Communication
Communication Barriers
One of the most prominent barriers for people who have Angelman
syndrome is their lack of speech resulting in the inability to clearly
communicate needs, wants, feelings and opinions. As non-speakers,
without any communication support, they are unable to enjoy the
general everyday conversations that typical speakers take so for
granted. Their lives inevitably become organised by others with no
opportunities for their own input. Having no speech negatively
impacts their sense of autonomy, amplifies isolation, prevents social
inclusion and prevents access to a full
education.
The significant speech/language impairments seen in AS may be
due to:
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Motor problems (low tone in oral area)
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Oral structures (protruding tongue)
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Intellectual disability
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Oral apraxia (difficulty with motor planning)
Candidates for AAC
The Angelman Revolution
Read the article, ‘Join the Angelman Revolution!’
A group of proactive parents and professionals from around the world have always ‘presumed competence’ for non-speakers. These individuals have collectively forged ahead, making full use of current technologies and AAC to pursue what has become known as the ‘Communication Revolution’. Over the past decade several of these specialists have shared data and information, provided workshops around the world, and collated excellent research-based resources for both parents and educators.
In summary, people with Angelman Syndrome are increasingly learning how to use AAC to communicate successfully.
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Comprehension is much greater than output so high expectations for learning need to be maintained.
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Abilities and methods vary widely, so always presume competence.
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They need a multi-modal communication system that incorporates AAC (Augmentative and Alternative Communication)
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Augmenting communication involves both speech and writing, and also technology related to teaching and learning.
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Frustration with communication is often the reason for negative behaviour such as pulling hair, hitting, biting. This behaviour can also be an indication of some deeper underlying issue such as pain or anxiety. (Read The Crisis in Pain Control for Children who are Complex, Non-Verbal, or Cognitively Impaired - The Complex Child.)
Parents: Get Informed
If you have a child with Angelman syndrome, it is worth investing your time into
gathering information on AAC and multi-modal communication systems. Just like any
child learning their first language, it is never too early to start teaching your child their
'AAC first language'. YOU model the language system you want your child to use.
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Does AAC really work with Infants and Toddlers - Carole Zangari
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Do’s and Don’ts of AAC - Multi-modal communication - Amanda Hartmann
The method of AAC you eventually select for your child – whether it is combination of
signs plus a high-tech and low-tech options, or just a dedicated device, or a generic
tablet with an app – will become your child’s ‘first language’.
It is appropriate to use this language system all the time in the home environment –
model, model, model. The same system should be used and reinforced when the child
is at school or out in the community.
Getting Started
Download "I Have Something to Say". This is a free informative booklet that has been
written BY a parent FOR parents and carers of children and adults with Angelman
Syndrome. It explains communication and Augmentative and Alternative Communication
(AAC), the types of systems that could be used, and why everyone should have access
to a full language system. There are tips on how to get started and how you can use the
systems to ‘model’ language to support development of communication. There is also a
list of links for further information and advice.
Communication support in NZ
Talklink Trust NZ - Contact Talklink here: Website, Facebook
The Talklink Trust, New Zealand has contracts with the Ministry of Health and ACC, which allows TalkLink to offer free specialist assessment services to eligible clients. If your child has a diagnoses of Angelman syndrome, you/your child’s Speech therapist can request an assessment. Children with Angelman syndrome respond well to learning language and literacy when they are provided with access to multi-modal systems of communication ( AAC) as early as possible. TalkLink works with people of all ages who, due to a disability, have difficulties with speaking, writing, learning, and/or with controlling their environment. The TalkLink team is able to provide services throughout New Zealand, and usually travel to meet with their clients in a location chosen by the client. The Angelman Network can support your application for a communication device from Talklink.
Assistive Technology Alliance NZ (ATANZ)
ATANZ aims to promote Assistive Technology by ensuring quality assistive technology service provision through the establishment and monitoring of best practice assistive technology standards.
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All people with disabilities have the right to assistive technology support in order to realise their full potential.
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All people with disabilities have the right to be included and participate in their community.
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People accessing assistive technology services have the right to the best possible service.
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Geographical equity of service throughout New Zealand must be established and maintained.
Media Articles about AAC in New Zealand
"Guilt"
by Mary-Louise Bertram, patron of The Angelman Network
Parent guilt may or may not be something you struggle with. If it is, then this is for you.
Many messages have hit my inbox in the last few months whilst I've been off. The overwhelming feeling in each message is guilt. Guilt that 'I didn't know all this stuff', that 'as a parent I should have done this sooner', guilt that 'I should have pushed for earlier’, 'I shouldn't have trusted the SLP', and guilt that 'I'm not doing enough'. Here's my thinking... .Read more
Resources
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Angelman Syndrome Awareness Day - complex communication needs: PrAACtical AAC supports a community of professionals and families who are determined to improve the communication and literacy abilities of people with significant communication difficulties.
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Research study on use and acceptance of AAC systems by children with Angelman syndrome
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Put together by a community of parents, therapists, doctors and teachers: BridgingApps
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Top 5 – best protective iPad cases
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Information sheets on ALS:
Combining signs and/or symbols together with other AAC methods has been shown to be very effective
for many children and
adults with Angelman
Syndrome.
What is AAC?
"Augmentative and alternative communication (AAC) is an umbrella term that encompasses the communication methods used to supplement or replace speech or writing for those with impairments in the production or comprehension of spoken or written language." - Wikipedia
Children with Angelman syndrome vary greatly in the types of AAC they use, often employing more than one mode of communication.
What is Aided Language Stimulation (ALS)? (also called Aided Language Modelling)
ALS is the process of modelling AAC language in everyday settings. The communication partner talks to the person while also pointing/selecting keywords on the person’s AAC system.
ALS does not rely purely on auditory processing
Information sheets on ALS:
What is Assistive Technology (AT)?
Assistive technology (AT) is specialised equipment and technology that students with additional learning needs use in class to increase or improve their ability to participate and learn.
Communication Strategies and Training Series for AS
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Communication Strategies for Children and Adults with Angelman Syndrome - Mary-Louise Bertram, Loud Noises
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Communication Training Series - Angelman Syndrome Foundation (ASF)
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Communication Strategies for Children with Angelman Syndrome - by Cleveland Clinic Children’s experts in pediatric speech and language pathology
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Strategies for Fostering Communication Skills - Dr Stephen Calculator
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Some Angelman Tips - Kate
NZ Sign Language (NZSL)
Makaton is a communication programme based around a core vocabulary, using speech, signs and/or symbols.
Makaton New Zealand/Aotearoa (MNZ/A)
When signs are used with Makaton they are used in the order of spoken English to enable us to sign and speak at the same time. The symbols have been especially designed for Makaton.
Nobody is ‘too anything’ at Carlson
A great article on the new AAC approach being initiated at Carlson School, in Auckland.
“It’s here! We’ve got it!. Read more...
iPad offers family new hope
Article on the Winther family. "…Paediatric neurologist at Starship children’s hospital Rakesh Patel says it’s important to encourage non-verbal forms of communication including hand and facial gestures, computer programmes and photographic mediums."
Read more here...
Communication Matters
Spring 2015
New Zealand Speech-language Therapists' Association
In this issue, our featured organisation is The Angelman Network. Ursula Cranmer talks about the Angelman Literacy Project, barriers faced in New Zealand by people with Angelman Syndrome and those who support them, and how research and resources can help remove these barriers. Read here:
The Angelman Network: The Right to a Voice: pg 4 - 5, Communication Matters, Spring 2015
Individuals with Angelman syndrome DO communicate naturally in their own way by employing more than one mode of communication, eg. using sounds, gestures, posturing, and eye direction. However they are frequently misunderstood and marginalised due to their inability to actually speak. This makes it difficult for them to build meaningful friendships or to give autonomous input into their daily live.
Though people with AS have severe to profound communication impairments and complex communication needs, their receptive language is typically more advanced than expressive language. This makes them excellent candidates for Augmentative and Alternative Communication (AAC). Families need encouragement and support to learn about the new AAC visual language and should be advised to pursue formal AAC support as a priority. There are also many active groups on social media that cover topics on AAC.
Just like teaching a typical child to talk, the AAC learning & teaching process should ideally be interactive and fun for everyone. When parents/siblings/carers/ aides all regularly model (demonstrate) a multi-modal form of communication incorporating a combination of preferred gestures, signing, picture symbols and ideally a voice-output device, the child with AS will eventually pick it up. Exposure to AAC modeling(Aided Language Stimulation) is vital to ensure the child is fully included in all family activities. Once a robust communication system is established at home it should be used everywhere, all the time. When a person with AS uses their communication device in a mainstream setting, they have a far better chance of being noticed, acknowledged and included.
What is AAC?
"Augmentative and alternative communication (AAC) is an umbrella term that encompasses the communication methods used to supplement or replace speech or writing for those with impairments in the production or comprehension of spoken or written language." - Wikipedia
Children with Angelman syndrome vary greatly in the types of AAC they use, often employing more than one mode of communication.
What is Modeling/Aided Language Stimulation (ALS)?
ALS is the process of modeling AAC language in everyday settings. The communication partner talks to the person while also pointing/selecting keywords on the person’s AAC system.
ALS does not rely purely on auditory processing
For more info on how to Start Modeling, click below.
Communication Strategies and Training Series for AS
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Communication Strategies for Children and Adults with Angelman Syndrome - Mary-Louise Bertram, Loud Noises
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Communication Training Series - Angelman Syndrome Foundation (ASF)
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Communication Strategies for Children with Angelman Syndrome - Dr Stephen Calculator
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Some Angelman Tips - Kate Ahern
NZ Sign Language (NZSL)
Makaton is a communication programme based around a core vocabulary, using speech, signs and/or symbols.
Makaton New Zealand/Aotearoa (MNZ/A)
When signs are used with Makaton they are used in the order of spoken English to enable us to sign and speak at the same time. The symbols have been especially designed for Makaton.
Free Download !
"I have something to say" – by Tracey Campbell, ASSERT
You can download this comprehensive booklet - by Tracey Campbell, on behalf of ASSERT. We are extremely grateful to parents in our global Angelman community who make and share such excellent resources.
Individuals with Angelman syndrome DO communicate naturally in their own way by employing more than one mode of communication, eg. using sounds, gestures, posturing, and eye direction/gaze.