buffettgirl
Cathlete
When I first posted, I mentioned my son has Prader-Willi Syndrome. Since the is PWS Awareness Week, I thought I educate those interested.
PWS is a non-inherited genetic disorder thought to affect the hypothalamus and pituitary glands. This disorder creates wrong messages in the brain, causing the person to always feel hungry. This results in a constant, intense drive to eat, leading to sneaking or stealing food, or money to buy food. On top of the constant hunger, these individuals gain weight on much less calories than the average person. There are also many other problems facing these people including weight related health issues and behavioral problems.
We lock all of our food. There are locks on the frig, the freezer, kitchen cupboards and the basement door. My son is a pro,however, at waiting for someone to forget to lock, or leave the frig unattended for a second. Not a week goes by that he doesn't manage to get into the frig or basement. He has also gone into neighbor's homes, cars and garbage, looking for food. He knows all the stores in the area that deliver and has written bad checks to some.
He also has behavioral problems. He constantly argues, is obessive compulsive, and has temper tantrums. Medication has helped moderate some of these problems.
The biggest problem facing us, however, isn't the stress of dealing with this syndrome all day, every day. Our biggest problem is the county Mental Health/Mental Retardation Agency who refuses to recognize my son's diagnosis of retardation and provide the appropriate services. His evaluation by a neuropsycologist indicates that parts of his brain (learning) function at a high level while other parts function at a low level. When the numbers are averaged, his IQ appears normal, but in fact, he is clinically retarded according to the state's definition which looks at more than just test numbers.The doctor likened my son's brain to a football team with many star players, but no coach to call the plays. We have been in a legal fight for almost 3 years. We won our initial appeal to the Dept of Welfare, and the county was ordered to provide services, but they put us on a waiting list for money for residential placement. We have been on the waiting list for 10 months. Letters to legislators hasn't helped, and we are now waiting for the courts to rule on the county's appeal. Meanwhile, my son spends his days unsupervised (DH and I both work) sleeping or watching soaps.
So now you know a little about PWS. I could go on and on. Some day I'd love to write a book. I could tell about the time we got home from the grocery store and DS has a sub sandwich in his pants. Or the time we had to call the police because DS was threatening to kill us. It's been a lovely cruise....
PWS is a non-inherited genetic disorder thought to affect the hypothalamus and pituitary glands. This disorder creates wrong messages in the brain, causing the person to always feel hungry. This results in a constant, intense drive to eat, leading to sneaking or stealing food, or money to buy food. On top of the constant hunger, these individuals gain weight on much less calories than the average person. There are also many other problems facing these people including weight related health issues and behavioral problems.
We lock all of our food. There are locks on the frig, the freezer, kitchen cupboards and the basement door. My son is a pro,however, at waiting for someone to forget to lock, or leave the frig unattended for a second. Not a week goes by that he doesn't manage to get into the frig or basement. He has also gone into neighbor's homes, cars and garbage, looking for food. He knows all the stores in the area that deliver and has written bad checks to some.
He also has behavioral problems. He constantly argues, is obessive compulsive, and has temper tantrums. Medication has helped moderate some of these problems.
The biggest problem facing us, however, isn't the stress of dealing with this syndrome all day, every day. Our biggest problem is the county Mental Health/Mental Retardation Agency who refuses to recognize my son's diagnosis of retardation and provide the appropriate services. His evaluation by a neuropsycologist indicates that parts of his brain (learning) function at a high level while other parts function at a low level. When the numbers are averaged, his IQ appears normal, but in fact, he is clinically retarded according to the state's definition which looks at more than just test numbers.The doctor likened my son's brain to a football team with many star players, but no coach to call the plays. We have been in a legal fight for almost 3 years. We won our initial appeal to the Dept of Welfare, and the county was ordered to provide services, but they put us on a waiting list for money for residential placement. We have been on the waiting list for 10 months. Letters to legislators hasn't helped, and we are now waiting for the courts to rule on the county's appeal. Meanwhile, my son spends his days unsupervised (DH and I both work) sleeping or watching soaps.
So now you know a little about PWS. I could go on and on. Some day I'd love to write a book. I could tell about the time we got home from the grocery store and DS has a sub sandwich in his pants. Or the time we had to call the police because DS was threatening to kill us. It's been a lovely cruise....
