Nystagmus Tag (Nystagmus Awareness Day)

Hi Blog world,

 

Happy Nystagmus Awareness Day also known as Wobbly Wednesday. During the early hours of the morning, I came across Glen’s (Well Eye Never) Nystagmus tag. Click here to watch Glen’s Nystagmus Tag YouTube Video

Since I have Nystagmus myself I decided to do the tag.

1. Are you the only one in your family to have Nystagmus?

I was the only one who has it by birth called (Congenital), however both my grandmothers have a form of Nystagmus called (Acquired).

2. How has your Nystagmus affected you throughout your life so far?

When I was little my mother noticed that I had problems seeing. She took me to see many eye doctors, who said I had Nystagmus, and that I should be fine doing mainstream schoolwork.  However, like most children with Nystagmus, I struggled with seeing my school books and the board. When it became evident that I was struggling in school my eye doctors said I needed to be registered as a student with a visual impairment.

My mother had to fight for many years to get me registered as a student with a visual impairment. In fifth grade I finally started to receive help from a low vision teacher and my school materials in large print.

Now as an adult, the only thing I can’t do is drive. I am currently looking for employment, however with the support I am receiving I should be able to find employment soon.

3. What are you registered as – partially sighted, severely sight impaired, blind, etc?

All my medical documents state that I have low vision, however I prefer the term visually impaired.

Here in the United states we have the American’s with Disability Act which helps people with disabilities have access of reasonable accommodations to help with employment. I am receiving help through Division of Blind services and Vocational Rehabilitation. The main mission of these services is to help me find employment, and provide me with low vision devices or other services if I need them.

4. Do you have any other eye conditions with your Nystagmus?

Yes, I do. I have Night blindness, sensitivity to light, lazy eye, and astigmatism. Click here to read more about my journey with Night Blindness

5. Do you have any visual aids to help you with your condition?

Yes, I use a long white cane during the evenings, during nighttime, or when I am in a new environment. I have several magnifiers i.e. dome, or bar, I also use a screen reader called ZoomText, where I can change the color of the screen, and the tracker or pointer, this program also reads the text on the screen.

Another program I use is called Kurzweil 3000, which is a program when I can access regular print books; and I also use this program to write articles and other writing tasks. A feature I really like about this program is that I can change the color of the background so my eyes aren’t as tired.

One of my most favorite devices I use is my talking book player, with this I can access books through Bookshare.org or through my talking book library.

 

Lastly, I use the speech and Siri feature on my Iphone.

6. Do you have any advice for parents of children with Nystagmus?

Yes, get them the help they need early. I struggled with school until I received my large print textbooks and that helped me a lot. Also, keep a positive attitude towards the condition. Finally, don’t forget there are support groups out there to help answer any worries or concerns you may have.

American Nystagmus Network Facebook Page

Nystagmus Network Facebook Page

The Nystagmus Family Foundation Facebook Page

7. Describe your vision in 3 words.

Blurry-I describe it as like looking through a piece of Saran Wrap.

Loss of quality of vision during the day-my vision is best during the morning after I get a goodnight’s sleep, then my quality of vision gets worse during the day.

Tired- different things such as change in the weather, or if I’m stressed or ill can make my eyes tired.

8. What help did you get in school/work?

During grades 5-6,  I received large print textbooks and worksheets. Then in sixth grade my family moved to Florida where my teacher of the visually impaired gave me low vision aids, magnifiers, telescopes etc, instead of my large print text to help me be prepared for college and the world of work.  In college, I received most of my books in digital form, which I either converted myself by using Kurzweil 3000 or the disability resource services. I received extra time on tests.

Since for now I am still looking for employment we are not sure which devices I may need, however I know that I will need ZoomText to access the computer.

I hope you enjoyed this tag.

Blog soon,

Amanda Gene