Yeah, well, you don't live with him. If you did you'd change your tune. He sits next to me right now re-enacting a scene from a Teletubbies video, line by line, voice inflections and incidental music included. He squints his eyes to represent the camera cut aways. Our little director. He is beautiful and totally unique. My love for him surpasses all bounds but our life is very different from my friends and their NT kids. Different from how I thought it would be. Our life now that I am used to. On a list-serve someone posted this essay and it is closer to my life than most of those articles in typical parenting magazine.
Holland Schmolland
By Laura Krueger Crawford
If you have a child with autism, which I do, and if you troll the
Internet for information, which I have done, you will come across a
certain inspirational analogy. It goes like this: Imagine that you are
planning a trip to Italy. You read all the latest travel books, you
consult with friends about what to pack, and you develop an elaborate
itinerary for your glorious trip. The day arrives. You board the plane
and settle in with your in-flight magazine, dreaming of trattorias,
gondola rides and gelato. However, when the plane lands you discover,
much to your surprise, you are not in Italy -- you are in Holland. You
are greatly dismayed at this abrupt and unexpected change in plans. You
rant and rave to the travel agency, but it does no good. You are stuck.
After a while, you tire of fighting and begin to look at what Holland
has to offer. You notice the beautiful tulips, the kindly people in
wooden shoes, the French fries and mayonnaise, and you think, "This
isn't exactly what I planned, but it's not so bad. It's just
different." Having a child with autism is supposed to be like this --
not any worse than having a typical child -- just different.
When I read that, my son was almost three, completely non-verbal and
was hitting me over a hundred times a day. While I appreciated the
intention of the story, I couldn't help but think, "Are they kidding? We
are not in some peaceful countryside dotted with windmills. We are in a
country under siege -- dodging bombs, trying to board overloaded
helicopters, bribing officials -- all the while thinking, 'What happened
to our beautiful life?'"
That was 5 years ago. My son is now 8 and though we have come to accept
that he will always have autism, we no longer feel like citizens of a
battle torn nation. With the help of countless dedicated therapists and
teachers, biological interventions, and an enormously supportive family,
my son has become a fun-loving, affectionate boy with many endearing
qualities and skills. In the process we've created, well, our own
country, with its own unique traditions and customs. It's not a war
zone, but it s still not Holland. Let's call it Schmolland.
In Schmolland, it is perfectly customary to lick walls, rub cold pieces
of metal across your mouth and line up all your toys end to end. You
can show affection by giving a "pointy chin." A "pointy chin " is when
you act like you are going to hug someone and just when you are really
close, you jam your chin into the other person's shoulder. For the
person giving the "pointy chin" this feels really good, for the receiver
not so much, but you get used to it. For citizens of Schmolland, it is
quite normal to repeat lines from videos to express emotion. If you are
sad, you can look downcast and say "Oh Pongo." When mad or anxious, you
might shout, "Snow can't stop me!" or "Duchess, kittens, come on!"
Sometimes, "And now our feature presentation" says it all. In
Schmolland, there's not a lot to do, so our citizens find amusement
wherever they can. Bouncing on the couch for hours, methodically
pulling feathers out of down pillows, and laughing hysterically in bed
at 4:00am, are all traditional Schmutch pastimes.
The hard part about living in our country is dealing with people from
other countries. We try to assimilate ourselves and mimic their
customs, but we aren't always successful. It's perfectly understandable
that an 8-year-old boy from Schmolland would steal a train from a
toddler at the Thomas the Tank Engine Train Table at Barnes and Noble.
But this is clearly not understandable or acceptable in other countries,
and so we must drag our 8-year-old out of the store kicking and
screaming while all the customers look on with stark, pitying stares.
But we ignore these looks and focus on the exit sign because we are a
proud people. Where we live, it is not surprising when an 8-year-old
boy reaches for the fleshy part of a woman's upper torso and says, "Do
we touch boodoo?" We simply say, "No we don't touch boodoo" and go on
about our business. It's a bit more startling in other countries,
however, and can cause all sorts of cross-cultural misunderstandings.
And, though most foreigners can get a drop of water on their pants and
still carry on, this is intolerable to certain citizens in Schmolland,
who insist that the pants must come off no matter where they are, and
regardless of whether another pair of pants are present.
Other families who are affected by autism are familiar and comforting to
us, yet are still separate entities. Together we make up a federation
of countries, kind of like Scandinavia. Like a person from Denmark
talking with a person from Norway, (or in our case someone from
Schmenmark talking with someone from Schmorway), we share enough
similarities in our language and customs to understand each other, but
conversations inevitably highlight the diversity of our traditions. Oh
your child is a runner? Mine won't go to the bathroom without asking
permission. "My child eats paper. Yesterday he ate a whole video box."
"My daughter only eats 4 foods, all of them white." "My son wants to
blow on everyone." "My son can't stand to hear the word no. We can't
use any negatives at all in our house." "We finally had to lock up the
VCR because my son was obsessed with the rewind button."
There is one thing we all agree on: we are a growing population. 10
years ago, 1 in 10,000 children had autism. Today the rate is
approximately 1 in 250. Something is dreadfully wrong. Though the
causes of the increase are still being hotly debated, a number of
parents and professionals believe genetic pre-disposition has collided
with too many environment insults -- toxins, chemicals, anti-biotics,
vaccines -- to create immunological chaos in the nervous systems of
developing children. One medical journalist speculated that these
children are like the proverbial canary in the coal mine, here to alert
us to the growing dangers in our environment. While this is certainly
not a view shared by all in the autism community, it feels true to me.
I hope that researchers discover the magic bullet we all so desperately
crave. And I will never stop investigating new treatments and therapies
that might help my son. But more and more my priorities are shifting
from what could be to what is. I look around at this country my family
has created, with all its unique customs, and it feels like home. For
us, any time spent "nation-building" is time well spent.
AMEN!
