It has been a couple of weeks since the BEAUTIFUL photo of Tressa was taken the morning of school pictures. Since that BEAUTIFUL picture of Miss Tressa was taken she decided to cut her own hair. She does not have patience, we are working on this. A women stopped over to see us to make a time to come and cut all the children's hair.... Tressa the very next morning climbed into the activity closet about 4 am and started cutting off section of her french brade so large SPOTS cut to the scalp. It was about 8 hours after my discovering the new do that I was thinking...Hey, wait a minute. Tressa has the weakest hands and it takes a lot of strength to cut full globs of hair. I found each of the hair sections in tact in her room...
In cleaning the boys room I found MORE HAIR, when Steven got off the bus I questioned him and learned he was the apprentice..Tressa woke him up to help..Now why he didn't come and get me and partake in this new found career I have no idea.. Tressa is VERY CONVINCING in more than just acquiring food. When she wants something she strives to obtain it.

Build self esteem early

Many times you will come across folks who believe your child "should know better" should "try harder" our kids pick up on these people, they feel it...Building self esteem early builds their ability to respond, stand up for them self in an advocating way. They will learn poise and strength to educate people in ways no one can if they are not a person with PWS. I learned about PWS insight from a women with PWS I met in Ft Lauderdale. She gave me so much hope, the light at the end of the tunnel I needed..She will forever be my shining star. Tressa remembers her and saw her at the 08 Fall Florida Chapter meeting.

Physical activity priority

Be sure PT is in their every day routine. Check out your local sports, T-Ball, special Olympics is introducing a new program 3 to 7 year olds. Your child can join the neighborhood sports teams or call special Olympics and sign up. Many camps are out there for children with special needs where they have experience with PWS so get your respite and allow your child "normal" experience. These neighborhood experiences offer great opportunities for you to sit naturally and share about your child.. EDUCATE the general public about PWS in a positive note.

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.

Welcome

Friends, I can not say enough about the need to cultivate friendships from the early years. To help their social skills so they can build friendships through out life. Friendships throughout school can be placed right into your IEP. CIRCLE OF FRIENDS. Please read up on this as it makes for a path of positive education experiences. Also do not be afraid to go into the school and educate during open house, parent conferences, offering a letter to parents the beginning of each year educating them about your child's PWS and how they can be a positive part of the year. Most people want to help. Most people when they are educated would not want to do anything to hurt your child's feelings. most parents are very thankful when they learn of other activities not food related shared for parties.

Having a circle of friends means that your child has a selection of friends who move throughout the school years with your child. They will be in the class your child is in each year. This builds a strong support team for your child. These children can be part of your IEP planning. They know your child in ways you don't. This is such a wonderful program.

Also it is so important to have your child be an active part of extra school activities. Teach them young how to seek out activities to join.