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About using this material... I realize that once this is posted on the web, it becomes available for others to use. As a courtesy, I ask that you give me my due credit by leaving my name and copyright info on all pieces. It may be used as a free hand-out for parents or professionals but may NOT be used in any publication that anyone (especially parents) has to pay for. If you would email me to tell me how it is being used, it would be appreciated. Thanks! and I hope you enjoy the site. Pat
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This is the tale of my adventures raising two "atypical" children. This is a story of survival, victory, and what all parents need to know by a parent and professional advocate. I’ve long felt that there should be some type of record of my life since my children arrived on the scene over sixteen years ago. I may have thought my life had its bad points before then, but my two "inspirations" have taken me on journeys to the depths of despair, as well as to some of the most joyous, wonderful places a person could go to. I also feel there needs to be a book about how parents advocate for their kids. When you hear parents of kids with disabilities say that their children are blessings, it’s not just an idle remark. They truly teach us lessons we would never have learned otherwise. They teach us all about those things like humility and the things in life that are really important. They remind us that we are pitifully human and not able to be in control of our lives. They teach us to rise above the pettiness of the world and that we can accomplish feats we never would have thought possible. But enough of that! This book isn’t just about all that stuff. It’s also about surviving. Its about finding the humor amidst the absurdity of our lives. True, there are times in the lives of parents who have children with exceptional needs, when tears are the only possible outlet for our emotions. After the tears, as I’ve read countless times, (so it must be true) comes the grieving process. I believe in grief. It does happen. But it's so much more than that! Grief may be the trigger for all those other emotions like anger and denial. I don’t think that all our anger and denial stem from our children's disabilities. Much of it comes from the reactions of society to us and our children. Maybe we wouldn’t notice it so much, except that from our view of the situation, we see things in a different light. "Our view of life comes from where were sitting in the bleachers." (One of my favorite sayings, as you’ll find out.) I don’t think that we parents have tunnel vision and can only see things from our viewpoint. I think we see way too much, and that’s why the absurdity of all the other people becomes so apparent. My children can, and have, compensated, and in some cases, overcome their disabilities. They’re not the bad guys here. They’re the heroes. People put up needless barriers for our children to overcome, in addition to those their bodies and minds have imposed on them. Were these people not so stupid, there would be no absurdity. Well, maybe stupid is a rather crude word. Uninformed might be a better word. But, I’m getting off track here. This book is meant to be what I call a good "bathroom book." You can pick it up, read a random chapter, then put it down again until the next time. Hopefully, after reading a chapter, you’ll go away with a bit more understanding about a situation you might have encountered in your life. I hope that you might perhaps even begin to be able to see the humor in life. If you happen to shed a few tears, just remember that if it's true that eyes are the windows to our souls, then tears are what can make the windows clean. Stats on the girls Kimberly Sue
In foster care from birth until November 1986. When we adopted Kim at 16 ½ months, she didn’t walk, talk, or hold her own bottle. My husband and I had tried to have a child of our own for many years and finally decided to adopt. Kim was the first child we actually “saw” and it was love at first sight. She progressed a great deal after she came to live at our home, but it was soon evident that she was a “wild child” with some pretty severe behaviors. She threw tantrums, ate glass, destroyed everything of sentimental value I owned, refused to be potty trained and ran off every chance she got, to name just a few of her behaviors. Kimberly received Early Intervention Services (services for children 0-3 with developmental delays or disabilities) until she was three years old. She attended preschool at the local MR/DD (Board of Mental Retardation and Developmental Disabilities) in our county until she was five and a half. We then moved her to her local school district, where she was in Kindergarten for a year and a half. Kim’s first grade year was spent in a self-contained classroom. When she began second grade, inclusion was the thing and she was one of the first children with delays to be part of a regular class. This has continued over the years, with all involved learning how to best serve her. Over the years, Kim has had several diagnoses; Attention Deficit Disorder, Attention Deficit Disorder with Hyperactivity, Mental Retardation and finally, Autism. It wasn’t until we received the diagnosis of autism that we were truly able to help Kim. At this point, she is a very successful little girl with a much better future than any of us could have imagined ten years ago. Krystal Leighann Krystal was conceived two months after we adopted Kimberly. She didn’t want to miss Kim’s second birthday, so she was born about three months early. She spent the first six months of her life in Children’s Hospital in Columbus, Ohio. Krystal had to have a patent ductus operation to close a valve that normally closes in full term pregnancies, a Ventricular shunt to keep fluid from accumulating in her head, cryotherapy to try to halt the progress of her retinas detaching and a crycoid split to enlarge her airway, due to the accumulation of scar tissue in her airway caused by the ventilator that had kept her alive. She finally came home in December of 1987 with an apnea monitor to alert us if she quit breathing, oxygen and assorted medicines. She was also blind. As if all this wasn’t enough for one little girl, she developed a seizure disorder right after she turned three. Krystal also received Early Intervention services and preschool services for children with disabilities. She attended Kindergarten 3 days a week at a special school for visually impaired children about 25 miles from us. She attended her home school on the other two days. When she started first grade, it was at her home school. Krystal is now sixteen years old. She takes ballet and gymnastics, is the treasurer of her 4-H club, has won several art awards and is a very bright little girl.
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Pat Linkhorn, 2001