Hello, we share a common bond

If you are reading this blog you must be aware or seeking information on the syndrome called Prader-Willi which comes from the names of the Doctors whom discovered the chromosomal disorder.

I am here to provide you as much information as I can. I am most familiar with Florida and how the state system here runs. Many programs are offered across the USA and can be named a little different and run a bit different but the basic information/services will give you insight to grow on. Always email or post a question if you have one.

#1 for new parents EARLY INTERVENTION PROGRAM 0 to 3 yrs of age..IMPORTANT program to seek out and get enrolled into. It is an entitlement program, your child with PWS is entitled to their services regardless of your income. It does not have a means test to be eligible.

Once your child turns 3 years old, WAIVER PROGRAM it is named different in different states but in Florida the APD office is the lead agency and it is priority to get on to the list at the age of 3. The wait list is long so you need to get on prior to needed program use. THIS IS CRITICAL for many reasons. Our kids/families need support. Our state lacks in funding this program and need to know how many people are out here needing services even though it is a wait list your child COUNTS in stats necessary for funding planning. Also, stay tuned because services are provided to those on the wait list whom really need supports. You will see as my blog builds.

In Florida like many states we have a state PWS chapter support groups whom meet 2 times a year although the Internet puts up together when ever necessary. Go tot he www.pwsausa.org site and pull up your support group information.

The National office is located in Florida and is staffed with very knowledgeable folks ready to assist. We are parents first and we must forget the label and look at our children as our children. PWS is a unique chromosome challenge to say the least. I can tell you our ups and downs have been from one extreme to the other, All the experiences on the path I am on have made me a stronger human for sure. It is a learning process because nothing is black or white.

Grasping the reality of the food issue is by far the hardest concept I have ever had to understand. It is all about preparedness and honest open communication. It is a way of parenting by positive rewards, with a spin. Believe me there is always a spin. LOL

We have a family blog which is day to day; I do not exploit my daughters PWS behaviors to the extent we really live them.. Most of what we are going through right now is growing pain..Each step of development you have to look at prevention. When or if needed things need to get modified. It is best if you modify prior to a negative behavior because correcting an established behavior is one thing..Never having the opportunity for a behavior to begin much easier to deal with.