Tears and Dancing at AGOSCI

On day 2 (click here to read my overview of day 1) of the AGOSCI Conference the tears started before Gayle Porter even began her opening keynote speech. For anyone not familiar with  AAC, in 2007, Gayle released the PODD communication system which completely revolutionised AAC. PODD communication books and now the PODD pageset on the Compass app have given thousands of people around the world a voice, including my Harry. Not surprising then that the speech therapist introducing Gayle could barely make it through her introduction without getting choked up.

In her keynote, Gayle posed the question about an AAC user’s system: ‘Will I take it to a party?’ Not can I take it, but WILL I take it. She spoke about the importance of long term intervention, of training communication partners and the critical role that parents, friends and family play in ensuring that AAC users value their systems. 

She also addressed how often it’s only the ‘now’ that is on display.  We see videos of wonderfully competent AAC users, but what we don’t see is the years and years of hard work, continuous modelling and remaining hopeful, even when you’re running on empty, to ensure that one day your child will be able to communicate. The hope that one day, these years of modeling will pay off and your child will finally be able to share their thoughts with you. The tears in the hall fell freely from parents, therapists, teachers and even from Gayle.

Later that morning, a young speech therapist bravely shared her mistaken assumption of a client when she was a first year speechie.  With tears streaming down her face, she reflected on how grateful she was to have learnt so early on to never presume anything but competence. And later in the day the tears flowed again from a teacher and speech pathologist who shared the amazing positive transformation in behaviour in a group of pupils with autism after the introduction of a literacy program.

The tears were punctuated by the AGOSCI Conference Dinner. I quickly learned that there is no hanging around the edges of an AGOSCI Conference Dinner dance floor.  Within seconds of finishing your last mouthful of food, the dance floor is heaving and it was the most honest representation of society that I have ever seen. We were dancing using our arms, legs and wheelchairs.  We were chatting using our voices, AAC devices and sign. Our ages ranged from 7 to 70 and no one judged, no one was excluded and everyone danced with a happy abandon that can only be the result of being in a truly inclusive environment (and possibly a few glasses of wine, ahem). I felt the prick of tears sting my eyes as I considered that this was just one dance floor in one place. What about all the other dance floors? And whilst I am sure that there are dance floors like this dotted all over the world, I felt a renewed determination to advocate, plan and hope for the type of world that I want my children to grow up in.

This conference has taught me so much more than I could possibly have imagined. From the expertise and knowledge of the speakers, I am committed to ensuring that literacy is a key part of Harry’s learning.  From the honesty and dedication of AAC users and their families, I am hopeful for a bright, challenging and fulfilled life for Harry. And from the tears, passion, accountability and awesome dance moves of everyone who attended, I know that Harry’s future will be a disco-lit dance floor of inclusion!

A Mum at AGOSCI – Day 1

Inspired. Amazed. Intrigued. Excited. EXHAUSTED.

And that’s just a bit of what I’m feeling after day 1 at the 2015 AGOSCI Conference.  AGOSCI describes itself as an inclusive group interested in enhancing the participation of all people with complex communication needs. Their vision is for people with complex communication needs to participate fully in all aspects of life. No surprise then that I, as the mum of an AAC user, am a fan! AGOSCI members are speech pathologists, support workers, teachers, aides, AAC users, parents and more.

The top 4 messages that I felt were repeated to me throughout the day were:

• ALWAYS presume competence
• AAC users need access to robust communication systems all the time
• Communication partners are vital to success
• Model model model

Now, to those of us actively supporting our children or clients and believing in them and their potential to be autonomous communicators, this may seem pretty obvious. But, unfortunately we aren’t (yet) the norm.  There are so many children and adults out there who do not have access to comprehensive communication systems.

We were almost one of those families, but luckily we were introduced to a wonderful speechie who chose to presume competence and model the PODD without any expectations from H to prove that he was ready for it.  But that’s a post for another time.

Karen Erickson, in her opening keynote address, made an incredibly inspiring and passionate speech about the importance of literacy in AAC. It was inspiring enough to earn her the hashtag #KarenEricksonRocks on Twitter! As she explained, AAC is much broader than just a voice output device. It is all of the aided and unaided modes that people use to communicate. Thinking about Harry, that is so true and is what I am celebrating in the Harry says… posts. H uses his voice, key word sign, gesture, facial expressions, a PODD book and an iPad to communicate with us. But in order for him to say precisely what he wants to say, he needs to be literate.

As Karen said, an AAC user can learn hundreds of symbols in their communication system, so 26 uppercase letters should be pretty easy. Goosebumps.

In Jane Farrall’s session, AAC: Systemic Change for Individual Success, she stated the importance of providing every individual with complex communication needs with a communication system that enables their right to communicate.  Yes, their RIGHT to communicate. Further to that, she spoke about the pivotal role that parents and all communication partners play in the success of an AAC user. Parents that instinctively know the principle of the least dangerous assumption and presume competence whilst making sure that communication is ‘all day every day’ will see the most success.

And that was certainly on display in the lecture from a wonderfully devoted mum who, after attending a previous AGOSCI conference, decided to challenge the presumption from teachers that her daughter was illiterate and take matters into her own hands.  After the introduction of a robust communication system and by incorporating literacy into her AAC, she is an excellent communicator with ever-improving literacy.  And I saw how well all their hard work had paid off, as I had the privilege to chat with her briefly.

Jane also spoke of the importance of learning from AAC users, which Janelle Sampson presented on earlier in the day about her AAC User Lecture Series. Who better to help us understand the complexities of being an AAC user, than AAC users!

Another mum who presented spoke of having open expectations of her son and how, when he is unsettled or throwing a tantrum, she uses communication to work through the behaviour with him.  Whilst the easy thing would be to just scoop him up in her arms and cuddle him, she chooses to empower him to ‘use his words’ and to, therefore, become responsible for his behaviour.

And as Jane had said earlier in the day, behaviour doesn’t get in the way of  communication, behaviour IS communication.

In the final workshop of the day, a speech pathologist spoke very honestly of the incredible responsibility that she feels to ensure every new client she meets is able to become a competent communicator and find a robust communication system that’s just right for them.

Well, from a mum, I would like to say thank you. Thank you to all the speech pathologists, support workers, teachers, aides, parents, AAC users and carers who choose to take on that responsibility and ensure that our children’s voices are heard, no matter what form their voice may take.

And that was just day 1!