Writings from Parents, Family, and Friends of Individuals Who Use AAC

Judy Bailey — Augmentative Communication with Mother: Lessons from Pesky Laryngitis to End of Life Impairment. The moving force behind this website talks about the roots of her involvement in AAC. http://everyonecommunicates.com/judybailey/communication_with_mother.html

Lynda Beedham — When in Doubt, Write it Out! "Our [6 year old] son was deemed too low functioning for even the most basic picture communication system. During the parent interview, I had described what I considered to be Eric's word recognition skills - reading was what I called it. He would place wooden blocks in a row: E R I C - A B C D E F G - S T O P .  He snuggled in bed with a dictionary instead of a stuffed bear. It was a beginning, I thought, and I felt this showed that he could be taught to read. The examiner patted my hand and told me that I was being unrealistic. My goals should be more in line with Eric's potential, that is, eye contact and sitting appropriately." Fascinating report of a nonspeaking boy whose family discovered his hyperlexia and then had to work to get him an education when his reading ability was "pushed aside as an idiosyncratic, non-relevant skill." http://judyanddavid.com/cha/our_story/eric.html

Larry Blumenthal — Life With Clay: A father’s journal of the day-to-day journey with a son who has autism. "After a silence that lasted around five years, Clay recently began communicating with us using a keyboard. (I’m still adjusting to the simple idea that he can tell me what is on his mind. I don’t have to guess all the time.)" Includes blog entries with a category for entries on 'communication' plus video clips. http://lifewithclay.wordpress.com/

Nancy Brady — Facilitated Communication: One Family’s Success, Autism Advocate, 2006. (pages 5-6) "We needed a communication strategy that would help his body organize in a manageable way. Nicholas' doctor always emphasized that he had an 'output' problem, not an 'input' problem, and suggested FC as a strategy for our little guy, who was struggling with motor planning issues." http://soe.syr.edu/media/documents/2010/6/understandingFacCom1.pdf

Katie Clarke — Havoc in Halifax blog: Katie Clarke, 6 children, 2 dogs, one husband, one wheelchair and 8 personal assistants in the family. "I have worked in the field of disability, participation and families for 19 years. During that time I co-founded 1Voice-Communicating Together which bring families with young people together who use electronic communication aids." https://katieclarke2014.wordpress.com/about/

Lisa Domican — Speech vs Communicating. "It is not about 'speech' or 'vocalisations' – it's about communication. So if an individual can select a picture of something they like, need or want and show it to you, they are communicating." Includes link to TED talk. http://www.graceapp.com/blog/speech-vs-communicating/. Grace App blog http://www.graceapp.com/blog/

Margaret Eastham — Silent Words: Forever Friends (1992) (Ottawa: Oliver Pate). A mother's account of how her son learned to communicate with facilitation and to become an independent typist. Forever Friends is a collection of previously unpublished works by the late David Eastham. On-line review: http://www.amazon.com/gp/product/0969601204/002-2947314-2739203?v=glance&n=283155

Gail Fisher-Taylor — "It was an indescribable relief to learn about AAC and to finally have the hope of some communication assistance ... I wish we had known about AAC when Kerr was little, and I wish that AAC assistance had been immediately available when we found out it existed." http://kilometresforcommunication.com/stories/gail-fisher-taylor/

Lily Frost — "A Sister Stands with Her Brother: I Am Heard, I Am Important, and I Am Included". "Typing has changed everything for Henry. Typing has given Henry a way for his voice to be heard. He is able to show people who he is through typing." http://ollibean.com/2012/09/03/a-sister-stands-with-her-brother-i-am-heard-i-am-important-and-i-am-included/.

Pam and Josh Harris — Parent's Corner. "Josh doesn't have functional speech so he relies on augmentative and alternative communication (AAC) methods. Pam is Josh's mom, personal care attendant and advocate. Together they develop family-friendly AAC strategies and materials." http://aacinstitute.thaleus.net:8070/Resources/ParentsCorner/2007June.html.

Elaine Hall, Founder/Director of The Miracle Project — "Neal is non verbal (or as we prefer to refer to him 'a man of few words') so when he speaks his truth through typing - WE LISTEN." http://www.huffingtonpost.com/elaine-hall/obama-and-autism_b_137571.html

Pat Henry — "Pat Henry Says Autistic Child Is 'The Glue That Holds Our Family Together'" by Christina Siebold from The Chattanoogan.com in the F.E.A.T. Chattanooga Newsletter. http://gigli.tripod.com/news/2002/april-page3.htm

Alyssa Hillary — Yes, That Too: http://yesthattoo.blogspot.com/

Matthew Hobson and Nancy HobsonI’m So Glad You Found Me in Here, a book co-authored by Nancy Hobson and her son Matthew, who types to communicate. "All of a sudden he took his index finger, his typing finger, and touched me on the shoulder. With each touch, he verbally said a letter aloud. He typed on my shoulder and said the letters, "I-L-O-V-E -... U." http://www.hobsonbooks.com/.

Nancy HoganWhen Two Worlds Collide: Using Aug. Com. in the Home by Nancy J. Hogan, Assistive Technology Specialist, The CCATT Center, Northampton, MA. "Jamie, my wonderful puzzle, is approaching three all too quickly. This is the story about how he is learning to communicate..." (The original website is no longer active, but we have linked to a copy at archive.org.) https://web.archive.org/web/20090924021951/http://www.connsensebulletin.com/worlds.html

Robin Hurd – Augmentative Communication Interview with Robin Hurd — "Don’t use AAC as a last resort. An amazing thing we discovered was that our verbal child with ASD was better able to communicate his feelings at first using either photos of different feelings or his brothers' AAC systems! Eventually, he was able to say the words at the time he felt the feelings, but in the heat of the moment, using a speech alternative allowed him and us to understand what was going on inside him when he got upset." http://www.theautismlife.com/interviews/robin.hurd.augmentative.communication.interview/.  

Merlie and David Jackson — "Jessie’s Story": http://parent2parent.appstate.edu/stories/jessies-story.

Mary Kay — You Don't Say blog. About "You Don't Say": This blog is about how our Angelman Syndrome (AS), daughter is finding her voice. Jessie is using a brilliant App called Speak for Yourself (SFY). Little did we know at the time how SFY would change the path of her life. Communication is the motivator for so many things. http://www.youdontsayaac.com/about/

Tracy King — "The Hug". "Around the time we were learning Makaton, Rachel came into the kitchen and threw herself on the ground having a flap. I got down on my knees and used Makaton to sign and speak 'What do you want'. Rachel stopped flapping and smiled at me and it felt electric – we both knew we had communicated!" http://www.makaton.org/blog/atSchool/usingMakaton/PostDetails/1606533136185625407.

Merry Knight — ABCs and AAC blog: http://aacabc.blogspot.com/. What AAC Does for My Verbal Child. "This is one of the things that AAC still does for Elanor. As is common with children who have apraxia of speech, words get caught between her brain and her mouth. The talker frees them. She can use it to free words for herself, as she did just yesterday." http://aacabc.blogspot.com/2014/10/what-aac-does-for-my-verbal-child.html

Heather Kim Lanier — Star in Her Eye. "This is a blog about a very special human being named Fiona, and my life as her mother. She is, among other things: a fan of The Sound of Music, a lover of crayons, an eater of spicy jalapeño cheese, and a listener (thanks to her dad) of Lee "Scratch" Perry and other reggae greats." http://starinhereye.wordpress.com/ Noun Lover: An AAC Update. "Without verbs or prepositions, nouns can't really communicate a thought. So I often guess." https://starinhereye.wordpress.com/2016/06/13/noun-lover-an-aac-update/

Russell MartinOut of Silence: An Autistic Boy's Journey into Language and Communication, 1994 (New York: Holt). Story of writer's nephew Ian Drummond, who uses facilitated communication. Reviews at Amazon.com http://www.amazon.com/gp/product/product-description/0805019987/102-4091685-2696162

Polly Medlicott — Tell the World. Every kid is really smart. We're the ones who are retarded. "What my son Christian and I want to tell the world, in hopes we might save some other kids, is his own story because Chris's silence nearly caused him to be lost." "What my son Chris and I want to scream to the world is this: How can professionals not understand that when they don't give a kid a way to communicate and the tools to do what other kids his age are doing, he will become deeply depressed and stop trying?" http://www.mouthmag.com/issues/79/medlicott.htm Polly and Chris were involved with the Community Inclusive Theatre Group in Raleigh, North Carolina. An hour-long documentary on the group's work has been made by Durham, NC filmmaker Kenny Dalsheimer. Further information and a clip from the film: http://southerndocumentaryfund.org/projects/a-new-kind-of-listening and http://anewkindoflistening.com/.

Soma Mukhopadhyay — Breaking the Silence ... CBS covered the story of Tito and his mother who helped to unlock her son's ability to communicate. January 15, 2003 http://www.cbsnews.com/stories/2003/01/14/60II/main536416.shtml. Autistic poet gives rare glimpse into mystery illness. "I don't see the child as autistic. I don't see the label at all ... I see the child as a person. And just as I would talk to any person, I would talk to a child, because the world is not going to talk to them in a very slow way." http://www.cnn.com/2008/US/03/28/Tito.autism/index.html?eref=rss_latest

Nieder Family — "Our communication/AAC journey": "Over the past 3 years we've tried a bunch of stuff to help my nonverbal daughter communicate, and most of it is easy to replicate (time consuming, but not too challenging).  Here's what we've done so far." http://niederfamily.blogspot.com/p/our-communicationaac-journey.html.

Niksmom — Maternal Instincts: Flying by the Seat of my Pants. Words into Action: "The natural patterns and rhythms of verbal communication do not come naturally to Nik. Despite the fact that he's had his speech device for three-plus years now, he still struggles with parts of speech and being able to put words together in a way which is understandable to 'outsiders.'" https://maternalinstincts.wordpress.com/

Michelle O'Gorman — Assistive Technology in Action – Meet Elle. "Without the Dyavox she…had a difficulty communicating what her needs were. People tended to underestimate her ability or what she understood and what she was able to express." http://www.youtube.com/watch?v=g95TO20hnmo

On the Train with Sophie (by Anonymous). Magic Is Happening: "Close to 2 years after my overwhelmed post seeking solutions to Sophie's lack of voice and about 18 months after purchasing her app I finally feel we are on the road to actual communication. When and how it will proceed, I won't even guess. But I'm betting it will be amazing." http://www.onthetrainwithsophie.com/2015/10/magic-is-happening.html

Anne and Al Reeves — "Maybe Someday". " ... we held out hope that 'maybe someday' the key would be found and Mark could express himself and overcome the limitations of the labels that have been placed on him. That day did happen!" http://soe.syr.edu/media/documents/2010/7/maybe_somedayanne_and_al_reeves.pdf.

Rita Rubin — "Changing Relationships within the Family". "An enormous change occurred when Sue began typing at 13. After a few weeks she could answer my questions." http://www-cgi.cnn.com/CNN/Programs/presents/shows/autism.world/notebooks/rita/notebook.html.

Rob Rummel-Hudson — Fighting Monsters with Rubber Swords blog. "My first book, Schuyler's Monster: A Father's Journey with His Wordless Daughter, tells the story of raising a little girl with a disability and learning to become the father she needs." http://belovedmonsterandme.blogspot.com/. My Name is Schuyler – "Schuyler is writing her own future, one that will defy expectations and well-worn narratives. Now she's got a voice, and the means to learn not just how to use it, but perhaps one day to play it like a virtuoso." https://www.prentrom.com/success/schuyler

Ralph J. SavareseInterview with Ralph J. Savarese, Ph.D., author of Reasonable People, A Memoir of Autism and Adoption: "Without facilitated communication, we would never have seen just how rich, complex, compassionate and funny is our son’s interior life. Watching DJ email his friends from Florida, where we used to live, or hanging out with his friends in Iowa is the best reward for all of our hard work." http://www.nlmfoundation.org/about_autism/features/savarese_features.htm.   A Note about FC and DJ's Writings: "He has an uncanny ability to organize his thoughts; he understands how an argument works, and these skills only continue to improve. But there is still something there that is distinctly atypical about his communication, something irreducibly him." http://www.reasonable-people.com.   The Silver Trumpet of Freedom (writing about his son DJ) "How will he do this? How will we do this? ... Only by laboring imaginatively and by building communities of support will this young man, who has so much to offer, continue to flourish." http://www.huffingtonpost.com/ralph-james-savarese/the-silver-trumpet-of-fre_b_827107.html.

Julie Shaffner — Understanding Lu: Our family's journey in living with Rett Syndrome. http://understandinglu.blogspot.com/ The Hard Way. "I believe it is our right (and obligation) as parents of children who cannot communicate in the typical fashion to not just request that they be provided with alternative means of communicating, but that we demand it. It is their right." http://understandinglu.blogspot.com/2014/09/the-hard-way.html

Deanne Shoyer — Our picnic adventure: an AAC tale. "Owen currently uses the app Proloquo2Go (P2G) as his AAC. For those of you unfamiliar with P2G, I put together a very short demo so you can see how much Owen was doing in terms of navigating buttons and folders as well as conjugating verbs." http://smallbutkindamighty.com/2014/06/23/picnic-adventure-aac-tale/. Small but Kinda Mighty blog: http://smallbutkindamighty.com/

Susie Shumate — "Facilitating Inclusion". "The following fall, after paying attention to what his words and his behavior were saying, we managed to convince the home school to accept him in full-time regular first grade." https://web.archive.org/web/20161001233154/http://soe.syr.edu/media/documents/2010/7/facilitating_inclusionshumate.pdf.

Heidi Thompson — Junior's Voice: Finding A Way To Share My Voice (our journey using the IPAD as a communication device): http://juniorsvoice.blogspot.com.au/

Diane "Ditty" Tower — Lifelong Devotion. Mother, Diane "Ditty" Tower, put aside her life to focus on her son Geoffrey Powers with Down syndrome who communicates via FC. He will graduate from high school with honors (2002). http://www.sptimes.com/2002/05/12/TampaBay/Lifelong_devotion.shtml

Skye Wattie —dd "One thing that's always been painful is when people talk around my brother, as if he isn't even in the room ... People assume my brother doesn't understand. But he does." http://kilometresforcommunication.com/stories/skye-wattie/

Diane "Ditty" Tower — Lifelong Devotion. Mother, Diane "Ditty" Tower, put aside her life to focus on her son Geoffrey Powers with Down syndrome who communicates via FC. He will graduate from high school with honors (2002). http://www.sptimes.com/2002/05/12/TampaBay/Lifelong_devotion.shtml

Wallace and Gayalyn Wojtowicz — "Heart Savants": Interviewed in this video about Wally Jr which includes some of his writing in text. http://www.youtube.com/watch?v=inRak4jGgmE

Barbara Yates — KEEP BELIEBVING IN ME, Barbara Yates, Pocatello, ID. "... At the height of his independence, David had typed, 'the truth gives me courage,' but now discouragement seemed to be his constant companion ..." (The original website is no longer active, but we have linked to a copy at archive.org.) https://web.archive.org/web/20001029061056/http://web.syr.edu/~thefci/2-3yat.htm

Ariane Zurcher — Emma's Hope Book. "Emma's Hope Book is a blog written by Emma, and occasionally she invites her parents, Ariane Zurcher and Richard Long to contribute. This blog began as a document of what her parents thought, but when Emma began typing to communicate in the fall of 2012, she proved all those previously held assumptions wrong." http://www.emmashopebook.com

Collections of Writings

A Foot in Both Worlds: A Collection of Personal Accounts from Speakers, Their Families, Friends and Facilitators, edited by Mary Lapos. Available at a cost of $US 5.00 (+ $2.00 shipping) from The AutCom Bookstore. Excerpts from A Foot In Both Worlds: http://www.inclusioninstitutes.org/index.cfm?catID=30&articleID=347

If You Look In their Eyes You Know: Parents' Perspectives on Facilitated Communication by Sue Lehr, Institute on Facilitated Communication, Syracuse University, Syracuse, NY, 1992. http://www.abebooks.com/book-search/author/sue-lehr/) "We are just beginning to recognize the potential for more clearly understanding what our sons and daughters want and how they think about their lives."

Facilitated Communication: Issues for Parents, Margaret Chatfield Hutt, Valley Polytechnic, New Zealand. "This paper covers the following areas: issues related to attitudes; the importance of validation; observations and suggestions on facilitation training for family members and caregivers; and obtaining support for parents and their sons and daughters." http://soe.syr.edu/media/documents/2010/7/faciliated_communicationissues_for_parentsChatfield.pdf

Success Stories, Prentke-Romich (PRC) website. "PRC success stories profile individuals who communicate using augmentative and alternative communication (AAC), parents of children who use AAC, and speech language pathologists, teachers and other professionals who work in the AAC field." https://www.prentrom.com/success