Developing Symbol- Based Communication Books

Access to Communication and Technology (ACT)

Contents

What, who, why, when , how Pages 3 – 7 Assuming potential Pages 8 - 9 Access to words Pages 10 - 11 Efficient and accessible Pages 12 -14 Show how Pages 15 – 17 Never finished Page 18 Trouble shooting & Top Tips Pages 19 - 20 Referral to ACT Page 21 Websites & references Page 22 How to print this booklet Page 23 What is a symbol-based communication book?

In this leaflet we use the term ‘symbol-based communication book’ to refer to: • paper communication books • that use symbols alongside text (written word under / above the symbol), • are organised in a systematic way, • develop the user’s language skills in a way that matches typical language development • Includes alphabet and numbers 0-10 at least • and are used alongside the person’s other methods of communication e.g. gesture, facial expression, natural or synthesised speech Communication books come in different shapes and sizes – here are some examples: Buckley, K (2017) Developing & Using a Communication Book. ACE Centre

Porter, G. (2007) Pragmatic Organisation Dynamic Display. Cerebral Palsy Education Centre Latham, C & Buckley, K (2008) Look2Talk. ACE Centre Advisory Trust 3 Who might use a symbol- based communication book?

• Children, young people (YP) or adults might use a communication book when they find it hard to use speech or cannot use speech at all • When it is hard to use speech we call this Complex Communication Needs (CCN). This term is be used throughout the leaflet • People might use symbols because their literacy is still developing or because literacy may be a challenge for them or perhaps was never taught effectively, and as a result the person cannot use text or spelling alone to augment their communication • You may also see the term AAC used. This stands for Augmentative and Alternative Communication and is a term used to describe the different communication methods that may be used alongside or instead of natural speech

Images from: Put link to ACT video here

4 Why introduce a symbol- based communication book?

When supported well, a communication book with a robust language content can: • Help the user to have control and autonomy in what they want to express – to say what they want, to who they want , when they want - as we might expect for their language and age • Help the user be to express thoughts, ideas and needs, have fun chatting and socialising or give instructions, disagree, reject and refuse (see mind map below) • Give the user access to a wide vocabulary • Help the user to understand and use new words and concepts • Give the person access to language structure for building sentences • Help make communication exchanges more efficient for the person and their partner, reducing frustration • Support interaction skills, such as turn-taking and joint attention for both the user and their communication partner

From: Birmingham Community Healthcare NHS Foundation Trust, Access to Communication and Technology, 2017. Reference; Kate Ahern- Motivate, Model, Move out of the Way Project

5 When is the right time to introduce a communication book?

It is often thought that people need ‘pre-requisite’ skills or specific difficulties before introducing a communication book. You may have heard, for example:

Communication books should The person needs to understand not be used until all other what the symbols mean before methods have been tried introducing a communication book

Communication books are too People with limited attention complex for people with would not be able to focus on a profound learning difficulties book

If a person cannot see or point If the person is not motivated to then they won’t be able to use a communicate they aren’t ready communication book for a communication book

However, evidence has shown that if a communication book is robust, supported and designed for the person’s needs, it can be an effective way of augmenting communication regardless of ‘requisite’ skills (Romski & Sevcik 2005). It is less dangerous to assume that everyone has the potential learn to use language than to assume that they do not

6 How to develop a symbol- based communication book

A robust language communication book supports the user on a journey that matches typical language development. This means that: 1. We assume that the person has the potential to develop communication and language skills 2. We ensure that the user has access to the types of words that help them to develop and generate language and to communicate in a way that is as clear, specific, independent and socially valued (i.e. using ways of communicating that others will respond to positively) as possible 3. We ensure that the person can access their language as efficiently as possible 4. We show the user how to use their book, using all of the principles we follow for people developing language in more typical ways 5. The work is never “done”! We never stop adding or building on the person’s language or communication book. With these principles in place, the communication book should enable the person to express :

what I want to say, to whoever I want to say it, whenever I want to say it (Porter 2007) And be listened to and understood

7 1. Assuming potential

When babies and children develop speech, language and communication, we act in certain ways. We: • Talk back when they babble and chat, even though the words are not recognisable • Use new words all of the time to describe what they are doing, seeing, looking at or pointing to • Talk, even though they may be looking away • Talk to help them when they are upset or distressed • Help and model back when their communication is unclear • Carry on using new words and sentences even when they haven’t yet mastered familiar words and sentences • Adapt as they grow, always keeping a step ahead e.g. from single words to short phrases to complex sentences • Focus on the quality of the interaction and having fun! • Help them to understand social rules, such which words might be rude or when it is OK to interrupt (See https://www.chickadee-aac.com/sites/default/files/chickadee-aac-language- development-model-revised-may-4-2019_0.pdf) We do these things because we assume that the child will, one day, use language back to us in the same way. We don’t try to “teach” language, it is simply part of the child’s everyday experience.

8 1. Assuming potential

We should make the same assumptions for people with complex communication needs as we do for people learning language in the typical way / with natural speech.

We need to use all of these same strategies with a communication book, matching the typical language learning process, using and pointing to the symbols in a book alongside our spoken words. If we don’t do this we are taking away that person’s potential to learn language.

We can never really know what a person is capable of until we provide them with the opportunity to

learn and show us (Porter 1995)

Statistic from Jane Korsten – QIAT Listserv 2011. Photo by Rachel Langley, AAC Specialist 9 2. Access to words

The words in a communication book are very important. We need to be mindful not to “gate keep” language, as we don’t do this for children developing speech in the typical way. A robust communication book has:

Lots of words! Core vocabulary Fringe More than you (the 400 words vocabulary think, and always that make up (lower ahead of the 80% of what we frequency child / YP say) words)

Words for Words & An alphabet different phrases, and numbers functions personalised & page, even if (rejecting, fun for the the person is instructing, person’s not yet using commenting) interests & age these

Often the parts of language are colour coded using the Fitzgerald key (Fitzgerald, E. 1949) to support learning and navigation:

10 2. Access to words

Example of a core vocabulary page: Clay (2018). Watch this video about core: https://youtu.be/vB_brGVYg7w

Example of fringe vocabulary (fringe words on the right hand side):

You will notice that the pages contain a mix of verbs, adjectives and nouns. This range is essential for language development and sentence building. Identifying words for a communication book is a team sport – involve all key people, including the user themselves! 11 3. Efficient & accessible

Communication books (and voice output communication aids) will always be slower than using natural speech. We should do our best to help make the communication book as easy and efficient to use as possible. This means it should:

Be organised in a Be accessible for the systematic way e.g. person based on their with words physical needs e.g. arranged by how their body moves, category or activity how they are positioned, the support they have

Be always available

to the person (out, Have instructions for: visible and This belongs to… “requestable”) Getting help… If found… How I use my book Have contents pages and double sided tabs to help with Have symbols that navigation stay in the same place i.e. they can’t be moved around 12 3. Efficient & accessible

If the person cannot point to a symbol directly with a finger, could they use a whole hand, fist, elbow or eyes to point? Alternative access options could include (from https://acecentre.org.uk/resources/):

Larger spaces Combined access (user points to the block then the partner lists through the options)

Colour encoding (user looks at the block then colour) Partner assisted scanning (partner lists through the words - with or without symbols - and the user indicates ‘yes’ with vocalisation or gesture when the person reaches the desired word 13 3. Efficient & Accessible

Consider ‘ease of use’ and presentation of the communication book. Getting the ‘small’ things right can make a big difference to how the communication book is valued by the user and those around them.

Size & Consider visual or motor needs orientation A4 / A5 / landscape / portrait? Portability Add a carry strap / handle (scooter straps work well or look on www.abilityworld.com) Polypockets are lighter than laminate sheets. Consider lightweight, waterproof laminates Binding Ensure rings and binders are reliable. Loose pages are very frustrating! Consider numbering pages or using a treasury tag as a back up to clasps Page turning How easy is page turning? Could page spacers or larger / thicker tabs be used? Positioning Consider any visual or motor needs Useful tools include writing slopes, frames, cook book stands, easel folders, dycem and matt laminate sheets (to reduce reflection) Appearance We all like things that look good! Consider photographs, stickers, favourite characters or a sleek folder – personal for each person 14 4. Show how

Just like with typical language learning, we need to show the person how to use language, using their own system. This is called modelling or aided language stimulation. These terms mean slightly different things but essentially if we are expecting aided / symbolised language to be used ‘out’ by the person, we need to provide aided / symbolised language ‘in’. We need to ‘speak the same language’. Watch this video: https://www.youtube.com/watch?v=flFNMky22-U

We also need to create reasons and Means of communication opportunities for communication (communication book, (Money & Thurman 1994) tapping gestures, facial into the persons’ interests and expression, speech) everyday experiences and partners. The book needs to be modelled by Opportunities to Reasons to communicate everybody around the person communicate (in different (greet, request, places, at different inform, times & with negotiate) different people) 15 4. Show how

Here are some top tips for getting started with modelling: • Key words: You don’t need to point to every word. Show the most important words and say the others e.g. “I think YOU LIKE this” • Core words: Core words can be used in lots of situations. Get to know the core page first, then model fringe words later • One step ahead: Scaffold language by adding to what the person points to e.g. if they ask for “more”, you could add “more JUICE” • Make mistakes: It’s okay to make mistakes as it shows the person that it’s okay for them to make mistakes too , and shows them how to problem solve. “Babble” (pointing to symbols that may not seem relevant) is also fine. Simply respond to babble as meaningful. • Think out loud: e.g. “Hmm, I’m looking for the word ‘slimy’. That’s a describing word so I need to go to the DESCRIBE page” • Have fun! Start with the person’s interests: If the person loves cars, describe them as you play. “This car is FAST, but this one is SLOW!” • Allow time & take turns: Pause to show the person it is their turn. Always allow longer than you think. Count to 10 in your head. • Use comments instead of questions: Instead of saying “what is it?” say “It’s a CAR”. Instead of saying “can you find BALL?” show them where it is. Use the ‘rule of thumb’. Start by saying four comments for every question – the thumb is your question, your fingers are comments!

Adapted from https://thinksmartbox.com/new s/simple-aac/introducing-simple- aac/ 16 4. Show how

Here are some useful ‘Dos and Don’ts’

Created by Lauren Enders with content by Lauren Enders, Pat 17 Mervine, Melissa Skocypec, & Cathie VanAlstine - February 2013 5. Never finished!

There is no such thing as a ‘finished’ communication book. Communication skills and needs change over time (Buckley 2017)

“Success” with a communication book looks different for every person and can take years and years. The book and the support the person receives need to grow with the person over this time. This means that we: • Add words to the book ahead of the person’s language skills (the book grows with the person) • Or we start off with a HUGE book and make sure our modelling stays ahead of the person’s language skills (the person grows into the book) • Add words that meet the person‘s changing interests and needs e.g. new people they meet, new activities, TV shows & music, health needs • Model literacy and numeracy • Model new ways of using the book and new skills to meet social and strategic demands e.g. ways to say ‘I made a mistake’ or ‘Hold on’ • Ensure there is support at transition points • Keep reviewing the goals of the person so that the book and support they receive meets their needs When books do not grow, they are likely to lose their value to the user and the team around them

Top tip: Leave spaces or blank pages in the book so that new words can be written / hand drawn in. OR stick in pictures from magazines

18 Trouble shooting

Is the book with Set up habits for taking the book to different places – the person? home / school / college / day centre / clubs Is it out and Take the book out of the bag! accessible? Ensure it is positioned correctly for the person Can the book be Have ways for the person to signal when they need it requested?

Is it being Does everyone around the person know how to use and modelled? model the book? Is there an instructions page? Can the team access training, videos or handouts to help? See: https://www.aacscotland.org.uk/modules/ and https://thinksmartbox.com/simple-aac/ Is the person Ensure the person’s communication attempts are not listened to? missed by those around the user (see dos & don’ts) Are there Ensure there is space to list or add new words enough words? Set up systems or habits for adding these words Can you allocate one or two people for this job? Is communication Is the book being used in ways that are interesting and interesting engaging and not just for ‘teaching’? enough? Are there words in the book that relate to the person’s changing interests? Can the book be ‘jazzed up’ or made to look more ‘grown up’ with photos or a smart folder? 19 Top Tips

Rob - Dad to Connor who is 19 – gives his top tips: HAVE ACCEPTANCE! HAVE FUN! It’s Ok if it’s not a perfect sentence. Really just play. Praise and He is saying what he wants to say. high five. Even if only 1-2 It won’t be exactly like we talk, but words come out. that’s Ok too. There are lots of other ways he communicates– AAC is the added GROW YOUR SKILLS! bonus. Give him more gaps to say stuff GIVE IT TIME! Loosen the pressure off to use it. Little by little more words will Let him copy only if he wants to. come out. Even if it doesn’t that’s Model more outside the home OK. Take the good words and e.g. hairdressers. communicate back. Be a good listener. It might take months or years to use to his potential HAVE ALL THE WORDS! That really makes the difference. Watch “This Don’t limit the words. AAC life: Even if it looks like a lot keep them. Dad-to-Dad” Otherwise you don’t know how far the child will go. https://youtu But to get to that it is a lot of steps. .be/I- Don’t worry if he does not use all the words. Your 2acw9I4uw child will get there if you model. 20 Referral to ACT

• The NHS-England criteria requires that people referred to the service must be using paper based / low tech communication systems before referral . See http://www.bhamcommunity.nhs.uk/patients- public/rehabilitation/act/ • This shows us that the team understand AAC, can work together and understand the importance of modelling, giving someone the best chance of going forward well with powered AAC as well • In addition powered AAC is often effortful and can’t be used all day every day and in lots of situation such as in the bathroom, on the beach etc. It can break and go flat so paper based is also needed alongside for the long term. See www.facebook.com/wespeakpodd/photos/a.949695768434221.107 3741828.948559905214474/1116185355118594/?type=3&theater • Contact us on the Referral and Helpline - open MWF 9am to 4pm 0121 466 3028 for further advice

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21 Further resources

Websites: • i-ASC project https://iasc.mmu.ac.uk/resources/ • ACE Centre https://acecentre.org.uk/ (also on facebook & youtube) especially https://acecentre.org.uk/project/aac-books/ • Praactical AAC https://praacticalaac.org/ (also on facebook) • Wespeakpodd (facebook and youtube only) • Uncommon Sense (also on facebook) • Ryan’s Voice through AAC (facebook only) • Hold my words (facebook only) • Lotsacomptons (facebook only) • PODD Europe (facebook only) • AAC Charity Communication Matters https://communicationmatters.org.uk/ (also on facebook) • Simple AAC Blog https://thinksmartbox.com/news/simple-aac/introducing-simple-aac/ • 1voice https://www.1voice.info/ References: Buckley, K (2017) Developing & Using a Communication Book. ACE Centre Clay, D(2018) Supercore Manual. Smartbox https://thinksmartbox.com/news/resources/get-started- with-super-core/ Fitzgerald, E. (1949) Straight Language for the Deaf. A System of Instruction for Deaf Children. Alexander Graham Bell Association for the Deaf Money, D. and Thurman, S., (1994) Talk about communication Bulletin of the Royal College of Speech and Language Therapists April 12-13 Porter, G. & Kirkland, J. (1995) Integrating Augmentative and Alternative Communication into Group Programs: Utilizing the Principles of Conductive Education. Melbourne: Spastic Society of Victoria Porter 2007 Romski, M. & Sevcik, R. (2005) Augmentative Communication and Early Intervention Myths and Realities. Infants & Young Children Vol. 18, No. 3, pp. 174–185

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Version Date: Number: 1 Sept 2019 23