Updated: Sep 23, 2022
Welcome to our 2022 Speechless campaign.
This year we are kicking off with some amazing insight from 2 dedicated educators - Jenni and Lara - who went Speechless for Rett Syndrome last October, and are lining up to do it again this year. Read how they found the experience rewardingly not only personally, but professionally too.
How has your life been touched by Rett Syndrome?
Jenny: I am a teacher in Special Education. This past year, I have had the privilege to work with two young girls who both have Rett Syndrome. I have also worked with other young girls with Rett Syndrome in the past. I still think very often of these young ladies and their families.
Lara: I also work with students with Rett syndrome (and others who are non-verbal). Going speechless was a chance to deepen my understanding of what many of my students go through day to day using alternative methods of communication, such as PODD or sign.
Why did you decide to take on the speechless challenge?
Jenny: The challenge was an opportunity to ‘walk a mile in the shoes’ of the children I teach. Although I have just the two students with Rett Syndrome in my class, I have five students in my class this year who are non-verbal, and others who have communication disorders as part of other syndromes. With our school heavily invested in introducing PODD* across the school, this was a wonderful opportunity to really get to know my own PODD better too.
Lara: I saw the speechless challenge as a great the opportunity to step briefly into the world of those fighting Rett Syndrome and to see the world, at least partially, through their lens.
What was the hardest part of it for you?
Jenny: Here I need to confess I used more than just the one A4 page of visuals – I used the PODD book. I do think I would have found the challenge more difficult if I had to rely on just the allocated A4 page. But with a whole PODD at my disposal, I was able to make myself ‘mostly’ understood most of the time.
I think the challenge was harder for my family. Although by the end of the day they were more accustomed to my new way of communicating, I think they were glad when the challenge was over. As my daughter said:
"Who would have thought mum not talking, was even more annoying than when mum does talk!”
Lara: Interestingly, I found myself getting extremely flustered while using PODD and trying to rush through or take shortcuts so that the people I was communicating with wouldn’t be frustrated or lose interest. I was quite anxious about being an inconvenience or annoyance. To their credit everyone told me to slow down and take my time and they all actively ‘listened’.
Was any part of it easier that you thought it would be?
Jenny: Using the PODD book gave me a lot more options than the A4 page.
And I think, being a little practised in PODD I had some idea of what it was I was getting myself in to.
Lara: I’d estimate about a 90% success rate with getting my message across accurately using a combination of PODD and some pretty manic signing. Wearing a mask made it easier and harder because I couldn’t cheat and get people to try lip reading. For the most part everyone was so patient with me and gave me plenty of time to go through the PODD pathways.
What did you learn about Rett Syndrome through this experience?
Jenny: I learnt a lot through taking on this challenge, but two things really come to mind:
My family tried to guess what was in my head … guess what it was I was trying to say. I found this annoying … it actually slowed me down, having to go back and start again. Moving forward, I would like to think I am not guilty of ‘guessing’ what my students are saying.
The PODD was useful to be sure – but even as robust as the ‘school issue’ PODD was, there will still gaps, and at times I could only very generally get my message across. It made me wonder if our students live in a world of generalisations – not being able to say specifically what it is they want. Eg: I’m hungry … versus “I’m hungry and I’d kill for some KFC!” ( NB: I don’t really want KFC )
Lara: Overall, while I found communicating simple messages reasonably successful what I really missed was conversation and it highlighted just how different communicating and conversing are. I missed sharing the minutiae of our days, the silly jokes, the “I love you”, the shouting at the tv, the heated political discussions etc.
It was also quite tiring because every communication interaction had to be intentional. There was no shouting from one room to the next, no calling out ‘can you make me a cuppa’ etc. I had to physically find the person I wanted to communicate with and they had to use their full attention to ‘listen’.
Any advice for someone considering taking on a speechless challenge?
Jenny: Do it. Zero regrets. I would do it again in a heartbeat.
I actually think a Speechless challenge would be a great practice for teachers and LSAs alike, each year, in our Special Ed environment. Next year, I might also like to add the use of eye gaze technology to my challenge. I really think the best way to get familiar with the technology, is to get in and use it. Then you really can appreciate just how hard these students are working .. and you are amazed all over again by just how amazing they truly are.
Lara: This was such a wonderful learning opportunity, it’s given me great insight into myself and those around me and I will take what I’ve learned and put it into practice in (and out) of the classroom. I feel both humbled and reinvigorated to put everything I’ve learned into practice and be the best communication partner I can be,
* PODD or Pragmatic Organisation Dynamic Display is a symbol based communication system used in many supported or specialist education settings. You can learn more at www.cpec.org.au/podd