DEAL Newsletter 2008 (4) - AAC for CP

AAC for CP
Improving the communication of children
with cerebral palsy
who do not speak clearly or fluently


Rosemary Crossley

Inability to communicate is the most devastating of all disabilities.

Without communication you can't have a full social life, succeed in school, or even ask for a drink.   You are doomed to life as an observer.

With communication, you can become a participant.


Augmenting speech
Impaired or delayed speech may be augmented by gesture and body language, hand signs, spelling, and specially developed communication aids.  These are all called augmentative communication strategies.

When to start
Many children with cerebral palsy find it very hard to speak clearly or fluently.  As soon as it becomes apparent that a child’s speech is likely to be significantly delayed, augmentative communication strategies should be introduced, to ensure that the child doesn’t miss out on social and learning experiences requiring speech.  Every child with cerebral palsy (CP) who has very limited intelligible speech after the age of two should have a professional assessment by a speech pathologist with experience in augmentative communication as well as traditional speech therapy.  The aim of treatment should be to help the child communicate as fluently as possible, using any strategies that work for that child. 

Will using an augmentative strategy adversely affect speech?
Often parents are anxious that early use of non-speech communication will prevent a child talking.  There is in fact every indication that the reverse is true.  Children who have access to an alternative means of communication speak more, not less.  Probably this is because they are encouraged to communicate more and experience more success in communicating.  Most of the published research concerns children who have augmented their speech with communication boards or sign.  However, many therapists have also observed significant speech improvements in some children after they started using communication aids that talked.  Often children try and imitate what the communication aid says.

Ideally, young children who are learning to use augmentative strategies should also continue to receive speech therapy.  It may be some years before it is clear whether a given child’s speech will be functional.  We want children to have the best possible chance of developing speech, but children should not be left frustrated, without a means of communication, while waiting on speech.

 
Augmenting speech
Speech may be replaced or augmented by gesture and body language, hand signs, handwriting and communication aids. Communication aids are devices which enable people with severe speech impairments to communicate.
As children have very varied skills, needs and problems, there are many different aids, including communication cards, boards and books and electronic communication devices which speak.  Most children need to use more than one communication strategy to meet all their needs.

Finding the right augmentative strategy
Unfortunately it is not easy to replace the flexibility, fluency and portability of speech.  Every strategy has advantages and disadvantages.  Manual sign is as portable as speech (like your tongue, your hands go everywhere with you) but only people who know the signs will understand you, and only children with good hand skills can make the signs.  A communication book containing lots of pictures and words will be understood by more people but is a nuisance to carry round and cannot be used in the swimming pool, or to talk to a number of people at the same time.  An electronic voice is great for talking to a number of people, but it costs a lot and the batteries go flat.  And it doesn’t respond well to being dropped or getting wet.  And so on.
 
In selecting communication strategies for your child or your student, account has to be taken of the pluses and minuses of different augmentative communication strategies.  You need to consider the child’s physical and sensory skills, academic skills and communication needs together with the need for trained communication partners.  In choosing electronic aids cost, durability, flexibility and ease of programming are important considerations.

As I’ve said, it is rare for any child's overall communication needs to be met by one device or one strategy. ‘Sam’, for example, who's three and a half years old with cerebral palsy and very unclear speech, signs to his parents who understand all his signs, but uses a communication book at his pre-school, where few people understand his signs.  He also uses a Communication Builder – a simple electronic communication aid that speaks - to share news, play games and sing songs. 

If ‘Sam’s’ speech does not improve significantly as he gets older, he'll need to move on to a more sophisticated electronic aid, possibly a dynamic display device displaying words and symbols like the Dynavox M3 or the Springboard.  He'll also probably need to use a keyboard to replace handwriting.

The main priorities in augmenting the speech of young children are

•    avoiding frustration
•    increasing social interaction
•    enabling the child to play with other children
•    fostering participation in book-reading
•    developing the child’s self-confidence
•    HAVING FUN!

 
Assessment
Communication in any mode is a complex motor task requiring accurate timing and the production of precise movement sequences.  It is important not to assume that speech impairments are primarily due to cognitive impairments or to equate speech fluency and intelligence. 

Since DEAL Communication Centre opened twenty years ago we have seen children with little or no speech and diagnoses of cerebral palsy, autism, Down syndrome, and Rett syndrome successfully complete secondary education at ordinary schools and proceed into tertiary education.  Typically they had all been assessed as having IQs of less than 50 prior to receiving a means of communication.

While lack of speech doesn't mean lack of understanding, children with little or no speech need an effective means of communication before they can show us what they know.  Formal IQ assessments administered to children who cannot talk, write, or sign fluently, or point meaningfully, or who are not motivated by the tests, produce meaningless results.  The results of IQ testing do not provide a good basis for intervention.

Alternatives to formal assessment
It is preferable to gather information about the child’s interests, pointing and motor planning skills by observation and questioning the child’s family and then to assemble some fun stuff and play around.  Offer a variety of aids and strategies for the child to try with various activities such as playing games, reading books, answering questions, and using computers.  Then select the communication aids or strategies which work best and give them to the child to use at home and school.

We often start by finding something the child likes, and devising a way for him or her to ask for it e.g. “Judy”, 22 months old had no speech and was understandably very frustrated.  She loved being lifted up high.  We gave her a card with a picture saying “Lift me” and showed her how she could get people to pick her up by giving it to them.  She enjoyed using the card, and it led naturally on to a board with multiple cards from which Judy could select the activity she wanted.

Judy also loved her mother’s singing, so we showed her mother how to record her favourite songs, first on a Step-by-Step, a single-button device on which a sequence of items can be recorded, so Judy could hear a song by just hitting one button repeatedly.  Soon Judy moved on to a Communication Builder with the lines of a song recorded on 4 squares with matching pictures that she learnt to hit in sequence to hear the song.  It was easy to swap between 4 songs on the Communication Builder, each song matched with an overlay containing different pictures. 

Once Judy knew the songs, she was able to use the Communication Builder to choose which song she wanted to hear her mother sing by selecting from an overlay that showed a key picture for each song.  Next, she was able to choose from a set of 4 activities – read a book, play with toys, watch a DVD, sing a song – each of which led to different sets of choices. 

Judy’s collection of overlays for the Communication Builder rapidly grew into an indexed communication folder.– a folder in which an index page of large categories, such FOOD and DRINK, THINGS TO TALK ABOUT, THINGS TO DO, QUESTIONS & ANSWERS, leads on to ever more specific choices.
 
Communication aid access
Every child will have specific strengths, weaknesses and needs, all of which need to be considered and addressed when choosing augmentative strategies.  Some strategies will be more functional for specific children than others because of their physical or sensory problems.

Many children with cerebral palsy who need to augment their speech have difficulties using their hands due to paralysis or severe tremor.  Whatever the difficulty, there are ways around it.

Children who cannot use their hands effectively at all, such as children with severe cerebral palsy or Rett syndrome, can use other access strategies.  The most common are eye-pointing, scanning and headpointing, either electronically, with a lightbeam pointer or headmouse or with a headstick, with which the child actually touches or selects items. 

Scanning may involve an electronic communication aid such as a Dynamo that can be controlled by one or more switches, or a low-tech indexed communication folder used with partner-assistance.  In partner-assisted scanning, the speaking partner points to or says each item in turn and the child signals YES when the wanted item is reached.

Index finger pointing is an important skill which should be taught to every child with speech impairments who can use their hands.  It may be necessary to set up fun activities such as finger painting or using push button toys that can be done with one finger.  Do them co-actively while helping the child to extend the index finger and flex the unwanted fingers.  Eye/hand co-ordination may be developed at the same time, by refusing to let the child touch any item they are not looking at.

Communication aids which can be used by pointing include:

  • Communication boards or folders made with photos, drawings or written words
  • Speaking communication aids either set up with paper overlays or dynamic displays
  • Keyboards, with or without voice output

Even after therapy there will be some children with CP who can only point with a fist,  who will need enlarged communication displays  and keyboards.    And of course there will be some children who cannot use their hands at all.
              
Low tech strategies can be used by eye-pointing, but most electronic communication aids require the user either to press buttons on the device or to activate switches to control the device. There are sophisticated electronic communication aids which are operated by eye gaze or head movement.  These are geared to wheelchair users and most are expensive.
Switches come in all shapes and sizes, and can be operated by head movements, foot or leg movements - any movement the user can control.

Devices which speak the options aloud as they are scanned, cater for children with visual impairments or who find it hard to keep their eyes on the screen.

It's important to remember that comprehension is independent of physical  skill.  A child with virtually no controlled movement may still have age-appropriate understanding.  An eight-year-old struggling to hit a switch should not receive a nursery rhyme as a reward - a ''Knock Knock" joke might be more appropriate.


Today & Tomorrow Systems
Even young children without functional speech usually need more than one augmentative strategy to address their expressive needs, and as they grow older their needs change. With preschool children the first big jump will obviously come when they start school, when they will need to communicate with many new people and undertake new tasks.

Work on a ‘tomorrow’ system needs to start today – that is, each child’s team needs to look to the future, and think of the vocabulary that the child will need at school, and how it can best be represented, together with the new tasks the child will be faced with, and how best they can be addressed.  For example, expanding vocabulary needs might be most easily met by a low-tech system such as an indexed communication book, providing it is set up to allow new items to be added easily.  Counting, a new task, is well-suited to voice-output communication aids but a child using 8-location overlays on a Communication Builder will have to move to the next size – 16 locations.  If this is not possible, then it will be necessary to ensure other options are available such as a low-tech number board with large squares.

Empowerment
Every effort should be made to give each child with significant communication impairments access to the most empowering communication strategies possible.  This does not mean access to the most expensive communication equipment. 

Empowering communication strategies include both those which are immediately highly functional and those which allow and encourage future skill development.  The card Judy used to get people to lift her up was immediately empowering.  The number card at the end of Sam’s communication folder, to which his mother points as she sings a counting song, is empowering in that it sends a strong message that Sam is expected to learn to count, and provides a simple way for people to increase Sam’s learning opportunities.

Words, words, words
A major challenge in working with young children (or any communication aid user who is not literate) is to provide an adequate vocabulary and to give the child the opportunity to generate sentences and ask questions.  To give you an idea of the extent of the problem, a 5-year-old speaking child may use more than 5,000 words.  Most will certainly be using 3,000 words.  Few symbol folders contain more than 100 cards with one symbol each.  An indexed communication folder such as a PODD may contain hundreds of words and symbols, as might a basic dynamic display device such as a Dynamo.  Still nothing like enough.  Every child using a device with such a limited vocabulary needs a way of saying “The word I want isn’t here!”

And how do you organize the words you do have, so the child can find them?  The obvious answer is in categories, but that pre-supposes that the child is familiar with the concepts – knows to look for ‘cat’ on the animal page, and ‘doctor’ on the occupations page.  In fact, young children will need to be taught the categories and what goes in them.  It is possible to make this into a game.  Start with a stack of photo or symbol cards picturing animals and people doing things.  Mix the cards up and then help the child sort them into the two categories, talking about them as you go.  Gradually add more categories such as foods, toys, places, body parts and so on.  Then start subdividing categories in various ways – for example, family people, school people, working people, children, adults.  Obviously this is an activity for 3 or 4 year-olds, not 2-year-olds!

Language
An important issue to consider with children is how they should be enabled to use language.  Often children are just given sets of nouns to choose from, which allow them to answer adults’ questions – usually “What do you want?” or “What’s the matter?”

When Eva selects a card e.g. ‘apple’ the only interpretation is that Eva wants an apple – there is no way for her to say ‘I ate an apple’, ‘I hate apples’, ‘This is a big red apple’, ‘I want apple pie’ or anything else about apples.  Sometimes children are given enough cards to make a sentence but typically this is a stereotyped sentence “I want XXX please” which does not allow the child to change the meaning of the original selection.

Single nouns are OK for a 2-year-old, but only having single nouns available is really disabling for a 4-year-old.  That does not mean that picture cards should not be used at all.  Picture cards are always valuable for initiating requests, but as children mature they should be extended by systems allowing more sophisticated functions such as commenting, rejecting and asking questions.  

Another language strategy, often used with voice output communication aids, is to put everything in pre-recorded sentences so when the child presses the ‘apple’ symbol the device says “May I have an apple please?”  This may be even more confining than just having single words, as it removes any possibility of another interpretation.

Ideally we should give the child access to all the individual words needed to make all possible sentences about apples, but that is impractical, and assembling any sentence then becomes a real challenge.

Somehow we need to find a workable compromise.  If a child is using a communication folder or a device with dynamic displays it is possible to make a set of useful phrases easily accessible from each page “I like…”, “I don’t like…”, “I want…”, “I don’t want…”, “I want to talk about…” and a very useful question, “What about you?” giving the possibility of a real conversation, “I like strawberries.  I don’t like apples.  What about you?”

Some things do need to be available as whole utterances. These are things which need to be said quickly – greetings, jokes, calls for attention “Mummy, come here”, “I need the toilet”, lines of songs or stories, news and questions “What’s that?” “Where are we going?” “Why not?” and so on.

Literacy
The difficulty we have in enabling children who need augmentative communication to access the full resources of language makes one thing clear. Literacy is vitally important for these children.  For children who have impaired speech, literacy is crucial – literacy offers them freedom of communication.  Literacy is more important for children who cannot speak than it is for children who can.

We need to promote book reading and print exposure for all pre-schoolers, using communication aids to allow children to choose the books they like, and to participate in book-reading.  We need to send these children off to school with the resources which will allow them to access the regular curriculum, regardless of their speech and pencil skills.

Remember, reading is about making meaning.  Reading is not about reading aloud.  Word recognition can be assessed by asking children to point to specified words, not say them aloud.  The acquisition of meaning can be assessed by multiple choice or yes/no questions.

In conclusion
Whatever augmentative strategies children use, they are their voices and they have to be as available to them as our voices are to us. 
Young children cannot take expensive electronic aids into the playground, but they can and should take communication cards or a Hiptalker –an electronic device they can wear – which allows them to say YES and NO and to ask for important things, including their other communication systems.

The aim is for all children with cerebral palsy to be able to communicate and to receive the best education possible, regardless of whether they can speak clearly.

As Anne Mc Donald has written,

“Communication falls into the same category as food, drink and shelter - it is essential for life.
Without communication, life is worthless.’



 
Appendix #1  Communication Intervention for Pre-Schoolers


Because the early years are crucial for language development, one cannot delay.  Regardless of diagnosis, children need to start using language, whether the language is spoken, pictorial or signed, between the ages of one and two.  In an ideal world the following options would be available to all children at risk of significant speech delays in order to provide maximum language stimulation and preparation for school entry:
  • Speech therapy
    Ideally, this should be provided by a therapist with PROMPT and Augmentative Communication training.
  • Signing and gestures
    Hand signs can be taught to very young infants.  They will also need to be taught to family members and later to kindergarten and day care staff.  Unfortunately they will not be useable by children with severe cerebral palsy.
  • Signals for yes and no
    Ideally these should be used without assistance, and not require any technology e.g. nod/shake, eye blinks, hand movements.  Yes/no boards should be available for all children who do not have clear gestural yes/no responses.
  • Picture cards
    These are cards with pictures of common items are set up in accessible locations e.g. a card with a picture of food is stuck on the refrigerator with a magnet.  To ask for food child removes the card and takes it to an adult.  Children who cannot move around are given similar cards on a board or tray they can reach.
  • Symbol boards or book
    These are collections of pictures and symbols arranged according to subject that may be used to make comments and express feelings, as well as asking for things.  Depending on the child these may be used by finger or fist pointing (with or without facilitation) or with eye pointing.  Large folders such as PODDs are more easily carried by children who use wheelchairs, but small photo albums or wallets can be clipped to belts and worn by walking children.
  • A Cheaptalk, Communication Builder, Go-Talk, Step-by-Step or similar portable voice output communication aid
    This sort of device is essential for singing along, talking to other children and joining in group activities.  The aids listed all have digitized speech – that is they replay utterances recorded by a speaking person.  This means they can be programmed to speak in any language.
    Children who have severe physical impairments and who are unlikely to develop intelligible speech before starting school are likely to require a more sophisticated voice-output communication aid which contains more vocabulary and which supports a range of access strategies. 
  • Literacy exposure
    Read them stories, incorporating communication aid use whenever possible.  Computer-based activities using software and hardware such as Clicker 5 and Intellikeys, or a switch-adapted mouse and an appropriate switch, and books on CD-ROM or Powerpoint are also very valuable - especially for children who cannot turn pages. A Jelly Bean switch is a good general switch, but an expert switch assessment will be needed for children with severe physical impairments.
  • Work on hand skills including index finger pointing
    Children whose hand skills are unlikely ever to allow them to write or use regular keyboards should be starting to explore alternatives, such as expanded keyboards with keyguards or on-screen keyboards with switch or mouse access.  

 
Appendix #2 – Strategies for augmenting speech

  • Gesture and body language
    These are used to some extent by almost everyone. Some formalized gestures, such as nodding the head for ‘yes’ and shaking for ‘no’, are powerful, but there are intrinsic limits on the sophistication of communication obtainable by gesture and body language alone.  While a person may respond to questions or make basic needs understood with gestures, carrying on a conversation is virtually impossible.  If a child uses a large number of gestures with special meanings, it is a good idea to document them in a folder, with photos if possible, to tell the people around the child what their gestures mean.
  • Sign Language
    Hand signs are often taught to children with delayed speech.  They are useful, but require good fine motor skills.  Unfortunately many people with speech impairments also have difficulty reproducing the sequences of fine movements necessary for signing (and handwriting).  As a result, they often end up able to recognize many more signs than they can produce.  And, of course, hand signs are only useful if everyone the child interacts with recognizes the signs.
  • Communication aids
    These are devices specifically developed or adapted for use by people with severe expressive impairments.  Because these people have very varied skills, needs and problems, there are many communication aids, ranging from simple communication boards to lap-top computers which speak.  Some communication aids require literacy, but many do not.
  • Communication boards or books
    These represent language in words, photographs or specially drawn symbols.  There are many symbol systems (Blissymbols, Picsyms etc) but they all share the same limitation—a communication board user can only say what the person who assembled the board or book thought was necessary or suitable. It is impossible to provide enough symbols or phrases to cover all situations, and the larger the number of items the harder the system is to use.
  • Indexed communication books
    These may be set up to allow the user to compose their own sentences, or they may be set up with a single symbol referring to a whole sentence.  The least useful just contain nouns, with no sentence structure at all.  The most complex are PODDs (see below for suppliers).
  • Speech generating devices (SGDs)
    These are electronic communication aids that talk, either in synthetic electronic speech or in digitized human speech.  There are many of these, ranging from single-utterance devices (e.g. the BIGmack) to aids which may contain thousands of utterances (e.g.the Tango) and text-to-speech devices which say anything which is typed in an alphabetic language (e.g. the Lightwriter). 
  • Aids which digitize speech
    These sound human and can easily be recorded in any language, but they have the same limitation as communication books–the user can only say what the person who recorded the utterances thought was necessary or suitable.

The two most common types of electronic communication aids use paper overlays or dynamic displays to allow the user to find the utterance they want to say.

Paper overlays need to be changed when the topic changes, so the user needs to carry a folder of overlays as well as the device.  The downside is the time taken and the adult intervention needed to change overlays.  The positive aspects are the child has to stay on topic, and can’t just move through screens at random, as sometimes happens with dynamic displays.  The cheapest paper overlay devices are significantly cheaper than the cheapest dynamic display devices, and they are tougher.  Some examples are the Macaw, Message Mates, the Communication Builder, Cheaptalks, and Go Talks.

Dynamic display devices have touch screens displaying sets of symbols.  When a symbol referring to a category is pressed, such as ‘I’m hungry’ the screen changes, leading to more options associated with food.  These devices are powerful, especially for children with severe physical impairments who are using scanning, because they allow users to ‘drive’ to the selection they want.  The main disadvantage is that some young or impulsive users get hooked on changing screens, and do not use their devices functionally.  Other disadvantage are that dynamic display devices are relatively expensive and fragile.  Some of the cheaper examples are the Dynamo and Springboard.  These also include environmental control units.

Other speaking communication devices for older users run communication software along with regular word processing and internet access packages e.g. the Chat-PC, the Optimist II and the Minimerc.

Aids which speak what is typed can say anything typed in a Eurpoean language, but in a somewhat robotic voice.  The most common of these are the Lightwriter, Dynawrite and Allora.  Obviously composing typed messages takes time and requires good literacy skills.
 

Written communication
Spelling or selecting characters gives people without fluent speech access to an unlimited vocabulary understood by most of the people with whom they come in contact.  Written communication loses the inflection of speech and sign, but it is nonetheless the most empowering non-speech communication strategy.  Because it is relatively slow, generating written communication requires intense concentration on the part of the speller and patient communication partners. 

Every effort should be made to encourage literacy development in all children with CP.  Almost all sighted children can learn to recognize words and read for meaning, regardless of whether they can read aloud. 

Most children who cannot speak will also find hand-writing difficult.  Alternative strategies for creating text, such as keyboards or scanning systems, should be introduced as soon as it is clear that a children’s handwriting is falling significantly behind children of the same age.
 
Resources for low tech and low cost communication aids

Mayer-Johnson - Boardmaker Software for making communication boards and books and paper overlays for communication aids. 
PO Box 1579, Solana Beach, CA 92075-7579  USA
Telephone: 1-858-550-0084 (outside U.S.)  Fax: 1-858-550-0449
www.mayer-johnson.com

Ablenet - Flash and Step by Step communication aids
Ablenet, 2808 Fairview Avenue North, Roseville, MN 55113 USA
Telephone 01-651-294-2200 (outside U.S.)  Fax 01-651-294-2222 (orders)
www.ablenetinc.com

Attainment - Go-Talks and other aids
PO Box 930160, Verona, WI 53593-0160  USA
Telephone 1-608-845-7880 (outside US)  Fax: 1-608-845-8040
www.attainmentcompany.com

EnableMart 
Sells a large range of communication devices
EnableMart, 4210 E. 4th Plain Blvd. Vancouver, WA. 98661 - USA
Telephone  1-360-695-4155 (outside U.S.)  Fax: 1-360-695-4133
www.enablemart.com

Enabling Devices 
Large range of cheap communication aids, switches and adapted toys including Communication Builders and Cheaptalks
Enabling Devices, 385 Warburton Av., Hastings on Hudson, NY 10706 USA
Telephone 1-914-478-0960 (outside U.S.) Fax 1-914-478-7030
www.enablingdevices.com

ISAAC  International Society for Augmentative Communication

ISAAC, 49 The Donway West, Suite 308, Toronto, ON,M3C 3M9
Canada
Telephone 1 416 385-0351 (outside U.S.)  Fax: 1 416 385-0352
www.isaac-online.org

PODD
Software and information for creating complex communication folders
Cerebral Palsy Education Centre (CPEC)
Box 211, Glen Waverley, Victoria 3150, Australia
Telephone 61-3-9560 0700 (outside Aust.) Fax 61-3-9560 0669
podd@ cpec.org.au

Contact information
Rosemary Crossley, A.M., M.Ed., Ph.D
DEAL Communication Centre Inc.
538 Dandenong Rd., Caulfield 3162 Australia
email – dealcc@vicnet.net.au





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