Waking Up to Carly
I am dedicating a post today to shed some light on a story that completely grabbed Cole and I this weekend and had us consumed and reading and watching anything we could find about it when we had extra time. Cole had stumbled across a YouTube clip of the amazing and beautiful Carly Fleischmann, a young Canadian girl with autism who has been featured on Larry King, and also on 20/20, sharing her story and a breakthrough. In the clip we watched a girl struggling badly thru therapy from a young age, and her resilient and strong parents who refused to back down and stop believing in their child. They kept pushing for a breakthrough, while others lost faith and began to question the point of it all. Her parents could see thru Carly's outbursts, and saw the bright intelligence behind her eyes. They would not give up on their child. They were connected in deeper ways than anyone could comprehend. Their girl was trying to breakout and reach them-- and one day she finally found a way. Here is the clip that we watched and you can be sucked in yourself...
We sat and watched and imagined all of the things that LB must be thinking. All of the things that LB must hear us talk about that he can't respond to. All of our wrong guesses and assumptions of his tastes and likes. Knowing that his silence does not mean disconnection. Even though LB does not have autism, many of the same symptoms and behaviors are shared with Smith Magenis Syndrome. Sensory output, self injurious behavior, and his speech delays, being just some of the similarities. Carly can shed light on many of this. Looking thru Carly's blog and her twitter account and seeing the questions that curious parents have been sending in and asking, trying to gain perspective and answers about their children with autism, made us realize that Carly has insight and answers that nobody else could provide before. She isn't a therapist speculating on what, and why, and maybe happening with an autistic child... Carly answers questions and specifically breaks down exactly what it feels like to be autistic, and why she carries out certain behaviors. How mind blowing to finally have this insight and connection, to be able to ask Carly what it feels like? why she has outbursts? Her writings reveal a deep connected voice, a sarcastic silly sense of humor, self awareness, and tenderness, and love for people around her. One of the most eye opening pieces of her writing we found on her blog was a letter where she proceeds to tear her therapists a new one, and sets things straight. She is logical, and blunt, and really lets them have it. Breaking down how she feels about their efforts and how they can better serve her. She is her own advocate, imagining what that must feel like for her to have that empowerment and strength is incredible. It makes me well up thinking about how long she was wishing and struggling to speak to her loved ones.
If you have some time check out the clip and then go and meet Carly and hear her voice. It's beautiful and important and I hope she ends up with as many followers as she wants on twitter. She was trying to reach the goal of 5,000 this last Friday and fell just a little short. Let's see what all of us can do to get her beyond that mark. So please go here and follow Carly's Voice and then RT.
All the Love in the Universe ~ Me
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33 comments:
Got her twitter & saved the blog to my blog.
Thanks for sharing this story, because I have a lot to say about Psychiatric hospitals & juvie. Lol, a LOT to say.
Your blog is an important part of my life, thank you for always sharing your family stories.
Amazing! Thanks for sharing!
Wow......!
That is wonderful, thank you for sharing.
wow what an amazing story. i have a friend who has been producing artwork for a kid with profound autism. he draws and paints for his "stimulation." while he is verbal and does go to school, it explains so much of his behavior.
i'm sure this gave you so much input in dealing with LB. i can't imagine raising a child without the ability to effectively communicate. i'm prayerful that LB will one day be able to share his voice.
you are both loving him well.
This just blows my mind. What a precious insight.
Really something to think about.
This is incredible. I'm so moved by this, I've just got to share it on my own blog. Thank you!
Amazing. This left me with tears in my eyes. So inspiring. I can't wait to read more about her. Thank you for sharing, Ryan!
Even though my son has Asperger's Syndrome (high functioning autism), Carly's words reminded me that I don't know what it's like to be in his body and how hard it is for him to control facets of his behavior. Sometimes I just assume he can *fix* these issues. I know it's not true and it's just my frustration. Even so, he needs to try his best because I won't always be here to take care of him and that worries me greatly.
Carly is truly an inspiration to all children with developmental issues.
Wow. I am absolutely speechless Ryan, thank you so much for sharing! I started following her on twitter on friday after you posted but didn't realize the full extent until I watched that video. While my eyes are filled with tears, I smile at the absolute blessing Carly has and will be to thousands of people in the future. With that, I want to remind you that it is obvious that Cole and you are doing everything in your power to encourage, love and understand LB. It shows, so kudos to you as well!
Ryan - that was amazing. I am off to share this with some friends
oh my gosh that is INCREDIBLE!!! I think we ALL have a voice....just finding the way to make it heard and understood is the hard part
Thanks so much for sharing. What a beautiful and humbling story.
This made me so choked up. What an amazing story. Thank you for sharing, and thank you for her links. I'm going to her blog right now :o)
http://www.apple.com/trailers/independent/thehorseboy/
Made me think of you.
I started learning about autism when I saw Jenny McCarthy on Oprah a few years ago. Reasons or causes aside, these are amazing people with purpose and lessons to teach us all. I'm amazed by Carly, what spirit and inspiration she is.
Saved her blog, shared the video, and added myself to her fan list on Facebook.
Thanks for sharing this as well as your own story. I think it will really open people's minds about children with autism and other hard-to-understand conditions.
That is incredible! Completely sucked me in
What a fitting time for you to be able to guide me to this video clip. I have a parent that I am working with now who has twins who have been diagnosed with autism. They are about to turn four and the gains they have made in the last year are nothing short of remarkable. Like Carly's parents, the twins' parents refused to give up and fought to have 40 hours per week of ABA therapy provided for each of their children. In the past year, the girl has gone from being strictly echolalic to being able to hold a short reciprocal conversation with a peer about her favorite topic (princess dresses). The boy has gone from completely non-verbal to being able to speak in one or two word requests. I was talking to his mom last week and she and I both shed tears when she told me the story of when her son first called her "mom." It was truly moving. As someone who works in the field of special education, you do not want to give false hope but you should never give no hope. Only the child and the parent know how strong their resolve is. I love and respect both you and Cole and from what I have seen in your parenting I know you will never give up and that LB will have the opportunity to reach his full potential.
Oh, and I wanted to also point you in the direction of some good reading. Temple Grandin is an individual with autism who has overcome some serious odds. She has a PhD and she writes books and speaks all around the world about how she has experienced autism and what helped her overcome. One of her books called "Thinking in Pictures" is particularly moving. Some other good readings are "Born on a Blue Day", "The Curious Incident of the Dog in the Nighttime", and "Look me in the Eye."
Thank you!! I'm in tears. I have worked in the past as a behavior therapist for kids with autism of the sort that you saw in the clip working with Carly and my son is on the autism spectrum. I am overwhelmed by this breakthrough. How wonderful!
I want to post it to my own blog, but it's not uploading right now.:(
Thank you for sharing this. You have once again brought me to tears!
thank you so much.
Ryan, thank you for shining your light in this post; I was rendered speechless and awestruck.
I spent a load of time reading about Carly and following her progression. Those of us who have the ability to vocalize our "inner voice", yet struggle with finding it have so much to learn from Carly -- and her parents.
Beautifully done!
Here is a sort of successful story of a boy who conquered his autism... I read this a while ago.
The Boy Loved Windows: Opening the Heart and Mind...
I got chills and goosebumps watching that clip. What an incredible girl, and what amazing insight she can provide. How amazing. I'm just baffled. What a gift she is, helping families like she is. I'm shocked, but kind of in that way you are when you see a something in a different light, like 'wow. something so beautiful has been here all along.'
Thank you so much for posting this on your blog. Living in Australia, I would not of heard about this wonderful girl who has given so much hope to my husband and I in this past 24hrs.
I understand what you and Cole go through because I am a parent of a child with Autism.
My husband and I always thought we could soldier on, but I now realise how crucial it is to become friends with other parents in the same situation. You don't feel so alone. It amazing what a bit of support can do for your family.
As for Tessa and my own daughter Audrey are concerned...what cool, fantastic girls they are going to be and so important in our families.
My girl will go with me to the creche at the Austism school and as she grows her friends will be a mixed bag of all sorts of children. She will grow up thinking that everyone is the same regardless if they have special needs or they don't, and she will have a cool and unique brother that she will be proud of. I don't wish for this to happen, I KNOW it will.
i've been following carly on twitter. she's delightfully articulate. thank you again for sharing her story!
Thanks Ryan! Carly's story lit a spark of hope within me and some of my family members - a cousin of mine has an autistic daughter. Can't tell you how much we've enjoyed reading about Carly. Have saved the links.
Thanks again - love to Cole, LB and Tessa.
Tash
Thanks for letting us know about this!
This is better than great. I say this because I sometimes wonder what goes through the minds of my children on a daily basis. It sheds light on so many things. Living with autism for going on 7 years now, each day is different and so much the same as well.
Today my husband told me that he heard my most affected son say "Hi Daddy" he is almost 6 years old and has never said that. He told me that my son also went to the only picture of me in the house and said "Where's mommy?" I have not heard him say mommy at all since he even began babbling...I am dying to get home right now and hear him speak those words I have waited to hear for years.
again, thank you for sharing this - autism is truly mysterious and wonderful just as the children affected by it are.
Wonderful post. I really enjoyed reading it and watching the video. It's amazing how much deeper the world really is than we generally realize.
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