Compassionate Support for Families Navigating Autism
When I was in college preparing to be a Special Education Teacher, I was given the poem below by one of my supervising teachers. It is a poem I have read multiple times throughout my career and often try to think about when I work with families, especially those who have recently received a diagnosis of Autism for their child.
Before our children are born, we spend countless hours thinking about who they will grow up to be and how they’ll make the world a better place. When they are born, we are exhausted, but one look into those eyes and you know that you love them with every fiber of your being. You know without a doubt that you would do everything in your power to keep them shielded from anything that makes their life harder. Then…you receive a diagnosis of Autism. Given its rising prevalence, you may know nothing at all, a little, or a lot about the diagnosis, but what you do not know is what it means for you, your child, and their future. For some parents and families, that shatters their whole world, and it is okay. Everyone ends up grieving their trip to Rome in their own way and everyone makes it to Holland in their own time.
There is a quote made by Dr. Stephen Shore, “If you’ve met one person with Autism, you’ve met one person with Autism.” I cannot express how true this statement is. Over the last 16 years (and many before my professional career), I have worked with over 100 individuals diagnosed with Autism and not one has been like another. Sure, they may embody the same characteristics, but every single child, preteen, teenager, and adult has presented in a completely different way. Each way is unique, and each way is beautiful, like Holland.
A diagnosis can be difficult in so many ways, but it is just that… a diagnosis. As parents we realize our children are so resilient and capable of more than we ever imagined possible. There are absolutely going to be tough days and uphill battles, but one of the things I have learned is to stop, look, and appreciate even the smallest step or approximation. It’s not easy sometimes, but if you can just pause for a moment and think about how hard our children are working at each incremental step, you’ll begin to see the beauty, resilience, and amazing person that each child is and is becoming.
No matter when you received the diagnosis (i.e., three years ago, 6 months ago, or yesterday) or where you are on your journey, you have got a growing community of people who understand what you’re going through and are there to help. You have resources that you can seek out, even if you don’t know which ones you need. You have a network of people who are highly trained in Applied Behavior Analysis (ABA) that can help you answer your questions, but most of all, you have one spectacularly amazing child that you will journey through life with, and their story will be their own.
Here at Compassionate Behaviors, LLC we are here to help, in any way that we can! Call us at (203) 927-4013 if you have a quick question about Autism or if you’re looking for more resources for yourself or a friend. We offer center-based, in-home, and community-based ABA services, parent consultation, and social skills groups through your insurance company or private pay. We also offer behavior-based independent school evaluations or consultation.
Welcome To Holland
by Emily Perl Kingsley
Copyright©1987 by Emily Perl Kingsley
All rights reserved.
Reprinted by permission of the author
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 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 flight attendant 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.
