I was asked to sit a meter away from a computer screen which depicted a virtual head. My task was to move the man's eyes (using a mouse) so they were looking at me. Or to move the eyes away from me in a certain direction. I could not even see the eyes so I was completely guessing. I was given the choice to skip it, but I figured since I was there, I would try it. The student knew I was completely guessing but said I was actually not doing bad.
They tested my vision while I was there and it seems to have stayed stable at 20/300 since the last time I was there a few years ago.
So there was not a whole lot to tell about that. But I am glad I did it and if they ask me to be part of another study, I will gladly agree. If I can somehow help researchers in this field, even if it is not directly related to me or Stargardts Disease, I will. Every bit of information is useful somehow.
OK.. Back to my current reason for writing.
With the school year approaching, it occurs to me that I might have some perspective to share as a former student and daughter to the world's best mom and advocate for her children.
Seriously the fact that I have not gushed about my mom on this blog yet is basically a sin. She is unbelievable. She is my number one fan and supporter, and has been throughout my life.
She is, by far, the most compassionate person I know.
When I was in school, she made it a point to meet every teacher I had and talk to them about my vision. She would call meetings with my teachers to make sure they were all clear on what types of accommodations I needed. She had a say in which teachers I would have each year.
When I think of it now, I can imagine how hard, frustrating, and emotional those days must have been.
Every parent has to learn how to balance protecting their child with letting them be independent and handle things on their own. For parents of kids with disabilities, this becomes way more complicated. I am sure my mom put herself in my shoes and thought about what it would be like for me in any given situation. And if she could help she would. But obviously, she couldn't be there all the time and I bet she had millions of fears.
- Will she be able to find her way to class?
- Will she get upset and embarrassed when she can't see something?
- Will someone say something rude and upset her?
- Will the teacher remember to enlarge her papers?
etc. etc.
Well, I got through school and oddly enough I actually enjoyed it.
I do remember some of the things that would cause me the most stress were:
- The first day...When I had to meet new teachers and tell them about my vision. and explain that Yes that's right...even in the front row, I cannot see the board.
- Finding my friends in the cafeteria at lunch time if I walked there alone
- Praying that I would not be called on to read aloud in class.
- Getting on the right bus
- Listening to all of the other kids talk about getting their drivers licenses.
- Being able to find my mom's car if she was picking me up.
Most, if not all kids have anxiety when they start a new school year. If you are a parent with someone with a visual impairment, you can be sure the anxiety levels are high. Don't be surprised if they seem agitated, or are snapping at you more than usual. They might say they do not want help with homework and they might not. But they might be relieved if you pick up the book they are reading and read it to them for a bit. Its hard to accept help from others, especially when you feel like at that age you should be handling things yourself. But you eventually learn that it is not a sign of weakness to ask for help. In the high school years, kids might not have learned that yet.
When it came time for me to go to college, I applied toa few, got accepted into a few, rejected and waitlisted from others. One of the colleges I got into was a prestigious local college. My mother called the school to find out about their disability services and was transferred several times without success.
She called UMass and was connected to the Director of Disability Services who assured my mother she was the person who could help me. For lots of my friends, UMass was their "safety school."
To me, it became a place where my visual challenges were recognized and alleviated as best they could. Although it was (and still is) a huge school, I was able to receive the accommodations I needed. And I was able to earn my B.S. in Hotel, Restaurant and Travel Administration with a GPA of 3.52. I also had my brother close by for the first two years, which was a big plus! :)
During college, I worked at Walt Disney World in Florida for a while, and I studied abroad in Switzerland one summer. These were fabulous experiences for me. My parents were both very supportive and proud. At the same time, I would be willing to bet that my mom's head was full of more fears than I could have even imagined.
Things are so different these days. If I was a parent with a child with vision like mine, I would get them an iPad. It will help them tremendously.
They can read in large font, use it as a magnifier, take a picture of the blackboard and zoom in on it, and much more that I might not even realize since I do not use mine in an academic setting. But I can tell you that if I was a student, it would be a life saver.
I know my mother would agree with me on that one! She and my dad actually bought me my iPad!
If I could somehow transfer all of my mom's knowledge and advice to others who are facing a similar journey, I would. She has gone through a lot with me and my siblings and has done an incredible job..:) She continues to show compassion and understanding in regards to my vision.
There is so much more I could say.
Mom, I hope you know how much I appreciate you. How much you do for me now and have done my whole life. I love you!
