Emily Perl Kingsley wrote “Welcome to Holland” to explain her experience in raising a child with special needs. Twenty five years have passed since its origin and this piece continues to resonate with parents. Below is the journey of Jasmine and Maurice as they navigate through the ups and downs that accompany raising a child with autism.
“When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks 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.”
Jasmine and Maurice descended into Holland two years into their son Rece’s life. This new destination was not a complete surprise; for months they had been monitoring his changing behavior. They knew something was different but were unable to pinpoint what was going on. This was until Maurice’s mother mentioned autism as being a possible explanation to Rece’s erratic behavior. After doing research on the topic they realized a majority of Rece’s symptoms were consistent with children on the autism spectrum. They then scheduled a doctor’s appointment and after months of screening, their assumptions were confirmed. Rece was diagnosed with autism.
“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.”
Caring for a child on the autism spectrum is not an easy feat, but Jasmine and Maurice find a way to make it work. Rece’s diagnosis made them diligent in discovering the best services for him. Their growing support system consists of family, friends, church members, teachers, and various therapists (e.g., occupational, speech, physical, behavioral). This outstanding team continues to produce noticeable changes in Rece’s behavior. His communication has improved and he can accomplish certain physical tasks with more ease. Rece is also increasingly social and has a stronger desire to be independent. Caring for Rece can be difficult at times, but there are many positive aspects as well. Rece draws people in with his good looks and happy demeanor. He is affectionate and has the ability to brighten up the darkest situations.
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.
Jasmine and Maurice do an excellent job staying positive but there are still times when they can become overwhelmed. Even with all of the support they receive, they are still left to mourn the loss of what could have been. Other children serve as constant sources of comparison. Fears and questions about Rece’s functionality float in the air looking for absent resolutions. Will he be able to be truly independent? Will he ever be able to really communicate his thoughts, feelings, and desires? Will he be an outcast among his peers? Will they ever make it to Italy?
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.
For now, Maurice and Jasmine will not get all of their questions answered. While this is a big concern for them, they do not allow themselves to be consumed.They remain dedicated to appreciating Rece. When asked if they could offer up advice to any other couples in their predicament, they offered up three tips: advocate for your child, be open to sharing your experience, and be patient. Jasmine, Maurice, and Rece are all on a unique journey together. They may not be in Italy but Rece has given them access to an equally wonderful place.
* italicized words are excerpts from Welcome to Holland.
This Topic of the Week was written by Malyka Cardwell, MFT and originally posted on 9/25/13.