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Loving someone with autism will expand your world

Today is the 12th Annual World Autism Awareness Day, a label and diagnosis that is now applied to 1 in 58 children in the United States. Millions of families worldwide have had the experience of changing their parenting goals after an autism diagnosis. They are learning about assistive technologies (this year’s emphasis) which helps nonverbal and communication disabled people communicate their needs. 

If you’re one of these parents you may have coped with grieving the loss of your original dreams about what building a family would be like. With the right community support and advocacy, through World Autism Awareness Day, you can find yourself deciding you don’t want to change this journey.  This very journey can change you in profound and meaningful ways. It can bring into focus even more clearly the purpose of your life.

This perspective can be applied to many relationships, though, not just families who have a child with autism. In raising any human being, you may encounter any number of problems. If you find the right community for your family, then something that might seem like a problem could actually be the solution. Sometimes, the solutions to one problem can be the solution to many problems in your relationships with yourself and other people.

Labels Are Limiting

A diagnosis can explain things, but that label is limiting in many ways. Who can really tell ahead of time what the experience of parenting or living as a human being will be like? Technology can let you know the gender of a baby, and sometimes it can inform you of a health issue in the womb. But technology and medicine can’t tell you this individual’s personality or forecast her or his future.

So parents and children are then thrown into a relationship that unfolds day by day and is influenced by a number of factors. Some factors are in the home environment, and some factors are randomly and possibly senselessly thrust upon a family. It is my hope that every child’s home environment is a secure place for them, but this is not always the case.  If you suspect a child is being abused either in the home or any other environment, I hope you will do the right thing and report it to the proper authorities in your area.

Your family experience is unique

Barring any major abusive dysfunction of you as the parent, the life in a family is uniquely yours and your children’s. Suffice it to say, that regardless of whether or not your child or you have an identifiable health disability,  you will encounter obstacles along the way in the form of

  • school,
  • work,
  • finances and
  • outside relationships.

You can overcome your challenges

Illustration of child flying on a paper airplanePart of the human experience common to us all is to overcome challenges in whatever form they take. It depends on how you define things that will determine how you view it. The nervous system releases the same chemicals whether you are anxious or excited. But your perception of an event will determine whether you are excited or anxious. Amy Schumer and her husband, Chris, just prior to World Autism Awareness Day publicly revealed his autism diagnosis, stating “it’s been totally positive.” 

The poem “Welcome to Holland” was written by Emily Perl Kingsley, a writer for Sesame Street. Her son, Jason Kingsley, was born with Down’s Syndrome. He is now a grown man  and has appeared in several movies. Kingsley’s experience as a parent with a child with a known disability inspired her to advocate for families whose children had disabilities. She influenced Sesame Street to have the Muppets represent the range of human experiences people have. Sesame Street recently introduced us to Julia, the first Muppet with autism.

Kingsley also took her writing gift and used it to educate and inspire thousands of people. Her poem “Welcome to Holland” has been adapted for many different experiences, parenting and otherwise. Regardless of whether you are a parent or you are someone who doesn’t have children, you have likely experienced an unexpected change in your plans you’ve needed to work through.

So, welcome to Holland or Iowa or Texas or Montana or wherever you find yourself that you didn’t plan on being. Here’s to “blooming where you’re planted.”

Welcome to Holland

BY EMILY PERL KINGSLEY

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 guidebooks and make 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 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 guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you never would 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 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 go to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.

***

©1987 BY EMILY PERL KINGSLEY.
ALL RIGHTS RESERVED.

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Categories: Advocacy, Families, Relationships, Special Needs, Uncategorized

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