A Different Lens: A Unique Cerebral Palsy Perspective

As a social worker in the NICU, people often question my career choice. “How do you do that every day?  How do you work with parents of sick children?
How do you know what to say and how to help them? How can you handle being surrounded by such sadness and heartache, day after day?”
I’ve been working as a social worker in the Neo Natal Intensive Care Unit (NICU) at CHOC Children’s for 16 years and I can’t imagine doing anything else. My answer to those questions is quite simple.  I see hope. I see amazing tenacity and perseverance. I see shattered dreams, reformed into new opportunities.  While the news that parents receive in the NICU is often hard to hear, there is one thing that makes a difference.  Perspective.  Perspective is what allows me to continue to do this gut wrenching work every day.  It forces me to count my own blessings and affords me the opportunity to work with others less fortunate.

When working with parents of children who will have special needs, I often refer to one of my favorite passages, “Welcome to Holland”, by Emily Perl Kingsley.  I have included it here because I believe it perfectly describes the experience of receiving a life changing diagnosis for your child and the ways that the diagnosis will, no doubt, change the lives of the entire family.

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.

It truly is all about perspective.  I hope that you will allow the supportive community of CCPM to become a part of your family, and together, we will change the perspective for all families of children with special needs.

About the author:

DANA SPERLING, LCSW

Dana Sperling earned a Masters Degree in Social Work from Cal State University- Long Beach and a Bachelors Degree in Psychology from Kent State University. She has worked as a Licensed Clinical Social Worker in the NICU at CHOC Children’s Hospital in Orange for over 15 years. During that time, she has coordinated an extensive bereavement support group to assist families hospital-wide.

Dana has developed a large network of professional connections that will be a very valuable asset to the Board. She looks forward to bringing her experience to the Board and will be instrumental in helping to build Children’s Cerebral Palsy Movement’s community-based family support programming.