an introduction to aac for people with rett syndrome and ... · michelle & abigail’s story...

An Introduction to AAC for People with Rett Syndrome and

other Complex Communication NeedsBy Abigail Davison-Hoult and Callie Ward on behalf of Rett UK

Adapted from ‘An introduction to AAC for people with Angelman and other Complex Communication Needs’ by Tracey Campbell on behalf of ASSERT

© Rett UK Registered Charity: 1137820. Company limited by guarantee, registered in England and Wales: 07339522 and in Scotland: SCO47369

This book has been adapted by Rett UK for people with Rett syndrome, their families and those who support them, with the permission of ASSERT (Angelman Syndrome Support Education & Research Trust – ASSERT 2016. Registered Charity (England & Wales) 1021882.

All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without the prior written permission of the publishers.

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❝We would like to say a big thank you to Tracey Campbell for collating and writing the original version of this incredibly useful document on behalf of ASSERT for the UK Angelman syndrome community. We have adapted it for Rett syndrome and hope that it proves helpful in the mission to help the people you support to access language, literacy and communication skills whatever their age. We strongly feel that giving people with Rett syndrome the ability to communicate as fully as possible is the most critical skill we can offer. We hope that you find this booklet useful.❞Rett UK

AN INTRODUCTION TO AAC FOR PEOPLE WITH RETT SYNDROME AND OTHER COMPLEX COMMUNICATION NEEDS

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ContentsForeword ....................................................................................................................................................6

What is communication? ....................................................................................................................8

What is AAC? .........................................................................................................................................10

How do we learn language? ............................................................................................................14

Presumed competence ..................................................................................................................... 16

First steps ................................................................................................................................................ 18

Aided language stimulation (modelling) .................................................................................. 22

How to model ....................................................................................................................................... 25

Access methods ................................................................................................................................... 29

Other communication skills ............................................................................................................ 32

Hints and tips .........................................................................................................................................37

Access to communication systems/UK guidelines ............................................................... 38

Eye gaze funding ...............................................................................................................................40

Is AAC the right choice? ...................................................................................................................42

Too many words? ................................................................................................................................44

Communication bill of rights ..........................................................................................................45

Where can I find information? .......................................................................................................46

Glossary of terms ................................................................................................................................. 51


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ForewordThis booklet was originally written for parents, carers and professionals of individuals with Angelman syndrome and has now been adapted for the use of parents, carers and professionals of individuals with Rett syndrome. It explains why the opportunity to communicate is so important, about Augmentative and Alternative Communication (AAC), the types of systems that could be used, and why everyone should have access to a full language system. It will show how you can use the systems to ‘model’ language to support development of communication. It also includes a list of links for further information and advice.

❝Over the last few years, I have been working hard to develop good AAC systems for my daughter and have learnt a lot in the process. In the course of writing this booklet, as I talked to others who have been involved in setting up AAC for people with Angelman syndrome, there were some common themes that kept coming up. Many people who have started using a full AAC system, have done it on their own or as a family without professional backing or specific support to implement the system. Everyone thinks that they are not doing enough. Everyone thinks it is hard work. Everyone is pleased they started. Everyone has been surprised by progress. No-one has looked back.❞ Tracey Campbell, mum to Leah

❝It always strikes me within the Rett syndrome (RTT) community, that all over the world, there is (mostly parental) anecdotal evidence (in the absence of scientific proof) that people with RTT are cognitively far more competent and able than they have been assumed to be or been given credit for. These 'stories' of communication and learning ability are similar regardless of age, severity of symptoms, location and schooling. It is always my opinion even when feeling flat or unsure that we can’t all be wrong. Parents who do not know one another, who have very different experiences in terms of having to care for their child/adult with RTT, all have very similar stories about cognitive ability. I don’t think that can be ignored.❞ Abigail Davison-Hoult, mum to Esmé


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❝When my niece was first diagnosed with RTT we were told she wouldn’t walk or talk, and would always have the comprehension of an eighteen-month-old. And yet she is now in a mainstream school learning to read and write alongside her peers and talks using an eye gaze computer. We’re not saying everyone with RTT will study at degree level, just as there is a spread in the neurotypical population, but we are saying they should be given the opportunity to learn to communicate. Rett UK’s aim is to support families and professionals to minimise the impact and maximise the potential for those with RTT so that others can see that they do understand, and do have a voice that needs to be heard.❞ Callie Ward, aunt to Sofia

The aim of this booklet is to provide help and support for every individual with Rett syndrome to have access to a full AAC system and be fully immersed in an environment that will help them to learn this system. The evidence base is strong and growing that a diagnosis of Rett syndrome does not mean that you cannot have a voice or that you do not have a right to access education and opportunities to learn throughout life.

The following has been written using our own words except where specifically referenced. However, these words have become ours after listening to some experts in the fields of:

• AAC

• Communication

• Literacy

• Education

• Presuming competence

We would like to apologise if we have accidentally copied anyone’s words, and need to thank the following people for helping to change the world for people with complex communication needs and learning difficulties.

They are:

Erin Sheldon, Mary Louise Bertram, Caroline Musselwhite, Maureen Nevers, Kate Ahern, Jane Farrall, Jennifer Marden, Tina Thompson, Gayle Porter, Linda Burkhart, Jules Whicher, Keisha Tipton, Cori Stell, Becky Burdine, Cassidy Harm, Carole Zangari, Susan Hanlin Norwell, David Koppenhaver, Judy Larivère, Pati King-DeBaun, Sally-Ann Garrett, Jennifer Facchinelli, Jo Picard and all the other wonderful people who answer questions and share their hints, tips and stories.

An extra thanks to Rosie Clark and Livvy Hepburn who helped edit the ASSERT version of this booklet and to Dan Hasler for his help with the graphics.

All errors are our own.


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What is communication?We all communicate all of the time. Communication is a way of sharing our personalities, making our thoughts known, and letting people know what we want.

When someone can’t talk, we often start by teaching that person only to name objects or to ask for things. It will help them become more eff ective at communicating if we can teach them other ways to communicate.

We use communication for many diff erent things, for example:

• Saying hello and goodbye in a variety of ways

• Talking about feelings

• Giving and getting information

• Expressing emotions

• Being polite

• Sharing a worry, problem or concern

Thank you to Kate Ahern for making and sharing the great illustration on the opposite page demonstrating the many reasons to communicate.

• Asking and answering questions

• Building relationships

• Joking

• Safeguarding issues

• Complaining

• Socialising


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Use manners Greet, take leave Express appreciation/

gratitude

Ask a question

Indicate discomfortExpress opinion

Express emotion

Express idea

Name/label

Comment

Give an answer

Express wants

and needs

Express hopes and dreams

Converse

SustainStart/initiate

Tell a joke

Recall past experiences

Tell a pretend story

Tell a story

End

Request

Person, object, etc.

Protest/reject

Help

Action

Social etiquette

Create social closeness

Share information

WHY COMMUNICATE?

Kate Ahern, M.S.Ed 10/19/2015. Motivate, Model, Move out of the Way Project. #icandomorethanrequest


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What is AAC?

Augmentative and Alternative Communication (AAC) is any means of communication that is not verbal.There are three main categories of AAC:

• No tech

• Low tech (also called light tech or soft tech)

• High tech

Examples of each type that are suitable for those with Rett syndrome to access are in the table below:

No tech Low tech High tech

PointingPartner Assisted Scanning (PAS)

Switches used to access a robust communication system

Gesture Alphabet boards

Body languageCommunication boards (Aided Language Displays or ALDs)

iPad (for modelling purposes and for those with direct access)

Signing (for those with reliable hand use)

PODD book Eye gaze device

Looking/eye pointing Communication books

Challenging behaviour

All ways that people use to communicate are valid and different methods will work better in different situations. It is important to think about how someone who is having difficulty talking will communicate in the future. All people with Rett syndrome should have access to a full, robust communication system to allow them to understand other people and to help them learn to be understood.

A full language system has enough words to allow an individual to say:

• What they want

• Something when they want to

• Something to whomever they want to

• Something however they want to


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This last point has been added as people may use a range of systems for many reasons and at different times so it is important to note and accept all forms of communication.

Collectively these aspects allow for autonomous communication, i.e. they allow for a person to express what they really want to, rather than what someone else has decided they want to say.

❝Communication is when one person shares something the other person does not know they were thinking.❞ Erin Sheldon

Full language systems can also be called robust systems.

Examples of full/robust systems are:

• PODD low tech book or high tech on Compass or The Grid

• Symbol Talker C on Grid 3

• Core First on Snap

• Sono Flex on Communicator 5

Note: There are a range of other pagesets within these software systems, only some of which are full language systems

These software systems are all eye gaze accessible.

All these systems:

• Include all types of words, not just nouns

• Allow the user to make their own sentences

• Categorise words so the user can find them easily

• Can be added to easily as communication progresses

Many people find choosing the right system difficult. If you have a child who is starting/at school, it may help to talk to your child’s speech therapist and school to see which systems they already use. This may mean that the people supporting your child are already familiar with a particular system.

Another consideration is whether a person has other significant issues such as Cortical Visual Impairment (CVI); they may find a soft tech communication system that can be auditorily scanned more accessible than an eye gaze system.

What is most important is that you, and anyone who spends significant amounts of time with the person with RTT, learns to use the system. Most people have the potential to use any of the systems with help.

Contact Rett UK for further information and advice on 01582 798 910.


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Michelle & Abigail’s storyReceiving Abigail's diagnosis left me in a numb state but the amount of positive information associated with RTT has increased greatly in the last 6 years.

We started with an Acer laptop (not touch screen), a PCEyeGo and Sensory EyeFX from Sensory Guru. Abigail blew us away with it. It was slow progress though. Some days she would love it and other days she would just scream and cry, or do nothing. We managed just 10 minutes a day for ages which exhausted her.

We purchased Communicator 4 but it overwhelmed me so I avoided it. I had the idea that eye gaze technology would miraculously make her talk and I would understand why she was screaming or sad or what she liked. Realising this wasn't so was a real blow.

Communication is not just about a device. Many people believe device = automatic problem solved. It's just not the case. Discovering her ‘best yes’ was vital! This can be used anywhere; devices don't fit all situations. Realising that learning AAC was like learning a new language helped me immensely. I realised if I don't 'speak it' to Abigail, why should I expect her to 'speak it' back to me? We got ourselves a touch screen tablet and I could model, model, model! Her device is important. It is her voice to use as she sees fit, but there are days where she says 'please leave me alone' and 'I need a break' which means I don't want to talk on my Tobii. I just want to relax. Her device is available if she wants it.

We have a mount for our home chair and stroller, so the device is now portable. Now, Abigail sees it as her voice and not a 'school' thing. Initially, I'd made the mistake of 'teaching' on the Tobii. I got hung up on wanting to teach her literacy and made it stressful for both of us. Some days she excels on her device and other days she couldn't care less about it. It's important to go with this. As Susan Norwell says; 'Be a meaning maker', so I just let her explore. She went all over Communicator and I would chip in and add to her chatter and sometimes I would just listen while I was 'busy' so she didn't feel watched and pressured to perform.

And now we have some amazing conversations. She uses words in amazing ways to get her point across. We still have meltdowns when meaningful communication is hard or even impossible, but they are very rare.

So now a year and a half on I can say Abigail is a much happier little girl. Those moments when she says something and Mum actually gets it, and she looks me straight in the eye with her ‘best yes’; those moments are priceless.

Michelle, mum to Abigail (age 8)


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How do we learn our first language?When children are learning their first language they hear it all the time from the moment they are born. They hear it both directly and indirectly and in many different settings. People use language everywhere they go, e.g. at home, at the shops, on the TV. They hear an average of 6,000 words per day. Normally, children will try the language for themselves in the form of babbling. A limited number of single words then follow and are added to over time. Most toddlers have a language explosion between the ages of 2 and 3 when the range of vocabulary increases significantly. Correct grammar then follows, and by the age of 9, most children are considered to have a full grasp of their language. If your child cannot talk they do not get the same experience of people talking to them in a language that they will be able to use change to back, e.g. symbols.

For a child who only sees their language system being used for twenty minutes twice a week e.g. in a Speech and Language Therapy session or at snack time, it will take them over 700 years1 to receive the same level of input as a typically developing 9-year-old has had with speech.

Teaching AAC is a similar process to teaching a new language. We should do the same as we would do for a baby learning speech. Don’t wait to start using a robust language system. An individual does not need to be able to prove that they can do anything before we use their language around them. We don’t wait until a baby shows they can understand words before we start to speak to them.

1. Trust that being around a language that uses symbols will help understanding as well as teach someone how to use the language.

2. Keep using the language for a long time before expecting someone to start to use the language. Remember, it takes around 18 months of hearing spoken language before toddlers begin to learn to speak.

This is a much more typical way to learn. Using a symbolised language might also be the only way some children gain an understanding of language.

❝It took me a long time to understand why an AAC system would work for Maggie; she didn’t seem to understand language and people just kept telling me to presume competence. Eventually, I realised that Maggie is very visual, so we could build her receptive language by talking to her with her AAC and making spoken language visual. That's when I realised that AAC is for everyone and there are truly no prerequisite skills.❞ Erin, mum to Maggie

There is plenty of research as to why AAC is best taught in this way. Sennot, Light and McNaughton2 (2016) reviewed the various research papers and this is a useful study to share with teachers, health professionals and family alike.


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Romi and Gael’s storyWe had always had faith in Romi’s ability to understand and we had an intuitive feel for when she was saying yes and no. Unfortunately, this 'sixth sense' wasn’t shared by anyone outside of the immediate family and as we weren’t able to articulate what it was that we were responding to, very few people believed us.

I attended the first Rett Education event in 2014. It was the first time that I had heard Susan Norwell speak, although I was aware of her work. Two things happened as a result of this experience.

The first was, following Susan’s model, I suggested to Romi that she should look at us when she wanted to say “yes” and look away when she meant “no”. Romi immediately burst into tears because in fact, this was exactly what she had been doing all along! We always understood “yes” when she did this and we mostly understood “no” but hadn’t really been aware of why we understood. From then on we were able to explain to others how Romi communicated.

The second was Susan’s assertion that for girls with RTT, when the cognitive demand is high, the motor demand should be kept low. This was significant because it turned out that school had been asking Romi to match colours, shapes etc. She wasn’t reliable at this and her then teacher was doubtful that Romi a) understood and b) had the capability to progress. This was frustrating because for years, Romi had demonstrated to us, by eye pointing, first using objects and finally words, that she could identify a range of things.

After explaining Susan’s approach, Romi’s new teacher switched from matching, to asking Romi directly. By reducing the motor demand on Romi, she was immediately successful with the same and much more complex tasks.

Gael, mum to Romi (age 12)


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Presumed competenceIt can be diffi cult to believe that your non-verbal child has the potential to learn such a complex system, especially when the people around you are saying that your child isn’t ready or isn’t able. This is where you must presume competence in your child and believe in both their ability to learn and your ability to teach them.

First described in 1984 by Anne Donnellan3, 'presumed competence' refers to making the least dangerous assumption.

In the case of someone who is non-verbal you have two choices:

1. Teach AAC by giving the person a full language system, immersing them in it, modelling and allowing them time to learn; or

2. Do not teach AAC because you think they are not capable of learning it.

If you make the wrong choice, what is the worst thing that can happen?

1. The person does not learn and you have wasted time.

2. The person had the ability to learn but was denied the opportunity and therefore must live without the ability to express themselves fully, if at all.

Number 1 is clearly the least dangerous assumption to make.

NON VERBAL

NO AAC

NO LANGUAGENO LANGUAGE AAC USER!

TEACHAAC


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It is important to take a balanced approach to the world of AAC and your expectations from it. By learning to use AAC and leading by example, we open a world of communication possibilities for people with Complex Communication Needs. We are not suggesting that our children are going to change the world or that they are all geniuses. In fact, very few of these people exist in the general population so why should there be a greater number within the Rett syndrome population?

What we are saying is that people with Rett syndrome are very able to communicate and have a lot to say. We are not the people to decide on their level of ability. They have a right, as does anybody else, to be educated, to communicate and to demonstrate their own skills; reaching their individual potential.

Research has also shown (Hyrniemiecka-Jaworska, Foden, Kerr, Felce and Clarke, 2016) that females with RTT have a signifi cantly increased risk of suff ering from depression and anxiety, potentially due to feelings of isolation, lack of self-worth and a lack of opportunity to communicate eff ectively. By giving someone the ability to take part in conversations, advocate for their own health and treatment needs and gain an education, we will help to reduce this risk of mental health issues.

Presuming competence does not mean put a device in front of them and they will miraculously talk. It means, presume they have the ability to learn and teach them their symbol language just how you would teach another child to speak.


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First stepsIt can be quite daunting to know where to begin your AAC journey.

Here are some tips to get you started:

1. In an ideal world, both low tech and high tech robust language systems would be made available to someone with RTT at the point of diagnosis, along with the support to learn how to use them. However, since this is not currently the case, the next best approach is to ensure that the individual with RTT has access to a robust language system in at least one form. If you are able to acquire an eye gaze device, then use this but even if not, whilst you investigate funding options, using a robust low tech language system will enable a smooth transition to the high tech version once it becomes available.

2. Once you have chosen the language system you feel is best, you need to decide how to take it everywhere. It is unlikely that a person with Rett syndrome would be able to carry it themselves. A strap for yourself to carry it would certainly be required or for the device to be mounted to the wheelchair. It may be difficult to access an eye gaze system all the time, particularly if your child is mobile. In this case, a low tech book used with Partner Assisted Scanning can be used in situations where an eye gaze device is impractical, ensuring constant access to a communication system.

3. Personalise it – this allows the AAC user to take ownership of their new language. This is highly motivating and increases the likelihood of them being able to have access to the words they want to use.


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Ellie and Molly’s storyMolly was diagnosed with Rett syndrome at the age of two and a half years. We realised then that her speech would not return so we started using printed symbols displayed on walls, books and an E-Tran Frame. We found out about eye gaze devices which gave us some hope. Soon after, Molly had the chance to try a Tobii eye gaze device at a Rett UK family event and took to it well. We showed the film of Molly using it to our Speech and Language Therapists. They were also impressed and applied for a trial loan. We were extremely lucky that our Speech and Language Therapists had a ‘presume competence’ approach and had previous experience of eye gaze technology, and that our LEA and NHS Trust already had a good track record in supporting AAC. In December 2014, Molly received a trial device and has been able to keep it since then.

Molly is now 6 and continues to use her Tobii I12 with Grid 3 software. She uses the Beeline core-word grid set as her main communication grid, with additional chat pages, library, etc. She has constant access to the Tobii, apart from moments when it isn’t safe or feasible, such as in a car or in bright sunlight. We use a mount attached to her wheelchair, a table stand (both supplied by ACE), and a home-made rolling floor stand to increase access.

We use additional low tech printed resources with Partner Assisted Scanning or eye pointing for communication, literacy and education. These include: Core Word and ABC flipbooks (from Rett University & Susan Norwell); number flipbook; literacy resources and display boards; E Tran Frame; a full printed version of the Beeline grid set, and a linked ‘quick chat’ book for PAS communication whenever the Tobii can’t be used.

Molly's eye gaze device is at the core of everything as that gives her the most free and independent access to communication, but developing our PAS skills (a learning curve for all of us) has also been hugely important. We've also learned to model language for Molly. We have her Beeline gridset loaded on an iPad and iPhone for modelling. We also model on the full printed version, and on individual printed pages stationed around the house. We have witnessed a definite increase in use of vocabulary since I started modelling intensively on the iPad a year ago which has been a really positive experience.

Our local speech therapy team runs regular Eye Gaze Clubs, and One Voice gatherings, so Molly gets to interact with others using devices at those events. Our communication journey is constantly evolving and is a work in progress but Molly loves to talk and has made amazing progress since diagnosis.

Ellie, mum to Molly (age 6)


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Angela and Cherry’s storyUntil I learned the realities of sensory processing difficulties and the impact it has on cognitive abilities for individuals who experience this, I could not explain what I intuitively knew about what it was like for Cherry. So often the ‘right’ way of doing something was beyond her and the assumption was always that she was lacking in ability, not us. Despite developing our own very successful method for responsive communication, modelling and checking without even knowing we were doing it, Cherry remained an enigma, especially when we tried to understand her health difficulties.

I tracked the progress of eye gaze technology and its use in Rett syndrome from the beginning but was tired of trying each ‘new’ thing with Cherry, putting her through unnecessary and often unsuccessful processes, so I concentrated on strengthening our connection with Cherry and following her lead. As more experience and research showed the value of AAC and eye gaze technology in Rett syndrome, I started to explore what it could mean for Cherry.

Two years ago, I made the decision and set out to bring this new approach into Cherry’s life. Unlike any other before, this story told of thinking, feeling people with so much to offer and it finally matched my own knowledge of my daughter.

It took a year to get an eye gaze tablet, making a strong case for funding through Cherry’s Continuing Health Care budget and another year of learning and adapting to embed it into daily life. Change is always difficult, however welcome, and the willingness of Cherry’s family and team to learn and change has been critical. She already responds extremely well with the people who ‘get it’ but reverts to falling asleep if she feels she is being asked to perform.

We still have a long way to go to achieve the goal I see as most important; the realisation of literacy. For Cherry to be able to speak about her life in her own words. I see this happening for younger girls with their families and know it is not too late for us. Right now, the support is the best it has ever been thanks to Rett UK, Tobii Dynavox and Susan Norwell with Rett University.

We have been keeping a journal of all AAC and eye gaze exchanges with Cherry, accumulating ‘proof’ that she can make use of this for her own purposes is all documented there. If people have fears about the technology, it is a foreign language for all of us after all, the low tech is just as important in growing the best environment for independent communication. Regardless of the tech, gadgets, tools or equipment, it is about human connection, communication and listening hard for Cherry’s voice.

Angela, mum to Cherry (age 30)


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Aided language stimulation (modelling)Having a communication system is not the same as using a communication system. The only way to become proficient at using AAC is by being taught how to use the system. We do this by modelling the system. Essentially, the word 'modelling' simply means 'demonstrating' how to use the system, or leading by example.

Aided language input (or stimulation) is what we do when we use an AAC system to indicate key words from a phrase, demonstrating how to construct language, usually by pointing to the symbol in the AAC. This is what we mean by 'modelling'. Remember, we should treat learning AAC like learning any new language. That means using a person’s language to teach them how to respond to situations in everyday life using their system. Using only verbal communication to teach communication using AAC rather than using the symbols as well as speech is equivalent to speaking to a baby in English and expecting them to talk back in French.

The chance of learning successful communication this way is very low.

SPOKEN WORD AIDED LANGUAGE STIMULATION

NO OUTPUT

AIDED LANGUAGE


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James and Cerys’ storyCerys has no speech and currently no consistent and effective way of communicating her needs. We've tried PECs, Applied Behaviour Analysis (ABA) therapy and more besides but all are dependent on cognitive use of her hands. This path led us to Augmentative and Alternative Communication (eye gaze) technology. These devices give people with Rett syndrome independent access to their 'voice' by capitalising on their eye movements that they naturally use to socially engage and connect with people. Essentially, their eyes represent their index fingers for pointing.

Cerys started using an eye gaze device at school last year and picked it up really well. However, use was very limited because the device was situated in another room. We decided we needed eye gaze technology to give Cerys a voice at home and school and fundraised to buy a Tobii device. Cerys takes it to school daily however, we met Cerys' class teacher and SALT last Easter as we had concerns her IEP was not meeting the needs outlined in her EHC plan.

Following this meeting our main concerns remained. SALT persisted in the continued use of PECs in Cerys’ IEP, even though it is likely that Cerys will never consistently point or pick up cards on request as the effect Rett syndrome has on the neurological pathways does not allow this to happen. To be effective, all communication needs to be modelled on the device and it should be fully integrated into her school day. At this point the class were only using it to select a type of snack at break time and the class teacher had not been given the time and resource to undertake any training (so understandably was not sure how to begin).

Cerys was in a class with all non-verbal children at her SEN school but, goes to a local primary school every Monday and is thoroughly energised in this environment. She really benefits from hearing the other children talk and play, is very attentive in class and the effects are tangible when she comes out of school. We believed that keeping Cerys in a class with all non-verbal children was detrimental and holding back her development as she does not get this stimulus.

The disruption in the classroom was given as one reason why the device was not used more regularly as it might get knocked and broken. However the Tobii is a very sturdy and robust device, this is not a reason not to use it. We also believe that if she was in a class that was not so disruptive the environment would be better for delivering an IEP based on AAC.

To update: We have a new head teacher and with the drive from the deputy head teacher, Cerys' new class teacher and assistants, we are seeing real improvement using eye gaze. Her teacher and assistants are training and have the confidence to use the eye gaze device and we are getting regular updates and dialogue with the school to ensure Cerys' needs are being better met. The school have been very supportive, including hosting a Rett UK training day.

James, dad to Cerys (age 6)


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How to model1. Start slowly.

Don’t try to do everything at once. There are several ways to do this and it will depend partly on which system you are using:

• You could pick a few core words to start with and model them across everything you do (as described in the online Rett UK resources: www.rettuk.org/resources/communication).

• You could start with using the front pages or phrase based type pages and just practice using these as much as you can until you are both more confident.

2. For example, at dinner time:

• Whilst you are enjoying your dinner, model “I like” whilst saying “I like my dinner”.

• When your child finishes, model “more” saying “oh I wonder would you like more?” (or simply “more?”).

• Someone leaves some food on their plate, model “not like” whilst saying “I think they do not like that”.

During story time, comment on the content, such as:

• “I like it, this story is fun”.

• “Oh no, he is not nice”.

• “I have that too”.

3. Do not panic!

To begin with, using an AAC system feels strange and unnatural but it’s not hard, it just takes practice. Eighteen-month-old babies can do it! Once you can locate your first set of words or pages with ease and know when to use them, you can then start using another communication function e.g. using opinion words or adding in the next set of core words.

Try to keep it natural. You don’t need to say every word as you would in natural speech, especially at the beginning. Just look at the options that appear on the book or device and use the words you have there already rather than trying to look for a way to do it using typical sentence structures or needing to create new buttons for words.


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4. You could choose a time of day to incorporate habitual use of the AAC. You could choose bedtime as a calm time, dinner time as everyone is all together, or any other time that suits the family.

Note: In the beginning whilst you are familiarising yourself with the system, ensure that you choose a time without constraints. You do not need to add in more pressure at busy times! This can be built up gradually by introducing other times when the AAC is always used.

Goal: use AAC throughout the day to communicate multiple messages in a variety of settings.5. Think of things the person who uses AAC (AAC user) would like to say and not just things you want to say to them. If you only ever model… "It’s time to go to bed," or "you need to…" then they won’t see it as being something that they will find useful.

Try to model comments such as "I think it’s yucky" when there is something you don’t like, or "I need a break" as these are things they may want or need to say themselves. Remember, modelling is as much about putting words into situational contexts as it is teaching someone what the words are.

6. Use “think aloud” comments that reflect what the individual communicates with their body language. Then use the communication system to talk about it e.g. “I see you clapping your hands. I wonder whether you are saying you feel happy?”

People with complex communication needs often need to hear how you are interpreting their body language. That way if you are wrong, they can try to be clearer. This way, you are showing the person another way of expressing what they might be feeling but doesn’t assume you know for sure what they want to say. They may have clapped their hands as they were retelling you a story about someone clapping their hands.

Do not say “you are doing this so you must be thinking that”. Putting words into a person’s mouth can belittle both their intent and meaning and enforces that the system is still open to misinterpretation, just like all their other means of nonverbal communication. Imagine how frustrating you would find that.


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7. A critical factor in RTT is to acknowledge that apraxia is the biggest hurdle to so many of the life skills we take for granted, including communication. The more that a person with RTT feels pressured to answer correctly or to respond in a certain way, the harder it will become for them to stay focused and keep their body under control.

For example:

❝My daughter, Esmé often uses her eye gaze device to tell me there is something wrong. Then she says ‘disorganised’ if she isn’t having an easy time of things and she’s feeling anxious or tired, has tummy pain or her breathing is bad. At these times, effective communication is even more challenging but even more important.❞ Abigail, mum to Esmé

Therefore, it is crucial that when communicating with somebody with RTT we use what is known as soft questioning.

This means adopting a more conversational style rather than firing directions or right/wrong questions at them. Consider your phrasing and if it seems that it would be overtly testing the person it is aimed at e.g; “Show me the red circle” then rephrase it to something less likely to induce an increase in apraxia e.g; “I like the red circle the best, I wonder if you can see it too”.

The difficulties we as parents and carers for someone with RTT have when it comes to embracing this form of communication are two-fold:

• Learning to adopt this style of conversing and communicating ourselves to ensure that apraxia is as low as possible in any situation. This in turn enables better communication from the person with RTT that we are with. It is also necessary to ensure that any teaching/support staff and health professionals use a similar style and that they understand the importance of this.

• Finding ways to demonstrate that the individual with RTT is indeed able to communicate effectively that satisfy the requirements of funding agencies for high tech equipment, but which do not mean that the individual feels as though they are under pressure and being tested.

8. Don’t forget to have something exciting or interesting to talk about. It takes much more effort to use AAC than the spoken word. If someone is taking the time (which will be physically and mentally exhausting for most) to use AAC then you should try your best to make the things they get to talk about interesting or meaningful.


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9. If there is a word that you are trying to model which is not on the system, you can add it in. If you are using a paper system, write the word on and it can be added into the next version. If it is a word you might not use often, you can think of other ways to say the same thing e.g. not being able to find the word ‘rocket’ and instead using; ‘plane’ ‘moon’ and ‘fly’ which portrays the same meaning.

❝There have been two things that have been particularly key to our success:

1. Allowing Ava pressure free time to explore the device without having to use it with the expectation of communication.

A partner can still be there loosely guiding her but she needs time to explore what the different buttons say without the stress of using it to communicate. It’s important to acknowledge this exploring time e.g. I will say, "Ava – Mum's going to make dinner so why don't you explore your device a bit.”

2. For parents, carers, anyone working with Ava, to spend time with the programme once she is in bed and not using the device. They should have conversations with it to get better acquainted with how it's organised. It will also help them to see just how challenging it is for the person.

An activity we use to practise modelling is to take a simple picture book, read each page aloud then immediately figure out a comment or a way to reduce those words down to 2-3 words per page e.g. "The little red hen asked who would help her to plant the grains of wheat" turns into "want-help" or "who- will" for text meaning "think-sad" or "think not" for prediction and talking about the text.

This is a great activity to practise finding words and bonus ready made activity for the next day with the person with Rett syndrome.❞ Jennifer Facchinelli, mum to Ava


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Access methodsApraxia, typical in Rett syndrome, has an impact on how easy it is for someone to access language, as well as causing sensory processing difficulties. Some individuals may be able to access their language system directly with a point, a fist or a hand, but this is rare and therefore many prefer to use eye gaze technology as the easiest and most reliable way to communicate.

Partner assisted scanning (PAS)

Partner assisted scanning (PAS) can be used when a lack of motor skills makes direct access impossible. It is also a very useful approach if you do not yet have a device, or if it is not practical to take the device with you. The communication partner shows or points to the symbols, reading aloud the words. The individual indicates a "yes" or "no" response to convey their intent and take the conversation further.

This can be time consuming and it takes practice but can be used to great effect with individuals who do not have a device available at that moment, who have problems with motor skills and/or for individuals with Cortical Visual Impairment (CVI). CVI is not uncommon amongst people with Rett syndrome and using a well-spaced, highly contrasting symbol set may also aid access in these cases.

Note: Some people who use AAC may use direct access most of the time but it is important to model partner assisted scanning too, as if they are particularly anxious or finding it difficult to focus, this method may sometimes be much easier for them. Remember also that having an eye gaze device available constantly to someone with RTT is impractical and in many cases unrealistic so an alternative method of communicating is valuable.

Switch access

Switch access can also be used for access to high tech devices for those who find direct access difficult.

As with PAS it uses a scanning technique but here the individual uses a switch/button to select their word. There are technologies available that can allow this to be done without a partner.

It is unlikely that using switch access would be taught before partner assisted scanning. If the person is using a switch, it still needs to be to access a robust communication system.

A switch with one phrase programmed onto it will not lead to autonomous communication.If switches are being used to practise hand skills, it is better that this is to access a toy or for something functional rather than a one phrase button.


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Eye gaze

Eye gaze is an access method whereby the user selects a symbol on a page on the computer by looking at it. A tracker in the computer will know where the person’s eyes are looking. When the individual looks at a word for a predefined amount of time, the computer will speak this word out loud.

Low tech communication books can be made suitable for eye gaze as well as sophisticated high tech options.

Eye gaze can take a lot of practice and is very tiring so individuals may find partner assisted scanning easier in some situations. The development of technology that allows eye gaze functionality is a huge leap forward in the world of AAC. It is however important to remember that whilst eye gaze devices are amazing and allow for independent communication with voice output, they are not a miraculous solution for the non-verbal individual with complex communication needs. The devices still require a lot of input and modelling of language for a person to be able to use it.

For more information on the different eye gaze systems available and suitable for RTT, go to: www.rettuk.org/wp-content/uploads/2015/12/Rett-Eye-Gaze-Proof-4.pdf

❝Partner assisted practice has been life changing in enabling AAC access for our clients with Angelman who have the most complex bodies and processing difficulties.❞ Mary-Louise Bertram, expert in communication and Angelman syndrome

This statement can also be applied to individuals with Rett syndrome.


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Other communication skillsLearning skills

There are many skills involved in becoming proficient in using AAC and you can practice them alongside modelling an AAC language system.

One of the most powerful things you can teach someone who is non-verbal is a definite "yes" and "no".

Note: The concept of "yes" may need to be taught.

Once a definite "yes" is present and reliable, many other ways of communicating are available through partner assisted scanning.

For more information on yes/no, go to: www.rettuk.org/wp-content/uploads/2017/03/formatted-website-yes-no.pdf

Another essential skill to teach is how to indicate that you have something to say. This can be a challenge and is very dependent on a person’s individual motor skills.

Some have a sign they look at to indicate they have something to say, others may raise their hand, those who are more mobile may come over to you.

Once you have established a method, it is essential to then give the person access to their robust language system whenever they indicate that they have something to say.

The indication used can be whatever is easiest for your family and there may be different approaches for different situations. The act of indicating you have something to say should be modelled along with the AAC system and used consistently throughout the day. The method used to indicate that the individual has something to say should be shared with anybody else who spends a significant amount of time with that person.

Aided language displays

Aided Language Displays (ALDs) are single pages of topic specific words.

These can be activity based e.g. play dough and doll play, or topic based e.g. days of the week or holidays.

They can be very helpful when starting out with a new system and for use in areas where it is difficult to take the main AAC system e.g; bathrooms and swimming pools.

They are, by their very nature, limited in scope and so should always contain a means to request access to the full communication system, which where possible should be readily available.

The symbol set and lay out used should be as similar as possible to the main language system.


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Sonoflex ALD – reading

PODD based ALD – music


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Liz and Jess’s storyThe focus of our story with Rett syndrome and communication is modelling. This makes it sound like we are amazing at it and do it all the time. However, this could not be further from the truth!

When Jess first started school we arranged some trials on an eye gaze device. She had a couple of sessions and did very well using the early cause and effect games. However, our SLT at the time (who was brilliant) did not feel Jess would be able to make the jump from games to functional communication and therefore could not recommend her for funding for her own device.

I then attended the first Rett Education conference and heard Susan Norwell speak. WOW! I came home, made a copy of Susan’s alphabet flip chart and tried using it with Jess. I had no idea what, if anything, Jess might do. She had not had any deliberate exposure to literacy or structured reading and writing at this point. I explained to Jess how the system worked and without hesitation she wrote ‘Jessica’. I had absolutely no idea she could spell her name or even recognise it written down. Somehow along the way she had learnt by herself how to spell her name.

We arranged for the SLT to come and see and again Jess wrote her name. Without hesitation, the SLT placed an order for an eye gaze device. Jess initially used Grid 3 but progress was slower than we had hoped. Meanwhile, school had fully embraced using PODD books in a low tech form. Every child and member of staff has their own PODD book and it is modelled continually throughout the day.

After a year the software on Jess’s eye gaze was changed to mirror the PODD book. Finally, her low tech and high tech systems matched! As soon as she saw PODD on her device, she navigated through screens, created full sentences and clearly knew exactly where everything was and how to use it. Her progress using the eye gaze device was fast and had clearly absorbed the modelling of PODD at school. She knows the system far better than I do and if I am struggling to say something she will navigate to the correct page for me. Who is doing the modelling?!

I have since heard Susan Norwell speak again and using the Rett University core word and alphabet flip books, the first sentence Jess composed was “I love mummy”. Amazing!

My first message is that of the importance of modelling and exposure. We don’t know what people with RTT are listening to or understand but I am sure it is a huge amount more than most people assume.


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My second message is the importance of working with the school. The best time that Jess can concentrate occurs at school so this is her main exposure. Using a system that school understand and are willing to use makes an enormous difference. We have seen a definite motivation in Jess when she is using the same language system as her peers.

There is no denying that this is all very hard work and extremely time consuming but the rewards when you connect with your child through deliberate, non-restrictive communication are priceless.

As well as telling us she loves us, Jess will often say that she is happy. Having that reassurance from her that she is still happy, despite everything that she endures, makes everything that Rett syndrome throws at us just that little bit easier to cope with.”

Liz, mum to Jess (age 8)


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Hints and tips to get everyone on board with AACIt is helpful to get everyone who is in regular contact with the AAC user to model the use of their system as much as possible. It helps everyone to see it as a valid method of communication and decreases the reliance on one person to do all the modelling.

Here are some hints and tips to persuade others (also handy to remind yourself from time to time):

1. Explain how language is acquired and how often language needs to be modelled to give the AAC user the best chance to use their own system.

2. It’s ok to make mistakes. Communication can be messy.

3. Don’t be scared to model AAC, it will feel awkward at first but you will get the hang of it.

4. Always model without the expectation of a response from the person with RTT. Don’t put any pressure on them at all as this will increase apraxia making it much harder for them to respond.

5. Make comments rather than asking direct questions e.g. “I like this, it’s funny”, instead of “What do you think about this?” It is more natural and doesn’t pressure the other person for an answer.

The ratio should be around 80% comments to 20% questions.6. Ascribe meaning to any babbling done by the AAC user. When someone is learning to use an AAC system, they will explore their book or device by touching or looking at symbols and learning meanings by the responses they receive. If they select ‘finish’ but we think it was accidental and don’t respond accordingly, they will not learn what ‘finish’ means and will not use it again. It is much more motivating if they get a great and appropriate reaction to everything they say.

7. Add words to the system as and when you need to.

8. Although the AAC is the primary solution for unmet communication needs, never ignore other methods of communication: they are valid and often easier so will not change. Instead, model the communication in the AAC system.

For example, you are feeding the person with RTT a yoghurt and they keep looking at the yoghurt when they want more. You can model “more yoghurt” but do not insist that they request it on their AAC before they are allowed it. Multi-modal communication is something we all do in everyday life.


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Access to communication systems and current UK guidelinesThe normal route for access to communication systems is through a Speech and Language Therapist (SLT). Speech and Language Therapy (SALT) is provided by the NHS. Individuals are typically referred to a SLT either by a doctor or through school/nursery. In some instances, self-referral may be an option.

It can be extremely hard for adults with learning difficulties to get access to SLT as most adult services are tailored towards people with an acquired communication difficulty. Access to SLT does not mean automatic access to a communication system.

Most current guidelines and policies are based on the old fashioned ‘candidacy approaches’, which require a certain skillset to be proven before being granted access to a robust AAC system. This is akin to asking someone to pass a driving test before allowing them to have a car to learn to drive.

In the literature, this approach has been abandoned and replaced by more progressive models in many countries. One such approach is the ‘Participation Model4’, whereby people are given a language to participate in before their ability to use it is assessed. At the time of writing, these approaches are not yet evident in guidelines in the UK.

These guidelines, along with attitudes, are currently the biggest hurdle to gaining access to a robust communication system. Most guidelines still state that individuals must meet certain criteria before they can have access to a communication system.

These criteria include skills such as:

• Turn taking

• Choice making

• Eye contact

• Cause & effect

• Use with intent

• Following direction

• Listening/attending

• Joint attention

Most individuals with Rett syndrome would not appear to meet these criteria in an assessment.


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When the criteria are not met, the individual may be left with either no means of communication or limited methods of communication e.g. making choices or naming objects only. If the individual is within a school environment, the term ‘communication environment’ may be used to indicate that the individual is within an environment that accepts and validates all forms of communication.

Many parents/carers have heard the above phrases and are continually told that the individual is either not ready or that they do not have the capacity to learn a robust language system. Indeed, a robust language can seem overwhelming at first. This however, is not the case.

It is interesting to note that in January 2016 the Scottish Executive approved an Amendment to the Health Act 2006 which states that all individuals with complex communication needs will get access to AAC. The Amendment did, however, state that existing guidelines would still stand. The impact of the Amendment remains to be seen.


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Eye gaze funding optionsThere is the option to obtain funding via one of the Regional Hubs. However, the process is long and arduous with specific criteria that need to be met. There is also the possibility of funding via a charity such as The Sequal Trust. www.thesequaltrust.org.uk

In both these cases, there is a requirement for the individual to have shown aptitude at using an eye gaze device, including evidence, best collated by videos. Rett UK has a number of devices with tablets available for loan to families trying to obtain funding for their own device (see page 43 for contact details).

To find out more about funding options and how to loan a device, contact Rett UK.

Hilary and Charlotte’s storyI was very despondent when 6 years ago our NHS Speech and Language service said that Charlotte was not up to using eye gaze. Nor did they believe us when we said that Charl could read. At primary school, the teachers had actively pursued her reading and I have sheets of typing she did on an old BBC computer whilst she was there.

After primary school we used a notebook to write words and sentences in, plus a word board. She would point with her finger or eye point to what she wanted to say. We came across a lot of disbelief, even within our own Rett community.

In 2017 we decided that Charl needed another chance at using eye gaze. We didn’t know what would happen. Charl was used to the notebook and pointing to words, usually answers to questions such as “would you like a drink?” answer yes or no. Then next page “hot or cold?”. Then, for example, “hot chocolate, cappuccino, tea, latte, something else”. It worked well.

We invited Callie to meet Charlotte. She brought the Tobii I series and talked to Charlotte modelling the use of words. This was the first time she communicated using the eye gaze. I thought I was going to break down and sob.

If you have never experienced eye gaze, I must explain that the person using eye gaze will not immediately start speaking like we do (we after all have been doing this speaking thing for years!). If you try using the eye gaze you’ll see how incredibly hard it is to use without practice. The fact that Charl said something was amazing! She, like many people with Rett syndrome, took to eye gaze very quickly.


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Since then one of the amazing things she has done is to tell me emphatically that she loved me but she really didn’t want to talk about what I was rattling on about!

My husband and I have also used FaceTime to speak to Charl in her supported living flat with the eye gaze next to her. We have had proper conversations, with her for example asking her dad how he was after a hospital visit.

One mum from Florida wrote on one of the forums that eye gaze was like the weather in Florida, dry, dry, dry then suddenly a huge rain storm, then dry again. This is how we find Charlotte’s use of eye gaze so far. Some days she talks a lot, on other days she might use the device but we're not sure what she is trying to say. But after 32 years of being silent she has got a lot of catching up and practicing to do.

We still use the note book and a yes/no sheet because if you want to ask about drinks etc. this is by far the quickest way for us. The eye gaze is a tool in the tool box, but such a vital one. Charlotte’s support team are great at using the eye gaze, mainly because thanks to a fabulous locality manager, the care provider paid for Callie to come and train the staff to use the equipment.

We are very grateful to the Sequal Trust, a charity who will supply eye gaze equipment to people who need it. Although we have done all the initial bits on our own, I am delighted that Rett UK have now committed time and funds to getting eye gaze going for as many families as possible. I am Chair of Trustees for Rett UK and we can see how this is changing the lives of not only those with Rett syndrome but those who care for and love them too.

Keep sharing eye gaze experiences, it is a rocky road at times, but I believe in Charl, as I always have done and truly believe this is changing her life.

Hilary, mum to Charlotte (age 32)


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Is AAC the right choice?It is common to feel uncertain about the implementation of an AAC system, especially if you have been continually told by professionals that your child is not ready or can’t do it.

Here are some arguments why AAC is right for your child:

• Remember there is no evidence to support the Candidacy Model of communication. It is the basis for guidelines simply because that is what has always been done. There are no barriers to starting to learn a communication system.

In the beginning, the emphasis is all on the communication partner, not the person themselves. This approach has a large and growing evidence base for success.

• It is illogical to make someone prove that they can use a system before they have access to that system.

• There is no right age to introduce an AAC system.

The child cannot be too young. We start teaching children language before they are even born, by speaking to them whilst they are in the womb.

Equally, there is no upper age limit. In fact, studies have shown that adults with complex communication needs actually adapt to using AAC faster than their younger counterparts. This may be due to increased attention span.

• There are children with all mutation types that cause Rett syndrome who are now good communicators.

• Everyone has different skills and there may be a lot of problem solving needed to ensure that everyone has the best access to their communication system, but it can be done.

• Someone who is a good communicator has become that way through a lot of time and effort; there is no avoiding it.

• Start slowly and build it up at your pace until it becomes more natural. There will always be times when it slips so just start again, don’t dwell on it or blame yourself.

• Cost may be an issue if your child has no support from Speech and Language Therapy. However as mentioned previously, there are charities, such as Sequal Trust, that may help cover funding. Rett UK also has loan devices that can be borrowed to gain evidence of the person’s ability to use the device. You will need to attend a Rett UK communication training day to access loan devices.

• There are no guarantees that your child will become a fluent communicator but this is the best way to give them that opportunity and help them to achieve their potential.


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Help is out there to teach people how to begin including:• Facebook groups – even if you don’t generally use Facebook, it is worthwhile to have an account simply for access to these groups

• Webinars on YouTube

• Rett UK: www.rettuk.org or 01582 798 911 or [email protected]

• Fellow AAC users are always willing to help


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Too many words?Many people are discouraged from using, and can be overwhelmed by a robust AAC system. It may at first feel like there are too many words and symbols to learn for everyone involved.

We don’t, however, plan which words we are going to introduce to a baby. We use many words and see which ones they are motivated by. We then give meaning to those words and expand vocabulary by adding more, building language.

We need to have access to many symbols so that we can do the same with someone learning to use AAC. Learning a language is not straightforward: to learn it, we need exposure to all of it. Somebody using AAC needs to not only hear how words fit together but also have a symbol set that reflects the complexities of language and the broad spectrum of vocabulary required to communicate effectively.

Insufficient symbols lead to insufficient language. Our aim in all of this is to enable people with Rett syndrome to communicate. Communication is not a list of nouns or the ability to make choices between two options but very much more.

❝If you can’t talk and say what you want to with somebody by using their device then neither can they; it’s just not enough language. I make all my parents take this test. Limiting their language limits their learning. I am not comfortable with limiting my students. They need a full, robust language system and this includes as big a range of vocabulary as possible. ❞ Susan Hanlin Norwell, MA in Special Education and co-founder of Rett University


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Communication Bill of Rights

Reproduced with permission from Kate Ahern

to be given real choices

to ask for and get attention

and interaction

to have and use my

speech system all the time

to be taught how to

communicate

ask and know about my schedule and world

to be communicated

with in a sensitive manner

to be spoken with, not about

to be treated with respect and dignity

to be a full and equal member of my community

to have my speech system in working order

and to have a back up

to ask for what I want

to say no, refuse and

reject choices

to be heard and responded to (even if the answer is no)

to share my feelings

Communication Bill of Rights

I have the right:

From the National Joint Committee for the Communicative Needs of Persons with Severe Disabilities. (1992). for meeting the communication needs of persons with severe disabilities. Asha. 34(Suppl.7). 2–3. adapted by K.A.


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Where can I find information?ASF Communication Training Series

This is specifically aimed towards parents and carers of people with Angelman syndrome and professionals working with them. It provides free webinars and handouts on getting started and implementing AAC with our children and adults. It is suitable for everyone regardless of experience or type of system. Much of the information is relevant for those with other complex communication needs such as Rett syndrome. www.angelman.org/resources-education/communication-training-series

Aided Language Input

A link to a page by Assitiveware about modelling, what it is and why we do it. This includes a simple but effective video using graphics to explain why modelling is important. www.assistiveware.com/support/faq/page/353

We Speak PODD

A family of eight teaching four of their non-verbal children to communicate and you can follow their journey on YouTube and Facebook. Whilst the family uses PODD, following this journey is helpful to everyone for great examples of modelling. www.youtube.com/channel/UCfvD20l2wn-fS2Ar4bdTXZg

UK Organisations

• Rett UK has pdf files and resources to support getting started on your communication journey. www.rettuk.org/resources/communication

• Communication Matters (CM) is a UK based charity that aims to increase knowledge, understanding and awareness of those with complex communication needs. www.communicationmatters.org.uk/page/about-aac

• ACiP is the Scottish branch of CM. www.acipscotland.org.uk

• AAC Knowledge is maintained by CM to provide up to date evidence based information about AAC. www.aacknowledge.org.uk

• I CAN help is a range of information services that provide help and advice to parents and practitioners about speech, language and communication. It includes a free call back service. www.ican.org.uk


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• ACE CENTRE is an AAC centre with two bases which provide AAC assessments and information. acecentre.org.uk

• Royal College of Speech and Language Therapists www.rcslt.org/asp_toolkit/csn/why_does_communication_matter

• 1voice takes a family and social perspective on communication. There are local 1voice groups who meet up and use their AAC. www.1voice.info

• KEYCOMM A Scottish AAC website, information about AAC and link to Scottish Codes framework. keycomm.weebly.com

• CALL Scotland A resource centre for educators and families www.callscotland.org.uk/home

• Now Hear Me offers resources and plans formulated as a result of funding from the Right to Speak Project by the Scottish Government. www.nowhearme.co.uk/users-of-aac

• Afasic provides communication support for families. There are branches in Wales and Northern Ireland. www.afasiccymru.org.uk afasicnorthernireland.org.uk

• Rett University has online courses giving instruction in communication, reading and writing for those with Rett syndrome. You can apply for a scholarship if you are unable to pay for the course. www.rettuniversity.org

Facebook groups

• Rett Syndrome – Communication and Literacy for Children

• Rett Syndrome and Speech and Language Therapy

• ASSERT Communication and Literacy

• Angelman Literacy and Education (including Alphabet Therapy)

• AAC SLCN Literacy

• ASF communication series

• PODD Europe

• PODD and Alternative access

• AAC through Motivate, Model, Move Out of the way

• Augmentative Communication Resources and Help

• Tobii UK (if you are using a Tobii Dynavox device or software)


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• Smartbox Community (if you are using a Smartbox device or software)

• We speak PODD

• Little Bear sees (CVI)

Blogs

• Rett Communication: A Mother’s Experience This amazing blog has detailed explanations and videos of a mother and her daughter’s first year on their communication journey. armyofus.org/blog/2015/09/05/rett-communication-a-mothers-experience

• Rettisa4letterword You can read the wonderful story of when this family discovered their little girl could write. rettisa4letterword.wordpress.com/2014/01/12/i-can-write

• Jane Farrall Jane is a speech pathologist and special educator passionate about literacy, Augmentative and Alternative Communication (AAC) and Assistive Technology. www.janefarrall.com

• prAACtical aac Find lots of practical ideas and resources to help you on your AAC journey. praacticalaac.org

• aacgirls Dr. Caroline Musselwhite is an assistive technology specialist with more than 30 years. Her work is particularly useful when thinking about social communication. aacgirls.blogspot.co.uk

• Teaching Learners with Multiple Special Needs Kate Ahern is an assistive technology specialist and a teacher of learners with multiple or significant special needs. Her blog posts focus on the need for modelling as well as ‘self-talk’ strategies. teachinglearnerswithmultipleneeds.blogspot.co.uk

• Spirit Dances This incredible blog is written by a woman who had Rett syndrome and taught herself to read and write. spiritdances.wordpress.com/my-rett-body

AAC papers

Note: To access the papers from the Augmentative and Alternative Communication journal you will need to purchase a subscription of Communication Matters: www.communicationmatters.org.uk/page/aac-journal

• Calculator, S. (1988). Promoting the acquisition and generalisation of conversational skills by individuals with severe disabilities. Augmentative and Alternative Communication, 4(2), pp.94-103.


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• Calculator, S. (1997). Fostering early language acquisition and AAC use: exploring reciprocal influences between children and their environments. Augmentative and Alternative Communication, 13(3), pp.149-157.

This paper proposes future directions for research examining the communicative environments of young children who are potential candidates for augmentative and alternative communication (AAC) and those who are already using AAC systems.

• Cress, C. and Marvin, C. (2003). Common Questions about AAC Services in Early Intervention. Augmentative and Alternative Communication, 19(4), pp.254-272.

This paper explains the importance of starting AAC as early as possible; once it becomes clear that typical linguistic development is not going to happen. It is Important not to see AAC intervention as less important than other medical and therapeutic interventions.

• Kangas, K. and Lloyd, L. (1988). Early cognitive skills as prerequisites to augmentative and alternative communication use: What are we waiting for? Augmentative and Alternative Communication, 4(4), pp.211-221.

• Klang, N., Rowland, C., Fried-Oken, M., Steiner, S., Granlund, M. and Adolfsson, M. (2016). The content of goals in individual educational programs for students with complex communication needs. Augmentative and Alternative Communication, 32(1), pp.41-48.

• Lariviere J. (2017) Girls with Rett Syndrome Connecting through Communication: Eye Gaze Technology Making it Possible! online.fliphtml5.com/yciqt/kmwm/

This paper discusses how eye gaze technology is making it possible for people with Rett syndrome to communicate. It also has references to research papers looking at eye gaze technology for interaction.

• Light, J. and McNaughton, D. (2012). The Changing Face of Augmentative and Alternative Communication: Past, Present, and Future Challenges. Augmentative and Alternative Communication, 28(4), pp.197-204.

This is about the growing importance and acceptance of the need for AAC in the last 30 years.

• Norwell, S. (2017) Writing with Children with Rett Syndrome: Effective Foundations and Mechanics http://online.fliphtml5.com/yciqt/kmwm/

This article looks at strategies to support teaching people with Rett syndrome to write.

• Mirenda, P. (1993). AAC: bonding the uncertain mosaic. Augmentative and Alternative Communication, 9(1), pp.3-9.

This paper is about changing attitudes and beliefs around the cognitive and communication abilities of those people with severe disabilities.


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• Romski, M., Sevcik, R. and Adamson, L. (1997). Framework for studying how children with developmental disabilities develop language through augmented means. Augmentative and Alternative Communication, 13(3), pp.172-178.

The paper is about the means by which children acquire language and the many different factors (internal and external) which influence that. It provides some frameworks to help the acquisition of language for children who do not acquire it in a typical fashion for whatever reason.

• Romski, M., Sevcik, R., Barton-Hulsey, A. and Whitmore, A. (2015). Early Intervention and AAC: What a Difference 30 Years Makes. Augmentative and Alternative Communication, 31(3), pp.181-202.

This paper looks at the development in AAC in the 30 years since the journal was first published. It also looks at the importance of early intervention in the 0-6 year age group and the implications in practice and further research direction as a result in these changes over the past 30 years.

• Sennott, S., Light, J. and McNaughton, D. (2016). AAC Modelling Intervention Research Review. Research and Practice for Persons with Severe Disabilities, 41(2), pp.101-115.

This study looked at the impact of modelling whilst speaking by a communication partner for an individual using AAC.

• Soto, G., Müller, E., Hunt, P. and Goetz, L. (2001). Critical issues in the inclusion of students who use augmentative and alternative communication: An educational team perspective. Augmentative and Alternative Communication, 17(2), pp.62-72.

• Zangari, C., Kangas, K. and Lloyd, L. (1988). Augmentative and alternative communication: A field in transition. Augmentative and Alternative Communication, 4(2), pp.60-65.

References

1. Jane Korsten (2011) QIAT Listserv 4th April

2. Sennott, S., Light, J. and McNaughton, D. (2016). AAC Modelling Intervention Research Review. Research and Practice for Persons with Severe Disabilities, 41(2), pp.101-115.

3. Donnellan, A. (1984). The Criterion of the least dangerous assumption. Behavioural Disorders, 9, 141-150.

4. Beuklelman, D.R. & Mirenda, P. (1988). Communication options for persons who cannot speak: Assessment and evaluation. In C.A. Coston (Ed.), Proceedings of the National Planner Conference on Assistive Device Service Delivery (pp151-165). Washington, DC: Association for the Advancement of Rehabilitation Technology. Participation model.


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Glossary of termsUseful vocabulary to learn:

AAC – Augmentative and Alternative Communication

PAS – Partner Assisted Scanning

Core Words – High frequency words that are applicable to all topics

Eye Pointing – Looking with intent

Eye Gaze Device – Computer that is controlled using the eyes (the eye acts as a computer mouse)

Dwell – The amount of time the eye needs to pause in order to make a selection

Robust Language System – Provides access to core words and a large variety of ‘fringe’ or theme words, allowing the creation of grammatically correct sentences

Phrase-based – Selection options are phrases rather than individual words

PODD – Pragmatic Organisation Dynamic Display

Modelling – Going through the motions, showing, demonstrating

SLT – Speech & Language Therapist

SALT – Speech and Language Therapy

Alternative Pencil – Providing a way to write not using a physical pencil, for example; making selections using an abc flipbook or using an eyegaze keyboard

Rett UK Ltd, Victory House, Chobham Street Luton, Bedfordshire LU1 3BSGeneral Enquiries: 01582 798 910Email: [email protected] • www.rettuk.org

an introduction to aac for people with rett syndrome and ... · michelle & abigail’s story...

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