Welcome to Holland

Below is a poem that has been well circulated in recent years around the children with disabilities circle.  This story has inspired my work with Cami. Holland is known for it's beautiful gardens. Ironically,  Cami is a pure breed "little dutch girl" living on the autism spectrum which is now shown to affect 1 in 68 children.

In quite a few of the images I have included artificial tulips still containing the price tag as a reference to this story. In some scenes the tulips at first appear real in a barren garden. It's all a facade as is the joy that one may put forth on the surface. Underneath is struggle and a price is paid. There are many people who talk about seeing the joy in the situation, and surely one must, however, there is a great deal of stress on the families of those that are struggling with disabilities that is often not seen by the outside.

In doing this work I want to explore difference aspects of autism; fact verses fiction, real verses artificial. In addition the price of former expectations to what the reality of the situation comes with a price. Dreams for your children are crushed and must be readapted to fit reality. Worries, struggles and other things come into play with the fear of a future and an underlying anger and rage beneath the surface of a playful facade and bright happy colors. Extreme mood swings and lots of drama characterize this experience for a young woman so the colors and the sky had to be dramatic. There needs to be a mixture of both darkness and light, happy and sad. Nothing is subtle, all is dramatic.

Cami in some images is appearing to be playing in child like situations. She is a child in an adult's body. Asperger's stalls emotional development. Her emotional age may be that of a 12 year old. Her childlike dress is indicative of the struggle.

In addition, body image issues are addressed - what the expected young woman should look like and the reality of a person who is stress eating to "medicate" oneself against the anxiety that comes with being "out of sync" and not completely comfortable in her skin.  The manikin is the commercialized view of beauty and femininity.

When Cami was a toddler she had a favorite stuffed animal named "Baby". Cami didn't share her goals and desires but spoke through the stuffed animal. "Baby doesn't like that food. Baby doesn't want to go to bed! Baby's favorite song!" On the autistic spectrum people range from high functioning to low functioning. More severe cases of autism rob the person of their ability to express themselves through words. I chose the "ventriloquist dummy" as a metaphor for the inability to express oneself without aid or help. Expressing emotions or expressing oneself appropriately takes a great deal of instruction. I saw a similarity between the doll and those living on the spectrum. Communication tends to be a big issue whether it is learning to discuss instead of scream, speak instead of melt down and probably most important is the different processing of themes and concepts that scramble conversations between those on the autistic spectrum and those with more  "neurotypical" brain functioning. In other words, I say one thing and my child hears something entirely different and usually goes through the roof. I need to learn a whole new way of expressing myself to her literal and sensitive understanding to be able to communicate with her. I understand that the "ventriloquist dummy" comes with other baggage from creepy thrillers, however the metaphor is striking and in truth, this does feel like a horror movie at times.

Cami appears alone in the images as isolation and loneliness is a theme. Friends are scarce and time spent alone is daunting. I chose to include a few images of her father with her because they "get" each other.

Originally I wanted to approach this a a documentary style project. I found it to be increasingly difficult as her daily activities consist of sleeping, eating, going to work and watching TV shows on the computer. Activity is very limited and she has no hobbies or special interests. The images of her messy room show the state of chaos in the disorganization due to "executive function" issues and control issues. I have vascillated between more dramatized tableau images and the real. I'd like to incorporate more articles and information on autism as well as some video.

The challenge is to do this work in a loving manner. As a parent I wish to encourage her and bring out the best in her. People on the spectrum do learn and grow. As she is highly intelligent honor roll student from a private school she is capable of maturing, yet the process is slow and is stunted but her desire to see herself as already grown up and in charge of her life.

I haven't yet decided if I just want to just address her issues in the work or how I view raising a child with disabilities.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reservedI 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.