I am the parent of an amazing boy.
He is 9.
He is smart, funny, and happy.
I am the parent of a child with Prader-Willi Syndrome...
He is 9.
He is smart, funny, and happy.
I am the parent of a child with Prader-Willi Syndrome...
PWS is a complex developmental disability that results from a defect on the 15th chromosome. Because of an abnormality in the area of the brain
called the hypothalamus, these individuals face challenges in learning, behavior and controlling their appetite. The message of fullness never reaches
their brain and they are always hungry. The intensity of their food drive can vary but all require support and understanding if/when they
are exposed to food or they attempt to seek food. Food security must be considered and provided in all environments and at all times.
While I am first Mom to Cade, just as importantly I am his advocate in every aspect of his life for his rare disorder.
I am tired.
Remaining humble and thankful for all of Cade's progress is so very hard in the midst of advocating.
Some days I feel as I've been robbed. Prader-Willi Syndrome is a thief that is silent, invisible, and ever so deadly. Cade doesn't display food seeking behaviors much yet, so it is really hard to advocate for his safety surrounding food. Food is everywhere and while he may not be actively seeking it out of little Joe's school bag or foraging through garbages for left over food...it is still so real for families like ours. The food lessons are more important than his disability. The food rewards are more important than his anxiety. The kid with food allergies is excluded just like him, because they too can't eat certain things.
I am relentless. I put together informative videos, brochures, handouts, letters, etc. just to prevent the inevitable. No, I am not cute and organized. I am far from having it all together. I am trying to save my child's life. Thats all. I sleep with video cameras on my child to avoid waking in the night and accessing food. We stick to a rigid meal schedule to avoid unwanted anxiety. We stick to special diets to avoid weight gain and optimize brain function. There is so much more behind the advocate. So much more to learn and so much work to be done.
Tonight I am celebrating Cade.
He is the bravest kid I know. He loves school and his teachers. He escapes hard tasks, but pushes through with the right encouragement and always proves to be smarter than he thinks. He just received student of the month for Courage. He has made social gains by truly gaining friends at school. So much sweetness when for Halloween, he turned the corner and saw one of his friends. He screamed, "Whaaat Uuuup Dude!" He has eliminated some workload anxiety by typing vs writing. He enjoys typing much more than the fine motor struggles that come with writing. He says Math is easy, but I am not convinced. He loves animals of all kinds, especially his new puppy, whales, and alligators. He kindly is my daily alarm clock and reminds me "that it is morning" OK, maybe I am not celebrating that on weekends. Ha. But, he is amazing and most of all worth it.
Thankful for the lessons, failures, and achievements.
Advocating for him will never be easy, and may fall on deaf ears at times..but he will always be worth it.
While I am first Mom to Cade, just as importantly I am his advocate in every aspect of his life for his rare disorder.
I am tired.
Remaining humble and thankful for all of Cade's progress is so very hard in the midst of advocating.
Some days I feel as I've been robbed. Prader-Willi Syndrome is a thief that is silent, invisible, and ever so deadly. Cade doesn't display food seeking behaviors much yet, so it is really hard to advocate for his safety surrounding food. Food is everywhere and while he may not be actively seeking it out of little Joe's school bag or foraging through garbages for left over food...it is still so real for families like ours. The food lessons are more important than his disability. The food rewards are more important than his anxiety. The kid with food allergies is excluded just like him, because they too can't eat certain things.
I am relentless. I put together informative videos, brochures, handouts, letters, etc. just to prevent the inevitable. No, I am not cute and organized. I am far from having it all together. I am trying to save my child's life. Thats all. I sleep with video cameras on my child to avoid waking in the night and accessing food. We stick to a rigid meal schedule to avoid unwanted anxiety. We stick to special diets to avoid weight gain and optimize brain function. There is so much more behind the advocate. So much more to learn and so much work to be done.
Tonight I am celebrating Cade.
He is the bravest kid I know. He loves school and his teachers. He escapes hard tasks, but pushes through with the right encouragement and always proves to be smarter than he thinks. He just received student of the month for Courage. He has made social gains by truly gaining friends at school. So much sweetness when for Halloween, he turned the corner and saw one of his friends. He screamed, "Whaaat Uuuup Dude!" He has eliminated some workload anxiety by typing vs writing. He enjoys typing much more than the fine motor struggles that come with writing. He says Math is easy, but I am not convinced. He loves animals of all kinds, especially his new puppy, whales, and alligators. He kindly is my daily alarm clock and reminds me "that it is morning" OK, maybe I am not celebrating that on weekends. Ha. But, he is amazing and most of all worth it.
Thankful for the lessons, failures, and achievements.
Advocating for him will never be easy, and may fall on deaf ears at times..but he will always be worth it.
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