Our AAC Story Part 1: When I lost a bit of faith in my own profession.

I thought I would write a few blogs about where we have come from with AAC to give you an idea of how we come to be doing AAC in the way that we are, and to share some of our experiences of accessing support and services.

I suppose the first time I thought about AAC was very early on, when along with Noodle’s diagnosis we were told that of the people we know to have the same syndrome about 80% are non verbal communicators. At this point I began to think ‘Right then, I’ll probably need to brush up on my Makaton signing’. I don’t really remember thinking about picture symbols so much at that time. I knew we’d be on the ‘other side’ of Speech and Language Therapy services, and probably for a long time.

We had a very long wait for Speech and Language Therapy. On a report from one of her medical appointments just after Noodle turned 2 it states that we have still not been seen by the Pre 5 specialist Speech and Language Therapist (SLT) for communication needs (we had had an eating and drinking assessment but the therapist who provided that had no remit to advise on communication). On the same report I’ve just referred to it suggests that this lack of input was due to us seeing a play therapist for early interaction and attention support, in the intervening years I don’t think I’d ever really appreciated that one was instead of the other. I read that now and frankly it makes me a little cross. It very possibly did then but it’s unlikely I’d had the energy to challenge it! In the end by the time we were seen by an SLT who worked with children’s communication it was two months before her 3rd Birthday.

I was still excited and hopeful that we would see an SLT and we would be able to work together. I pictured the therapist bringing knowledge of supporting children with needs like Noodle’s along to the table and me bringing my knowledge of Noodle. We would work together and implement the best possible evidence based support for her. This was my vision, sadly this was not realised but more on that later.

By this point I had tentatively begun some interventions myself. I was still telling myself (kidding myself??) that I would NOT be Noodle’s SLT. I’m her Mummy and I need just as much support as everyone else. I couldn’t let nothing happen though. I was very lucky to attend an excellent toddler group for children with complex needs. On the same site there was a team of SLTs who, while not involved in the toddler group themselves, were happy to chat to me as an SLT and point me in the direction of the latest literature on early interventions, AAC and learning disability for me to learn for myself. I’d spent most of my career working with people who stammer so really although I was by profession an SLT my skills were very far from what I needed to support Noodle.

I discovered the work of Gayle Porter and Linda Brukhart challenging the representational hierarchy (see below). I read about modelling AAC, aided language stimulation and robust language systems. I also knew that children should not have to prove a certain level of skill to be offered AAC. This all provided a big challenge to the way I’d been taught about AAC and my practice in the early part of my career. I took on some but not all of it. We began using core vocabulary PCS (Picture Communication Symbols) symbols, just two; “More” and “Stop” (in my mind any more than this was too many symbols) and gradually I began to trust the process more and used a 9 cell core vocabulary board and some topic specific sheets for modelling. Alongside this we started using a single message communication aid (a Doozy) for recorded messages and as a switch for some adapted toys and the TV.

It was about this time that we had our first SLT appointment. I had spent two years learning about how to help, investing time and money into learning. I knew that best practice was to introduce AAC systems early, as early as possible, as soon as there was an idea someone might need one. I knew that the idea that we need to learn objects and photos before picture symbols had been challenged over and over in recent literature and that to expect this progression was no longer reasonable.

Sadly however the therapist we had an appointment with was not familiar with what I had read. She discussed using photographs to label objects and rooms rather than symbols, she wanted Noodle to be able to match a sock to a photo of a sock to demonstrate…. well actually I’m not sure what she wanted Noodle to demonstrate but I don’t think it had much to do with communication. She thought that the symbols on the symbol board (you, me, more, stop, like, don’t like, go) were too abstract and there were too many of them. I showed her a video of me modelling stop and more with Noodle using symbols while we were looking at a book, she did not see evidence Noodle could understand the symbols and therefore dismissed what I’d done as too complex.

This is the 9 symbol core board we were using for modelling.

I began to doubt, I doubted myself, I doubted what I’d read but most of all and worst of all I doubted Noodle. She was not quite 3 and I was almost ready to stick to photos, limit her language opportunities and go along with the status quo. I was exhausted and bitterly disappointed. My picture of a wonderful relationship between a parent passionate about communication development and an SLT with specialist skills had been torn to pieces.

The advantage however of being an SLT is that I know quite a lot of SLTs. I reached out to my friends, asked their ideas and thoughts and got lots of listening ears and support. One comment always resonates with me now ‘I think you’re right to challenge Noodle’s SLT.’ And of course that’s right, it’s right for all parents, we should all feel able to challenge and question any professional.

It made me feel very sad that we were, I felt, very poorly served by SLT services. I love being an SLT. It’s a wonderful profession and we have so much chance to make a real positive impact on people’s lives. I was pretty devastated that through structural issues (SLT time was very limited) and lack of evidence based support my own first experience of SLT intervention was so far from my vision of our profession at it’s best.

Noodle saw this SLT again maybe 4/5 times over about 18 months until she had just turned 4. During that time Noodle went to a specialist nursery who worked really well with us and began to implement symbols and Makaton signs. I continued to learn and develop my own knowledge and skills around AAC but more importantly my confidence as a parent to challenge professionals. The therapist and I essentially agreed to disagree.

We got SLT support when Noodle started full time in school just before her 5th Birthday. Luckily now I have the relationship with Noodle’s SLT I’d hoped for. She is skilled and experienced and we work through issues and decisions together, she is optimistic about Noodles potential and willing to expose her to a robust symbol language system.

In “Our AAC story part 2” I plan to talk through some of the really practical things we did during that first ‘no SLT’ year.

Footnotes:

This is the article by Gayle Porter and Linda Burkhart

https://lindaburkhart.com/wp-content/uploads/2016/07/representational_hierarchy_draft.pdf

This article by Romski and Sevcik dispels some myths about when children can (and should) access AAC.

https://depts.washington.edu/isei/iyc/romski_18_3.pdf

What is the representational hierarchy?

When I went to university we learned about this and it was in wide use when I began SLT work. The idea is that there are different ways to show something else and that these ways develop in an order something like this:

Objects > Photographs > Line drawings (like symbols) > Written Words

The assumption is that to understand a symbol you must first be able to understand objects and photographs and how they match together. This is problematic in many ways but one is that many of the early messages we want to convey aren’t just the names of things, try finding a photograph of ‘more’. Another is that objects are large and take a lot of moving around. Another that if you learn that a photo of your usual cup means ‘cup’ what do you do about other cups that look different. The biggest problem with it seems to be there’s no research to back up that this is the process we need to go through to learn language. How many typically developing kids need to see pictures of their bedroom before they learn a word for it?

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7 Responses

    • Thank you for reading it and taking the time to comment. It’s affirming to know that people appreciate the sharing. Hope it helps you in some way whether as a parent or as a therapist.

  1. Oh dear. You’re wonderful, but it’s so sad to read that there are still therapists out there who haven’t moved beyond the 1980’s – certainly not into the 21st century!

    BTW – something you’re probably doing already – read to Noodle lots – every day. No-one every harmed a child by reading to them. Sharing books provides so many inputs, auditory and visual, and so much stimulus for language – yours and Noodles – and leads to literacy.
    I have wonderful video of 8-week old twins (YES, 8-week) lying on their backs, listening and following page-turning as their mother reads to them. At 8-months one twin is looking at a board book while the other twin turns the pages.

    • Hi Rosie,
      Oh we do read a lot. I think one of the first motor skills Noodle learned was turning pages! 🙂 We have so many books in the house I’m running out of space!
      I do think that some therapists don’t get the opportunity to develop or deliver services where evidence based best practice is the focus. I’ve certainly been lucky to work lots of places that have helped me develop those skills.
      Jo

    • Thank you for sharing this. I am also an SLT with a 4 year old who has a complex medical history, communication difficulties and developmental delay. It’s been strange to be on the other side of the therapy relationship! I’ve also found that second guess myself a lot and have been so focused on being positive that I perhaps am in denial at times too. It’s really helpful to read about your experiences.

      • Hi Amar, I’m so sorry I didn’t see this sooner. The last few months have been really challenging for us, we’ve needed lots of SLT help for dysphagia, I feel like Mummy vs PEG at the moment! You make a good point about second guessing… I think I spend a lot of energy wondering if I’m doing the right thing/ enough.
        I’m so glad it’s been helpful for you to read. There is a Facebook group now for SLT parents if you’d like to join. Reply here abs I’ll find a way to send you the details.

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