Topic : 08/25 Extreme Food Obsessions

Nichelle is so lucky to have a wonderful supportive friend like you! I am a RN and have worked with disabled children- none with Prader-Willi Syndrome, but many with similar behavoirs. I really felt for her on todays show and knew that many viewers wouldn't understand. I don't excuse Nichelle's outbursts towards her daughter, but I understand them. Keep being her rock!!  Karen RN 

 I also have a 13 year old daughter with PWS. We didn't found out what it was until she was 7 years old. We were always told that she had a muscle disoder. She's got diabetes & her diabetic doctor is the one who told us about the disorder & we had her tested & that's what she had. We live in Alabama & not many doctors know what it is so anytime we go to a new doctor we have to explain what it is. She is overweight, but she is not as bad as some kids that fight over food. Her main problem is her behavior!! She can be an angel one minute & the devil the next. She gets in trouble a lot at school because of this ( she's in special ed. ) At home we can kinda control her tantrums but when were out in public sometimes it's embarrassing because everyone stares at her & that makes me mad because it is so rude when people stare at a person with a disability !!! She can be soooo sweet most of the time but when she does get mad , we never know what causes it. Any little thing can set her off. I know how Savannahs mother feels because sometimes it's so overwhelming that I feel like I can't take it anymore. But I have to remember that she can't help the way she is. And if it wasn't for my husband helping me I don't know what I would. So my heart goes out to Savannahs mother, I don't know how she does it by herself. I don't agree with her hitting her because she can't help the way she is. I just hope she learns more about the syndrome so she can help her daughter instead of hurting her. I don't think she is very educated on Prader Willie sydrome. Maybe if she was she would come to terms with it & help her daugher.                   

Hi, 

I have a six month old who was recently diagnosed with Menkes Kinky Hair Syndrome, a genetic disorder.  I was very upset when I saw the preview of Thursday's show.  I just knew I'd be coming on to go off at Nichelle.  We hope, but it is not likely with how his disease is progressing, that our son will live to be six.  He may never be able to talk or walk or even lift his head.  We would never think of hurting him physically or with words over something he can't control.  However, once I heard the story I understood where she was coming from.  Dear Nichelle, you're doing the right thing by getting help.  I understand how long denial can take over your life.   It's rough realizing your child is not like other children, and that they have a different calling in life.  Do I wish my child could be like others? Yes, every day I wish he didn't have to overcome the obstacles he has to overcome every day.   Would I exchange him for any other child? Never.  I know your heart is in the right place.   I think you know you are her life, and I know it is frustrating.  But don't give up, do the right thing.   It sometimes feels like we're alone with genetic disorders, half his doctors had never seen a case of Menkes.  But there is hope, and there's life, and I think you are doing the right thing.  "To the world you are just one person, but to one person you are the world." 

Michelle 

In our neurology classes we studied the areas of the brain that affect how we eat , feel hunger, stop eatting, feel full.  You are exactly correct, this is a problem in this child's brain.  This very young woman has so much new information to process and still has ALL of the same concerns single parents of  "normal" children deal with on a daily basis.  The last thing she needs is for someone not even concerned enough to watch the show...give their uninformed opinions...shame on them!  I am very glad I watched this show.  I never know when someone with this particular disorder might walk into my office.  Now, I know where to get them the help they may need!  We never learn how to help others by putting our heads in the sand and pretending they do not really need our help.  They do and we will be held accountable...one day!!! 

Dr. Debra 

I am the mother of a child with special needs. When my son, who is now 10 was diagnosed when he was three with autism, I thought my world was going to fall in. It didn't. With some help, 7 yr's later, he is a smart, funny, strong loving child. He may not ever be independent but he will have every available opportunity to hopefully be. This mother can justify her behavior any way she sees fit but the bottom line is that I wouldn't treat any child the way she was treating her child. Her daughter is not capable of understanding what is happening to her. She will never be able to rationalize her behavior because in addition to being six yrs old she has a cognitive impairment that doesn't allow her to appropriately process information and she has a speech delay so she cannot express it even if she could!!  I would like to share a poem that was given to me many years ago and I hope she sees this and reads it and get's the help she needs to give her daughter what she deserves. 

by
Emily Perl Kingsley 

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... 

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. 

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." 

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." 

But there's been a change in the flight plan. They've landed in Holland and there you must stay. 

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. 

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. 

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. 

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."  

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. 

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. 

I just finished seeing this show, and I was outraged! 

Seeing that little 6 year old girl crying and screaming on the floor of that bathroom, because her mom found it gross that she had pooped on her pants, broke my heart. I am no relative to that child, and I felt so sorry for her--but her own MOTHER treats her that way! No mother is put here on earth to call their kids "stupid", "moron", and "idiot", no matter what "kind" of child you were blessed with. Her job is to put so much self-worth and love in that little girl, that she doesn't have to think twice about her individual value as a person. Even though she has disibilities, every child can feel love. Every child, perfectly healthy, or doomed to live with a disibility like that, knows when they're loved. I didn't see once, that Nichelle say that she absolutely loved her daughter. That she thought she was beautiful, and wanted to make her feel that way. Chances are, if Savannah knew how much she was worth as a person, and knew that she had a mom who was there to love and guide her, and be there when she needs her, she wouldn't be so "out-of-control".  

I know how hard dealing with a child with special needs can be. My youngest son has speech impairment, constant tantrums, and learning disibilities. It can be very hard, especially when you have four other children to deal with. My husband and I knew that it would be best to homeschool him. He is nine and a half years old and is barely learning to read and write properly. I always worried about my older kids getting jealous if I treated my boy with more patience and made special exceptions according to the situation. On the other hand, I worried if I was dealing with him too harshly sometimes. It can get very hectic. I have NEVER treated my son anything like what I saw today. I love him, I think he's a beautiful person, and I am very proud of all his achievements. I want him to see all that. I wish I had seen that with Nichelle. 

She has to make the decision on whether she wants her daughter or not--disibility and all. If she does, she has to make the right choices. She has to develop the patience. She has to develop the self-discipline. If she isn't willing to do that, give her up for adoption! She is a gorgeous little girl, and there are many people (believe it or not) who are willing to take on that challenge just to be able to have the honor to raise that beautiful little girl. 

Shame on you for treating your daughter like trash. 

Also, I want to say to Kathy, that I was so suprised how much twenty pounds made a difference! You look awesome, and I am proud of you. Keep going.