The Washington Post recently spoke with the head of the Global Downs Syndrome Foundation, about how to talk to your child about others who have disabilities. It can be hard for people to deal with things like this today. But why? There were some really interesting things here; read through it...do you think they covered everything? Read on:
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Growing up, I was never really
exposed to children who had disabilities. The kids in my elementary
school in the 1970s who had Down syndrome, autism or cerebral palsy were
in a separate classroom, and we rarely saw them. And while I remember
very clearly my parents talking about race, religion and sexuality, we
never talked much about disabilities.
Sure, we were told that it wasn’t polite to stare, or ask a lot of questions. But that was the extent of the conversations.
We’ve come a long way. Now, many children with intellectual or
developmental disabilities are in the same public school classrooms as
their typically developing peers, for part, if not all, of the day.
There are entire months set aside for autism and Down syndrome awareness, and plenty of blogs out there about parenting a child with disabilities. It’s become part of the mainstream.
But because we didn’t grow up with a lot of exposure to people with
different abilities, many parents today struggle with how to talk to
their kids about disabilities, according to Michelle Sie Whitten, the
executive director of the Global Down Syndrome Foundation.
“There’s this dark period in our history where anyone who was
disabled was put into an inhumane institution,” said Whitten, who lives
in Denver. “They lived really tragic lives, and they died early, tragic
deaths. What that meant for me growing up was I never met a person with
Down syndrome. How, as a parent, do you explain something that you
don’t know about or something that was hidden?”
In 2009, the foundation began holding the “Be Beautiful Be Yourself” fashion show in Colorado to benefit the Linda Crnic Institute for Down Syndrome,
and to highlight the abilities of people with Down syndrome. The group
added a show in Washington in 2011. This year’s event is scheduled for
May 7 at the Mayflower Renaissance Hotel.
“We wanted to put the paradigm on its head and make the person with
Down syndrome the center of attention,” Whitten said. “You have a person
with Down syndrome on a professional catwalk, dressed to the nines,
paired with a Hollywood or sports celebrity, rocking the runway.”
I recently spoke with Whitten, whose 10-year-old daughter Sophia has
Down syndrome, about common misconceptions about Down syndrome and how
parents can teach their children to have empathy, respect and compassion
for people with disabilities. Here are edited excerpts from that
conversation.
Tell me about your daughter.
She’s like any child, any typical child. She really enjoys being with
her family, she loves being with her friends, she loves anything
associated with school and the fun things at school… She loves ballet.
She’s taking piano lessons, and she likes it a lot. Not as much as
ballet, but she certainly enjoyed showing off at her first recital. She
loves food (particularly spaghetti and meatballs and sweet and sour
spare ribs) and likes to travel…. All of her desires and likes and
interests are very similar to any kid, but of course she does have some
challenges as well.
What are the most common misconceptions people have about Down syndrome?
There are so many. There’s this idea that our children can’t learn,
that they can’t speak well, that they are difficult to manage in a
school or sports setting. There’s even physical stereotypes, that they
all look alike, with their tongue hanging out, and they drool. There’s
an idea out there, even today, that somehow the mother in particular did
something wrong in her pregnancy. People think they can’t have a job,
get married or go to college. We’re really talking about two different
syndromes. When people with Down syndrome didn’t have access to medical
care and were put in institutions, in the 1980s, their life expectancy
was 28. With people growing up in their homes and being provided medical
care and going to local schools, today the average lifespan is almost
60 years.
Why is it hard for parents to talk to their children about how to treat people with disabilities?
In the U.S., the primary reason is because of this sad history we had
for people who are differently abled…. A general reason parents
struggle to tell their typical child how to interact is because they
don’t have that experience. And even if someone has some experience, you
don’t know what to tell your child about anything. It’s all new. It’s
kind of trial by error. The other reason I think it’s a challenge for
parents is because the situations are so different. How do you react to
someone who looks different, acts different or is doing something that’s
not appropriate? It’s not that different than responding to someone who
doesn’t speak English.
What do you wish parents would tell their children about Down syndrome?
A person is not a label and Down syndrome doesn’t define them. First
and foremost, it’s a kid that you like or find challenging for whatever
reason. Everyone has their own strengths and challenges, their own kinds
of intelligence…. We often talk to parents who say ‘Your sister or
brother can learn that but it may take longer for them.’ The big
question is, ‘Is that because of Down syndrome?’ And they say ‘It could
be, or it could just be how your sister learns.’
If you ask me ‘What is Down syndrome,’ it’s very hard for me to tell
you exactly. If I say it’s three copies of chromosome 21, what does that
mean? It’s impossible for something that is a label to define something
that is undefinable.
We encourage parents not to use language that provides limitations or
negative stereotypes, like they’ll never do this or they’ll die early
or never learn math or how to make change…. If you make sure you have
high expectations, and that you’re patient and kind, that’s the best
thing you can do.
What should parents have their child do when approaching someone with Down syndrome?
As long as it’s in the context of what you would do for anyone, it’s
fine. If your child loves toddlers and babies and you allow to go up to
them, but say don’t if the baby has Down syndrome, that’s a problem.
What should an adult say to the parent of a child with a disability?
When Sophia was born I had some of my friends confide in me and say
they didn’t know what to say. Sophia was giggling or grabbing things or
commando crawling, and people weren’t saying what they said with other
babies. They’re afraid it will insult you. It won’t. It will make you
feel good to provide that baby with all the same accolades and
encouragement you provide any baby. That’s what the parents—and even the
child—need to hear. When the baby is born, the first thing you say is
congratulations, and ask about the baby, while keeping in mind that
possibly the mom is going through a bit of a depression. Keep it in
context, but still treat it like a typical baby.
What should they absolutely NOT say or do?
I remember telling a friend and them saying ‘Oh my gosh, the
suffering you’re going to go through.’ That’s probably not the best
thing to say. ‘I’m sorry’ doesn’t cut it. A baby’s been born. A friend
of ours was shocked, then said ‘You’re going to have a different
experience, but it’s going to be great, just like any kid.’ … For those
who had planned a child with the person they love and they care about,
that baby is still 50 percent you and 50 percent him, and you’re going
to see that more than you see Down syndrome.
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