Thursday, June 23, 2011

Effective Communications Month - We Love You!

Before June (Effective Communication Month) is over, I want to squeeze in a post on the topic. Most people think the top priority for a girl with multiple handicaps would be to walk, but communication is what really tops the list. Effective communication that is.... Girls with Rett Syndrome are very good at communicating the basics: "something's wrong!" "something's great!" and "this is really really boring."

But how do people around them understand exactly what is wrong, great, or boring? How do Rett Girls go further to express a sense of humor, a dream, an idea, an observation?

Technology will be the key. And luckily that is moving at a fast pace. But the educational teams assigned to work with these girls are slow to keep up in many instances.

Nineteen years ago, the NJC (National Joint Committee for the Communication Needs of Persons with Severe Disabilities) published a Communications Bill of Rights. 1992 is a long time ago - we still need a lot of work in this area.

To share the words of our very own Kelly Butler whose daughter Brooklyn has Rett Syndrome:

I recently was made aware that there is actually a Communication Bill of Rights. As a mother of a disabled (non-verbal) daughter you would think I would have know about something like this. (Better late than never I guess!)

Anyway, as I began reading through the list I said to myself, "Everyone wants these things, I know I certainly do!" But then it hit me - and hit me HARD. Brooklyn doesn't always have these things....Rett Syndrome took them away from her. It is up to me to make sure she gets them back and keeps them, always.

Today as you make your choice for what you will have for lunch, take some Tylenol for that headache, go to the bathroom, talk to your friends, or even decide its time for bed - think about Brooklyn - and the millions of kids and adults that are non verbal and can't always make these choices for themselves and then be thankful. Very, Very thankful and maybe, just maybe - help fight for those who don't have these things - fight for them.

Communication Bill of Rights: All people with a disability of any extent or severity have a basic right to affect, through communication, the conditions of their existence. All people have the following specific communication rights in their daily interactions. These rights are summarized from the Communication Bill of Rights put forth in 1992 by the National Joint Committee for the Communication Needs of Persons with Severe Disabilities.

Each person has the right to:
■request desired objects, actions, events and people
■refuse undesired objects, actions, or events
■express personal preferences and feelings
■be offered choices and alternatives
■reject offered choices
■request and receive another person's attention and interaction
■ask for and receive information about changes in routine and environment
■receive intervention to improve communication skills
■receive a response to any communication, whether or not the responder can fulfill the request
■have access to AAC (augmentative and alternative communication) and other AT (assistive technology) services and devices at all times
■have AAC and other AT devices that function properly at all times
■be in environments that promote one's communication as a full partner with other people, including peers
■be spoken to with respect and courtesy
■be spoken to directly and not be spoken for or talked about in the third person while present
■have clear, meaningful and culturally and linguistically appropriate communications

From the National Joint Committee for the Communicative Needs of Persons with Severe Disabilities. (1992). Guidelines for meeting the communication needs of persons with severe disabilities. Asha, 34(Suppl. 7), 2–3

Click here to download a poster to display at schools and therapy centers.

Wednesday, June 8, 2011

My community has a soul.. That is why we call it home.

Welcome to our guest blogger today: Jen Dalton from Saranac Lake, NY - mom to Emma and member of the GP2C Mothers' Advisory Board.


What is a community? According to the dictionary a community is “a social group of any size whose members reside in a specific locality, share government, and often have a common cultural and historical heritage.”

My eighth grade students often asked me why in the world I would come back to live in Saranac Lake. I tell them I too couldn’t wait to leave, to go where the action was, to live an exciting life in a big city. That was 20 years ago. 16 years ago I found my way home. Home to the hour drive to the mall, the one way streets, the town where I grew up.

You don’t realize when you are young just how amazing your home town can be. How extraordinary it is to go to the grocery store or post office and hear “Hi Jen!” Or “Hi Mrs. Dalton” ? People know you and your family. And then something devastating happens to someone and you watch that community spring into action. I’ve seen it happen time and time again – never imagining it would happen to me, but it did.

In September 2008, my daughter Emma was diagnosed with Rett Syndrome. We had heard the words before, but on that day it became a bittersweet word that would change our lives forever. Sweet because we finally had a name for the monster that was not allowing Emma to gain skills. Bitter for all of the other reasons – the implications that she was facing a long, uphill battle, and that the life we had dreamt about for her would be very different than we had thought.

Very shortly after, I became involved with Girl Power 2 Cure. At first it was a way to connect with people that were going through Rett Syndrome. They “got it” when no one else even knew what Rett Syndrome was. As part of the healing process - knowing that Rett Syndrome symptoms had been cured in Dr. Adrian Bird’s lab in Scotland - I threw myself into planning a benefit event. Being a music teacher and coming from a very arts centered community , I knew it had to be be musically related and thus, Rockin’ For Rett was born.

Our first Rockin’ for Rett event was held in October 2009. We had wonderful musicians from the community who donated their time to perform. Our community donated many amazing items for the slient auction. It was a great day and we raised awareness of a horrible condition people had never heard of. Very shortly after, people from the community began to ask me if we were going to do another benefit. We knew we needed to “tweak” the format and make it a more family friendly event and that is when our community sprang into action.

One day I had a thought as I went to visit my friend Jen Tucker. Her husband’s family owns a huge potato farm that has been operating since the 1860’s. Every year they plant the Great Adirondack Corn Maze. All of a sudden it made sense! Rockin’ for Rett 2.0 could be held at the farm. People could enjoy the Corn Maze. It would be great! The owners were very excited about the prospect of the event being held at the farm. Each year they design a different corn maze and because of their interest in Emma and in helping to find a cure for Rett Syndrome, they added the Girl Power 2 Cure Flower, Em’s name and Rett into the Maze. I think it was the largest Girl Power Flower to date!

It felt like our entire community helped with the event. From local businesses donating items for auction, to students volunteering at the event from the local honor societies, to young volunteers running the bake sale - we felt supported by everyone. Together that day we were able to raise $25,000! All from a town of less than 5,000 people. It was truly remarkable.

For us , community means family. Our families are the most amazing out there. They have been willing to get on this crazy ride with us and support us in any way they can. Not just in the planning of events. It is the every day life support that we will be forever grateful for. I am so thankful we have that support and love.

Rett Syndrome hasn’t been cured yet. The excitement of Girl Power 2 Cure, however has grown ten fold in our community. In April, my 9 year old daughter Sarah did a Pennies for Rett Drive at our school. Kids were arriving with coffee cans full of pennies. Sarah is currently at $420 and counting as pennies continue to arrive daily! Also in April, my nieces Rachel and Kelly , along with their friend Nathalie organized a Spaghetti Dinner in honor or Emma for Girl Power 2 cure. Along with their friends they secured donations from very generous businesses and people in our community and were able to raise over $2,000!

I have come to realize that community is so much more than the people who live and work in your town. They are the people who you call family. They are the people who teach your children. When someone is in need no matter how big or small, they are the people who arrive at your door, or call on the phone saying “What can we do to help?” In the words of Pope John II “...A community needs a soul if it is to become a true home for human beings. You, the people must give it this soul.”. My community has a soul.. That is why we call it home.