THE KEY ELEMENT THAT IGNITED MY BLIND SONS TO ACHIEVE GREATNESS
In the year 2000 I met a blind person for the first time. I was 28 years old. Until then I had had only two “experiences” with blind people: First, there was a blind woman at my childhood church that sat alone in the front pew, entering and exiting the service through a side door with her guide dog. The second was a favorite childhood television show, “Little House on the Prairie”, that had a character, Mary, who completely lost her sight on an episode and was then shipped off to a school for the blind.
Knowing my lack of education or experience, imagine how I felt when I actually met a blind person for the first time. With my extremely skewed perspective, I saw this person as I saw blindness: scared, lonely and sad. There is a problem with this on many levels, but the worst of all is that the first blind person I ever met was my first born child.
It was the summer of 2000 when my husband and I noticed something was “not right” with our perfect first baby’s eyes. We smiled and laughed as we played with him… assuming he was seeing his toys. We cooed and giggled with him… thinking he was seeing our faces. We were shocked to learn at five months old that he was seeing just about nothing due to Leber’s Congenital Amaurosis. We were told in a tiny exam room by a retina specialist “I am sorry. I know how devastating this is. You are going to have to learn how to raise a blind child. The dreams you had for him are gone. Good luck.”
I fell on the floor.
Eventually I got up, dusted myself off, and met professionals in the field of blindness to learn the tools my son would need to survive school and life. Even after a second diagnosis of LCA (my second son was diagnosed in 2003) I managed to survive as the boys were happily adapting to a world they could not see. They were surviving blindness, but I was still devastated. I was still depressed. I was still angry.
I am typically a forever optimist but I could not shake the depression, sadness and anger. And then I figured out why: When friends would send my boys cute little Eagles jerseys (we are Philadelphia football fans) all I would think was: They are never going to play football. When preschool teachers showed us the dress up area on the tour of the classroom all I could think of was: They will never be a fireman, or a doctor, or an airplane pilot. I had absolutely no expectation of my children being able to have big dreams for big lives. That is, until I heard about a man that not only had great expectations for his life, he shattered my perception of what a person could accomplish – with or without sight.
A friend told me about a book called Touch the Top of the World. The author, Erik Weihenmayer, tells his story of going blind as a young teenager and eventually becoming a mountain climber that ultimately went on to climb all seven summits of the world. It was just the story I needed to begin the shift in my thinking. Erik’s tale of growing into acceptance of blindness and creatively chasing his dreams ignited a new perspective for me - and my expectations for my sons began to change.
I read that book over and over again and sent it to family and friends. I wanted everyone to know that great things were still possible for my boys – we just were going to have to expect the best from them, help them access tools and strategies, and we were likely going to have to be very creative on our journey. I started making them do chores like I would a sighted child. I made them learn Braille so they could read like a sighted child. They went to playgroups and gym classes to socialize with other children. I learned all the tools they would need and I went into our first Individualized Education Plan (IEP) meeting at our local Kindergarten with high energy and a positive attitude that my son was going to do well with school. I rattled off terms like “inclusion” and “direct braille instruction” and “mobility lessons”. I was on fire!
And then it was the school’s turn to speak. They rattled off their “goals” and “service time” which included things like Braille instruction one time per week and occupational therapy thirty minutes per week. I thought to myself, in the twelve and a half hours per week that my son would be in that building, he’d only be taught how to read and write Braille for an hour? I knew from my teaching background that there would be sight word and words-read-per-minute goals for the sighted kids, but although Michael was highly intelligent, his goals were more like “master one to two Braille contractions per week.” There were no goals for learning how to socialize with the other children. There was no plan to address finding friends at recess. And the item that would end up changing our entire course of direction in educating our son: Michael will find his cubby and hang up his jacket 70% of the time. My husband lost his cool. “70% of the time?” he shouted. “He is only going to be able to find his cubby 70% of the time? Does the cubby move around? Do you change rooms often?” he demanded. It turns out the vision support and special education staff were only “allowed” to put 70% as the highest percentage achievable “for evaluation purposes” “After all Mr. and Mrs. Smedley”, they said, “we can’t set him up to fail. If you say he should do it 100% of the time and he doesn’t, that would make him a failure.”
Our stance was that if the sighted children were expected to find their cubby 100% of the time, then the same was to be expected of our Michael. Since that moment we have never settled for 70% or 80% or even 90% as the expectation for any of the tools our sons need to learn.
That “conversation” back in Kindergarten opened my eyes to something so many others had already known and unfortunately experienced then and still now: expectations of blind children and adults are entirely too low and not in line with expectations of sighted people. And the most unfortunate, devastating part about that: blind children, just like sighted children, that grow up knowing there is no expectation of greatness rarely achieve it.
It was time to change perspectives and raise the level of expectations of what my sons could do, would do, and should do.
As luck would have it, at the same time we were trying to convince that IEP team to raise their expectations of our son, Erik Weihenmayer was receiving an award near us at the Associated Services for the Blind of Philadelphia - and we were able to convince Michael’s entire IEP team to attend and hear Erik speak. Erik talked enthusiastically about climbing Everest and the other mountains, about getting married and writing books. He was funny. He was smart. He talked about how he used his adversity to his advantage (see Erik’s second book The Adversity Advantage) and encouraged the audience to never set limits on people, especially blind people. That speech changed the perspective of Michael’s educators, which completely changed how they went about educating Michael and later Mitchell. From that point on everyone was on the high expectations bus for my boys.
Ever since that experience with Erik, my husband and I have taken our boys to the ASB’s annual awards ceremony every year to meet the blind people receiving the awards and thereby growing our list of role models. I believe these encounters with people that are chasing their dreams and accomplishing their personal greatness are what ignited my sons to dream big and create a path to their own greatness. Michael is in 11th grade and Mitch in 8th (respectively) now and they have been elected to student government, started clubs when there was no club for their interests, and are social butterflies. They are also award winning Braille students, musicians and athletes. Michael dreams of selling out major concert venues with his band and Mitchell dreams of being the most watched weather anchor on tv. They talk about the colleges they are hoping to go to, traveling Europe with friends, the lists of dreams are endless. With every successful blind person they meet, their expectation of greatness grows and it has been beautiful to watch them follow their passions.
My boys are not surviving blindness, they are thriving.
I believe every single child has greatness. It is our job as parents and educators to guide them on their path, help them gather the tools they need, and assist them in building a team of supportive resources so that every single child, blind and sighted, chases their dreams and achieves their personal greatness.
Kristin Smedley lives in Bucks County, PA, USA with her husband, Mike, and three children Michael (LCA-CRB1) Mitchell (LCA-CRB1) and Karissa (sighted). She is President and Co-Founder of the Curing Retinal Blindness Foundation that funds vision research for CRB1, LCA, and RP and provides resources for families of blind children. Kristin speaks around the USA about raising expectations of blind children and guiding them to greatness. She also writes a blog called Eye Believe in Miracles and her first book, a collection of stories of the role models that are chasing their dreams and achieving greatness without sight, is coming soon! Connect with all of her writing, speaking and philanthropy at http://kristinsmedley.com/ and on Twitter @KristinSmedley