Holland Schmolland
by Laura Kreuger Crawford
If you have a special needs child, 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 awhile, you tire of fighting and begin to look at what
Holland has to offer. You notice the beautiful tulips, the kindly
people in the wooden shoes, the french fries with mayonnaise, and you
think, "This isn't exactly what I had planned, but it's not so bad.
It's just different."
Having a child with special needs is supposed to be like this -- not
any worse than having a typical child -- just different.
When I read this my son was almost 3, completely non-verbal and was
hitting me over 100 times a day. While I appreciated the intention of
the story, I couldn't help but think, "Are they kidding? We're not in
some peaceful country dotted with windmills. We are in a country
under siege -- dodging bombs, boarding overloaded helicopters,
bribing officials -- all the while thinking, "What happened to our
beautiful life?"
That was five 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's 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 4:00 a.m. are all traditional Schmutch
pastimes.
The hard part of 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 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, all the customers looking 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 do not 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 is present.
Other families who have special needs children 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 to a person from Norway (or in our case, someone
from Schmenmark talking to 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. "My child eats paper. Yesterday he ate a whole video
box." "My daughter only eats four foods, all of them white." "We
finally had to lock up the VCR because my child was obsessed with the
rewind button." "My son wants to blow on everyone."
There is one thing we all agree on. We are a growing population. Ten
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 predisposition has collided
with too many environmental insults -- toxins, chemicals,
antibiotics, vaccines -- to create immunological chaos in the nervous
system of developing children. One medical journalist speculated
these children are 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 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.
Poussière de fée! (Only that works, so far, in the Schmanada I know!)
My son is beautiful and I love him so much, but he's getting hard to care for. He sits on me daily(and he's 120-lbs, 5'9"). He does the "pointy chin" and the cheek bite(for kisses.) He hugs my neck so hard I almost pass out. He drools and wipes his nose on me--all my shirts and coats have large white slobber areas on the shoulder. 
Minky. I hear you!
Doin' the happy dance. We took the camper out to the lake yesterday afternoon and took Christian with us, just for the night. Twelve hours is just about enough time for me to realize that we can't really camp with Christian much anymore. It's just very labor-intensive. Plus, everything in his bed was saturated with urine this morning. Three blankets, sheets, his jammies, his pillow, even his socks! Ugh. I couldn't get him to the respite house quick enough. I know that a lot of people would think I'm horrible for feeling that way, but I know that the people here who are dealing with similar stuff will not hold it against me. 
. Really?! 
