YouTube Transcript:
How I learned to see through they eyes of my sons_ | Kristin Smedley | TEDxLincolnSquare

[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]