Replies to '08/25 Extreme Food Obsessions'

Dear Nichelle, 

Please heed Dr. Phil's advice and utilize the resources he is giving you.  I felt compelled to to write you and tell you a true story of my grandmothers faith and love.  She passed last year, but spent 42 years of her life caring for my aunt.  My aunt was mentally challenged, and ate all the time without much exercise to compensate for the calories.  She may or may not have PWS.  I just want to say that I never one time saw my grandmother speak to her daughter in any negative way.  She was pushed to the brink at times I'm sure, but she always responded with love.  The state tried to take my aunt from her (In the 50's it was common) but my grandmother told them that no one could love and care for her daughter better than she could.  My aunt did flourish with the love from our family.  She cannot live on her own, but functions well in a world that can be very cruel to her.  We never even used the word "retarded" and I was 12 before I ever heard such a thing.  Please please please be very aware of how your words effect your daughter, and people who love her.  (Yourself included.)  Pray for the patience you need to have with yourself and your daughter.  You can do it Nichelle.  I know it is not what you ever wanted for your child, nor for your own life, but you are strong and you can raise your daughter with love.  Hug her every moment that you can!  My prayers are with you, and I hope you find the strength to be the loving mom that I know you can be. 

Sincerely, 

Danielle 

Hi Nichelle, 

 I saw you were on here this morning. I just wanted to let you know, also that you can have your daughter tested in the school district you reside in for her developmental delays. If she qualifies for services they will provide pt, ot, speech and language and developmental assistance at no charge to you. They have to provide this by Federal Law. I believe its public law 94-457 being that she is not school age yet . Even if she is you still have the right to get her tested and placed in services. I thought this might help some. Or you may already know. I am not sure. But I believe that if us moms stick together and help each other thats a really great way to be. Also alot of services are out their and you dont know it because no one tells you. I have learned most of mine by parents and going to Nichy and printing out my state resource sheets everytime I move.  Well I hope this will help. Take care and keep working hard.  

Hi Nichelle: 

I think I did come off a little mean and I truly apologize for that!  I am just frustrated that Dr. Phil chose not to show all of the interventions that our kids have today to make their lives better, like Growth Hormone injections, Therapies, etc.   

All of these things evolved because parents of older children FOUGHT like HELL for them and I don't understand why Dr. Phil doesn't want to do a show on the FIGHT to BEAT THE HUNGER!   

I am glad that you have reached out for help and that PWSA USA is going to help you.  Honestly, I am sorry that I came down so hard on you, I do wish you the very BEST! 

Sincerely, 

Joyce 

Hi Nichelle, I watched today's show and I was not thrilled with your behavior.  But, I wanted to let you know that I have not walked in your shoes by having a child with disabilities.  But, I did raise 3 sons as a single mom and I know how difficult life can be at times.  Please hang in there and get all the help Dr. Phil has to offer and love that little girl with all your heart.  She needs you!  My youngest son was killed in a car accident last year (he was 18) and was only a few weeks away from starting college.  My heart is broken and I just wanted to tell you that life is short and you never know when your children will be taken away from you.  My son and I had a wonderful relationship and I have no regrets about the way I treated him or raised him.  I just don't want you to ever lose one of your children and then look back and regret that you didn't do more to love and care for them every minute of the day.  What I would give to have my son back!!!  Even though this message board is difficult for you, hopefully, you can get the help you and your daughter need to move forward.  And, yes, there are people on here who are mean and I think we should give more support and help to those in need rather than more criticism.  You and your family are in my prayers!    

Nichelle, 

I admire your bravery to publicly open your home life and the struggles that you have dealt with. You were open to change, asking for a new way to deal with the issues that I know you understand are not Savannah's fault.  

I think what most people want for you is support for you to learn how to create a structure for your family. That structure gives Savannah comfort and help to learn that there is an order to the day as well as other priorities that have to be incorporated into the day. This structure gives your other child the chance to see that family life has a routine that is normal and creates safe boundaries, and gives you relief in knowing that Savannah is learning the routine, your other child is comfortable in the family stability, and that you can take any challenge in the day and refer back to the routine. 

Having worked with street youth dealing with recovery from addiction, and no structure in how to live on a daily basis, I acknowledge that developing the routine and introducing it to an individual - regardless of age, mental developmental level, or other barriers to learning - is the most difficult challenge in starting to gain control and stability in a family. However, the routine is crucial for assisting people who are dealing with behaviour-control issues because the structure is safety. Another key point to making the routine work is posting it in a main area of the house, usually in the kitchen. Use picture magnets, coloured markers, and symbols if that's easier for everyone to recognize and understand.  

This isn't something specific for PWS kids or kids in addiction recovery, this is something that is often recommended for every family. My friends use it with their kids showing the daily schedule for going to school, after-school activities, family chores, mealtimes, learning self-care (e.g. brushing teeth and bathing), and bedtime. They see the routine, they recognize it, and it becomes part of everyday life, which is the ultimate goal. 

It will be difficult, but I think you have lived through the worst part of it, and are ready to find better tools to help your children become amazing people. There have been some great supportive messages from other people who have worked with or who have children with PWS, and I hope that you're able to find the resources that are available to you. You have beautiful kids, I know you love them, and I believe that when we have better tools, we do great things.  

I think you can do great things. 

Kelle