[Applause]
Evangeline Rose Milliman burst onto the
scene and she made me a parent for the
first time and not only did I become a
parent but I became a parent to a child
with disabilities now there are a lot of
stereotypes right that we give people
with disabilities Paul Longmore Stella
young heroine Russo these are all people
who live with disabilities who can talk
about that because I am NOT a person
with a disability and I feel like I need
to stick with what I know so what I know
is my experience parenting a child with
disability now just as there are
stereotypes given to people with
disabilities
there are also stereotypes that are
given to parents of children with
disabilities let’s just start with
something that annoys me special people
are only given to special people
guys I’ve worked with adults and
children with intellectual disabilities
for 16 years
and I don’t want to break your perfect
bubble but special people are oftentimes
given to assholes and if we’re being
perfectly honest sometimes special
people are assholes because people with
disabilities are humans with a full
range of characteristics and personality
traits you don’t have to like everyone
with a disability I give you permission
and while I’m up here I want to talk
about the word special and stereotypes
and I just want to throw a word out to
you and that word is ableism I didn’t
make a slide cuz I thought about it
after I submitted my slides
and ableism is a structural issue that
we have today and we assign stereotypes
to people with disabilities and not just
people with disabilities stereotypes to
people with bodies that are different
than us that characteristics make us
uncomfortable I’m not gonna go into a
huge thing because that’s a whole nother
talk and they only gave me 20 minutes
but please look it up and find out more
about it because there’s nothing special
about my daughter’s need for a quality
education access to transportation and
access to medical care all right so I
have a super super smart friend who just
finished her doctorate in rhetoric and
words and writing I apologized and she
introduced me to this quote words create
worlds I heard this quote and I
immediately became really really
obsessed with it we live in an age where
people want to dismiss words we hear it
a lot they’re just talking that doesn’t
mean anything it’s just empty words but
I believe that words have meaning and
they have power I don’t think it’s any
accident that in one of the world’s main
religions the creation story starts out
with the spoken word let there be light
words create worlds they have the power
to bring about change to move people as
I thought about this quote I began
thinking about the different ways that I
had heard people talk about parenting
children with disabilities there was a
really popular blog that goes around
called the mother I could have been and
in this blog a mother laments about how
when she was gonna be a parent she had
the dream of being the cool mom she was
gonna go to story time she was gonna go
to music time she was gonna go on play
dates and brunch and sit
moisés but that didn’t happen because
she had a child with disabilities and
instead of being this mom she was the
mom that did therapy appointments and
she was the mom that did doctor’s
appointments and she was the mom that
always had to worry about her disabled
kid in all fairness in the last sentence
she does say I’m the mother I’m supposed
to be but what have I heard all along
what have those words conveyed to me
they’ve told me I read that and I
thought God having a kid with
disabilities kills your dreams I went to
a popular disability studies seminar and
there was a woman there speaking on
parenting a child with disabilities and
naturally I went and I don’t remember
anything she said other than this quote
that she never had the privilege to
parent a typical child and all I got
from that was that parenting a child
with a disability is not a privilege
when I was holding my two-week old baby
and so in love she was a cutest little
big in the world since the doctor looked
at me and said you and your husband need
to have genetic testing so we can make
sure this never happens again what does
that tell me about my baby words create
worlds this is what my friend Lisa calls
the power of an introduction we have the
ability as parents to shine light where
there is no light and to create the
world that our children will go into we
have the ability with the way we speak
of our experiences to either promote
interests or to present them as burdens
very early on my husband cliff and I
made the decision to be very very public
about our journey with Evangeline
and we don’t hide stuff we show it all
we’re very honest about the nitty gritty
the hard times the good times the
mediocre times I mean and Weiss
basically that we gave her her own
hashtag Evangeline my love if you want
to see her cute face and we wrote her a
song I started a blog we really wanted
to show the world disability and what
parenting children with disabilities
look like so I want to tell you right
now I have never felt an emotion
parenting a child with disability that I
haven’t felt parenting a child and I’m
not trying to make you feel sorry for me
and it’s really hard to talk about but
guys I have a two-year-old and she’s so
hard and I just can’t even parenting
it’s so freaking hard okay and that just
is parenting in general and if any of
you are like paintings the easiest thing
ever please come talk to me afterwards
and tell me your ways I like to tell
people that disability can be scary but
it’s not to be feared
there are scary moments in our lives it
was a scary moment when I had to take
Evangeline and to have her heart checked
to see if she had holes in her heart it
was a scary moment when I stood at her
hospital bed while a team of doctors
came in to make sure that she didn’t die
right then and I was closed because I
was just like oh this was interesting I
should take a picture to document this
experience it’s scary
parenting is scary the amount of times
I’ve gone in to check and make sure of
Angelina’s breathing I’ve probably done
the same amount of times for my other
children right because we’re parents we
have children we want to make sure
they’re okay the biggest thing I want to
push out here is
um I’m not here to shame anyone
I’m not emotions are so so important I’m
a big fan of dr. Susan David and she
does a lot of work on emotional agility
and she says that emotions are data and
not directions you need to be able to
feel your emotions and sometimes those
emotions are negative if you’re me maybe
sometimes those emotions negative but
have a support system I think Sam
mentioned it earlier this is a community
find a community where you can talk and
you can tell people what’s going on and
how you’re feeling I can’t tell you when
I meet parents of children with
disabilities who their kids are older I
want to suck their knowledge dry and I
want to find out and I want to go to
them and say I’m so frustrated with this
I don’t know how to handle this feel
your emotions find your support system
but remember we as parents have the
power and this goes for all children
right we have the power to instill in
them Worth and value and it doesn’t
matter if they’re disabled their typical
my parents were very good at instilling
Worth and value and that’s why you’re
stuck with me here today because why
wouldn’t you want to hear what I say
right we have the power words create
worlds guys we live in a society where
entire nations have the goal of
eradicating disability words create
worlds we live in a society where people
aren’t valued because we don’t think we
can take value from them words create
worlds and we live in a society where a
doctor can look at a new mom and tell
her her baby doesn’t matter and that it
won’t happen again
our words create worlds what kind of
worlds will you create today thank you
[Applause]
Evangeline Rose Milliman burst onto the
scene and she made me a parent for the
first time and not only did I become a
parent but I became a parent to a child
with disabilities now there are a lot of
stereotypes right that we give people
with disabilities Paul Longmore Stella
young heroine Russo these are all people
who live with disabilities who can talk
about that because I am NOT a person
with a disability and I feel like I need
to stick with what I know so what I know
is my experience parenting a child with
disability now just as there are
stereotypes given to people with
disabilities
there are also stereotypes that are
given to parents of children with
disabilities let’s just start with
something that annoys me special people
are only given to special people
guys I’ve worked with adults and
children with intellectual disabilities
for 16 years
and I don’t want to break your perfect
bubble but special people are oftentimes
given to assholes and if we’re being
perfectly honest sometimes special
people are assholes because people with
disabilities are humans with a full
range of characteristics and personality
traits you don’t have to like everyone
with a disability I give you permission
and while I’m up here I want to talk
about the word special and stereotypes
and I just want to throw a word out to
you and that word is ableism I didn’t
make a slide cuz I thought about it
after I submitted my slides
and ableism is a structural issue that
we have today and we assign stereotypes
to people with disabilities and not just
people with disabilities stereotypes to
people with bodies that are different
than us that characteristics make us
uncomfortable I’m not gonna go into a
huge thing because that’s a whole nother
talk and they only gave me 20 minutes
but please look it up and find out more
about it because there’s nothing special
about my daughter’s need for a quality
education access to transportation and
access to medical care all right so I
have a super super smart friend who just
finished her doctorate in rhetoric and
words and writing I apologized and she
introduced me to this quote words create
worlds I heard this quote and I
immediately became really really
obsessed with it we live in an age where
people want to dismiss words we hear it
a lot they’re just talking that doesn’t
mean anything it’s just empty words but
I believe that words have meaning and
they have power I don’t think it’s any
accident that in one of the world’s main
religions the creation story starts out
with the spoken word let there be light
words create worlds they have the power
to bring about change to move people as
I thought about this quote I began
thinking about the different ways that I
had heard people talk about parenting
children with disabilities there was a
really popular blog that goes around
called the mother I could have been and
in this blog a mother laments about how
when she was gonna be a parent she had
the dream of being the cool mom she was
gonna go to story time she was gonna go
to music time she was gonna go on play
dates and brunch and sit
moisés but that didn’t happen because
she had a child with disabilities and
instead of being this mom she was the
mom that did therapy appointments and
she was the mom that did doctor’s
appointments and she was the mom that
always had to worry about her disabled
kid in all fairness in the last sentence
she does say I’m the mother I’m supposed
to be but what have I heard all along
what have those words conveyed to me
they’ve told me I read that and I
thought God having a kid with
disabilities kills your dreams I went to
a popular disability studies seminar and
there was a woman there speaking on
parenting a child with disabilities and
naturally I went and I don’t remember
anything she said other than this quote
that she never had the privilege to
parent a typical child and all I got
from that was that parenting a child
with a disability is not a privilege
when I was holding my two-week old baby
and so in love she was a cutest little
big in the world since the doctor looked
at me and said you and your husband need
to have genetic testing so we can make
sure this never happens again what does
that tell me about my baby words create
worlds this is what my friend Lisa calls
the power of an introduction we have the
ability as parents to shine light where
there is no light and to create the
world that our children will go into we
have the ability with the way we speak
of our experiences to either promote
interests or to present them as burdens
very early on my husband cliff and I
made the decision to be very very public
about our journey with Evangeline
and we don’t hide stuff we show it all
we’re very honest about the nitty gritty
the hard times the good times the
mediocre times I mean and Weiss
basically that we gave her her own
hashtag Evangeline my love if you want
to see her cute face and we wrote her a
song I started a blog we really wanted
to show the world disability and what
parenting children with disabilities
look like so I want to tell you right
now I have never felt an emotion
parenting a child with disability that I
haven’t felt parenting a child and I’m
not trying to make you feel sorry for me
and it’s really hard to talk about but
guys I have a two-year-old and she’s so
hard and I just can’t even parenting
it’s so freaking hard okay and that just
is parenting in general and if any of
you are like paintings the easiest thing
ever please come talk to me afterwards
and tell me your ways I like to tell
people that disability can be scary but
it’s not to be feared
there are scary moments in our lives it
was a scary moment when I had to take
Evangeline and to have her heart checked
to see if she had holes in her heart it
was a scary moment when I stood at her
hospital bed while a team of doctors
came in to make sure that she didn’t die
right then and I was closed because I
was just like oh this was interesting I
should take a picture to document this
experience it’s scary
parenting is scary the amount of times
I’ve gone in to check and make sure of
Angelina’s breathing I’ve probably done
the same amount of times for my other
children right because we’re parents we
have children we want to make sure
they’re okay the biggest thing I want to
push out here is
um I’m not here to shame anyone
I’m not emotions are so so important I’m
a big fan of dr. Susan David and she
does a lot of work on emotional agility
and she says that emotions are data and
not directions you need to be able to
feel your emotions and sometimes those
emotions are negative if you’re me maybe
sometimes those emotions negative but
have a support system I think Sam
mentioned it earlier this is a community
find a community where you can talk and
you can tell people what’s going on and
how you’re feeling I can’t tell you when
I meet parents of children with
disabilities who their kids are older I
want to suck their knowledge dry and I
want to find out and I want to go to
them and say I’m so frustrated with this
I don’t know how to handle this feel
your emotions find your support system
but remember we as parents have the
power and this goes for all children
right we have the power to instill in
them Worth and value and it doesn’t
matter if they’re disabled their typical
my parents were very good at instilling
Worth and value and that’s why you’re
stuck with me here today because why
wouldn’t you want to hear what I say
right we have the power words create
worlds guys we live in a society where
entire nations have the goal of
eradicating disability words create
worlds we live in a society where people
aren’t valued because we don’t think we
can take value from them words create
worlds and we live in a society where a
doctor can look at a new mom and tell
her her baby doesn’t matter and that it
won’t happen again
our words create worlds what kind of
worlds will you create today thank you
[Applause]
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