Monday The Arc Board of Directors meets to review the Governor’s Proposed Budget,
review nominations for the board and much more.
Tuesday we host an Employment Seminar at the Tinley Park Convention Center. The
seminar is sold out.
Wednesday the Convention Committee meets to review nominations for Arc Awards.
Thursday the Sedation Dental Bill, HB 235, will be heard in the House Special Needs
Services Committee. I will also be meeting with advocates about supportive living.
Friday I am back in Chicago to meet with Mark McHugh the new CEO of Envision.
Great Perspective from Sunday’s Chicago Tribune below.
Tony
Finding the gift in autism
By Kathleen O’Grady
When my son, Casey, was diagnosed with autism at age 4, I thought our world
had ended. I thought our family was doomed to defeat and misery and decades of
frustrated, circular searches for meaning: “Why us? Why him? Why anyone?” I have
never been so wrong about anything in my life.
The thing with Casey is that he has this gift, which he shares with all those who take
the time to know him, for finding delight in the most mundane situations. It is the flip
side of autism; something the books and the specialists and the media scare-
mongerers never tell you.
Kids with autism, and their families, struggle with many challenges: difficulty with
verbal and social communication and interaction; fine and gross motor difficulties;
uneven developmental trajectories; crippling anxiety and self-regulation dysfunction.
These cannot be minimized and the burden is not an easy one. But kids with autism
are also often singular in their attention to the things they love and the things that
give them pleasure; this makes them wholly present and pure receptacles of joy.
For Casey, his love has always been city buses. This is not uncommon in a young
child, but he loved them so much that before the age of 3 he had most of the city’s
bus routes memorized, and while he couldn’t answer in full sentences (something that
wouldn’t come until after age 6), his first words, along with “mama” and “papa,” were
words like “articulated bus,” “transfer” and “bus pass.”
We didn’t know he had autism at the time; in retrospect, this should’ve been a clue.
By age 5, while other kids were sounding out the words to their favorite “Sesame
Street” books, Casey was sounding out, and quickly memorizing, all the words found
on the free transit maps and bus schedules around town.
It’s often said that kids with autism don’t have an imagination or, in the more nuanced
books on the topic, lack “imaginary play.” I’ve never found this to be the case with any
of the kids I’ve seen on the spectrum. In fact, I’d argue the reverse from my parenting
perspective. I think kids on the spectrum often have such vivid powers of imagination
that the “real world” has difficulty competing.
In Casey’s case, of course, he dreamt of city buses. He talked about them incessantly,
and when he conversed with others, the dialogue often went something like this (in
rare full sentences): “Where do you live? Do you ride the bus? Which bus number do
you take? Do you have a bus pass?” — and so on. Once Casey exhausted this script
, he’d ask the same questions to the same person all over again (and again), not
because he’d forgotten or misunderstood the answers, but because he’d delight in
them.
So it was with his imaginary play. Throughout our house, he created a vast labyrinth of
bus stops replete with cutout paper bus numbers. But the most important bus stop of
all was right in front of our house. He insisted that the city bus stops at the foot of our
driveway, and he created his own bus stop in his mind. Every day he’d play “buses” in
front of his imaginary bus stop on our front yard.
Casey would tell friends and neighbors who would drop by about the bus stop at the
end of our yard. They would look in earnest, but of course, there was nothing there to
see, so they’d figure out he was playing and, gamely, play along. This went on for
years. That’s why one Sunday morning, when Casey pointed out our front window
and said, “The bus is here!” with great enthusiasm, I said something like, “That’s nice,
honey” and didn’t bother to look up. None of us did. So he said it again, “Look! The
city bus!” “Uh huh,” I responded two and three or more times. Until finally I looked up
to appease him.
And there it was. At the end of our yard, sitting directly in front of Casey’s imaginary
bus stop, was a real live bus. An articulated city bus to be exact. Let me tell you how
improbable this was. We live on a tiny dead-end street in a quiet little neighborhood
where no city bus would or could ever venture. There’s nowhere for buses to go, and
there’s almost no one for them to pick up. So when I saw a city bus parked at Casey’s
imaginary bus stop, I had to take a sip or two more of my morning caffeine before I
could take it all in. But there it was.
Like it had jumped from his head to his crayoned pages to life in our yard. I
immediately thought this had to be planned. This had to be a crazy gift from one of
our lovely neighbors who endured Casey’s imaginary bus scenarios at that very spot
for years. I looked over at my husband to make sure he was not in some way
responsible. But he looked as incredulous as I did.
Casey ran outside to watch his city bus, still parked in the imaginary bus stop — now,
not so imaginary. Then the neighbors started to come out too, to their front porches
and decks and stoops, to see what the heck was going on. Not only was there a real
bus in Casey’s imaginary bus stop,there were real people on the bus. They looked
as confused peering out their windows as we did peering in at them. That’s when
we finally noticed the panicked bus driver.
You see, our dead-end street is compact enough that it was easy pulling in, but
getting out would be a whole other matter. It would take a skilled driver with nerves of
steel to manage backing out an articulated bus with our tight corners, dodging parked
cars, houses and curious onlookers.
So here’s what really happened. It turns out it was a new bus driver who had to take
a last-minute detour from a major road nearby because of a charity marathon. She
thought our street was a throughway back to the major arteries of the city, and now
she was trapped.
For a full 30 minutes, Casey’s real live bus sat at his imaginary bus stop. We all
waited to see what would happen. Finally, a senior bus driver arrived in another
vehicle, took over, and with pretty impressive skills backed the bus out in a single,
long, fluid motion. The bus was back in business. When it was finally gone, Casey
grinned and turned to all of us and said: “I told you it was a bus stop.”
He went on playing as if nothing huge and improbable had just happened. His real
bus gave him joy, but so had his imaginary buses.
The thrill for the buses was always there, real or not. We were the ones who
needed the real bus.
Casey’s older brother turned to me and said, “Casey can make things come out of
his head and happen.” I had to admit, it kind of felt that way that day.
Kathleen O’Grady heads QUOI Media Group and is a research associate at the
Simone de Beauvoir Institute at Concordia University in Montreal. She is the mother
of two boys, one with autism.
Tony Paulauski Executive Director
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423
815-464-1832 (OFFICE)
815-464-1832 (CELL)
Tony@thearcofil.org
