Since my son was diagnosed with a retinal degenerative disease and the doctors told me that his chances of having detached retinas are greater because of the disease, I've always wondered, what can he do? what can't he do?
Some sports were just out of the question. Football could lead to a blow to the head. No way. Baseball was out because he wouldn't be able to see the ball coming at him until it was right on top of him. Yep. Another blow to the head scenario. Am I too overprotective? Many people told me that I should let my son do what all of the kids around him are doing. That fact is, my son is not like other children. He has a visual impairment. As his mother, it is my job to protect him.
I couldn't let him go through life without doing anything though. That seemed wrong. We settled on karate. In karate, at least he has some control over the situation, although, there were many times when I cringed watching him spar with other kids. After five years, he earned his black belt.
He's in his last year of middle school now. After walking to the bus stop for the last two years, he decided he wanted to ride his bike to school instead. The school is only two miles away. Of course, as his mom, my first instinct was to say "no" because of the dangers. He would have to cross a fairly busy street and ride on uneven sidewalks all the way to school. He convinced me that he could do it and that he could see well enough to be able to tell when cars were coming up on him. For the first six months all went fine.
Then, last week, I got the call from my son, panic in his voice, "Mom, I can't move my arm. I got into an accident." I ran out of a meeting with my boss and drove as fast as I could from downtown to where he said he was. When I got there, I was greeted by a blocked road, an ambulance, a fire truck and police officers. My son was in a stretcher. It took everything I had to maintain my composure without running to him screaming! The paramedic thought he broke his shoulder.
I got him to the hospital where we found out he actually tore his AC joint, the ligament that holds his shoulder and clavicle together. He was in so much pain. We were told that he'd have to wear a sling for 3-6 weeks. It could've been so much worse, but still, guilt invaded every part of me. This was all my fault. What was I thinking letting my visually impaired son ride his bike to school? He promised me that it wasn't because he didn't see the dip in the sidewalk but that he just wasn't paying attention. In the hospital, I could just imagine what people must've thought of me. How could this mother let her son ride his bike?
Later when I told people what happened, quite a few literally asked, "Why was he riding a bike to school in the first place?" The fact is, he's getting older. He's needs to figure out on his own what he can and can't do. As hard as it is, I have to let him. Did he wreck because he couldn't see? I'll never really know. He wants to try out for the swim team (if his shoulder heals on time). Once in high school he wants to be on the golf team too. His Pop-Pop taught him how to play and he's actually pretty good.
My son is old enough and smart enough (most of the time) to make his own decisions about what he can and can't do. I just have to make sure I'm not the thing that holds him back. Even though, I'll ALWAYS be there for him, it's time for me to let go a little, as hard as it is.
Converting Adversity Into Fuel
A few years back, I learned of a mountain climber who climbed to the top of the seven highest peaks in the world. That in itself is amazing. The more shocking part is that he is blind. He has the same blinding disease my son has. He lost all of his sight by the time he was 13. His name is Erik Weihenmayer. Immediately, I started researching this man.
Some of you might know Erik from that reality show called Expedition Impossible. His team finished second. In the show, Erik was able to show the whole world how he turned his adversity into a fuel to achieve greatness. He is an awesome role model for my son and for anyone who could ever think that an adversity in life can hold you back.
Erik doesn't just stop at climbing mountains and being an adventurer. He shows others how to do it too. He leads many adventures with wounded warriors and children with disabilities from all walks of life so that more people can feel what it is like to turn that adversity into greatness. What an amazing thing he's doing for the world.
What does every parent want for their child? Greatness, A sense of self-worth, An enlightened mind, Happiness, A fulfilled life, Fulfilled goals, Love, Laughter, Family, and the list goes on. For many parents of children with disabilities, there is some sort of defeated feeling thinking these things might not happen. Don't despair!! An adversity should never hold a person back from greatness, whatever that greatness might be.
In Erik's book (co-written by Paul Stoltz), The Adversity Advantage, they discuss the different "summits" one must reach to achieve this greatness. I think that's how I will try to teach my son how to approach life - by these summits. He wants to be an aeronautical engineer. He can't get there by wanting it. He has to work hard to get there. His first major summit was to do great in school and get accepted into an advanced college-bound high school program, one that will help get him into the kind of college that focuses on aeronautical engineering. I'm proud to say that he has reached his first summit. We received word this week that he was accepted into the AICE program developed by Cambridge University. He will be able to focus on Math and Science there and complete many of his college credits while in high school. His next summit is to actually succeed there. Keep your fingers crossed for him!
My favorite part of The Adversity Advantage is a paragraph titled "Life is Not Fair. Next?" Does it stink that my son was born with a blinding disease. Absolutely. Is it horrible that a woman suddenly loses use of her legs? Definitely. We all have some sort of adversity we're facing. It doesn't have to be a physical disability. It can be a mental one. Or, it can be the loss of someone close. Adversity is all around us, big and small. It sounds heartless but life isn't fair. Move on. Don't just sit there quietly and try to get through each day. Harness that adversity. Take all the feelings of anger, sadness, and despair and turn them into something amazing. Go further than you thought you could go. Erik says that a storm headed his way but instead of running from it, he took it head on! Thank you to Erik Weihenmayer for his motivation!
The things that help him see
Since my son began receiving accommodations in the classroom, he is able to use a variety of things that help him get through his school day easier.
Here is his CCTV. With this, he is able to aim the camera anywhere in the classroom and have the image appear on the screen right in front of him. The cost of this is astronomical. Luckily, it is covered under his Individual Education Plan. He has two of these. Unfortunately, they are not easily mobile. So, he has one in his math class and one in his English class. For the rest of the classes, he must use magnifiers and have the teachers prepare assignments in large print.
These are his large print books for the year. Some classes have as many as of four books. In regular size text, each class only has one book. How would you like to carry these around? Luckily, my son has two sets, one for school and one for home. Even still, with one of these books on his desk, there's not room for much else. Plus, he almost has to stand up and lean over the book just to get close enough to the top of the page to read it.
Here is what his best magnifier looks like. It's a globe magnifier and seems to work better than the regular kind with handles.
The Florida State University Low Vision Initiative has accepted him in their program this year. In that program, he will be tested to see what other magnifiers will work well for him. We are hoping they will find something that will eliminate the need for the giant large print books.
While all of these aids are wonderful and help him see better, we are still looking for the next best thing. At the Foundation Fighting Blindness annual conference, VISIONS, we saw all kinds of great devices that are smaller, lightweight and VERY expensive. I'm not sure why all of these things are so expensive. For instance, the school is trying to order him a large print scientific calculator that he will need for Algebra II, Trigonometry, and Calculus. The problem is, the calculator is over $300. How can a calculator cost so much?
It's wonderful that these tools exist and that they are provided for my son without cost to us. For all of the crazy things our taxes sometimes seem to go to, I see how sometimes they go to great causes, including helping those with disabilities learn.