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Time for another newsletter from the Augmentative Communication World Network (ACWN).
This month the newsletter contains information and
resources for parents of children for whom augmentative communication has been
recommended. Most parents and children use some augmentative communication
modes (often without realizing it) before a more formal communication system is
suggested; an event that usually gives rise to many questions. “Won’t this
interfere with learning to talk?” “Doesn’t this take a lot of time?” The
following resources contain many answers to parent’s question, along with videos of children, even toddlers and
preschoolers, who are developing language, communicating, learning, and
becoming confident students, friends, and family members.
Communication Matters is a UK national charitable organisation of members
concerned with the application of augmentative and alternative communication (AAC) for people with complex communication needs. Focus
On... is a set of seven introductory topics related to
augmentative and alternative communication written and published in a clear and
easy-to-understand style by Communication Matters. The seven leaflets: What is AAC; Using Symbols for
Communication; Let Your Hands Do The Talking; What can I say? First Steps;
Speaking with someone who uses AAC; Communicating with Patients who have
Speech/Language Difficulties, Accessing Communication Aids and Computers are available in PDF and printed forms, and as individual
PowerPoint presentations. http://www.communicationmatters.org.uk/Publications/Focus_On/focus_on.html
ISAAC members are free to translate the Focus on… leaflets into their national
language providing the following wording appears in the translated material:
‘Originally published in English by Communication Matters / ISAAC-UK’. Please contact admin@communicationmatters.org.uk
for a copy of the master artwork for translation.
Central Coast Children’s
Foundation (CCCF), USA.
It is important that responsible clinicians master the
evidence that demystifies the myths that surround AAC. It is also important
that they help fearful parents and uninformed professionals understand the
compelling reasons for early action, giving current examples of enlightened
early intervention practice in AAC. In an effort to make such evidence and
resources readily accessible to busy practitioners, a comprehensive article
written by Harvey Pressman, is available via the Central Coast Children’s
Foundation’s web site.
http://www.centralcoastchildrensfoundation.org/myths.htm
This article is also available in Spanish http://www.centralcoastchildrensfoundation.org/smyths.htm
The University of Washington, USA.
This university site has information to dispel myths and misunderstandings about assistive technology (AT) and augmentative and alternative communication (AAC), and the many beliefs that create barriers for AAC & AT users of all ages. http://depts.washington.edu/enables/myths/myths_intro.htm
Another section introduces the topic further and tackles myths head on by presenting stories that help to dispel and reduce barriers to the introduction of AAC. http://depts.washington.edu/enables/myths/myths_aac_intervention.htm
The Enables web site
also discusses myths that surround AAC in relation to toddlers and preschoolers
and provides videos of young children learning switch control, taking turns,
using eye gaze and making requests for toys and music. http://depts.washington.edu/enables/myths/myths_aac_inter_infants.htm
The
AAC Institute, USA. This internet resource
that supports parents and other family members as they share the excitement,
wonder, and joy of seeing children communicate using AAC interventions. Parents
with children who rely on AAC often find themselves in isolated situations and feel
disconnected from other families. The AAC Institute offers parents a way to share their experiences. http://www.aacinstitute.org/Resources/ParentsCorner/intro.html
A Parent’s View.
Robin Hurd is the parent of four
children and a Parent Support Liaison with the AAC
Institute. Robin is known
internationally for her dedication to augmentative communication and to her
family. The Autism Life presents
an interview with Robin in which she describes her children’s use of
augmentative communication. http://www.theautismlife.com/interviews/robin.hurd.augmentative.communication.interview/
The Indiana Resource Centre for Autism, USA.
An article for parents of children with Autism Spectrum
Disorders, ‘When Your Child is Diagnosed With An Autism Spectrum Disorder’, is
available in Spanish. You will find: Cuando su hijo
es diagnosticado con un trastorno del espectro autista: Un recurso para las familias cuyo niño ha sido recién
diagnosticado. http://www.iidc.indiana.edu:80/irca/fspanish.html
Novita Children’s Services, Australia.
Novita is
celebrating seventy years of caring for children with disabilities. What a
great achievement! Novita’s web site describes parents, carers and family
members as the 'magic ingredient' in the life
of a child with disability! These individuals often make it possible for the
child to achieve extraordinary things despite their disability. Novita’s web
page ‘Living with
disability - parents and carers’ provides
excellent resources for mothers, fathers and many other carers. http://www.novita.org.au/Content.aspx?p=8
The
Childhood Apraxia of Speech Association of North America’s (CASANA)
mission is to strengthen the support
systems in the lives of children with apraxia, so that each child has the best
opportunity to develop speech. www.apraxia-kids.org
This site also offers information for parents of children who
may find AAC useful following a diagnosis of apraxia. See the Family Start
Guide. http://www.apraxia-kids.org/site/apps/nlnet/content.aspx?c=chKMI0PIIsE&b=839037&ct=837215
The
Apraxia Kids web site states: ‘Often when
someone raises the idea of using sign language for a child with apraxia,
parents may experience confusion and even fear. After all, "The
child can hear just fine! Why would we use sign language for a hearing
child?" Or "But won't using the sign mean my child won't need
to talk? Won't it keep him/her from speaking?" Conversely,
some parents report that their child's speech language pathologist has told
them that the child will rely on sign and thus not learn to speak. The reference
below refutes many of myths about signing by providing an article on the use of
signing as a suitable communication mode. http://www.apraxia-kids.org/site/c.chKMI0PIIsE/b.980831/apps/s/content.asp?ct=464165
Supporting Communication Through AAC (Alternative and Augmentative Communication) contains 12 modules. It aims to help parents, teachers and professionals to support individuals who may benefit from using AAC. The modules are available to download from this page as Pdfs. http://www.scope.org.uk/education/aac.phpModule 1: Introduction to AAC [pdf 30k]
Module 2:
Frequently Asked Questions [pdf 30k]
Module
3: The Nuts and Bolts of AAC [pdf 2Mb]
Module 4:
Games and Activities [pdf 1Mb]
Module
5: Accessing Equipment, Books and Charts [pdf 800k]
Module
6: Software [pdf 1.6Mb]
Module
7: Children within the Foundation Stage [pdf 800k]
Module
8: Lifelong Learning (section 1) [pdf 500k]
Module
8: Lifelong Learning (section 2) [pdf 800k]
Module
8: Lifelong Learning (section 3) [pdf 500k]
Module
8: Lifelong Learning (section appendix) [pdf 80k]
Module 9:
Children and Adults with Profound and Multiple Learning Difficulties [pdf
300k]
Module
10: One School's Approach [pdf 5Mb]
An insight into how the development of the communication skills of children who
attend Ingfield Manor School http://www.scope.org.uk/education/ingfield.php has been addressed. Their school
curriculum and the structure of the communication books used are discussed and
illustrated in detail.
Module
11: One County's Approach to Supporting AAC in Mainstream Schools [pdf 30k]
Module
12: Contacts, Web Resources and Discussion Groups [pdf 30k]
A Disability Resource Book for Teachers: How to Integrate Students with Physical Disabilities into Mainstream Schools. There are seven chapters in this book, which aims to help teachers meet the challenges of integration. It reflects the experiences faced by teachers and other professionals when children with complex communication needs were integrated into mainstream schools in Singapore.
1. Inclusive Education.
2. Understanding Disabilities.
3. Assistive Technology.
4. Accessibility.
5. Integrating with People with Disabilities.
6. Challenges.
7. Community Resources. http://www.spd.org.sg/form/SPD_Disability_Resource_Handbook_for_Teachers.pdf
Follow-up
to our June 2009 Newsletter - Communication Displays.
If you are looking for information on AAC that would
interest siblings, here’s the book for you. Very simply written and with
lighthearted illustrations I think it’s a real find!
‘Using
Words, Photos and Symbols’ has been developed as part of a
project funded by Surrey Children’s Fund, UK. The book, which is a free download, covers using symbols & photos
as well as sections on speech, signing, and objects to communicate. The book
goes well with our August newsletter since it was designed to give families
tips on making useful communication tools for their children. A series of templates and training
handbooks come with the booklet. To download (it is a large file) click on the
title page. http://www.communicationpeople.co.uk/Downloads/Using%20words%20photos%20and%20symbols.pdf
Following
up to our recent Literacy references:
The following sites offer further support
add to our collection.
Free
books from SET-BC, Canada.
http://www.setbc.org/setbc/accessiblebooks/freebooksforyou.html
These guides can be used by early childhood educators,
child care providers, early interventionists, and other early childhood
practitioners for promoting infants’, toddlers’, and preschoolers’ literacy
learning using interest-based and highly engaging activities.
http://earlyliteracylearning.org/pgpracts.php
News from Malawi.
Here is a wonderful story from
Victor Musowa in Malawi. His story gave me a great opportunity to check my AAC
cupboard for materials that would be useful for his programme. If you would like to support Victor or
make a donation toward his internet costs please contact him directly at abigvic@yahoo.com for the best way to make mailing
arrangements.
SHORT STORY.
Grace Salanje was born on the 24/05/98 in a small village near Blantyre city. She was diagnosed CP at five years. Mom reports that she had prolonged labor and Grace did not cry at birth. Due to difficulties accessing hospital services, Grace stayed home with no therapy until five years old when she started attending therapy at the main referral hospital in Blantyre (Queen Elizabeth Central Hospital) once a month. As years passed Mom noticed more challenges for Grace, ranging from communication, gross motor control and difficulty performing activities of daily living. Grace was identified by our team through a community leader who came to ask if we could go to see her. On the 10/11/08 I and the occupational therapist went to Grace’s village where we assessed her and together with the Mom we made up a list of priorities to work on. The assessment summary was Cerebral Palsy, Athetoid, with involuntary movements more to the left side of the body. Needs maximum support to sit and stand. Difficulty coordinating phonation with very low Maximum Phonation Time, and lots of associated facial movements during speech attempts. Good receptive language and comprehension. While there we learned that Grace’s Mom was divorced because of her disability as Dad believed that it was Mom who has contributed to Grace’s condition. Some of the priority goals included Mobility, Sitting aid, School, and communication. A therapy plan for Grace to attend our rehabilitation centre once a week was made and in January, 2009, we managed to enroll her at a public school. Looking at her difficulty in sitting, a wooden chair was made by a local carpenter and given to her to use at school. The class teacher came to a workshop at our rehabilitation centre where, among other things, she participated in working with communication boards and how to make them using Boardmaker. Together with the Mom we started working on plans to make a communication board for Grace. Mom and the teacher made a lot of drafts of things to be included in the communication board and I worked on putting their plans into a communication board using a computer at the internet café in the city. This took us more than three months to come up with the first set of boards, as the computers at the internet café are shared among a lot of people and you can only use them for a specific allocated time. In April this year our rehabilitation centre paid a local wheelchair technician to make a wheelchair for Grace, The process of making the wheelchair has taken us three months and with a lot of adjustments we now have what we have been waiting for, as Grace’s Mom doesn’t need to carry a 26kg (57 pound) girl on her back to school as she has been doing the past 6 months. With this new wheelchair and tray we are now able to put the communication board on the tray for easy accessibility. Grace and Mom are very motivated now and at one time Grace’s mom said “Now there is hope in my Daughter”. Grace comes for therapy twice a month as she can not manage once a week due to transport problem and she is the only bread winner, taking care of 6 other siblings. There will be more updates in the next story; I will not be able to send pictures as the internet is very slow and expensive.
Conference News from Singapore by Marta Aragon
Marta Aragon and Tynesha Hingst from the The Augmentative
and Alternative Communication Centre (AACC) with the Developmental Disabilities
Resource Centre of Calgary, Alberta, Canada (DDRC) attended the International
Association for the Scientific Study of Intellectual Disabilities (IASSID) 2nd PACIFIC ASIA CONGRESS, June 24 - 27,
2009 in Singapore.
DDRC is a non profit
organization with the mission to promote awareness and support communities to
include persons with developmental disabilities thereby strengthening
communities for all citizens. The AACC at DDRC
is dedicated to providing comprehensive augmentative and alternative
communication (AAC) supports
exclusively to adults with developmental disabilities and strives to create
understanding and awareness in the general community of the true capabilities and potential learning of
people with disabilities through augmentative and alternative communication
solutions.
IASSID is an international and interdisciplinary scientificNon-Governmental Organisation (NGO)
with official relations with the World Health Organization (WHO). IASSID
promotes worldwide research and exchange of information on intellectual
disabilities and is the first and only world-wide group dedicated to the
scientific study of intellectual disability. IASSID is committed to enhancing the quality of life,
health and well-being of people with intellectual disability and their families
through scientific research and the application of research in both policy and
everyday practice.
We found that there were strong connections between IASSID’s commitment, DDRC’s mission and vision and the AACC’s primary purpose that we felt compelled to attend
this conference. Through the
greatly appreciated financial and professional support of DDRC, we were able to travel to Singapore to present and
participate in this international congress. Conference streams included: Quality of life, behavior
support, aging, early intervention, transition and post-school outcomes,
physical health, education-learning disabilities, policy and practice, mental
health, families/relationships and augmentative and alternative communication.
Our presentation was titled Learning to Successfully
Implement Augmentative and Alternative Communication Solutions within a
Framework of Community Inclusion for Adults with Developmental Disabilities. We discussed the need for socially-oriented AAC
intervention by focusing on the concepts of functionality versus diagnosis,
goals and strategies, social vulnerability. We also stressed the great
importance of social network participation and motivation. Currently, the AACCis working hard to develop an AAC
Intervention Guide with a strong orientation toward social networks and an
approach that will cover every step from assessment through to follow up.
We strongly believe that the field of
augmentative and alternative communication can offer tremendous contributions
to all of the topics presented at the IASSID congress and can be instrumental
in enhancing quality of life, health and well-being of individuals with
intellectual/cognitive disabilities and the community in general.
Given IASSID’s
mission we would encourage a larger representation of the AAC field within
future conferences. In a 4 day conference with 9 simultaneous rooms offering
presentations, only one and a half day and one room was dedicated to AAC. While
Australia had a very strong presence in the AAC stream there is a great need
for more individuals involved in AAC to participate in order to promote an
understanding of how our field can benefit such traditionally neglected
populations as individuals with intellectual/cognitive disabilities. We were
very satisfied to find that the majority of presenters focused on the
achievement of quality of life
for populations with intellectual/cognitive disabilities - the ultimate purpose of all interventions,
including AAC interventions. We at the AACC are proud to recognize our work and the work of
our colleagues in the field who are striving to provide this population with a
higher quality of life through AAC solutions.
For more
information regarding Marta and Tynesha’s presentation at the IASSID 2nd Asia
Pacific Congress or to share ideas/suggestions, please do not hesitate to
contact them at martaaragon@shaw.ca ormartaa@ddrcc.com
Once again many thanks to Harvey for sharing these web sites.
Harvey’s Place:
Communication
Therapy International is an organisation working with people with
communication disabilities around the world. The organisations newsletter,
edited by Mary Wickenden, UK, is available on-line. The following www reference
focuses on Africa. http://commtherapyint.com/cti-news-letter.pdf
Sparadrap. This web site (in French) is an interesting example of a
way to use the Internet to communicate to young patients in a way that can help
improve patient care. Here is a description of the site prepared by a member of
our staff. http://www.sparadrap.org/
dotSUB
is a browser based tool enabling subtitling of videos on the web into and from
any language. There is nothing to buy and nothing to download. Recognizing the
potential of global communication powered by the Internet, the founders of
dotSUB created a web-based tool that enables video to be accessed in an open,
collaborative, "wiki" type environment. The dotSUB tool gives anyone
the ability to translate video content into multiple languages via subtitles
rendered over the bottom of the video. http://dotsub.com
I hope you will find useful references in
this issue of the Augmentative
Communication World Network Newsletter. Your comments and stories are always
welcome. I look forward to hearing from you and adding your views to our next
edition – October 2009. With best wishes. Anne. awarrick@rogers.com.