About
On May 29th 2010 something life-changing happened to our family. I watched in amazement as my daughter, Emma, communicated with me through a keyboard. This may not seem like a big deal for a nine year old, but trust me, for her and I it was like a trip to the moon… and I’m still flying. Emma has autism and is non-verbal (with a mental retardation diagnosis). I have been dreaming about the day we could “chat” for her whole life. And now that this time has come, it has given me so much more than I thought it would.
Shortly after, I posted this message on facebook about it. It tells how it all began:
I Believe We Have Contact
I am in the midst of a miracle, friends! You are probably aware that my daughter, Emma, has autism. She is nine and has been non-verbal and has had low communication skills since she was 2 1/2. Recently I have been facinated by Tito and others and reading up and researching a little bit on IPM (Informative Pointing Method) used by Soma (Tito’s mom) and which is on the Strange Son website. I have been working on having Emma type “I want candy” when she wants it. It has been pretty hand-over-hand, but the other day I noticed that she was really focusing and leading the way. In IPM, they say to sit on the right hand side of the child and have them use their right hand. You place your hand on theirs for support and pressure when necessary. They can keep their stimm in their left hand. I started asking her questions “Do you want another peice of candy?”
She typed “Yes”. Am I imagining this?!
I had not even been sure that she could spell! We were in the zone, so I asked her if I could have a piece and she typed yes again. I asked her who’s party we were going to and she typed “Vivis”, the name of the little girl who was having her party that afternoon. I then asked her what color her toenails were and she typed “blue”.!!!!!!!
We started jumping up and down. I saw the elation in her eyes as well. We were both getting this. We shared in this together.
Since Saturday, I have found out a few things.Me: What’s you favorite color?
Emma: yellow ( I had always thought it was purple, so I asked her twice)Me: What did you have for lunch today?
Emma: pitzaMe: What kind of pet would you like to have?
Emma: orangutanMe: ( About her new pic by Renee) How do you think you look in this picture?
Emma: I think I look pretty (yes, the whole sentence!)I am beyond amazed!! What else will I learn about her and where will this lead? I have so much hope. It’s hit or miss and she needs to be looking and attentive, but WOW!! I have no words for this one, except maybe just
PRAISE GOD!!!! …………………..And this was just the beginning! Emma wants the world to know “I am a smart girl”, as she pointed out on the letterboard. I want the world to know this also and maybe re-think what children and adults with autism are capable of. Everyone needs encouragement and hope.
We do this blog together and I share it with Emma. She came up with the name ( see post What’s in a Name? –https://paperkids.wordpress.com/2010/07/23/whats-in-a-name/) . She has a lot to say and we have learned a lot together.
I’m so thankful to all the individuals with autism who found a voice to share the beauty, depth and wonder of their journey. They have given me a new perspective and much hope!
Here are some websites that have inspired me:
www.sue-rubin.org Sue’s website is full of info on FC (facilitated communication and includes many of her presentations on her life with autism
www.strangeson.com This is where I got the info on IPM
www.carlysvoice.com Carly Fleishman has given me so much inspiration!!
www.halo-soma.org This is the Soma’s (Tito’s mom) website
FYI: I’m so lucky to have an AMAZING photographer for a friend. My friend, Renee Bowen is not only an incredible photographer, but also one inspiring mom. She has three wondeful kids, including a child with autism. She has been a mentor and friend of mine since before Emma was born. She actually captured the very first photos of Emma. And if it weren’t for her, I wouldn’t have nearly the amazing photos on my blog. She did this one and the one on my home page and MANY others I’ll use. And, having a blog of her own with all her beautiful photography (www.reneebowenblog.com) she’s been able to help me out with the kinks! Thanks girl!
Follow me on Twitter at MurphyMusical
Paper kids 
Wow! I’m so inspired…it must be like unwrapping a Christmas present that is a box inside a box, inside a box. So many things to learn about this gift…
It seems like there may never be an end to how amazing this has all been. I can’t contain it!
I am a behavioral therapist and have worked with children diagnosed with Autism for many years. I am just so inspired by Emma and her story I cry with every new entry. You are such an amazing mother and Emma is so lucky to have the support system she does. And PS-What a gorgeous girl she is!!!!
What an awesome story. Yellow. Thanks to Jules for tweeting this. Team Emma.
I saw this blog from a Tweet and can’t wait to read all of your entries! God is SO good!!!
Some research on autism you might find useful:
http://www.psychology.uwo.ca/autism/index.htm
“Our recently published work (1,2,3,4,5,6) concerning the possible role of gut bacterial metabolites in autism has been listed among the top 50 scientific discoveries in Canada by the National Sciences and Engineering Research Council of Canada (NSERC). ”
http://www.newscientist.com/article/dn19011-gut-bacteria-may-contribute-to-autism.html
“Derrick MacFabe of the University of Western Ontario in London, Canada, and his colleagues have found that short-chain fatty acids produced by clostridium bacteria can induce reversible autism-like behavioural and biochemical changes in rats.”
http://scienceblogs.com/aetiology/2007/12/fecal_transplants_to_cure_clos.php
“What if, instead of re-constitituing healthy gut flora one species at a time, you could simply take the entire fecal contents from a healthy person and use it to re-colonize your own gut–in other words, undergo a fecal transplant? Yes, it’s like probiotics on steroids: getting an infusion of someone else’s gut flora in order to re-establish a healthy gut ecology of your own, and squeeze out some potentially harmful organisms along the way.”
“Tara C. Smith is an Assistant Professor of Epidemiology. Her research involves a number of pathogens at the animal-human nexus.”
“In 2008, Dr. Khoruts, a gastroenterologist at the University of Minnesota, took on a patient suffering from a vicious gut infection of Clostridium difficile.”
“Dr. Khoruts mixed a small sample of her husband’s stool with saline solution and delivered it into her colon. Writing in the Journal of Clinical Gastroenterology last month, Dr. Khoruts and his colleagues reported that her diarrhea vanished in a day. Her Clostridium difficile infection disappeared as well and has not returned since.
The procedure — known as bacteriotherapy or fecal transplantation — had been carried out a few times over the past few decades. But Dr. Khoruts and his colleagues were able to do something previous doctors could not: they took a genetic survey of the bacteria in her intestines before and after the transplant.
Before the transplant, they found, her gut flora was in a desperate state. “The normal bacteria just didn’t exist in her,” said Dr. Khoruts. “She was colonized by all sorts of misfits.”
Two weeks after the transplant, the scientists analyzed the microbes again. Her husband’s microbes had taken over.”
Awesome. Go Emma! 😀
wow- i cant imagine how awesome that must feel- happy for the both of you-
from Mundinator
http://goo.gl/photos/A9Yd
This is absolutely beautiful! I have two nephews with autism, and this gives me such hope… I don’t know if you read the blog “Fighting Monsters with Rubber Swords” (http://www.schuylersmonsterblog.com), but the author has a non-verbal daughter who has learned to communicate via technology. You might find a kindred spirit there.
WOW!
I sat here reading this with tears running down my face!
My kids have aspergers ( so they are reasonably high funtioning) and while they struggle with communication, they are at least verbal.
I could almost feel your excitement as I read about you communicating with your daughter for this first time.
Truly a miracle 🙂
Please contact me, you can get the info from my website. I produce a magazine for special needs parents, and your story is what I need. I read about Soma’s son in Exceptional Parent a wile ago. I am very interested. I am a mother of five, and my son is a nonverbal autistic, but we are starting to talk via ABA therapy. He is prompt dependent, but still… something. I know that waiting feeling. Blessings to you and I look forward to hearing from you, find me on FACEBOOK at Something Special Magazine, or http://www.somethingspecialmagazine.com. Thanks.
Emma, you are a truly amazing girl. I feel so blessed and humbled to have stumbled upon your words of wisdom. I look forward to catching up on all your past & future posts. Amazing Grace, how sweet the sound…..
YES! Thankyou:)
I’m in tears reading this. What a special girl you are Emma!
I’m Emma too and guess what, my favorite color has always been Yellow! 🙂
Mental Retardation, how very wrong that label is for this most brilliant and beautiful girl.
Emma’s Mom, you are amazing too, and thank you for sharing Emma with us, and for allowing Emma to share herself with us. I can’t begin to imagine how this all must feel for you!
Thanks Emma! It feels like my dreams came true:)
Blue sent me:
may you forever continue your joint enlightenment
Beautiful Emma
We all love you
Beautiful message, beautiful girl! Thank you so much for sharing. I’ve been using Facilitated Communication with many amazing young people for 20 years now. May I suggest that folks check out the movie “Wretches and Jabberers” and also visit my blog at http://www.grandmacharslessonslearned.blogspot.com
Many similarities in our methods and stories!
LOVE this blog and this entry, Sabra and Emma! Thank you for taking the time out of your VERY busy lives to inspire all of us fellow warrior parents and to give us hope! (See Emma? You’re also giving adults hope! That’s how AMAZING you are!) God is truly awesome and has blessed you so much! ❤