We are here to talk about an issue that is very important to us, our communication.
I think I played a crucial role in convincing Poppy and my parents that I Am Here or, as close relative once observed about me “all my lights are on inside my head”. This CDD girl is me struggling to get out. It is not easy for us to do. Our problems are quite diverse, and our barriers are unique but with the community’s input, we will find a way.
Poppy used to play the guitar a lot and a fellow musician once commented on his style as “leaving a lot of space”. He took it as a compliment since notes need space and rest. In sum, what I don’t say and how I convey it, is communication. We believe that all CDD children are strong and willful, which is the foundation of volition, which screams to the high heavens that we have intent. And if you have intent, you have already got what it takes to communicate. You just need a way to convey your intent. Now you know why Poppy writes my intentions. I have them and he types them. However, he has promised me that until you get to know me better he will not share my bad intentions,
The brains of CDD children are intact. Our architecture is in place. The science seems to say that connectivity is the problem. My receptive communication is intact, therefore I have opinions. Unfortunately, this is a world of speed and that we don’t have. However, if you slow down and linger with us you will be rewarded.
These chats that we will have been less about us and more about our worldwide community of CDD children, their parents, siblings, caregivers, teachers, therapists, doctors, bus drivers, aides and scientists familiar with us. We will strive to bring their voices to you and between us, we will find our way forward. And last but not least we want your stories of communication. We want all of you to jump in and help us and each other.
Be aware that we are plowing new ground and tilling this new soil is not easy. But our collective wisdom will create new science. Most of all it will help us hear or see or sense each others intents better.
Haley and Poppy
Great post, Ed! I can “hear” Haley.
Conly Rieder says
I’ll be looking forward to future information and happenings! Good luck with the endeavor! It’s a great picture of the two of you!!
Kelly Barnes says
Beautiful post! Thank you for sharing. Can’t wait to hear more!
What a gift this is to read … thanks for sharing with us, Haley & Poppy! Loved the the video too. <3
Mary Keegan Penarczyk says
Jim always forwarded your former writings to me. He was proud of what you were doing and knew it would impress me, which it did and does! Looking forward to your next post. Haley sounds amazing!
Mary thanks for your kind words. I miss him.
Patricia Voelker says
Reading her message I can readily understand how difficult it must be for Haley to have all her feelings and emotions locked up inside her head without a way to express them. The amount of frustration must at times be difficult to bear. Haley has no way of knowing what a blessing she is. Because of her she has a champion on her side and on the side of all children in similar situations
Who is working diligently to bring attention and help to find help for these children. Haley and Ed , you are a Dynamic Team . God Bless you Both and Thank You for Sharing and Helping Me to Understand Better about Haley.
Pattie Connolly Voelker
Mimi Spain Hannan says
ED and Haley, Thanks for sharing this important message.Looking forward to more research in the Communication Research world. In todays world I feel a Miracle could be around the corner. Mimi Spain Hannan
Charlie Diamond says
Thank you for sharing this great story. I’m looking forward to future Poppy & Haley chats.
What a great team!!
Thomas J Fennell says
Nice post, Ed…. Tom