Living with Differences
By Anna Stewart
In
the first week at my daughter's inclusive preschool (half
kids with special needs, half "typical" kids), the
parents smiled thinly at each other as we tried to figure out
who had the disabled kids and who didn't. No one knew how to
begin a conversation — we were afraid of offending each
other.
I called a meeting so we could introduce our kids and ourselves.
In 30 minutes, everything changed. We found our common ground:
we were all parents raising preschoolers. Some of us had
children who loved music, couldn't use the bathroom yet or
screamed
when someone got too close. And some of us had kids with
disabilities.
What’s
appropriate for the others?
Later that same week, I went to a workshop for parents
raising kids with special needs. Three of the
mothers had kids with
severe disabilities — kids who would never walk,
talk or go on sleepovers. Three others had children born
with Down's
Syndrome. One mother had two kids on the autism spectrum
and another had a blind toddler.
Several
others were like me. My daughter looks normal but she isn't.
Like so many parents whose kids live with "invisible" disabilities
such as sensory integration issues, learning disabilities,
attention disorders, mental illness and general delays, we
face the challenge of raising kids who look "normal" but
behave inappropriately or immaturely. We are often the ones
most judged as "bad" parents.
We
all knew a lot about how to be with our own disabled children,
but we were unsure how to be with each other's.
One mom whose
10-year-old son is immobile was asked to watch a child
with autism who ran all over the place. She had no
idea what to
do.
Since
we had our common ground safely beneath us, we could talk
about the differences even within this small
community.
If it's hard for us to figure out, imagine how difficult
it is for "normal" families to know how
to talk to us, much less truly understand what it
is like to raise a child
with special needs.
Finding
common ground
When I hear or read honest stories about living with
disabilities, I am reminded that the common ground
we share is that first,
we are all parents doing the best we can — whether
we are taking our kids to soccer games or to speech
therapy. If
we relate to each other as parents first, then
we can begin a relationship that is based on real
understanding, honest
interest and open dialogue. Now that would be truly
inclusive.
In
our neighborhoods, at our schools and in the
grocery store are families whose lives are touched
by a child
with a disability.
Actually, there are over 20 million such families
in the United States. We often don't know who
they are
or how
to interact
with them. We stare, trying to figure out what's
wrong with these children. We avoid eye contact.
We leave
them alone,
convincing ourselves that they don't want to
be bothered, or we judge the parents for not controlling
their
children.
Here's
the truth: On bad days, we don't want to talk to strangers;
we don't want to explain
our
children.
On good
days, we are
happy to educate other parents about our child
and our lives. And we want to be seen as the
loving parents
that
we are.
The
burden of having a child with special needs is political
as well as personal. We want to
be able
to go out in
public with our children, but it is not always
easy for us. We
don't want pity or even help. We do want
compassion and accessibility.
The
bottom line: commonality
How do you introduce yourself to someone
who has a child with special needs or a
child with
different
needs than
your own?
My advice is to look for something you
have in common. If you're at the park swinging
your toddler
and you
notice the
child
next to you has Down's syndrome, open with
something like, "I
can't keep a hat on my kid, either," or "What cute
shoes! Where did you get them?" or the easiest of all, "What's
your name?" (ask the child, even if
she or he can't speak).
Avoid
asking how old the child is. Almost
all of our kids with special needs are
behind developmentally
and comparing
by age
is a tender issue. When my daughter was
a toddler, I often told people at the
park or store that
she
was
younger
that
she was more to protect my own heart
than hers.
One more bit of advice. When you talk
about our kids, please don't call them, "that Down's kid,” or “that
disabled kid." Put the kid first,
the disability second. We do.
We
give a lot of lip service to accepting differences in my
community. It's easy
to say we accept
all races in an
almost
all-white town. It's easy to say we
accept all kids as long as they aren't in our
children's classes, bringing down the
CSAP scores. It's easy to say we think
equal access is
important, except when we're asked
to help pay
for
it.
It's
not easy to live in an inclusive community, but it's critical
that we
do. If we can't
accept differences
in
our own villages,
how are we going to find peace in
the global community? So when you see me
or another
parent like me, introduce
yourself.
We might have more in common than
you think, and so could our children.
© Anna
Stewart
Anna
Stewart, B.A., C.M.T., C.H.T., mothers three young children,
one with special needs. In her classes, workshops and services,
she weaves her expertise as a professional writer, creative
artist and student of rhythm dance. Anna offers a number
of classes in the Boulder, Colorado, area. She can be reached
at (303) 499-7681, anna@motherhands.com or see her web
site at www.motherhands.com.
