall in which none of your friends are in? Ever have a day when you just want to talk to someone? I certainly have, and I have spent way too many free periods hanging out in my aid’s office complaining about teachers (from my end), gossiping about the latest high school drama scene, raving about sports and current news, whining about boring classes (again, mostly form my end), and filling each other in about life.
  2. You have someone that you trust for advice on adult problems. Ever have a time where you just don’t know how to approach this one teacher or which courses are better than others? As your closest ally, your aid is probably the only adult in the school you are comfortable enough trusting with some of your significant dilemmas. I’ve had my aid give me advice on which teacher I should choose to write my rec letter, which colleges I should consider applying to, what to write in my NHS appeals form etc. Other than your parents and other relatives, your aid is likely the adult who cares most about you and your future, and who you know would help you in any way possible. After all, her whole job consists of helping you succeed.
  3. If you lose a handout, have no fear! You can always go to your aid for the normal sized copy or ask her to send you the electronic one. Being not the most organized person in the world, I have relied on my aid for this almost everyday- she’s saved me from losing quite a few points to say the least.
  4. You have access to exclusive information about your teachers. Don’t you want to know a teacher’s comments about you or when they’re in the wrong mood for you to ask for that grade bump? Teacher’s love the company of another adult in the classroom and more likely than not, confides in your aid about their life, pet peeves, and complaints. From my aid, I have even learned which teacher like and hate me, which is very helpful when picking teachers for rec letters.
  5. You don’t need to lug around five tons of equipment around the school. Being visually impaired, many of us need special equipment to assist us in class. For me, I need a VisioBook, a bulky ten-pound machine, for board work. Even back in middle school when I used large print instead of audio, my aid would haul around the stack of enlarged textbooks from class to class. You may think that this is trivial, but trust me its not; on the day I have a substitute aid and need to carry my equipment myself, I drop books right and left, can’t crowd weave, and suffer from exhaustion when trudging down the halls, and subsequently am five minutes late to class.

These are only a few of the pros that come with an aid, beside the obvious enlarging and Brailling papers and reading materials aloud. Ultimately, aids are great people who are there to make your life easier. At the end of the day, all they want is to see you succeed and help you in any way possible. So be nice and appreciate your aid while you have one!

…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.

The Eye Appointment

As the day of my appointment drew near, my dread of getting glasses morphed into excitement at regaining my vision. At this point, my eyes were getting in the way of my daily life and I longed for the day I could see normally again, even if it meant being called “four eyes”. I missed being able to sight read piano notes, run down tennis balls, and absorb the whole action movie experience again.  Not having 20/20 vision, as I quickly realized, was not fun.

Before long, the day finally arrived. I sat in the ophthalmologist chair, with one eye covered and attempting to read the eye chart. I squinted and squirmed, repositioned my head and asked for the lights to be dimmed; nevertheless, I could only correctly identify big “E” in the first row. After a few other unsuccessful tests, I was given a pair of trial frames to wear, and the prescribing process began. I felt myself anticipating my reunion with my vision finally as the ophthalmologist slid the first lens in the glasses frame. I looked at the letters projected on the screen twenty feet in front of me, but didn’t notice a dramatic increase in acuity; if anything the letters on the screen became blurrier. The eye doctor pushes me to focus and try harder, but I just can’t read it (looking back, I think he thought I was lying). He takes the lens out, and replaces it with another lens, and again I stare at the screen with no luck. This repeats for nearly an hour. Each time the doctor puts in a new lens, I close my eyes and think to myself “maybe this is the one,” and imagine the magical moment when I would open my eyes and have my world so clear and perfect again. But this moment never came. After an hour of placing a new lens in, the buildup of hope, and the disappointment of the lack of improvement in my vision, the ophthalmologist left the room with my parents. I stood in the large room, alone with the most recent lenses in the glasses and just stared at the screen trying to force myself to see the letters and trick myself into believing that these lenses were the right ones.

The eye doctor returned, and dilated my eyes. He then proceeded to perform a series of eye tests and examinations on me for another hour. Finally, the doctor left with the information and left my parents and I anxiously awaiting the results. I remember just being so confused and wondering what was going on, and why glasses didn’t work on me, like they did for everyone else. What was wrong with me? I played the last month in my mind, of how I initially found the mere prospect of having glasses despicable. Now, sitting in the waiting room, I longed for nothing but to just find anything that would help me get my vision back, and promised myself that if I was lucky enough to find a pair of glasses that worked for me, I would wear them all the time without a single complaint. After another half an hour of endless worrying, the doctor called my parents and I into another room.  “I’m sorry” he sighed as if it pained him to continue. “But you have Stargardt’s eye disease. You’re visually impaired”.

TIP: At an eye appointment, ALWAYS TELL THE TRUTH. Even if you don’t want to admit to yourself, the eye doctor, or your parents how much your vision has declined, or if you really want to say a certain prescription lens works for you when it doesn’t, tell the ophthalmologist exactly what you can and can’t see. This way, you are able to get the best help you need for your circumstance.  Additionally, if you are a parent or an eye doctor present at these eye tests, do not influence your child by reacting to what they can or can’t see. For example, if a parent exclaims, “WHAT? You can’t even see the third row now on the eye chart now?” the child may feel uncomfortable and try to guess his or her way out of lines he/she cannot actually see. Always create a comfortable environment for the patient during eye exams, in which he or she feels comfortable telling the whole truth about his/her vision.

THE FIRST SIGNS

Up until the fourth grade, I had perfect vision. Just like the rest of peers, I played various sports and instruments, read books, and participated in the typical ten year old’s games such as tag and cards amongst others. I had many friends and excelled at tennis, swimming and piano.

Overall, life was going pretty well.

The first time I noticed that there was something wrong with my vision was on one May day in 2008. My teacher decided it was time to switch seats after the NJASK, and moved me from the front of the classroom to the very last row. Immediately, I realized I could no longer see the writing prompt on the projector, the math problems on the board, or even the time on the clock. Yet all the other kids in my row seemed to have no trouble seeing these things. The first thing that came to mind was “oh no, I need glasses”.

Quickly, I began to struggle; when we were asked to complete the projected math problems on our little white board, I just didn’t hold mine up; when a writing prompt was posted, I pretend to need a tissue so I could walk to the front of classroom and read it while “blowing my nose”; when I was called on to translate a Spanish sentence written on the board, I told my teacher I didn’t know. I missed class notes and I completed the wrong workbook pages for homework. Outside of school, my parents and piano teacher became worried as I began to uncharacteristically read and play the wrong notes. I did inform my friends about my declining vision, but I mostly did this to borrow their notes after class and joke around about how I would look in glasses, something that terrified me. For a month, I refrained from telling my parents to dodge an eye appointment, but after a while, I got frustrated with my vision. I asked my parents to arrange for an eye appointment.

TIP: In hindsight, I should not have dragged informing my parents about my vision loss for a month. By doing so, I was unable to get the help I needed to keep up in school. Additionally, if not looked out for, kids with low vision can potentially end up in dangerous situations, such as crossing the road at wrong times. If you notice any changes in your vision, schedule an eye appointment immediately. Parents, if you notice any signs of vision change in your child, do not hesitate to talk to your child or other people who interact with your children, and set up an eye appointment ASAP.