PODD stands for Pragmatic Organisation Dynamic Display and in its simplest terms it is a book (and now app) with a whole array of coloured pictures/symbols, organised into pages that are easy to navigate and follow. It is used by people who cannot speak using their voices. It was developed by a woman who, saying I am thankful to, is possibly the greatest understatement I will ever make. Without her our future would look very bleak. In fact, our future would look much the same as it did on the day that our son was diagnosed with Angelman Syndrome and we heard the words,
“He will probably never speak and if he does it will be only one or two words.”
But now our future is full of hope, excitement and anticipation for what we might eventually hear him say.
Yes, he may never utter a word from his mouth.
No, he WILL speak and it will be a lot more than one or two words.
Since we attended a two day PODD training course last week, led by Rosie Clark, I have pondered how differently I may have felt upon learning that our son had Angelman Syndrome if his paediatrician had said something like this:
“He will probably never speak a word out of his mouth BUT… Listen up, I have something exciting that you REALLY need to hear.
He does have a lot to say and don’t you let anyone tell you otherwise. Don’t you dare listen to speech therapists and teachers who say that he needs to clearly choose between two objects before he can prove he’s ready for the next communication trick for non-verbal performing monkeys. Laugh in the face of anyone who tells you he’s too young and he’s not ready. Please, please ignore the NHS description of Angelman Syndrome and all of the depressing outdated online information. In fact, truth be told, we don’t really know quite how great his cognitive abilities are because people with Angelman Syndrome don’t score highly on regular tests due to the fact that they have a hell of a lot of other stuff going on in their brains and bodies which get in the way of their ‘performance’. However, you need to be aware that you are about to embark on joining the most exciting revolution of your life. If you want to. It’s a revolution which is only a few years old and which is only a few thousand strong but is made up of what can only be described as a bunch of crazies. Many of them are actually parents or professionals of people with Angelman Syndrome. They are crazies according to many but they are some of the greatest geniuses the world has ever seen and they see more potential in non-verbal children than anyone has ever seen. They will bend over backwards to show a child that he or she has a right to be heard and has something to say and if they can get the tiniest movement out of a child’s head to show ‘Yes’ and ‘No’ then they have effectively invited that child into our world (and us into theirs) and opened up every door they possibly can to the land of communication. These crazy geniuses will give you hope beyond your wildest dreams that you will hear your child speak and they will give you the skills, the motivation and the encouragement to go for it. They genuinely believe and between them have decades of video case-study evidence and real-life proof that teaching non-verbal children to communicate in a particular way, day in, day out, will not only reveal their basic needs and wants but will also open up a can of worms containing thoughts, opinions, preferences, ideas, jokes and dreams. Yes, your son has all of those inside him just waiting to come out and it is your joint responsibility to show the world just what he is capable of. Is that a revolution you might be interested in joining?”.
Gosh, let me think for a minute…
I honestly imagine myself hearing a speech like that and I wonder if I wouldn’t have melted into an anxiety-ridden, grieving wreck for the few months following his diagnosis. I imagine what it would’ve been like if I’d had some glimmer of hope that went beyond, “but it’ll be alright because people with Angelman Syndrome are always happy” (I’ll let you into a secret: they’re not). That was genuinely all we had to cling on to at the time but this, this would’ve been something else.
These crazy-geniuses literally have the ability to change lives. Gayle Porter, the woman who developed PODD in Australia many years ago started it all off and having developed the first PODD book because she saw a need and, more importantly, saw the potential in the children with Cerebral Palsy who were attending her clinic, refined and improved it then went on to make it accessible for a range of abilities and also for children who have visual impairments. She has spent years and years working with children, teachers, therapists and parents to show them how to use the PODD communication book in a systematic manner so that all parties involved use it in exactly the same way. The end result of decades of work can be different for each child. For some who, at first, could only bang the book at random with their closed fists and chew the edges of the laminated pages, they may discover and refine their pointing finger and may independently and autonomously use the book for communicating. For others, whose physical abilities may always be a hindrance to their desire to communicate, they may still need a partner to assist them but together they will find ways to speed up and improve the process.
Having heard stories and watched videos of babies through to teenagers using a variety of different styles of PODD books with an array of conditions and disabilities, it is hard to imagine a condition where it would be impossible for her to come up with a communication solution. Honestly, this lady is a genius! And as we sat there at the end of day 2 of the course, having heard success story after success story, we waited patiently for a story which we could directly relate to, one of a child with Angelman Syndrome. The final slide of the day came up and there in front of us was a testimonial from a parent whose daughter has Angelman Syndrome. A thank you list for all of the things that they now know about their daughter that they didn’t know before she used PODD, like the fact that she preferred spaghetti to pasta and that her favourite creature is a slug. A beautiful tale of her using PODD in the back of the car on a long journey to repeatedly say ‘I love you’ to her mum. Because she could. Because she wanted to.
Last week we spent two days learning the theory and being trained in the practical. We have taken away with us a skill set that we didn’t have beforehand but more importantly than any of that we are now inspired and hopeful that this thing is possible. In all honesty, we have no idea if it’ll actually work. We have no timescale and we have nothing to compare it to. Every case is different and every outcome is unique. And it is completely up to us as a family, as a team of people around Rufus and as his village if this is something we want to do. Rufus will be happy (most of the time) if we don’t do it. He won’t know any different. We haven’t yet told him about PODD. In fact, he could spend his life completely clueless about the whole concept. But, how could we possibly do that to him now? It honestly feels like we hold the can opener to the can of communication worms and we are not doing him justice if we don’t start it now. Let’s not pretend it’ll be easy. We will need to model PODD to him every single day in exactly the same way that you would talk to a baby every single day with the hope that one day you’ll hear its first word. Already we are buying software, tracking down libraries which hold the software compatible with the PODD templates, organising time to create the book, to colour print, laminate and bind the book and after that we will be carrying the book around with us everywhere we go (because it’s his voice and why would you ever leave your voice at home once you had found it?) and we will probably look like total wallies (or crazy geniuses) every time we get the book out to talk to him in a public place but…
why would you not?
And this is the question I’m faced with. I’m struggling to find reasons, after having cried tears of joy for every video of every child who communicated using a PODD book whose parents had previously been told, like us, that their child would never speak.
Okay, I found two reasons: It’s too much like hard work and I’ll look like a total wally.
But surely that’s just regular parenting, right?