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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:

  • Motor problems (low tone in oral area)

  • Oral structures (protruding tongue)

  • Intellectual disability

  • 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.

  • Comprehension is much greater than output so high expectations for learning need to be maintained.

  • Abilities and methods vary widely, so always presume competence.

  • They need a multi-modal communication system that incorporates AAC (Augmentative and Alternative Communication)

  • Augmenting communication involves both speech and writing, and also technology related to teaching and learning.

  • 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. 

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.

  • All people with disabilities have the right to assistive technology support in order to realise their full potential.

  • All people with disabilities have the right to be included and participate in their community.

  • People accessing assistive technology services have the right to the best possible service.

  • 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

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.

NZ Sign Language (NZSL)

 

Makaton New Zealand/

Aotearoa (MNZ/A) 

 

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. 

 

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.

NZ Sign Language (NZSL)

 

Makaton New Zealand/

Aotearoa (MNZ/A) 

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.