Raising a “Special Needs” Child
Many people enjoy the thrills of a roller coaster. The upward climb is often proceeded by a plummeting drop with the addition of a sharp curve. A wavering straight path that may allow one time to catch his or her breath, but then its followed by another round of the up and down flow of the ride. It’s generally hard to predict how long each twist, turn, or straight line will last, as well as how fast it’s going to go.
There are many places that offer this adrenaline producing experience. However, some people find themselves on this type of ride without even stepping foot into an amusement park or carnival. One may find himself on an emotional roller coaster. The ride can be exciting at times, but its unpredictable highs and lows can be stressful. Parents of those with a disability or special needs often experience a continuous emotional roller coaster ride. It often becomes such an up and down, curvy-turvy ride because of the loss experienced which tends to be mixed in with joy. When one thinks of grief it is usually associated with loss as a result of death. However, there are many other types of loss that one may grieve, especially when their loved one has a disability or special need. When the highs and lows become too frequent and there are not enough breaks in between to catch one’s breath, grief can intensify. Grief often looks like depression. Fatigue, lack of motivation, tearfulness, withdrawing from others, eating disturbances, sleep disturbances, irritability, loneliness or many other symptoms can all be associated with grief.
A friend of mine, who is a mother to a child with cerebral palsy, recently started a local support group to assist those families who are currently coping with the complexities of having a family member with a disability or special need. I found this article and asked her to share her response to the description of the experience. The author doesn’t use a roller coaster ride to describe her experience, but provides a great comparison to help others attempt to understand the uniqueness of the grief.
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! 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 guidebooks. 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, 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.” (1987, Kingsley).
And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free enjoy the very special, the very lovely things about Holland. (1987, Kingsley).
My friend relates, “Well, I can say it took me about three times before I could read all the way through without crying! It’s amazing how well she did trying to explain to someone that is not raising a Special Needs Child of their own, how those of us that are, the differences that each and every day bring us. And yes, it is a continuous grieving state, because just as soon as I get done grieving over one situation, it seems another comes up. BUT with all the grief of having life being different for not only you, but for your child, there are so many wonderful times. My baby is going to be three in a few months, but she still cuddles and loves like a newborn baby. She continues to learn in her own way. She may not be able to walk right up to a flower and pick it for me, and say I love you momma, BUT she can smile at me, and touch my face and not be in a rush to move on and go play with something different. It’s almost like her life is slowed down to milliseconds with me. Everything is much slower pace with her, and that reminds me from day-to-day, that these are the moments I need to cherish! And for every grief moment, comes a moment that is much more precious and that is what I try to hold onto.”
When one finds himself on an emotional roller coaster, it can be helpful to find support from someone buckled into the same ride or a similar one. Parents of children with special needs may have difficulty coping with the intensity of the ride at times and can benefit from the support of those who can relate. While one family may be coasting on their emotional rollercoaster, other parents may be an uphill climb. Sharing with others may help one prepare for the ride’s next twist or turn. If you’re interested in attending a local support group for parents and families of children with special needs, the following has been planned. For more information about the group, contact Erin Trausch 402-519-1885.
January 9th: Parent Support Group…Head Start Building Hastings NE from 7-9 pm.
February: there will be a children’s play group. The time and place is to be announced.
March: Parent Support Group. The time and place is to be announced
Kingley, E.P. (1987) http://www.our-kids.org/Archives/holland.html. Retrieved November 15, 2011, from Welcome to Holland.
Tags: Raising a Special Needs Child
ABOUT THE AUTHOR
Licensed Independent Clinical Social Worker
Licensed Independent Mental Health Practitioner
- Jody Johnson, LICSW, LIMHP, began working at Wholeness Healing Center as a therapist in 2007. Jody graduated from the University of Nebraska at Omaha with her Masters in Social Work. She received her bachelor degree in Social Work from the University of Nebraska at Kearney.
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