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Exceptional children are whole people

May 17, 2002|BY JoEllen Barnhart

By JoEllen Barnhart

One child in 700 is born with a cleft. It is the fourth most common birth defect, and the first most common facial birth defect. And yet so many parents and children affected by this condition feel so alone.

My son Andrew is one of the 700 children born with a cleft in 1992. He is approaching his 10th birthday and has become very aware of his uniqueness.

Several days ago Andrew asked me if I would connect him with another boy the same age who shared the same condition. The signal he sent me was loud and clear. Essentially, Andrew was saying to me, "I feel alone and I want to talk about it with someone who knows about clefting first hand."

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Our children who are cleft-affected face life with a few more challenges than most other children. To meet those challenges, they need a few extra tools.

And so the search for a cleft-affected pen pal to connect with my son began. The search began with the Internet. Organizations like Smiles, Cleftline and others provided some direction but the search concluded in Dover, N.J. at the Children's Hopes and Dream Foundation.

The Pen Pal program created by Hopes and Dreams pulls from a database of more than 12,000 young people with chronic and terminal illnesses.

But these special children need more than a pen pal program in life's tool box. Psychological research outlined by Wide Smiles, a cleft support organization, shows they need:

Information. They need to be given information about themselves and their condition in a form they can understand.

Communication. A child may fail to communicate a feeling or ailment because they don't know how to label it. Parents and adults also need to take the time to recognize verbal and non-verbal signals from a child that may be an expression of hurt.

Trust and validation. Every child, but particularly a special needs child, should have someone in his life he can trust with his feelings and insecurities. Sometimes the hardest thing to do is to listen to our children and recognize their perspective.

Outlet. Our children need an outlet to release their unspent fear and anger, which are energy generators.

Advocacy. Our children need to know their rights and responsiblilities. They also need reassurance that others walk beside them.

Positive self-awareness. Most people can point out what is wrong with them, but how many of us feel comfortable identifying what is right? Our kids need to be able to counteract the negatives with known positives. We need to help our kids find their strengths - not tell them their strengths.

Support system/love. The knowledge that someone loves and accepts you through it all makes you realize that you are worth loving.

A model of expression. Facts are one thing, but expression of emotion is another. Parents have the responsibility to open up to their children. When you are scared, express that. When they are scared, encourage them to express it. Be on the lookout. If you don't open to it now, your children will face it later, often when they are on their own.

Control. Regardless of a child's developmental level, she should be allowed to exercise appropriate control in her situation. Involving our children in the decision-making process gives them the tool of control.

Realistic expectations. Children need to know exactly what to expect and what not to expect from each procedure. Surgery leaves scars - always. The child is born with a cleft, and later has a repaired cleft. It's not perfect, but it's completely acceptable. An expectation of perfection sets our children up for a sense of failure. One of the soundest tools in a child's work box would be realistic expectations.

Attitude. A positive attitude begets a positive attitude. And that, in turn, helps to ensure the best possible outcome. Negativism is a child's greatest foe, and a positive attitude is his greatest ally. Expect the best, and something good is likely to happen. They neither won the lottery, nor did they draw the black dot. They simply were born with a condition that requires extra attention.

Common experience. Knowing at least one other person who faces the same issues you face helps tremendously. You know you are not alone. Parents must seek out ways of making sure their child knows somebody else who has a similar situation.

Permission. Our kids must have permission to feel what they feel - to express what is really going on inside of them, and not what they believe we want them to say. Teaching our children to "be calm, be still, be placid" is teaching them to bury their fears. And fears have a way of rising from the dead to be even more fearful later on.

Holism. A child is more than the sum of her/his body parts, and all of his/her parts are connected into one body/mind/spirit. Communicating this respectful attitude to all individuals who will come in contact with the child - from anesthesiologist to surgical team to recovery room nurse - is essential. They must understand that they are dealing with a whole little spiritual being in human form - not just body parts - and that they must behave accordingly.

As parents we share the struggle of our exceptional children. Together we feel the pain, the joy and the triumph of watching them grow. Their challenges may be difficult and many, but when we face them together, we learn from each other and ultimately find and recognize a beauty within all of us.

JoEllen Barnhart is assistant to the director for Frostburg State University's Hagerstown Center. She has three sons.

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