Section 2: Family Life
14 Welcome to Holland & Holland Schmolland
Each parent or caregiver may experience a different reaction after their child receives ASD diagnosis. Furthermore, each parent or caregiver is entitled to react and adjust very differently. Individual reactions and adjustment to the diagnosis are a result of the journey that led to the ASD diagnosis. Some parents have waited for a long time to know the source of challenges that impact their child while others are new to the prospect of their child having difficulties. To reflect the differences in perspectives and reactions parents or caregivers may have when their child has been diagnosed with ASD, the following two excerpts are included. You may find that you relate more to one or the other, a combination of the two, or neither. It is important to realize that your reaction is personal. When grieving the diagnosis, this too is very personal and the specific reactions one may have will vary though the general stages of grief are often very similar (see “Reacting to a Diagnosis”).
Welcome to Holland
“I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.”
By Emily Perl Kingsley, 1987; reprinted with permission.
Holland Schmolland
“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 magazines, 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 five years ago. My son is now eight 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 4:00 a.m., 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 is 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 eats only 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 110.
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 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. “
By Laura Krueger Crawford , 2003 ; reprinted with permission.