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How I learned to see through they eyes of my sons_ | Kristin Smedley | TEDxLincolnSquare
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[Music] Eric wyam Mayer climbed to the top of the highest mountain on all seven continents Kathy nimmer is teacher of the year in Indiana and in the top four in the country Tom wowski is vice president at Comcast NBC Universal Lonnie Bedwell kayaked the 226 miles of the Grand Canyon Diane Barbarian is a triathlete and Iron Man competitor now these rock stars are at the top of their game but they have one interesting thing in common they're all blind I met a blind person for the first time 17 years ago it was my newborn son Michael until that point I I didn't know any blind people I mean I I knew of blind people so I grew up in the 70s and ' 80s and Stevie Wonder was all over the radio and and on TV at the award shows and also on TV was one of my favorite shows of all time back then was Little House in the prairie so if you were a fan you might remember that one episode where the one daughter Mary woke up completely blind the parents were devastated I was devastated I mean it was they they they freaked out they had to ship her off to a School for the Blind where she had to live I didn't have real life role models for blindness so all I knew about blindness was it would be lonely isolating devastating the day that our journey into blindness began was like one of those days when you know how in the movies when everything's picture perfect and then all hell breaks loose that was my day I mean I was it was back in the year 2000 and I was living in my brand new mcmansion with my perfectly manicured Green Lawn and I had the perfect little family of mommy daddy and bouncing baby boy swear to God we lived in a town that was always rated the number one place to raise a child I was in my 20s I I still had the perfectly shiny hair that didn't require all the product to get that shine it was amazing it was a perfect life actually and then a doctor told me not so much I was like blind wait what he's blind come on how blind very blind well he'll play baseball right no oh my God will he drive no well what's he going to do well he'll have to learn Braille bra and he's going to have to walk with a white cane the Blind King my son Christen the life you had planned for your son is isn't going to happen good luck as that doctor finished talking the feeling that had grown in the pit of my stomach climbed its way up to my heart and it was squeezing Tighter and Tighter as images of the life I had planned for my son were racing through my mind things that I had planned since before I even met him I mean baseball prom his wedding MVP valedictorian summum La I mean his dad and I were pretty talented athletes so I figured I had the football quarterback or the starting baseball pitcher I mean in every scene in my mind he he was achieving succeeding and happy the whole scene went dark with that one sentence from the doctor your son is blind but here's the thing it would take me a while but I would come to figure out that those were my dreams for my son that was the life I planned for him but what about my what about his dreams I mean he was just getting started on a journey that he was supposed to be on and and to live a life the way he wanted to live it h it turns out that my son has a mutation in a gene by the name of crb1 and this mutation causes an inherited retinal disease called Li's congenital amoros we we just say LCA because it's easier and shorter so crb1 LCA attacks the two pieces of the retina that you use to see the rods and the cones so the rods are for your nighttime vision and the cones are for details and colors like you're using your cones right now to see all the details of my face crb1 LCA patients like my son don't see at night and they can't see print in a book Michael's never seen my smile and he actually has no idea what I look like CB1 LCA is a rare disease that only affects about 300 kids in the United States I know it's that rare both parents have to be carriers of this to have an affected child and each pregnancy stands a 25% chance of an affected baby the crb1 LCA is not included in those prenatal uh premarital blood screenings as you can probably imagine I struggled with this for for longer than I care to admit and there was one particular morning when Michael was 3 years old I was stuck when I got out of bed and and made it to the foot of my bed where that's as far as I made it that morning and I was stuck in fear of how to raise a blind child well cuz I didn't know how to do that and if I'm being honest I was stuck in in grief over the loss of the life I was supposed to have you know and I I was having one of my many conversations with God we'll call it that it's a full-blown tantrum one-sided tantrum and I was getting pretty good at them giving him the what's now on how this really should go down you know and I could hear Michael playing in in his room down the hall from mine so I was doing all this in my head you know doing my screaming and yelling tantrum and I was just like this is so hard and I actually think it's mean to do this to a kid and what did I ever do to deserve this and then I heard Michael making his way down the hallway Michael didn't walk Michael bounced and he skipped and he glided through every day and he made his way into my room and stopped when he was about a foot in front of me and he said Mommy are you in here yeah buddy I'm right here in front of you on my bed and he said Mommy I just had to come down here and tell you isn't this the best day ever and I was like is it and he goes mommy um the sun is shining and I'm playing with all my stuff and I'm just so happy and then he spun around and and went back to his perfect day and hit me like a ton of bricks I thought he's not stuck he's not devastated he wasn't bothered by this blindness thing at all I I was the one stuck and so bothered and I had such a limited view of this that all I could see was blindnesses devastating what I couldn't see was right in front of me the happiest three-year-old the happiest kid I had ever met things started racing through my mind like the the pictures of of a typical day with Michael at that point I mean him playing out on the driveway with that that cozy c car thing and then him splashing around in the neighborhood pool and and playing at the playground always smiling always living completely unaffected by his challenge Michael couldn't see with his eyes but he could experience the world with his entire self I mean he could hear and taste and touch and feel his way through everything life had to offer he just couldn't see with his eyes didn't bother him at all I was the one that had been blind to the possibility of my son having an amazing life so right then and there I I decided to stop seeing Michael's world as I thought it should be and instead how Michael saw it he completely shifted my perception of blindness at that point and that little three-year-old taught me to see a whole new future for him it was amazing so who loves a curveball my life is full of them my second baby Mitchell was diagnosed with crb1 LCA just like Michael this time though things were different now I had a role model I had Michael and he had already taught me to see this whole thing differently and I did I grabbed my two boys by the hands and we jumped into the typical overscheduled ridiculous life that everybody else was living I mean we went to the playground every day and we were at the birthday parties every single one of them and we signed up for every music class that we could fit into our schedule as they got older they joined the football team and they wrestled and went out for the soccer team too now okay I was right there with them in all of this guiding describing narrating all the visuals they came their way and do you know what the blessing is in all of that having to be with them teaching them about the world at that level I got to be in their world all the time where they talked to me all the time they shared with me all their thoughts all their their dreams God they're ginormous dreams and when the time came for them to be independent and they let go of my hand and took that white cane I was actually cool with that I was because the thing I learned from Guiding two blind kids to be independent it showed me that that our kids are extraordinary and they're remarkably capable if we give them the right tools and my guys had their tools and they were ready to go and and little by little I stopped regretting what I thought they were missing and instead I let them teach me what I was missing so we were in Hawaii and learned how to surf Michael patiently learned the rhythm of the ocean and he figured out when to pick the right wave and ride it into Shore and then there was me I was awful I was awful he had to coach me on when to ride the wave and then we were in Colorado and had a chance to snowmobile on this ginormous mountain and I'm at the top thinking how do you begin to describe the spectacular view to them they didn't have time to wait on me describing they were busy talking about the changes in air pressure and and temperature and wind speeds I mean their view was so much broader than mine then we had an opportunity to be in Florida where we were we spent time on the west coast and the east coast and compared the two well I'm laying there watching sunrises and sunsets and trying to think of names of colors to tell them they were off comparing the the intensity of the waves and the difference in textures of the sand and Mitchell was all over collecting all the different shells that he could find I mean they had so much to do and so much to talk about so there's this this term in blindness called cited guide and it refers to a sighted person guiding a blind person through a new or maybe a complicated space it's pretty simple the blind person takes the elbow or the wrist of the sighted person and they walk together spending so many years being the cited guide for my boys has allowed me to stay in touch with them really in touch with them you know what I mean and now they're my guides for the things that I should be seeing in this world and one thing they're adamant about is not to be seeing any limits on their lives I mean they've been on this Limitless Adventure where they're they're thriving and they're so normal you know that years ago we enrolled them in the regular public schools in our neighborhood now they're in middle school and high school and they're both in the top of their class so the Center for Disease Control reports that there are 21 million Americans that are considered blind or visually impaired it makes up about 9% of the population but get this of that 21 million nearly 70% are unemployed nearly 70% of blind Americans are unemployed and the kicker is it has nothing to do with career options but everything to do with the fact that people think blind people just can't do the work wait there's more 30% of blind Americans are living below the poverty line only 31% will get a high school diploma or GED and only 14.4% will get a bachelor's degree or higher and the kicker with that one is it has nothing to do with intellect but everything to do with a lack of access could you imagine if only 30% of your high school class was going to graduate or only 14% of your college buddies made it to the Finish Line I mean blind people are denied access to jobs training education simply because we can't get our heads around how someone can access the world without sight a former president of the national Federation of the blind said this the future of cited children depends on a proper education the future of America's blind children is no different is no different I learned that my guys are not not different they just see things differently and quite frankly it tends to make them way more efficient than the rest of us I mean the things people rely on my blind kids for now it's it's insane so take this my guys are legendary in our neighborhood because they can hear that ice cream truck coming way before the rest of us there it's like Michael and matro always like wait for it wait for it come on SED people catch up to us catch up to us so thank God technology finally caught up to them and closed a ton of gaps in the classroom for us so take a look at this this is called the Apex Braille note and it's about the size of an iPad sort of my guys can read and write and Braille with this and the best part is it hooks up to a regular printer so they can print out their work for their cited teachers to see it but they're moving even faster than that now they just email all their stuff directly to their teachers who get it they access the internet with this they you stick a jump drive in the side and they can read all of their books and textbooks in Braille yeah it's so cool I mean it was such a game Cher for us and it isn't just this I mean computers cell phones even cable TV they're all being redesigned so that the Blind and cited can use the same product and get the same access it's amazing I mean take it from me a mom of three thriving kids that things are finally changing in the world of the blind and got ahead of myself let me back up for a second I had a third child sorry I had a third child and and when Carissa was born I didn't need a doctor to tell me I saw her eyes and I saw her eyes recognize that I was her mom it was a look my boys never had Carissa can see but she has a unique advantage that's even more convenient than sight by the time Carissa was born we were nearly 5 years into accessibility I mean she walked with her brothers on the bridges that we spent years building inclusion and access they were words that she didn't need to learn she lived them since birth I had two blind kids and then I gave birth to this little sighted person that would automat atically include adapt for and embrace everyone it's a gift that I'm finding so few people have but everyone that meets Karissa sees it Carissa's grown up watching her Blind Brothers go to school play sports get elected to student council get in trouble but she enjoys way too much and she's watched them succeed and fail just like the rest of of us blindness it's in the background at our house and it's in the background of the homes and lives and careers of people living without sight so take a look at these kids and um what do you think they all have in common they're all baseball players right these were regular teams in our regular town and my guys wanted in Michael and Mitchell were the only blind kids to take the field Michael let led the team in RBIs Mitchell was his team's fastest base runner they both were voted as allars they both were on teams that went to the championship and they both won when I gave birth to my kids I expected success achievement and above all else happiness for all three of them now I initially saw blindness as a barrier to all of my dreams but once I had a change in perception my eyes were open and man I saw their successes their achievements and every day their happiness a change in perception can happen for all of us at any point in time I highly recommend it sooner than later thank you [Applause] [Music]
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