Wednesday, August 21, 2013

Back to School

Hi everyone! Its been a while since my last post!   Been a busy summer!  Its hard to believe school is starting up again soon.  And in some areas of the world it already has!  That is what prompted me to write this post.  But before I get into that, I would like to give a brief rundown of the research study in which I participated earlier in August.  It was conducted by a second year student at a local school of Optometry.  She was great.  very personable and professional.  It is ironic because the study was evaluating how people with visual impairments can see other people's faces.  I had spoken with a friend of mine who had participated in this study and he had warned me that I might not be able to do it.  He was right.

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! 


Mary Jane's Playcare said...

I have been trying on and off all day to respond to this amazing testimony! I am overwhelmed. Was in tears. I know you appreciate my help, Honey. Even though I know it is difficult for you to accept sometimes.
But, I must say, in regards to your school years, you made me the advocate. I would watch you and see how determined you were. No one was going to take that away from you....not if I could help it. You worked so hard to keep on the same page as everyone else. As a Mom and a teacher, I knew that you could have easily done the work and more, if you did not have your low vision. Teachers would say to me:she is doing so well. And I would say:imagine if she could really see! All the tools you needed upset you so much. Made you different. Imagine if the iPad was around then. Boy, would your life and studies have been easier. I love APPLE for what they have done for you.
Fears: I am going to tell one short story that may help others understand. In the 8th grade your class went to Washington on a trip. Every night, Nancy (my sister) would listen to my fears. So many. How can I let her go? What if she loses sight of her group? What if she can't find them? How is she going to order food from those fast food neon menus? On and on. Well, Nancy finally convinced me to let you go. She even went with me to put you on the bus (probably afraid I was going to back out). So, we waved you off. Went back home. Sat in the kitchen. Looked at each other and cried. Nancy was just as scared as I was but knew you had to go.
You are right to tell the parents to expect high anxiety when school starts. Here we go again. Letting new kids know, getting teachers to understand, going out on the playground and trying to find your friends. In high school, knowing which halls were one way. Ok, enough. You all get the point. It is not going to be easy for your child. They will have changes in behavior at this time. Some will get real quiet, some angry, some extremely anxious, most will snap, get frustrated, etc. This is a very difficult time for them and for you. You, because your heart is breaking. Good luck. And if anyone wants to talk to me, Heather will give you my number or email.
Back to you, my Heather, sorry for rambling on. Hope that was ok. I am so very proud of you for doing the trials. For making yourself available, even if you think it might not help much. You are right, every tiny bit of information they get is important. I am proud of you for this blog. You are helping so many. You are helping parents, who if they are like me, feel lost and almost helpless. You are helping those who have just been diagnosed and those who have had low vision for a long time. Why, because of your spirit, your attitude, your humor, and your love of life.
I better go, your kids need to go to bed....if I can get them away from Bobbo. And you and Chip need to enjoy your camping trip. I am jealous of the kayaking and bike riding plans. And I know you probably won't dance in the dark.
I love you with all my heart, Sweetheart. Great blog. And thanks for making an old lady feel so appreciated. Kisses

Mary Jane's Playcare said...

So, Heather, I went down to get your beauties. Well, they were upstairs all tucked in and comfy and Auntie Sarah was on her 3rd reading of "Goodnight Moon". One precious Sweetheart was asleep and sweating, the other on her way. So, no worries. Good night, Honey! Love ya