I believe the answer to that question is summed up in the following poem, ..." /> I believe the answer to that question is summed up in the following poem, ..." />

What Does It Mean to Be a Special Needs Parent?

Mother and toddler with toy phoneI 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

© Copyright 2012 GoodTherapy.org. All rights reserved. Permission to publish granted by Andrea Schneider, LCSW, Learning Difficulties Topic Expert Contributor

The preceding article was solely written by the author named above. Any views and opinions expressed are not necessarily shared by GoodTherapy.org. Questions or concerns about the preceding article can be directed to the author or posted as a comment below.

  • Leave a Comment
  • Shelley

    March 27th, 2012 at 12:20 PM

    It might be even harder to be the parent of a child with an invisible disability.
    Everybody looks at your child and thinks that you are doing something wrong because maybe your child does not behave like other kids.
    They blame it on you and think it is due to your lack of parenting skills, yet never stop to think that there could be something else going on below the surface that they are not aware of.

  • Meryll

    March 27th, 2012 at 4:34 PM

    what does it mean to be a special needs parent?
    It means giving up a lot of your time and energy
    It means having other people look at you strangely
    It means having to find a different school for your child, one that will nurture and love him the way you do
    It means spending a lot of your time fighting with insurance companies to get your child the services he needs and deserves
    It means somehow remarkably finding strength in yourself and that child that you never knew would be possible to find

  • Andrea Schneider

    March 27th, 2012 at 9:41 PM

    @Shelly–I think you are on to something…it’s not easy being a special needs parent, any way you slice it…there are challenges with those who have “invisible” disabilities and those with more obvious hurdles…not any easy path…@Meryll–yes, and it means loving like you’ve never loved before — it means living life the fullest you will ever life it (as exhausted as you may be) — and it means transcending the mundane, embracing that which matters, and encircling oneself with support, and LOVE. Motherhood is love…

  • sam h

    March 27th, 2012 at 10:08 PM

    “It hurts us when one of his very challenged friends is made fun of on the playground by another student.”

    Amazing isn’t it-A little child making fun of another because he is a little different..Where do you think this comes from? Was that other student born with such an attitude? No..It’s because his parents haven’t taught him about it and chances are that the same will continue with his kids..This needs to be put a stop to,and it can happen only when each and every person teaches this to his or her kids..Let’s make a start..Talk to your kids about things like these,please.

  • Marge

    March 28th, 2012 at 4:19 AM

    Parenthood is hard no matter the needs of your child. Every child has special needs in that broad sense of the term, and every child has to be handled with TLC.

  • Andrea Schneider

    March 28th, 2012 at 7:55 PM

    @Sam — yes, all good points….teaching compassion and empathy begins with the parents. Indeed. @Marge–yes, parenthood is a challenging journey. One of my son’s teachers said, “We all have something we are dealing with,” which is true…we all learn differently and are unique…it’s hard to conform into the cookie-cutter way of traditional education when the standards are becoming ridiculously high, even for “typical” kids…

  • Frank

    March 28th, 2012 at 11:55 PM

    I dont know where this comes from but 99.9% of all people have this problem with anyone different from the norm..they say things about that person for absolutely no reason and consider them weird..has there ever been a study into why this happens?

  • Andrea

    March 29th, 2012 at 9:08 AM

    @Frank…I am sure there are studies in sociology and perhaps cultural anthropology…but I don’t know specifically…if I find some, I will post…I think it goes back to insecurity and the larger need for acceptance in a group, makes people feel vulnerable, and also begins with the parents/society talking about diversity and the importance of nonjudgmental attitudes at home and in school…

  • Thomas d

    March 29th, 2012 at 3:53 PM

    It is a lot of hard work, I will tell you that for sure!

Leave a Comment

By commenting you acknowledge acceptance of GoodTherapy.org's Terms and Conditions of Use.

* Indicates required field.

GoodTherapy uses cookies to personalize content and ads to provide better services for our users and to analyze our traffic. By continuing to use this site you consent to our cookies.