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.

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.

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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.

"This Stefanie Matters" TO US!

A fellow Rett mom shares her story "Why Girl Power 2 Cure, you ask?" on her blog: THIS STEFANIE MATTERS.

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Why did we join Girl Power 2 Cure and why do we love them so much?
Best to start from the beginning.

When we were first diagnosed, we read about the old-school literature of Stages I through IV of Rett Syndrome, which in a not-so-scientific nutshell discusses our daughters normal development, regression, stagnation of skills, and rapidly deteriorating stage until the unspoken happens.

Where was the hope in that? We first brought Anna home from the geneticist and were under the impression that Rett was a death sentence.

Hope and joy were hard to come by. Full disclosure: on Anna's hard days they still can be, but nothing is as black as those darkest days. There are days now that Spring has arrived that I am at the park with the kids and I see a healthy girl Anna's age running, talking, playing... And I think, "Only 1 gene separates my daughter from you." Sometimes I go back to throwing stones at them but other times I can get through it by telling myself their mothers are going to be jealous of me when their girls are 16 and off riding in cars with boys on Friday nights and Anna and me are having a movie night cuddled up on the couch. Ah yes, bargaining! Works every time.

When we found GP2C, the "girl power" confused me at first. I was never a "girl power" kind of gal. But as I perused through their website and stumbled upon "Meet our girls!" I found myself in a symbolic garden of hope with beautiful photos of families and their girls, their moms, their stories, how old they were when they were diagnosed, what has helped them, what hasn't, where they were from.... Not only did I become a believer in "girl power" but here I was looking at these flowers - lovely gals - planted all over the country! How could we not be a part of this? I have become a girl power kind of gal who now has a flower power GP2C bumper sticker on the back of my car. The cynical me is gagging right now. But she doesn't much exist anymore...

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"Mom Message" from Kristy Brooks

Throughout May, we want you to meet the incredible moms serving on our Mothers Advisory Board. Today, we welcome Kristy Brooks, GP2C Mothers Advisory Board Member, as a guest blogger. Be sure to watch the video, Juliana's Story, linked below!

And So We Will Continue…
We received the news in the mail – a diagnosis of Rett Syndrome for our daughter Juliana. I never thought for a second that it wouldn’t be positive or I wouldn’t have opened the letter alone. I was six months pregnant with our second child at the time and my knees literally buckled from under me when I read the words.

I sat on the kitchen floor, crying all by myself. Why did I open it?? It only meant that I would now be the bearer of bad news. I should have waited, but I never thought it would be true. The only way to describe how I felt that day is absolute nightmare. I just kept repeating in my head – ‘THIS CAN’T BE TRUE . . . THIS CAN’T BE TRUE. Please let me wake up from this nightmare.'

To say that the days and weeks that followed were hard would be a huge understatement. Aside from the initial horror of the diagnosis, we now had to figure out how to tell everyone. No one knew what Rett Syndrome was, so having to explain every last painful detail over and over again was torture. After the pain and the hurt came the anger, the “Why me?” the anger at God. Not a good place to be. So we started looking for answers and trying to accept what this would mean for our lives - all while trying to maintain a job and get ready for the birth of our second daughter.

We survived the next couple of months but quickly realized we couldn’t live like this. We couldn’t just take this sitting down. There had to be something we could do.

Enter Girl Power 2 Cure.

Girl Power gave us hope again. It made us realize that this didn’t have to be a death sentence. You can’t understand the comfort in knowing that you are not alone. Our family was wonderful, but no one REALLY understands what you are going through like another Rett Parent. Girl Power gives us hope in all the research that is being done and all the potential it holds.

We quickly assembled a team, affectionately called 'Juliana’s Dream Team.' It is a team of everyone who loves her. And the magical thing is that the Dream Team just keeps growing. Over the last 2 ½ years, we have held 2 golf tournaments, 2 spaghetti dinners, one wine tasting and countless other garage sales and donation jars. And we aren’t stopping there.

We plan to keep going until Juliana gets her cure.

To see all the progress Juliana has made, against so many odds, gives us all so much motivation to find a cure.

And the motivation for all of this? An amazing little girl whose smile literally recharges you. Everyone who meets Juliana is instantly drawn to her. She has very special qualities and although she can’t talk with words, she grabs hold of your heart and you feel this instant connection to her. I actually feel so lucky and blessed to have this amazing child. She inspires so many people - I can’t believe that she’s mine.

If I could change things and take Rett away I would do it in a heartbeat, but I’ve stopped asking “Why Me?” in a negative way and started asking “Why me?” in a special way. What did God see in me to give me such a special angel? We still have our rough days but thankfully the good far outweigh the bad.

So we will continue.

Juliana will continue to teach lessons in love, compassion and patience. And we will continue to care for her and love her in the best way we can all while we continue the mission of finding her a cure. Keep an eye on my girl. She has and will continue to do amazing things in her lifetime!

Today is the 100th Anniversary of International Women's Day. It all started in Europe in 1911 when millions rallied to celebrate. It is hard to imagine getting together millions of people in 1911 without Facebook, Blogs and the Internet.

This leads me to two thoughts. And, yes, they will certainly be tied to Rett Syndrome.

First: I was reading a medical blog the other day which had one sentence that really struck me. It was not anything new, it was just the way it was stated... and perhaps there was something about my state of mind when I read it:

"The only known risk factor for getting Rett Syndrome is being female." Wow. That is a tough one to swallow. Think about how random this is.

Every now and then I calculate how many girls have been born with Rett Syndrome since our daughter Sarah was born. As of today (going by 18 born each day) we are at 66,366. 66,366 girls Sarah's age who cannot grow up to be the women they deserve to be. And that figure doesn't even come close to the total which reaches close to half a million.

1,206 born just in 2011 so far.

Second: We need to find all of these girls. Women around the world need to know about them. We can stop this. For all the girls and women reading this today, do something to push us closer to a cure. Every little bit counts.

If one million people can gather in 1911 without mass communication, certainly we can keep sounding the alarm about Rett Syndrome.

Make today your tipping point. If you have not been involved with raising awareness and funds for research, start today. We'd love to have you by our side.

We have an entire section on our website dedicated to HOW TO HELP -- click there now! We need YOUR POWER to cure Rett Syndrome.

http://www.girlpower2cure.org/how-to-help.aspx

GP2C Youth Volunteer Recognized by YSA

Congratulations to GP2C Youth Volunteer Rachel Dalton! She has been recognized as an "Everyday Young Hero" by YSA for her commitment to raising community awareness about Rett Syndrome and to finding a cure!

Rachel has been an outstanding volunteer for GP2C. Last Fall, she organized friends and family to make baked goods for a bake sale and raised over $800!

Read the full press release from YSA here

RETT WE CAN!

She can't do this. She can't do that... It can be a real downer for Rett Girls every day. But... only if we let it be that way.

To kick off the New Year with an empowering attitude, Girl Power 2 Cure is launching a new YouTube channel called RETT WE CAN!



Here is why we created this channel (inspired my Rett mom Terri Vejrosta!)

* to share the "Rett" experience by showing the things Rett Girls CAN DO
* to put an empowering, positive, human face to Rett Girls
* to have a place to send therapists, family members, volunteers, and donors to see Rett Girls staying strong
* to have all the great YouTube videos ORGANIZED by category*
* to get inspired
* to explore different things to work towards with Rett Girls
* to educate others about Rett Syndrome

If you have a video you would like us to include, please send us the link! (post a link on Rett Girl's facebook page or email us at rettwecan@girlpowe2cure.org)

Please know that there will be a wide spectrum of girls featured on the site. Not all girls will be able to everything here. For instance, I know my Sarah probably will never water ski like Jade, but others just might!

The point is to always reach FORWARD. Always explore and challenge and keep Rett Girls active. All of us have a role to help bring these girls to their full potential. Each girl's potential will be different, but we want to make sure everyone stays inspired to believe...and have the tools to inspire everyone who lives or works with a Rett Girl.

Check it out now at www.youtube.com/rettwecan!


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* Our current categories are Walking, Hand Function, Eye Gaze, Communication and Expression, Sports and Adventure, Therapies.

NOTE: When you visit the site and see the category listings, click on one...then you will see all the videos under that category. Remember to send us suggestions and even category recommendations! We want you all to be a part of making RETT WE CAN a great resource!


2011 is a NEW YEAR! Best wishes and strength to all!
- Ingrid