Parenting a Disabled Child Nurturing Self Worth
[Music]
i’m the proud father of three young
children and being a dad is central to
my identity
part of my responsibility as a father is
to make sure that my children have a
healthy sense of self-confidence
i want them to grow up knowing their
self-worth
my middle son is disabled and for me
there’s really no difference between
parenting him
and parenting my other children the
biggest challenge i experience
comes through managing the multiple
administrative processes
that we have to experience as a result
of his disability these
administrative processes really
demonstrate the chasm that exists
between how i see my son
and how the world sees him and i can’t
help but wonder
what messages these administrative
processes send my son about who he
is and how i as a father need to fight
to overcome them
so case in point child care my partner
and i both work full time
so reliable affordable child care is an
absolute necessity for us
with our other two children it was a
pretty simple process we’d go
online look at reviews take a tour write
a check and we had child care
with our middle son it was a vastly
different experience now
when my middle son was an infant his
developmental curve mirrored that of a
neurotypical child
as he grew older his pathway deviated a
little bit he charted his own path
and this is important because corporate
daycare structures are built on an
assumption
and that assumption is that all children
follow the same developmental pathway
it’s a pretty linear pathway
so as a child gets older they develop
new skill sets associated with
independence and self-care
and daycares can adjust their staffing
structures accordingly so a child gets
older older
they need less attention and daycares
can adjust
the challenge here is my son doesn’t fit
those assumptions or rather
those assumptions don’t fit my son so we
would go in and have very well
intentioned conversations with
daycare center directors and care
providers about what kinds of structures
needed to be in place
in order for my son to be accommodated
we would talk about whether they could
handle his routine of care
my son is a very social being and so we
talk a lot about whether they’d be able
to facilitate happy interactions with
him and his peers
simply put was this going to be a safe
place for him to thrive
and all as a result of those
conversations we would always
walk away with hypotheticals and
possibilities so for another example
let’s talk about the playground
my son is a bit of an adventure seeker
and so he loves the playground
it’s difficult enough to find accessible
playground equipment but the one thing
my son can do is swing and let me tell
you he
loves to swing the higher and faster he
goes the more his stomach drops
the more happy he is the challenge here
is that in order for him to get out of
the playground and get on the swing
it requires a staff member to be there
with him to pick him up take him out of
his chair put him in the swing and stay
with him the entire time
now i recognize the staffing structures
don’t necessarily allow for that i
understand it
but this is one of those examples of
structures that were in place that
weren’t built to meet his needs
so as i mentioned we’d always just walk
away with well-intentioned hypotheticals
and possibilities
and as with many instances of systemic
discrimination we never got a hard no
we just simply never got a yes and so i
can’t help but wonder
what does rejection like that do to the
self-worth of my son
because he doesn’t fit the box of what
neurotypical development looks like
he’s routinely and consistently denied
access to resources and services
now don’t get me wrong this had an
impact on us as parents as well
my partner and i have taken new jobs and
changed careers in an effort to get
additional flexibility to manage his
schedule of care we also move to
different locations in an effort to
access more structures and models of
care related to family
and we’re not unique parents of children
with disabilities have higher rates of
unemployment
higher rates of underemployment and
flatter career trajectories
and this is something that impacts women
caregivers much more so than it does men
but we’re not the issue here in fact
we’re an ancillary part of the
conversation
the key concern i have is this what
messages do we send
children with disabilities about their
bodies from the very beginning
from the very start in child care
we plant seeds that they don’t fit and
we leave
them to deal with the fruits of
self-doubt that arise as a result of
these seeds
when all in all those seeds were poison
we measure these children
based on a scale that was never built
for them and then instead of
recalibrating the scale we simply move
on to the next child without
giving any sort of consideration about
what the measurement did
to the first child in the first place
now as a result of being my son’s dad
i’ve learned a little bit about
disability and i have a lot left to
learn
i have found it important to supplement
what i’ve learned by reading works by
disabled authors
in in efforts to get a more personal
lens on what disability looks like so
that i can understand who i need to be
in order to serve him well but the one
thing that i’ve absolutely learned
is that ableism isn’t some giant
boogeyman chasing you around with a
chainsaw
rather it manifests itself quietly and
insidiously and things like
administrative processes and
organizational policies telling you what
you can’t do
because of who you are so many more
hoops to jump through
so many more forms to fill out so many
more knows to get through in hopes of
getting to a yes
now right now it’s my job to take care
of that stuff after all my son is only
eight years old
but i also need to set him up to be able
to navigate through a world that wasn’t
built for him
and told him as much from day one and so
in order to do that there’s a few things
that i need to make sure that he knows
i need for my son to know that he is
perfect
i need for my son to know that his body
is perfect
i need for my son to know that his
disabilities
are a defining characteristic of who he
is
and they define him as something
beautiful worthy of love and worthy of
equitable
access i need for my son to know
the simple truth is that he deserves
better
better than anything i’ll ever be able
to give him but most certainly better
than anything the world
currently gives him and in doing so i’m
hopeful that i can partner with my son
to maybe think
rethink how we think about inclusion and
conclusivity
because it’s an easy concept to talk
about and it’s an easy thing to talk
about valuing neurodiversity
but until we get to the point where we
challenge the assumptions that undergird
processes associated with
a disability that restrict full
participation for people with
disabilities
until we listen to disabled people as
the experts
and utilize their expertise in framing
what these processes need to look like
and in doing so recognize that the
assumptions that we had were based on a
very limited paradigm of what it means
to be human
and until we then shift those
assumptions to reflect the fact
that disability is a normal part of the
human experience and in fact it’s one of
the most ubiquitous parts of human life
we will continue to plant seeds that are
antithetical to making this world a more
just
and equitable place for people like my
son
now as i mentioned at the start my job
as a father
is to make sure that my son grows up
with a healthy sense of self a healthy
level of self-confidence and
knowing his self-worth it’s something
that i strive for on a daily basis
i am hopeful that someday these
administrative processes that we can’t
avoid interacting with
do a better job of recognizing him and
valuing him for who he
is instead of distilling him down to who
he’s not
thank you
you