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