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One Miracle at a Time: Getting Help for a Child with a Disability.

You have the right to believe in miracles and to make them happen, just as these other parents do, each in a different way:

* We are just thankful our daughter is with us now. She could have given up at birth, but she's a real fighter, and she's going to try her hardest to fight her disability and be as normal a child as she can possibly be. All I can say to any parent is, please never give up hope for your child.

* We would hope to say "Hang in there" to any parents who are discouraged. A handicap, after all, means only that things will be harder, but not impossible to do. Never give up, and never allow your child to give up.

* The week of January 15 my five-year-old son Jason said his first complete sentence. It was, "Mama, pretty lights on the wall." I still have some Christmas lights up in my house; maybe they will be up for a whole year, especially now. Just when you reach the end of your rope, they will do something like this to you.

* I think it is important to take one step at a time ... I would say to take each day as it comes ... Take one day at a time! And when times get real tough, make it through hour by hour! There are plenty of good times to make you forget the bad ... Don't worry about ten or twenty years from now, and what will happen to your child then ... Try to deal with today, and not look too far into the future.

* You'll learn not to take anything for granted. The smallest accomplishments for a normal child can be major steps for yours ... I feel the one thing we have really learned is to appreciate the small things in life that we took for granted with our son: Christina's first step at age two, her first jump at age three years and nine months. There are many many more.

* When some doctors are pessimistic and make statements like "Your child will never speak or walk," we ignore them. If you listened to all that negative talk, what would be the use of trying?

We don't live in a dream world or believe Timmy will be "normal" one day, but we have to help him do as much as possible. He wasn't supposed to speak, but he can say "dada," "hi!" and "mama." And therapists have told us he will probably walk some day.

* Never let anyone make sweeping predictions about your child's future. He or she may never turn out "normal," but if you're willing to work real hard, anything is fixable. Your goal may have to be 100 percent effort for 2 percent progress, but it will pay off. Do your homework and then go for it.

* If you believe in your child and help in his or her struggle, you will get some kind of reward. Even that might be just three seconds standing alone ... Never believe anyone who says your child will never walk, talk, go to school, and so forth. Don't give up hope, even though it is sometimes hard, hard, hard ... Tough times never last. Tough people do.

* We were told that our daughter was brain-damaged and were advised not to search for help such as therapy, etc.; that she would only progress on her own. She cried about fifteen hours a day, disrupted our family life for two years -- mother in mourning. Institutionalization was suggested at three months and again at eight months. We rejected the idea, because she was our child. Instead we set up an exercise program ourselves and discovered she was very bright and vocal. She is nine now, and in regular classes, with special education services.

What would I tell parents? To arm yourself with information, to live one day at a time, and to believe in miracles.

The one right that distinguishes you, and bonds you to others like you, like all these other parents of children with disabilities, is the right not to give up. The right never to give up: the right to believe in miracles, great and small, and the right to make them happen if you can.

* I do my best to live in the present. The past is gone, and so be it. The biggest problem is that relatives and some others are always expecting a great miracle: that Chris will walk and talk. This drives me up a wall. Chris has so many miracles that don't seem to count for them. He is alive, he communicates, he eats and enjoys it, he loves and hugs and kisses, and he laughs and smiles and is happy.

He has so much to give. He has so much love, so much personality. I tune in to him. I listen with my ears, eyes, head, and heart. When he cries, I tune in and am able to understand. He is terrific and I tell him so. That's what life is about: coping and making the best out of life we have. My son is doing that.

I don't need him to walk and talk, but I absolutely have to have him smile and give me a kiss. He does! We have had a different kind of miracle.
COPYRIGHT 1993 EP Global Communications, Inc.
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 1993 Gale, Cengage Learning. All rights reserved.

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Title Annotation:book excerpt
Author:Dickman, Irving R.; Gordon, Sol
Publication:The Exceptional Parent
Article Type:Excerpt
Date:Feb 1, 1993
Words:885
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