Pragmatic Organisation Dynamic Display (PODD): the clumsiest mouthful of words meant to be a communication system, or a revolutionary system of communication for the speech impaired?
Among the debates eternally raging in my mind, the one whereby I choose to adopt or rubbish a new therapy has to be the most challenging. Every week, I am tempted by new therapies, equipment and advice.
The people championing these can seem evangelical. There is often no quantitative research to back up their theories and most of what they show as proof is circumstantial. They are always extraordinarily kind and concerned, but also defensive to an extreme. They say things to me like, “Our therapy is very controversial so don’t be surprised if you read negative reviews.” Or, in the case of PODD, “Your speech therapist will probably never agree to this,” without having met her (and she is one of the few people I would consider a real expert).
But, none of that necessarily means the therapy works or not. I could base all my decisions on substantiated research, but then, there is very little known about brain damage in babies. Almost nothing. Or, I could just base my decisions on my gut instinct – but then, my gut instinct told me to finish half a crispy duck with my husband tonight that was meant to feed four. It felt right at the time.
All of this feeds the biggest anxiety of all – that I will miss out on the one thing that could have really, genuinely helped May. To the evangelical, the simple answer to this is, “Trying it can’t hurt.” This sounds sensible. But, how sensible is it to spend up to two years before you see a result (at the long end according to the PODD instructor) because it can’t hurt?
Besides, it can hurt. There are only so many hours in the day. If I spend a good portion of that on a communication system that never helps May communicate, I’m not doing her any favors.
As far as I’m aware, PODD works as follows:
You use a laminated flipcart that has the dimensions of a normal sheet of paper (A4 in Britain). It is two or three inches thick and weighs as much as a small truck. You carry this around with you where ever you go and convince everyone you know to use it. (When I asked what the repercussions would be if I couldn’t convince everyone at May’s nursery, for example, to use it, she told me I must convince them. Full immersion, like with a foreign language is necessary.) On each page are nine-symbols (as the child gets better, the number rises and the book becomes lighter) and the pages are categorized under main topics like ‘Places’ or ‘Food’. The object is to move through each symbol on a page, being guided by the book’s instructions to a new page if necessary, until you find the one thing that a child wants. You do this for every action, every decision, slowing communication down and making it simpler for them to understand.
The direction of the conversation is in the hands of the child. They are no longer passive reactionaries, but active and independent thinkers. I can’t help but like the sound of that, if it works.
I can definitely see where it would work with the children in May’s Small Steps class, but May? I’m not sure. And, of course, there is no research I can find to help me make an informed choice.
If you use PODD, especially with a child with Cortical Visual Impairment (CVI) please get in touch.
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Since I posted this, it has been niggling at me that perhaps in suggesting an “evangelical” element to some therapists, that I’ve implied that the woman who met with me and then set up a session at Small Steps for parents about PODD, wasn’t helpful. My concerns about adopting new therapies that I can find no research on (like PODD) are not reflective of her.
So interesting Stacie. I would bet you are bombarded by all the “programs” out there. Someone who has to convince every reputable person that their system works worries me. I would trust the ones you trust and ignore the rest. Also, I am curious if anyone has suggested sign language. I have had a few friends with kids that are brain injured use it quite successfully. I love that you are willing to put forth everything and anything to help May. You are doing what you are suppose to be doing.
It’s an interesting concept, and your sarcasm about it is definitely earned. But it kind of reminds me of some of the “packages” that would come along as I tried to homeschool my children.
It couldn’t hurt too much to attempt to learn their free sample, and then be willing to blog about it if you have meaningful results. You can be a special needs product reviewer, for a small fee. I’d be curious as to what age kids can make connections between visual cues and meaning. If that part of her brain is working, it might be like those babies learning to read on tv…they recognize the shape and can respond as asked. But do they know what the shape actually means, until what, preschool age?
I like the idea of trying the free sample first. That being said, I believe any focused time spent with May will be productive, whether in direct response to the communication program or in spite of it. When I began teaching first grade, I maintain the children learned in spite of me…but they did learn.
I have no doubt that May’s progress is due to a combination of her determination, your love and tears, all the stimulation that motivates her, and the miracle she is.
Keep the faith, daughter and granddaughter,
Love you both,
Mom aka Grandma Barbie XOXOXO
I agree with your Mom. Go with May’s motivations. Try it out with her. She’ll let you know if it’s a goer.
If it engages her, then it will be useful. xxx
I just went to a CP conference here in Baltimore and my husband and I were very fortunate to wind up sitting next to the keynote speaker during the afternoon. Presenters were going over augmentive communication. As soon as this portion started, this doctor leaned over to my husband and said…”Do not waste your money on these devices. Not that they aren’t good. But by the time you spend your money on them (at 10k easily), you can by the iPad and the app that runs these for $1 or so”. So even though this PODD system is different it takes a lot to “run”. There are many great apps for the iPad. I’m definitely getting my son one. Check out this blog: http://babieswithipads.blogspot.com/
Hi Stacie,
We’ve used a PODD book with my 6 year old son S since he was 2 or 3. He does have significant impairment to his communication because of his athetoid/ataxic CP. He does not have a visual impairment.
We love the PODD system. It opened up major windows of communication for him. He uses his book all the time and knows where to find symbols better than I do. These days he even creates sentences with it.
Yes, it helps if others around him use it. But that’s because he’s got things to say and if they can understand how to use it they can help him facilitate what he wants to say. His kindergarten team know how to use it, his therapists know how to use it, his immediate family know how to use it, we HOPE his teacher and aide when he starts school next year know how to use it. But there’s lots of people around us who don’t know how to use it. That’s life :-).
We didn’t start out with the book straight away. In the early days we used Aided Language Displays – which are just one page sheets which focus on a particular topic – e.g playing with playdough, brushing your teeth etc. These are sort of the precursors to a PODD book and much more simple and contained. There is a shopping mall not far from where I live which is trialling having these language display sheets available in every store – with the aim of being used by people with disabilities and people who perhaps can’t speak English and need a visual representation to help them communicate.
To me, the real value of the PODD book and the display pages was that it showed my son that he could communicate, even if he didn’t have the words to do so. My goal in getting on board with this system was to encourage him to recognise his own ability to communicate and be understood.
These days, my son also has a Dynavox and an iPad. The Dynavox and iPad (proloquo2go) programs are both set up to reflect the page set of the PODD book. In that way, there is continuity with his communication systems. The advantage of the electronic systems is that he doesn’t need someone else to facilitate it and they are easy to add to. The advantage of the book is that it encourages interaction and it’s a hands on approach that doesn’t require charging and can’t break down :-).
I value my son’s PODD book highly. When he heads off to school he will be taking 2 copies – 1 for him and 1 for his classmates to interact with, in the hope they will also want to communicate with him using it.
I am not sure about the severity of May’s visual impairment. It could be that this would be a big factor in deciding whether this was right for you. But, I thought I would share our experiences anyway.
I am happy for you to throw any other questions my way too 🙂
Dianne
Thanks for this! Very useful Dianne – exactly the kind of response I was hoping for from someone who has been using it. Like you said, I’m not sure how much May’s visual impairment will stop her from accessing PODD. I’m going to try out the simplified version with May and see how we go. Update to follow after a month or so.
You’re welcome Stacie. As I said, feel free to throw other questions my way too.
Good luck with it all! 🙂
I know a boy with CP who is learning to use IPad application to communicate with his parents and he is having fun while at it. Checkout Zach’s story at http://www.exceptionalfamilytv.com