My niece's daughter, Kennedy Jaye, was born with a rare developmental disorder called Angelman Syndrome. Angelman's is caused by the deletion or inactivation of critical genes of the 15th chromosome. Characteristically, those who have this disorder have delayed intelligence and development, seizures, an unstable jerky gait (if they ever walk), hand flapping movements and moments of frequent laughter and smiling. They are generally happy individuals.
Kennedy was born in 1997 amid the usual fuss and flurry of any expected new life. Shortly after her birth, it was apparent that something was wrong. She didn't seem to be developing normally. After many tests, she was initially misdiagnosed with cerebral palsy but it was still apparent to us that something more was wrong. Her mother went on a quest to get the best doctors and specialist to perform as many tests as they could so that we all would know what we were dealing with and how to deal with it. Eventually, a couple of these specialists agreed - it was Angelman Syndrome. It took us a while to even figure out what that was and we didn't have time to stop and feel sorry for Kennedy or ourselves. These things happen.
Kennedy herself took no time to feel sorry. She has spent the last 10 years getting into the hearts of everyone who comes in contact with her. Starting school, always a scary time for parents more so than children, was a real obstacle. She is extremely sensitive to heat and humidity and prolonged exposure to either can bring on her seizures. Not all of the schools here in Kenosha are air conditioned so there was a brief fight with the school districts in town to get her into one that was. Turned out, she ended up at the best possible school for her. The other kids in her class love her and all want to be Kennedy's special helper each day. Every parent of a special needs child worries that their child will not have friends, that they will be singled out in the classroom and never know what it means to socialize. Not so with Kennedy! Since starting school she has been invited to her classmates homes for parties and get togethers just like everyone else in the class.
Weak back and hip muscles combined with scoliosis make it very difficult for her to walk. She must have assistance at all times. To gain some strength and to learn to sit up, she started going to Equine Therapy. The gait of a horse is identical to that of a human being. Research shows that for those who have weakened back, hip or lower torso muscles can show marked improvement by riding a horse! It really is amazing but it works! In order to keep Kennedy from listing forward as she was prone to do, the therapist had her ride the horse seated backwards. Of course, she does not ride unattended. Two "helper" walk along side the gentle mount to make sure she stays put. Because she wanted to reach the horses head, riding backward forced her to sit upright which did wonders for her back and posture. Now she sits bolt upright, on horse or off. A few weeks ago, they had a horse show at the stable where she rides. She won 1st Place for Best Posture! I know that seems like a small thing, but for a kid who sat bowed over like the letter C since the time she first was able to sit, that award was awesome!
Angelman's used to be called "the laughing puppet syndrome". That's because one of the characteristics of the disorder is bouts of uncontrollable laughter to the point of tears. She does this once in a while - starts laughing in a way that makes you think she is just happy but her wide eyes and tear stained cheeks let you know that she is in distress. It's heartbreaking that the sound of a child's laughter doesn't always mean happiness. Kennedy cannot speak and so cannot tell us what is bothering her. We have to guess and when we can't guess it is the most frustrating thing in the world.
After she was born and we found out what was wrong with her, I think that silently each one of us asked how this could have happened and why. But now, there isn't a person in our family that would choose to not have this angel in our family. She's the most loving, caring, sweet child in the world. When she hugs you, you KNOW you are LOVED! When she pulls your face close to hers to give you a big, sloppy kiss on the cheek or just to coo in your ear, there is no place you'd rather be than right there in that moment with that little girl. It is the most perfect peace you can feel and it's the gift given to you by this "imperfect" child.
Kennedy was born in 1997 amid the usual fuss and flurry of any expected new life. Shortly after her birth, it was apparent that something was wrong. She didn't seem to be developing normally. After many tests, she was initially misdiagnosed with cerebral palsy but it was still apparent to us that something more was wrong. Her mother went on a quest to get the best doctors and specialist to perform as many tests as they could so that we all would know what we were dealing with and how to deal with it. Eventually, a couple of these specialists agreed - it was Angelman Syndrome. It took us a while to even figure out what that was and we didn't have time to stop and feel sorry for Kennedy or ourselves. These things happen.
Kennedy herself took no time to feel sorry. She has spent the last 10 years getting into the hearts of everyone who comes in contact with her. Starting school, always a scary time for parents more so than children, was a real obstacle. She is extremely sensitive to heat and humidity and prolonged exposure to either can bring on her seizures. Not all of the schools here in Kenosha are air conditioned so there was a brief fight with the school districts in town to get her into one that was. Turned out, she ended up at the best possible school for her. The other kids in her class love her and all want to be Kennedy's special helper each day. Every parent of a special needs child worries that their child will not have friends, that they will be singled out in the classroom and never know what it means to socialize. Not so with Kennedy! Since starting school she has been invited to her classmates homes for parties and get togethers just like everyone else in the class.
Weak back and hip muscles combined with scoliosis make it very difficult for her to walk. She must have assistance at all times. To gain some strength and to learn to sit up, she started going to Equine Therapy. The gait of a horse is identical to that of a human being. Research shows that for those who have weakened back, hip or lower torso muscles can show marked improvement by riding a horse! It really is amazing but it works! In order to keep Kennedy from listing forward as she was prone to do, the therapist had her ride the horse seated backwards. Of course, she does not ride unattended. Two "helper" walk along side the gentle mount to make sure she stays put. Because she wanted to reach the horses head, riding backward forced her to sit upright which did wonders for her back and posture. Now she sits bolt upright, on horse or off. A few weeks ago, they had a horse show at the stable where she rides. She won 1st Place for Best Posture! I know that seems like a small thing, but for a kid who sat bowed over like the letter C since the time she first was able to sit, that award was awesome!
Angelman's used to be called "the laughing puppet syndrome". That's because one of the characteristics of the disorder is bouts of uncontrollable laughter to the point of tears. She does this once in a while - starts laughing in a way that makes you think she is just happy but her wide eyes and tear stained cheeks let you know that she is in distress. It's heartbreaking that the sound of a child's laughter doesn't always mean happiness. Kennedy cannot speak and so cannot tell us what is bothering her. We have to guess and when we can't guess it is the most frustrating thing in the world.
After she was born and we found out what was wrong with her, I think that silently each one of us asked how this could have happened and why. But now, there isn't a person in our family that would choose to not have this angel in our family. She's the most loving, caring, sweet child in the world. When she hugs you, you KNOW you are LOVED! When she pulls your face close to hers to give you a big, sloppy kiss on the cheek or just to coo in your ear, there is no place you'd rather be than right there in that moment with that little girl. It is the most perfect peace you can feel and it's the gift given to you by this "imperfect" child.
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