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by Dan
Coulter, March 17, 2007
During the past seven months, my
wife and I have met an amazing group of people.
In producing two videos about
brothers and sisters of kids on the autism spectrum, we’ve
conducted 57 interviews with siblings and parents.
People were incredibly open about
their lives. About their hopes, fears, and challenges. Most of
all, about the ways they’ve found to make things better for
their families. We went into these videos looking for “best
practices” about siblings that we could share with other
families. We got that and more.
Working on these programs has kept
me from writing articles as often as I’d like, so I thought I’d
take a break from editing and share a few comments from our
interviews.
One of the videos covers the autism
spectrum and the other focuses on Asperger Syndrome. The
programs are divided into segments to appeal to siblings of
different ages. These quotes are from the autism program’s
segment for seven to eleven year olds, which I happen to be
working on today.
Let’s start with Alex, a
wonderfully patient eight year old whose younger twin sisters
with autism used to bite the tails off his dinosaurs and stomp
on his Lego space ship, until he learned to put his toys away
where his sisters couldn’t find them:
“Sometimes when we go in the
car, I have to watch my sisters’ movies, and it’s Barney,
Wiggles or Teletubbies, …really little kid shows...but I have to
watch it…because that’s what you have to do when you have
autistic sisters or brothers. “
“Sometimes my sisters cry at
restaurants so my mom or dad has to take them out to the car,
but if they keep crying, sometimes we have to leave. So don’t
get mad at that if they do that, because it’s still just
natural, because they haven’t learned how to behave very well.”
“My sisters learn to do things
from me because they watch me. Like when I brush my teeth, they
usually find a little toothbrush and they use it and they try to
do it and it’s making their teeth clean because they’re starting
to brush their teeth more often…”
“When Eliz and I are on the
trampoline, we usually like to jump in the middle, but I like to
bounce her…and she goes to the side and I bounce her and she
laughs even more…and Emily likes that, too.”
“Emily and Elizabeth have begun
to ask me for help when they can’t get anything or need to know
how to get it or do something…they grab my hand and pull me to
where they need to go.”
“I say, ‘Elizabeth, say cracker’
or ‘Emily, say marshmallow.’ But I just keep saying it like
that and they learn how to say it.”
“…if they want to sit down and
there’s nothing there, sometimes they come and get you and they
make you sit and they sit in your lap. So don’t get really mad
at that, that’s just natural.”
You’ve got to be pretty
understanding to be willing to serve as an impromptu folding
chair for your sisters. We interviewed Alex’s mom, too. So we
could at least partly see where he got his great attitude.
After these interviews, we could almost hear mom’s voice gently
counseling, “That’s just natural.”
Make no mistake, not every child we
interviewed was as patient as Alex, but they all had their
strengths, and many had adapted to meet their siblings’ needs.
Here’s what Jacqueline said about
learning to deal with her brother’s meltdowns:
“Actually, nothing helps unless
I do something funny. Sometimes I do funny faces or sometimes I
just act silly, like run around the house…and he laughs.”
DeP, whose brother is very high
functioning and is “better at math than my mom and knows more
about chemistry than my dad” had another approach:
“When he tries to take it out on
me, my mom steps in. Then my dog comes in and she has this cute
little face. She helps out my brother a lot. Then I just pick
her up and give her to Cass. And he just holds her.”
Other kids help their siblings
communicate, Like Elianah:
“When he says something and the
person that he’s talking to doesn’t understand him, I can
understand him so I tell the person that Jaeden’s talking to
what he’s saying.”
Or Jonathan:
“I speak sign language to Kevin
because that’s the easiest way to communicate with him.”
DeP also was one of the kids who
explained how their relationships had improved,
“I get along with him a lot
better than I used to when I was about six or seven. We used to
fight a lot back then, but now, we help each other out and we’re
pretty much tight brothers.”
It was also great to hear kids
bragging about their siblings, like Briceño, whose family
discovered that his younger brother, who couldn’t speak, had
suddenly begun using one of his toys as a writing tool.
“Recinto’s strengths – he’s
really good – at his last birthday there was just a big
explosion. He loves to write letters on the little Magna Doodle
thing and he’s really good at that.”
During our interviews, we found out
a lot about how siblings learned to get along with their
brothers and sisters and what parents tried that worked and
didn’t work. We heard about a range of issues, including kids
often feeling that their siblings on the spectrum got more
attention from mom and dad.
One quick insight. The families
that seemed to be dealing best with autism or Asperger Syndrome
made an effort to communicate early and often. It turns out
many parents tend to think their kids know more about these
conditions than they actually do. You might want to test this
with your own kids. Sit down with them and talk. Explain why
you’re doing what you’re doing. Ask them how they feel about
things. You may get some input you can use to make things
better in your family.
Well, I’m going back to editing
videos. I may share more input from the interviews in the next
few weeks. This project is sort of my world right now.
With all the help kids need from
their parents understanding autism or Asperger Syndrome, you
can’t help but be impressed with some of the insights they come
up with on their own. Like Jacqueline, explaining her brother’s
lack of speech skills:
“He doesn’t really know how to
talk that much, but I’m sure he’s saying something in his mind.”
Wow.
ABOUT THE AUTHOR – Dan Coulter
plans to release, “Understanding Brothers and Sisters on the
Autism Spectrum,” in April, 2007 and “Understanding Brothers and
Sisters with Asperger Syndrome” in May, 2007. You can find more
articles on his website:
www.coultervideo.com.
Copyright 2007
Dan Coulter Used by Permission. All Rights Reserved.
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