Mummy vs AAC

I AM JO, THE MOTHER OF SEVEN-YEAR-OLD LUCY, AND WE HAVE WORKED HARD THROUGHOUT HER LIFE TO SUPPORT HER COMMUNICATION SKILLS. LUCY HAS A RARE CONDITION CALLED EMANUEL SYNDROME. ALL PEOPLE WITH ES HAVE SOME DEGREE OF LEARNING DISABILITY AND PHYSICAL DISABILITY, AND AROUND 80% DO NOT DEVELOP VERBAL SPEECH. HERE, I WILL SHARE ONE OF MY BIGGEST PASSIONS: COMMUNICATION USING ALTERNATIVE AND AUGMENTATIVE COMMUNICATION (AAC).

The term AAC encompasses many aspects of communication. In its broadest sense, it can cover things like gesture and writing, as well as more specialised forms of communication such as Makaton signing. Most commonly when people talk about AAC they are referring the use of symbols or written words by the person communicating, whether using paper or an electronic system; most people who use AAC have a range of tools available to help.

The method enhances speech development and does not delay or prevent it. AAC can support or replace verbal speech, which are respectively referred to as augmented or alternative approaches.

I am lucky to have spent my working life so far as a Speech and Language Therapist. I do not work in AAC myself, but through friends and professional connections I learned more about it and became a supporter of the method. In turn I now enjoy sharing my knowledge and experiences with others.

AAC is a long game, as developing the communication with a child with learning disabilities takes time. This inspired the name of my blog, Mummy vs AAC, because I love the approach but have also struggled with motivation at times. I kept focussed with the help of sharing and writing about my experiences, and this was particularly helpful during periods when I felt disheartened.

Lucy communicates in many different ways. You can tell if she’s happy or sad by her facial expression, and she’ll reach for things and people she wants – and she is very clear about what doesn’t want! Lucy really uses what she has available to her. We wanted to broaden her opportunity to communicate so we introduced Boardmaker™ picture communication symbols, and in November 2019 we began using an iPad with communication software to help Lucy’s communication even more.

There are a wide range of resources, apps and software available, so it is important to explore what is best for your child. We decided to use the Grid app by Smartbox on Lucy’s iPad.

When deciding on an app, we found it to be important that it has access to what is known as ‘core vocabulary’. Core vocabulary makes it possible to model, learn and use words across different situations.

To understand this concept, imagine two different sets of words for playing with bubbles. One set (set A) contains the words more, stop, look. The other set (set B) contains the words bubbles, blow, pop. Set B is only useful when you’re playing with bubbles but set A can be used for bubbles, building, reading, splashing in the bath or mealtimes. Lucy now always has some of this core vocabulary on anything she’s using. That means she is learning a small number of high impact words she can use in numerous situations and for lots of reasons. She uses this core vocabulary not only to request, but also to reject, comment and more.

Lucy’s Emanual syndrome means that learning takes a long time, and she needs to see the same word or picture several times over to be able to learn them. That’s why we use an approach called ‘modelling’ on her AAC.

Modelling involves demonstrating the use of chosen communication system (either on paper or device) when talking, and showing Lucy where the words are and what they mean. For example, if Lucy is pushing something away, I will point to the words not and want, while saying “Oh, you do not want that.”

I love using modelling to support Lucy. Seeing and hearing the language in use gives her the opportunity to learn to use her AAC in the same way we learn to use

spoken language. Modelling also makes me feel like I’m following her lead. We talk about what she’s interested in; it doesn't feel like therapy or teaching, but that we are hanging out together and chatting.

It’s important not to paint a totally rosy picture though. Communicating using AAC does take planning, and sometimes we just don't use the method. Sometimes Lucy might push the board away, or she might feel a bit overwhelmed from a sensory point of view. While I try and keep the AAC board available as much as possible, as parents it is important we give ourselves a break from time to time. We want to do everything, however, if the AAC board been pushed away, your child is exhausted and they just want to crash in front of the TV – that’s fine too. We all need time out!

As with early talkers, those new to AAC need to have the chance to babble and play with the device. This can be a lot of fun but can also leave me frustrated. For Lucy, this stage means that she will put lots of words together and play them over and over, with her face close to the device. Before I learned about AAC I might have thought that Lucy was only playing without understanding. While this might be partly true, by playing and exploring on her own, alongside modelling from us, Lucy is learning about the device, what it does and what it’s for.

SO WHERE ARE WE NOW?

I would love to be able to describe a eureka moment and say: ‘It was amazing! We gave Lucy the device and she chatted to us right away. She stopped nipping and grabbing us when she’s overtired, and instead used it to let us know what she was thinking.’

In reality, that didn’t happen. While in some wonderful cases AAC provision immediately gives people a voice, this is not the case for Lucy. Lucy needs to learn the language and skills she has acquired to use her AAC tools effectively, and she needs to do that just like any child learning language.

Looking at the process so far, I can confidently say that Lucy understands the symbols for some core words: definitely more and stop, and probably now and go. She has certainly used those words intentionally on a couple of occasions, and while there have been many times I wasn’t sure, I assume that she chose to use them. This is after two years of using the iPad app, and some years prior to that using simple paper layouts. Of course, when compared with typical language development, a child without any disability that impacts language development will start to say some single words around the age of 1 and then develop from there. In comparison, two to four words after two years of committed modelling on a language system may not seem like much – but in fact it is massive.

We are en route, heading in the right direction, and we’re excited to see how far AAC can take us.

You can get more detailed information on our journey at www.mummyvsaac.blog or follow us on Twitter, Facebook, and Instagram @mummyvsaac

It’s been absolutely amazing!!

I love this kind of adappve equipment It’s changed Thank you so much for my life your amazing and impaccul equipment! It enables me to scoop him out the cot and on to my lap safely and independently I can pick the baby up and place the baby back down myself, which is massively important to me

”It’s literally invaluable Thanks, so much It’s such a

Centrobed good i for nvenpon me, a disabled mum I can scoop the liile one out of the Cot

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