Alyzza

By: Alyzza

When my mother was nine, she'd been hit by a car, it did major internal damage and left the doctors thinking that she would be unable to have children. So born October 12 1979, the first of two children, I was a surprise to my parents.

My mother had become pregnant with me when she was 18. The doctors never thought that the pregnancy would last to full term, it did. Born two weeks after my due date with no aperant abnormlities at 6 lbs 14 oz, I was everything my parents had hoped for.

They noticed that my eyes moved "more than was normal". That clued them in and the doctors found that I had Nystagmus. Further tests showed that I had severe visual defects. At first, due to their lack of knowledge of my conditon, they suspected that my visual impairment was due to some undetermined form of child abuse. When I has a seizure in front of the doctor, and she saw the papers concerning my eyes, she decided to do a cereal box diagnosis and claimed that I would be totally blind, and completely retarded. She further stated that it was my mother's fault because she must have used illigal drugs while pregnant with me, or had caused the damage sometime after my birth.

Social servies, along with my parents wanted a second opinion, so they sent me to an opthomologiust who basically spit in the GP's face when he told her that I had ONH, which had occured during pregnancy through no fault of my parents'. For some reason that I'll never understand, they never scanned my head for abnormalities.

My vision was eventually found to be 20/200 (with correction for my astigmatism) in my right eye with visual field defects involving the peripheral vision on the right side of said eye, and some central vision loss. I have no measurable vision in my left.

I hit my milestones later than most children, with the exception of speech which I developed young. At 3 I was put into early intervention, but it was the early 80's and their knowledge was far from vast so I was put into a program for the visualy impaired who had multiple handicaps. It didn't do me any good. Afer a year and a half of it going next to nowhere my mother simply got tired of their endless games and found a regular school that would take me in an integrated classroom. I was the first student with any handicap at all to attend the school. For the first years while the teachers tried to figure out what to do, I was doing poorly. Eventually I found self tought ways to adapt and did. When I finished elementary, I was in good standing. I also had a nasty temper. I could blame it on socaity but I know as well as anyone that it was a personality trait. I hear that many with variations of my conditon also have a problem with anger management.

It was around this time that my brother was born to my "sterile" Mom. He has no problems.

I went to an urban junior high that didn't accomodate for anyone in any manner because most of their attenders had violent crimes in their records, and the school never expected any of us to make it until the tenth grade. It wasn't prejudice, they disliked everyone :). I did make it, survived the entire junior high experaince at that school, and once again finished in good standing.

There were so many reasons not to finish, so many excuses I could have made for failure. My parents didn't accept any of them, and every morning I woke up and was sent out the door to finish. I got proficient at fighting though :)

I entered a high school wich had a really bad rep. and fully expected to get the same treatment I received in junior high. It didn't happen. The teachers in our high school knew that if we had made it that far, most of us were aiming to finish. It was there that I started getting really helpful technical accomodations. I was supported by staff (and surprisingly) a number of students. The career (and other) conselling I recieved was invaluble.

I finished high school with honors (except for math, I barely got by). Chose a post secondary institution, and now attend for my Bachelor of Education (high school teacher, and not in math). For all the teachers out there who made a difference in my life, this is my way of paying them back.

I found myself a job as a DJ on a local radio station (lucky, good timeing).
Once I learned the sound board by touch, my show started doing pretty well. At first it was major trial and error, and some embarrassing on air boboos. The program manager didn't get all bent out of shape, he simply gave me the time and the practice to get it right. Now I'm on directly after one of the highest rated shows on our station.

Currently, my doctor watches me for signes of diabetes and hypothyroidism. Latest word is that I probably have an underactive thyroid. I have no idea what comes next for that.

Not everyone with or without my conditon can "make the grade". I've had my share of failures and disappointments. I learned that it wasn't always success that was the reward, it was the effort.

    

This website has been designed to help empower parents of children with ONH/SOD. All the information herein is subject to opinion. If you suspect your child may have ONH/SOD it is recommended that you seek professional advice from a certified pediatric ophthalmologist. No one individual or company connected with this website assumes any liability or responsibility
for it's contents.