Last week, I posted a blog called “The Myth of Augmentative and Alternative Communication (AAC) Pre-Requisite Skills.” Some of the responses I received were from parents of adults with Complex Communication Needs (CCN) saying that their son/daughter is still so frustrated as an adult. Others are concerned about “giving up” on verbal speech, and some have been told by professionals (or other family members) that their child is too young. To everyone, my advice is this: Start now. Using AAC will not inhibit verbal speech (if I was ever going to get a tattoo, I think that’s what it would say); AAC will encourage verbal speech development because you are giving someone a way to express thoughts, wants, needs, ideas, hopes, fears, and feelings with consistent auditory feedback.
So what do you do if someone tells you your child is not enough? What if they say your child is not smart enough, not well-behaved enough, not engaged enough, not old enough, not young enough, not physically capable enough to use AAC?
Look at the individuals and see them as capable, intelligent, and deserving of the opportunity to communicate. See them as enough. They have enough cognitive ability and enough desire. Their behavior is good enough to warrant an opportunity to communicate, or there is enough frustration to justify introducing a communication system. They are old enough and they are young enough. They have enough physical ability, whether it is with their eyes, their heads, or their toes…They are enough, as they are right in this moment, to deserve the opportunity to communicate, and the chance to find their voice and speak their mind.
Here are some AAC myth busters who have done exactly that:
Jess
“We experienced every possible reason, no, I need to say, every possible excuse as to why our daughter could not use a high-tech AAC device.
We had two game changers that altered our course (when Jess was 20 years old). First, when we moved Jess to the OTC, they had a more effective behavior modification system than the school. The director of this program also believed in raising the bar, something that had rarely been done in our traditional school setting. Second, we found an AAC app, Speak for Yourself (SFY). Up until now, she had no means of communication. Jess spoke “Jessie”. This worked for our family, but like sign language, most people don’t know it.
Within two years of implementing a behavior mod and giving her SFY, Jess went from the overgrown toddler stage to a young woman that is learning what it is like to be her age. For a person with Angelman Syndrome, this is remarkable. We believe the best is yet to come!”
Read more about Jess’s story here.
Mary Kay
Author of the You Don’t Say blog
Maya
“Four big “reasons” that she wasn’t ready for high tech AAC.
Four excuses that we ignored.
Instead of figuring out ways to clear the hurdles that they had laid before us, we walked away from their obstacle course and did it on our own. (Not because we were heroic, but because hurdles are exhausting.)
We pursued AAC early and doggedly, because Maya had a right to say whatever was on her mind, whenever she wanted. No low tech system could provide her with that, so high tech was the only option, as I saw it. We were excited as she became able to request favorite objects, to make little jokes, to talk about the weather. We were delighted when she was able to come home from school and tell us who she played with, or what therapy she had, or what songs they sang that day. But it wasn’t until a few months later, as we went through the “Turning 5 Process”, that we realized how fundamentally Maya’s early access to AAC was going to change her life.”
Read more of Maya’s story here
Dana Nieder
Author of the Uncommon Sense Blog
Elanor
- Elanor
“Between 13 and 15 months Elanor lost all of her words and sounds. She started private speech therapy at 18 months, and showed many signs indicative of Apraxia of Speech and ASD. We started asking about getting an AAC device right away but were told that we should wait to talk about getting one until Elanor was 2 because she was too young for it, and anyway she might just start talking again. Elanor’s grandparents went ahead and bought her device at 19 months and Elanor did not start talking before she was 2. My mother said that even if Elanor had started to talk right away she would not regret for one minute buying her the device because of the confidence it gave her.”
Read more about Elanor’s story here.
Merry Knight
Author of the AAC and ABCs Blog
“I am a SLP at a pediatric hospital and am disheartened that the The American Speech-Language-Hearing Association doesn’t require grads to have a course & internship experience in AAC. When I graduated 24 years ago, the university I attended offered it’s first AAC course my last semester as a elective course. Here we are 24 years later and although technology has changed drastically new grads still may not have any experience unless they took an elective course. And even then they may not have any hands-on experience with devices.
As a result you would not believe how many older teens & young adults that I have seen who have had little to no appropriate AAC prior to making it to our hospital. Parents have stories of asking for help for years and being given all these excuses and more. In the past year alone, I have seen 5 young men ranging from ages 17-20 years old who had never had any AAC besides a few simple signs & a couple of PECS symbols who I knew within less than 5 minutes of meeting each of them would do fabulously with a high tech dynamic display AAC device. In each case they blew us away in the AAC eval even spontaneously understanding symbols and navigating between pages.
I was blessed to be able to help get AAC for each of these young men….. but still makes me mad & sad that they went so many years without that need being met. To make real change, AAC courses & hands on experience has to be required for all new grads. I think some of the hesitancy is fear on part of the clinicians of all the paperwork involved in ordering AAC and/or not know how to use the devices or even how to contact vendor reps to borrow them.”
Angela Moorad
Speech-language pathologist
Owen
“Owen is 8. He is still on the wait list for an AT assessment. He was diagnosed as autistic when he was 3 and prior to that was part of the Toronto Preschool Speech and Language program because he couldn’t speak. I was signing with him in lieu of having access to anything else. Once we were put on the waitlist for autism services he started to use PECS. Three years ago I fundraised to get iPads for he and his brother. A year ago we were gifted a copy of Proloquo2Go (P2G). While receiving services I managed to persuade his service providers to let him participate in an iPad study. He did amazingly well which is when he went on the AT waitlist. Rather than simply wait for years for his assessment I’ve been implementing AAC with him using P2G basically teaching myself but supported by some amazing folks (including people in this group). His teacher has been very supportive. The SLP for his class was initially very conservative but I pushed for lots of core and having seen how well he did, she got on board.”
Read more about Owen’s story here
Deanne Shoyer
Author of the Small But Kinda Mighty Blog
Sophie
“Basically I read so much about this very topic (people saying kids not ready) that I didn’t even really ask anyone what they thought, went ahead and did it and only presented to others after the fact when Sophie was already using ” Read more of Sophie’s story here
Ewa Sroslak
Author of the On the Train with Sophie Blog
Thank you to the contributors who share their knowledge, experience, stories, and children with the internet world. In doing so, they give capable (and incredibly cute) faces to the very real difference AAC can make in the lives of individuals who have communication difficulties and their families. They open the door to the possibility that someone will read their stories and decide that a child has enough skills to have a voice because after all, communication is a basic human right.
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