Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 15, diagnosed with Prader-Willi Syndrome and Weston 18, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.

Wednesday, November 24, 2010

"My Deadly Appetite"....Update on William Weaver...Leave a Message for William and his Family

To read my post about William's parents click here

This post is dedicated to Momma and Papa Weaver

Many of you may have watched “My Deadly Appetite” on the Discovery Health Channel this month. It is the touching story of William Weaver, a 14-year-old boy diagnosed with Prader Willi Syndrome.

For those of you who have missed the episode it will air again on the Learning Channel (TLC) on December 1 at 8 pm.

William leaves his home and family for the first time in his life and is admitted to the Children’s Institute in Pittsburgh, Pennsylvania for a 3 month stay, where he is treated for his obesity and behavioral challenges, symptoms that accompany PWS.

During the episode, William is successful in learning skills to manage his weight and control his behavioral outbursts. He loses 60 lbs. and returns home as a happier and healthier young man. It is a very touching and beautiful episode.

My post today, is the story of William Weaver’s journey home.

It is the story of one boy’s desire to continue to change his life and the lives of others.

I thank William and his special family for allowing me to share the inspirational story of his return home to his family and friends, his hard work in losing even more weight and his spiritual journey to uncover the true meaning of life.

This is my interview with my dear friend, William Weaver.

“It been hard,” William tells me, and in his voice, a touch of sadness.

“It been aggravating.”

“I was away from my parents and friends, first time away, ever.” William describes his visit to the Children’s Institute and his first time leaving his home. In his voice, sadness and honesty. He remembers the hardships but tries to stay positive by remembering some of his happier moments there.

He quickly recalls his Mom and Dad's first week long visit with him in Pittsburgh. There is a childlike innocence about him as he speaks.

“When my Mom and Dad came to visit me at Pittsburgh for one whole week, I went to get my haircut. Oh my God, I am in the best place in my life. The girls there wash my hair. They condition my hair. Oh my God, I am in love with them. The girl who cut my hair was a Babe! I still have her picture on my wall. She was a fancy, fancy girl!” William giggles.

When asked about his time at the Children's Institute, it is the kind people William recalls most, key individuals who helped him to cope,

“I like Christine, my PT (physical therapist). We start out on wrong foot but then I like her. I make lots of friends. Brittany, my girl friend and Corey, my aide, I love him. I miss him a lot.”

In talking with William, it is clear that the time he spent there was difficult. When asked about his toughest moments, he explains in just three words.

“The quiet room.”

“A rubber room without the rubber,” is how his mother, Faith describes it.

It is clear that William prefers to talk more about coming home, and as he does, he shines,

“Now that I am home,” he says, “Now, I……..FEEL……..GREAT!”

“Lots of people happy for me,” he says. “I am so happy to be home with my family and my dogs, Goliath and Belle.”

His Mom, Faith happily reports that since leaving the Children’s Institute, William continues to lose weight.

“Since May, William has lost a total of 94 lbs!” she explains. “For the first time he can wear store bought jeans.”

William explains with excitement and glee,

“Oh my God, one night my Mom brought me to the mall. I tried on jeans. I looked in the mirror. I have a bunch of happy face. I held my hand to my mouth. I say, Oh my God! Oh my God!”

Faith tells of the tender moment she shared with William in the dressing room.

“When we looked in the mirror, both of us were crying.”

Faith attributes William’s weight loss success to being vigilant about using smaller portions and adhering to his diet. She explains that both the Children’s Institute and the National Organization for PWS encourage the use of the Red, Yellow, Green Diet for losing weight.

Also referred to as the Traffic Light Diet, this program teaches the user which foods should be avoided and which should be consumed in greater portions. Red Light foods are high calorie foods which contain few nutrients and should be avoided. Yellow Light foods are high in calories, but also high in nutrients which make them good to eat in moderate quantities. Green Light foods have lots of nutrients with only a low amount of calories.

“When William came home from Pittsburgh,” Faith explained, “I was scared to death. But we knew we had to stick to the program.......With (PWS) children if there is even a fraction of a chance they can get more food, they will do it.”
Faith explains how she initiated a new meal plan at home for William.

“The Institute provided us with his first few meals for our trip back home, after that we just stuck to the plan.”

Faith explains that the first meal William wanted when he came home from Pittsburgh was hamburgers on the grill.

“I got out the scale out and measured 1 ounce of meat. Do you know how much 1 ounce of meat is? Faith asks, “It isn’t much......But the great thing about the red, yellow, green diet, is all the side dishes he can have.....With the salad and vegetables and sugar free Jello, there really is a lot of food he can eat.”

Faith credits William’s continued weight loss success to the entire family working together.

“As a family, we all got on the same page. No deviation. We do a lot of menu planning as a family. We make our menu up one week ahead of time so everyone has a chance to eat what they want. Then we just stick to it.”

She explains how when William was first born she wasn’t ready to accept his diagnosis.

“I wish we had taken this syndrome more seriously in Will’s first few years of life. At that time, I was in denial, I thought that William would not be affected. Now, I know better. I wish I had started him on a healthier diet right from the beginning, with lots of vegetables and less macaroni and cheese.”

 Since coming home, William has increased his level of activity.

“I am a different kid” says William, “My face completely thin. My fingers are longer. I run faster than I used to, but now I feel I run faster and faster.”

“At home, he loves to walk the dogs,” Faith explains, “We also got a new tire for his three-wheeler. He rides it around and around the neighborhood.” Our church also has a gym with lots of exercise equipment and a walking track.”

William has accomplished the 94 lb weight loss and behavior management all without any interventions, no growth hormone injections or new behavioral medications.

“He did this all on his own.” Faith proudly explains.

William participated in a Challenger Baseball League during the fall and joined a Special Youth Outreach Soccer team that played from September to November.

“I play soccer,” William tells me proudly, “I like running and losing weight. My coach say to me, hustle, hustle, hustle and hit the ball, so I really do. I like soccer. I like baseball too. I like hitting the ball. I hit Grand Slam really far over first baseman’s head. I hit it way up in the air. He couldn’t get it and it was a Grand Slam.”

William explains that while he has lost more weight, it is still difficult for him to keep calm.

“I feel grown-up and more mature, but it is still hard to control my anger.”

 Faith explains that while William does still get upset, he has come a long way in improving his behavior. In fact, when asked, what makes Faith the happiest since Williams return, she replies:

“Seeing William get upset.”

“ I know that sounds funny, but thanks to the Children’s Institute, he now has the tools he needs to recognize when he is upset. He knows how to diffuse his anger and that’s huge! In the past, if William had a meltdown it would take the whole day to recover. Now he knows how to calm himself down and just move on.”

Other changes since coming home include a new school for William. It is a public school for children diagnosed with special needs. There are six children in his class and three adults that include a paraprofessional just for William. Exercise is also incorporated every day into William’s school schedule.

Although William’s success has been amazing, Faith reminds us that PWS is a lifelong condition and even though weight and behavior issues are managed, caregivers still need to be vigilant.

“There was an incident at home the other day where some pasta salad was accidentally left out.  In the morning, I found the empty pasta bowl underneath Will’s bed. People need to know that although William has had much success, he still has Prader Willi Syndrome and that will never change.”

William talks about the gift he gave his Mom while he was at the Children’s Institute.

“I bought the gift with my own money, store money I earned while I was there. You can buy soaps and shampoo and stuff like that. I bought lotion. Lotion that I bought to show how appreciate I am that Mom did all this for me. I told her that! I have good parents.  They love the most and they don’t want me to die.”

William shares his deeply personal and spiritual perspective with me.

“My Mom and Dad take me to Sunday School. I have my own Bible. I want to learn more about God. I pray and pray for God help me in school. I pray help my family. When I pray to God, 6 lbs I lost on that day. God helped me lose all that weight.”

He talks about the growth he has experienced on his soulful journey losing weight and becoming a young man who is filled with love for his family, his Creator and the world.

"......Jesus turned me into an angel and let me speak to the kids." William explains to me privately. 

As he shared this spiritual thought with me, I wiped the tears from my eyes and thought to myself, perhaps there are hidden angels living here in disguise upon this earth. And perhaps these earthly angels are not born with white robes and golden halos. Perhaps they are born with genetic illnesses and cognitive delays. Perhaps they are born with Prader Willi Syndrome. Perhaps they are placed here on this earth to truly educate the world, to speak to the few individuals who will take the time to listen to their stories. Stories about the importance of faith and hope and most importantly, love. These are the things William talks about. These are the things that are important to him.

To me, I have found one of these hidden angels.

To me, his name is William Weaver.  


I would like to thank William and his family from the bottom of my heart for sharing his story with the world.

William’s family includes his mother, Faith, his father, William Sr., his sister, Ericka, who is 13 years old. She is a straight “A” student, a member of the National Honor Society and the Student Council. She was voted MVP in tennis and won an audition at her school play. He also has a brother Michael, age 31, brother, Steven, age 27, and brother, Donnie, age 22.

If you would like to leave a message for William, please leave a comment on this post. I will forward all posts to William and his family. Please, good wishes only.

Please leave a message…….Let’s give William and his family, the support and encouragement they deserve for sharing their very touching and personal story with all of us.

God Bless the Weaver Family!