What Does It Mean to Be a Special Needs Parent?

I believe the answer to that question is summed up in the following poem, “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 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. 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. 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 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.

–Emily Perl Kingsley, 1987

I get the chills every time I read Emily Perl Kingsley’s poem. Because she’s right on. I am blessed to be the mother of two wonderful, beautiful boys, one of whom has an “invisible disability.” An invisible disability is one that is not obvious by physical observation but might be detected to the layperson via behavior or learning challenges. Examples of such challenges include attention deficit disorder, sensory processing challenges, speech impediments, and learning disabilities, to name just a few.

As a mother of a special needs child and as a therapist, I feel it is essential to de-stigmatize the challenges our children face with invisible disabilities and those that are more obvious. These differences are frequently met with judgments and assumptions, and we owe it to the new generation to start treating all people with dignity and respect. That begins on the playground in kindergarten, and that begins with parents teaching their children to respect others’ differences.

Both of my sweet boys are the best gifts I have ever received in this life. My 6-year-old has also brought us the gift of understanding sensory processing disorder. He was first diagnosed with this challenge at 3 years old after showing activity levels that made us wonder about attention deficit disorder. Through an incredible school team composed of school psychologist, speech therapist, special education teachers, and occupational therapists, my littlest love has emerged as a blossoming child. We are fortunate to have such support in place, and we are reassured that our Graham will go on to have a fulfilling life.

This journey continues, and it hasn’t always been easy. At times, being a special needs parent has been incredibly stressful and exhausting. Although fortunate to have an amazing school team helping Graham to grow in confidence and ability, we know there are some challenges ahead in terms of processing learning. Graham is highly intelligent, in fact way above average, and yet he processes information differently than a “typical” child. We are learning what that looks like and arranging the necessary supports so that he continues to love learning and feel accepted for his own way of interpreting the world.

We are also aware that some friends have encountered more difficult challenges as their children have much more debilitating and severe disabilities. I am humbled and blessed to know some of those amazingly resilient parents who have come to know Emily Perl Kingsley’s Holland. They are truly embracing the tulips and have often times given me a bouquet of those colorful, sweetly scented blooms.

I straddle the world of pasta and the world of tulips, because Graham is in both worlds. It hurts us when one of his very challenged friends is made fun of on the playground by another student. We talk about how everyone is different and how it’s important to not judge a book by its cover. Graham has learned that lesson at age 6. Some adults are well into their twilight years and have never learned that lesson. And they certainly aren’t teaching their children how to embrace differences in people. Doesn’t diversity make the world go round? Yes it does, indeed.

I am well aware of how fortunate my family is to have the support and services we have to enable Graham to blossom to his greatest potential. In my private practice, I am also well aware that special needs parents are extremely stressed people who need and deserve support. They are incredibly at risk for depression and anxiety, and a high percentage of special needs parents divorce. Siblings of special needs children are also at risk for depression and anxiety. This is a population of folks who need family therapy and social support. Such interventions prevent depression and anxiety from manifesting and also alleviate stress.

See below for helpful resources for special needs parents:

• Uniquelygifted.org: Resources for gifted children with special needs
• Specialneedsalliance.org
• Spdfoundation.net: For information on sensory processing disorder
• Sensoryplanet.com: Great resource for kids with sensory challenges
• Oneplaceforspecialneeds.com: Back-to-school guide for special needs families

Singer, J. L. (2012). The Special needs parent handbook: Critical strategies and practical advice to help you survive and thrive. Tenafly, NJ: Clinton + Valley Publishing.

Winter, J. (2006). Breakthrough parenting for children with special needs: Raising the bar of expectations. San Francisco, CA: Jossey-Bass.

Baskin, A., & Fawcett, H. (2006). More than a mom: Living a full and balanced life when your child has special needs. Bethesda, MD: Woodbine House.

Gallagher, G., & Konjoian, P. (2010). Shut up about your perfect kid: A survival guide for ordinary parents of special children. New York: Three Rivers Press.

Marshak, L., & Prezant, F. P. (2007). Married with special needs children: A couple’s guide to keeping connected. Bethesda, MD: Woodbine House.

Related articles:
The Art of Comforting: How to Help
The Art of Comforting: Three Examples of What NOT to Do
Support for Special Needs Parents and Families with Young Children

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