Library Thursdays: Sensory Integration Resources

Many people with Down syndrome also have sensory integration difficulties. This may result in adverse behaviour that is just put down to the person having Down syndrome. It is not always easy to determine that a child has sensory processing issues because the behaviour may be caused by something else - communication difficulties, executive functioning problems, medical issues, etc. Even if it is sensory, there are a wide range of sensory issues. The library has a couple of books describing what the various sensory issues are and how it affects behaviour. The Sensory Sensitive Child by Karen A. Smith and Karen R. Gouze and The Out-of-Sync Child by by Carol Stock Kranowitz both discuss these issues. New to the library is The Out-of-Sync Child Has Fun:Activities for Kids with Sensory Integration Dysfunction (by Carol Stock Kranowitz and T.J. Wylie). It is filled with activities to do with your child that will help them overcome the sensory factors so that they can participate more easily at school and at home. After a description of Sensory Processing Disorder, the book is split into sections for each of the sensory systems and related skills: touch, vestibular (balance and movement), proprioceptive (body position), visual, auditory, olfactory and gustatory, oral-motor skills, motor planning, fine motor skills and bilateral coordination and crossing the midline. Many of the activities have been contributed by parents or have variations that others have suggested.

Looking at the activities, I recognise many that educators (pre-school and others)and Occupational Therapists do with all children. The book tells what purpose the activities serve and also allows you to choose the most beneficial activities and avoid ones which will be counter-productive (e.g. stimulating when you want relaxing). It is also just a nice compilation of fun things you can do with your child.

Related resources:

Sensory Processing Disorder Resource Center - comprehensive site of all you'd want to know about SPD.

Article on Down's Syndrome Association UK's website - DS & Sensory Processing Disorder

Fine Motor Skills for children with Down Syndrome by Maryanne Bruni contains a chapter on Sensory Processing.

If you'd like to borrow any of the resources mentioned, just email us.

Get active with Rugby League: Inclusive Sports Volunteer Program

Western Sydney Rugby League Academy is launching the Inclusive Sports Volunteer Program which is aimed at increasing the levels of participation in sport, recreation and physical activity for people with disabilities. The program is calling on people with a disability with an interest in rugby league to nominate themselves to become a junior league volunteer in the following areas. Team Trainer, Team Management, Administration.

The program will commence:

Friday 5 June 2009
5.30pm – 7.30pm

Merrylands Sportsground Hall, Burnett St

Merrylands

Cost: $10 payable on the night

Click here for a flier with full details

Additional date for "Update on Down Syndrome" seminar: Auburn, 5th June 2009

"An Update on Down Syndrome" is a professional development seminar for adult disability services workers.Health and communication are two of the major issues impacting on the quality of life that people with Down syndrome can enjoy.

Behaviour labelled as "challenging" is often a reflection of health and communication impairments - requiring health and communication solutions.

This seminar will be relevant to professionals working to support people with Down syndrome in residential, respite, recreation, and employment services, and to anyone who works closely with people with Down syndrome, wishing to update their knowledge.

10.00 am - 3.00 pm

Friday 5th June, 2009

Social Enterprise Centre

Auburn

Cost per person: $132 - non-members; $99 – DS NSW members Enquiries to Siena O’Brien at carereducation@dsansw.org.au or phone 9683 4333

• Click here to download the flier and registration form

For other DS NSW information events scheduled for May and June 2009, click here.

Essex firefighters on You Tube

A 6 minute video has been posted to You Tube about the the firefighting course for teens with Down syndrome in Essex (UK) featured in this post.

Click here to view the video.

Families' Weekend 2009: The Tops, 6-8 November

This annual Down Syndrome event is a relaxing, live-in weekend for the whole family - with activities available if that's your preference.

Bookings are now open for this year's Families' Weekend:

6-8th November 2009

The Tops Conference Centre

Stanwell Tops (between Sydney and Wollongong)

A comprehensive brochure and registration form for Families' Weekend 2009 can be downloaded by clicking here.

If you would like to check out the link to The Tops to get an idea of the venue, go to www.thetops.com.au

This event is an annual activity of the DS NSW All the Way Project, made possible by funding from NSW Health, under the NSW Carers Program.

DownsEd: Number skills and speech and language books now available for free online

Down Syndrome Education International's "Open Access" project, making its highly regarded publications available online continues apace, with six new postings during April.

Three books on number skills development and three on speech and language development for children with Down syndrome from birth through teenage years are now available for free online on the UK website Down Syndrome Online. These books are from DownsEd's authoritative Down Syndrome Issues and Information education series.

The number skills books newly available online are:

• Number skills for infants with Down syndrome – 0-5 years [Open Access Full Text]


• Number skills for children with Down syndrome – 5-11 years [Open Access Full Text]


• Number skills for teenagers with Down syndrome – 11-16 years [Open Access Full Text]

The Number skills overview is already available for free online.

The speech and language books newly available online are:

• Speech and language development for infants with Down syndrome – 0-5 years [Open Access Full Text]


• Speech and language development for children with Down syndrome – 5-11 years [Open Access Full Text]


• Speech and language development for teenagers with Down syndrome – 11-16 years [Open Access Full Text]

The Speech and language development overview is already available for free online.

You can subscribe to DownsEd's News service to be notified of each new posting: www.downsed.org

UK teenagers learn to be firefighters

These British teens who all have Down syndrome have enjoyed and benefitted from a local fire-fighting course, reported by the Essex Echo last week (our thanks to John Smithies at DSA in London for the heads-up).

You will recall that our very own Travis has found a place in his rural NSW community through joining the local fire brigade, training with other adolescents.

Edit 28/04/2009: ..... and here's the video!

Library Thursdays: Praying with Lior and Victoria Goes to Brazil

Two very different items arrived in the library this week. Praying with Lior(film by Ilana Tractman, First Run Features, US, 87 min, 2007) is a documentry about a 13-year old Jewish boy, Lior, preparing for his Bar Mitzvah. Down syndrome is very much at the centre of this film as it examines what Lior understands about spiritual matters and also looks at his love and talent for davening (praying). the film covers all aspects of Lior's life--schooling (at an Orthodox Jewish day school), family relationships, especially sibling, and his views on life and his future. I would say this film is probably a must-see for everyone in the Jewish community but also interesting to anyone for its depiction of the life of a teenage boy with Down syndrome. See also http://www.prayingwithlior.com/ Site includes reviews and a study guide.



The other arrival, Victoria Goes to Brazil (by Maria de Fatima Campos, Frances Lincoln Children's Books, UK, 2009) is a picture book that tells another story of Victoria, a young girl with Down syndrome (seen in an earlier book, Victoria's Day - about her life at pre-school). She travels to Brazil to visit her mother's birthplace and family. Down syndrome is never mentioned except as a small note at the back of the book. It is a beautiful book about Brazil and meeting family. It would be great in school or public libraries (as well as for children with Down syndrome) as it portrays a person with Down syndrome doing just what any other child would do. Victoria's mother (the author) is a photographer and has a website that includes more about Victoria as well as a story, Victoria and Me, done for the Down's Syndrome Association in the UK about Victoria's first three years and about Down syndrome.

Despite the different focuses, both resources ultimately show people with Down syndrome doing the same things as other people and leading fulfilling lives.


If you want to borrow these or any other resources, email us.
(Note: Our copy of Praying for Lior is copyrighted for home use only--not for public showings.)

New Australian publication: Down Syndrome and Alzheimer's Disease

Alzheimer’s Australia, and the Down Syndrome Australia Network have collaborated to publish guidelines on Down syndrome and Alzheimer’s disease, prepared by Down Syndrome Victoria and the Centre for Developmental Disability Health at Monash University.

The guidelines are illustrated with photographs taken by Mathew Wiggins, from Byron Bay.

The guidelines are being distributed by Alzheimer’s Australia and by Down syndrome organisations in each State, including Down Syndrome NSW.

In NSW, phone 9683 4333, or email

info@dsansw.org.au with your postal address, if you would like a copy. Multiple copies can be supplied to agency providing direct care to people with Down syndrome and dementia.

Life, art, serendipity ....

Here are a new book and a new film, both with links to people with Down syndrome and their families, both planned and serendipitous:

Emotions illustrated vividly in children's book, by Beverly Beckham reviews in The Boston Globe, My Sister, Alicia May, by Nancy Tupper Ling, illustrated by Shennen Bersani, to be published by Pleasant Street Press next month.

Edit 21/04/2009: Click here to read Shennen Bersani's blog about the day Alicia May met Shennan's sister, Holly.

Penélope Cruz is sure to be watched closely by Daniel Day-Lewis, by Richard Eden in the UK newspaper, The Telegraph, briefly previews the Pedro Almodóvar film, Broken Embraces - said by most reviewers to have a labyrinthine plot, with some reference to the late Arthur Miller's relationship with his son, Daniel, who has Down syndrome. It doesn't appear to be a major plot-line from the online reviews. The movie is due for release in Australia in December.

World DS Day in Indonesia

These lovely photos were sent by a former Sydney resident who now lives in Indonesia, and is an active member of POTADS, the Down Syndrome Association in Jakata.

Celebrations marking World Down Syndrome Day in Indonesia were hosted by POTADS. Its success was due to voluntary work from some well-known Indonesian celebrities as well as generous donations from parents of Indonesian children with Down syndrome in Jakarta AND Sydney!

Over 350 guests including more than 100 children and adults with Down syndrome attended the function, most of whom performed: singing, traditional-dancing, playing GAMELAN, drum, and keyboard!

Parents were glowing with pride while the audience cheering them enthusiastically.

Seven private TV stations broadcast the event, which was also covered by the English newspaper, The Jakarta Post.

POTADS acknowledges and greatly appreciates the effort of everyone involved to help make this event a big success!

Because of the demand for public services and resources outside of Jakarta for children with Down syndrome, POTADS are expanding into Bali this year and hope that will be followed by expansion throughout Java.

POTADS website: www.potads.com

IDEAS online Travel Directory

IDEAS, a NSW disability information service, has launched its online travel directory allowing users to search an online database for information on accessible accommodation and other related travel services.

The directory is very easy to use, and includes information on, for example, camps for people with disabilities, accommodation and specialist travel operators. Each entry includes some details and forward links to the service/facility being described.

A very welcome addition to disability information in NSW - we look forward to its future development too.

NSW Mothers and Babies 2006: new report of birth incidence of babies with Down syndrome

NSW Mothers and Babies reports combine the annual reports of the NSW Midwives Data Collection and the NSW Birth Defects Register

A new volume has recently been published:

Mothers and Babies 2006 (New South Wales Public Health Bulletin Supplement Volume 20 Number S-1, March 2009 )

Chapter 11 is the Births Defects report for 2006. The page numbers below refer to the .pdf document page number (print document page number):

Figure 16, p148 (146): DOWN SYNDROME: CASES BY YEAR AND PREGNANCY OUTCOME, NSW 2000–2006

Table 146, p.141 (140): BIRTH DEFECTS AMONG STILLBIRTHS AND LIVE BIRTHS BY DIAGNOSTIC CATEGORY, NSW 2000 –2006

Table 151, p 145 (143): BIRTH DEFECTS AMONG SPONTANEOUS ABORTIONS, TERMINATIONS OF PREGNANCY AND UNKNOWN OUTCOME OF PREGNANCY BY DIAGNOSTIC CATEGORY, NSW 2000–2006

Table 152, p. 146 (144): SELECTED BIRTH DEFECT CASES BY YEAR, NSW 2000–2006

Cumulative figures on births of babies with Down syndrome date back to 1990, accesible via this link: NSW birth statistics from 1990 - 2005

And no, we don't like the title "Birth Defects" either.

An Update on Down Syndrome: a DS NSW seminar

"An Update on Down Syndrome" is a professional development seminar for adult disability services workers.

Health and communication are two of the major issues impacting on the quality of life that people with Down syndrome can enjoy. Behaviour labelled as "challenging" is often a reflection of health and communication impairments - requiring health and communication solutions.

This seminar will be relevant to professionals working to support people with Down syndrome in residential, respite, recreation, and employment services, and to anyone who works closely with people with Down syndrome, wishing to update their knowledge. It is scheduled for 2 venues in May 2009:

10.00 am - 3.00 pm
Friday 8th May, 2009

Quality Hotel Apollo International
290 Pacific Highway, Charlestown

• Click here for a flier and registration form (Charlestown)

and

10.00 am - 3.00 pm
Friday 15th May, 2009

Wollongong Golf Club,

Cnr Corrimal and Bank Streets, Wollongong

• Click here for flier and registration form (Wollongong)

For both events:

Cost per person: $132 - non-members; $99 – DS NSW members

Enquiries to Siena O’Brien at carereducation@dsansw.org.au or phone 9683 4333

For other DS NSW information events scheduled for May and June 2009, click here.

Library Thursdays: Windows into heaven: Stories celebrating Down syndrome

Windows into heaven: Stories celebrating Down syndrome by Stacy and Michelle Tetschner is another collection of stories by parents of people with Down syndrome. It is a small book and each story is fairly short, making it an easy book to just flick through and read bits. The authors include both mothers and fathers. The people they write about are all ages. The stories include ones by Jennifer Graf Groneberg and Tom Lambke, one about Johnny the Bagger, and one written by the mother of the boy with Down syndrome who impressed the judges on So You Think You Can Dance (see Patricia E. Bauer's blog entry). The writing varies from story to story. Some have religious or mystical overtones, but most do not. They are all positive stories and as with all books of this kind, some stories will inspire some families and those same stories may worry others but it is an easy read and if you have already heard about some of the people featured in the book, it gives interesting additional information.

Materials in our library related to stories in this book:

Roadmap to Holland by Jennifer Graf Groneberg

Johnny the Bagger DVD

I Just Am by Bryan and Tom Lambke

If you'd like to borrow Windows into Heaven or any of the other books, please email us.

Special Olympics Inner West: Come and Try Dance

Warm Ups! Disco!
Ballet! Jazz!
Line Dancing! and more ....

When: Friday, April 24th

Where: Concord Community Centre

1A Gipps Street (Cnr of Gipps & Burwood Rd)
Concord NSW 2137

Off street Parking Available

Time: Arrive from 10am for a 10.30am start - session to finish at 12.30pm

Parents/ Carers must remain on site during the session & encouraged to join in too!!!

Costs: Gold Coin Donation

RSVP: Please contact ASAP to book in for the day (at the latest by Friday 17th April 2009)
It is essential to book in to join in!!!

Contact: Kathleen Collins– Inner West Sports Coordinator
Email: kath2012@tpg.com.au (preferred contact)
Phone: 0405 100 753

Preparing for School: DS NSW parent event, 2nd May 2009

A workshop for those who have a child with Down syndrome entering school in 2010 or 2011

1.30 - 4.30 pm
Saturday 2nd May 2009
Social Enterprise Centre

Auburn

Speakers: Judy Davidson, Lynn Bailey (Parent Support, Down Syndrome NSW) and parent panel

There is no charge for this event

• Click here to download a flier (Preparing for School 2009)

Register for this workshop by contacting Judy or Lynn at the DS NSW office before Friday 24th April.

Ph 9683 4333; Fax 9683 4020; email support@dsansw.org.au

RIDBC: Auslan Tutor for iPhone and iPod

The Royal Institute for Deaf and Blind Children is always at the leading edge of using technology, and has recently introduced another innovative resource. Developed with the interests of deaf children as its priority, it will also be useful for families and professionals working with children and adults for whom sign is a significant support for communication because of intellectual disability. From the RIDBC website:

RIDBC Auslan Tutor is a portable video-based Australian Sign Language (Auslan) teaching resource developed specifically for the iPhone and iPod touch.

It is designed for families of young deaf children to assist them to learn Auslan and promote early communication between parent and child. Over 500 signs are included. These signs were carefully chosen as those most needed by families in their interactions with, and teaching of, their young deaf children.

Each sign has five corresponding entries which can be viewed on demand as often as necessary. The five entries are:

• a photo of the handshape used to form the sign
• a video clip demonstrating the single sign
• a video clip of the sign used in a phrase
• a video clip of the phrase used in a sentence
• a text note about Auslan grammar that is pertinent to the sign, phrase, or sentence. These notes have been included to help the user gain a basic understanding of the grammatical structure of Auslan.

Click here for all the information from RIDBC

Direct Funding - dscussion paper from NSW Liberals/Nationals

An interesting initiative from the NSW Opposition, on Direct Funding for people with disabilities - more detail is available from communityNet and the discussion paper, Personalising Service Delivery, a Discussion Paper by the NSW Liberals/Nationals, can be downloaded from here.

Opposition pledges new deal for disabled
Brian Robins, Sydney Morning Herald, April 6, 2009

The NSW Opposition is proposing to overhaul the delivery of disability services, which may emerge as a template for its approach to social services in the state if it gains power in 2011.

It said its policy was to give disabled people money and the ability to choose the services they needed, rather than having this organised for them by government-provided caseworkers.

This approach has already been adopted in other states, such as Victoria and Queensland, but with only small pilot programs under way in NSW.

"The emphasis on quality of life outcomes for people with disability is central to the development of our plan," the Opposition spokesman on Disability Services, Andrew Constance, said. The Opposition released a discussion paper outlining its proposal as it seeks to win broader backing for the plan.

"It's going to require quite a rejig of the existing process," said Catherine Hogan, the director of Family Advocacy, a disability support group.

"At present, control resides with the Government. But until this is turned around, giving people with disability and their families the ability to choose what they need and where to get it, then people with disabilities will remain vulnerable.
"We have too many people abandoned by the system."

Mr Constance said: "We have to increasingly look at giving back choice and control. It needs to be done very carefully and cautiously, but we need to put a stake in the ground on this."

He said much discussion within the social services sector had focused on individualised funding packages.

HARD DAZE: Powerhouse Youth Theatre

HARD DAZE is a new major production by Powerhouse Youth Theatre's Mixed Abilities Ensemble.

Over a year PYT have been working with young people with and without a disability to develop HARD DAZE. PYT and Accessible Arts partnered to form the Mixed Abilities Ensemble in June 2008 where they took part in a 15 week training program consisting of voice, theatre making & movement workshops alongside professional artists. They then moved into the creative development stage of HARD DAZE with a showing of work in October 2008 & now are ready to reveal to all the major production.

The show is devised by the ensemble with director, Craig Anderson and set in a factory space in Clyde.

When: Opens 23 April 2009, 7.30pm / 24 April: 11am and 7.30pm / 25 April: 2pm and 7.30pm.

Where: 2 Factory St, Clyde NSW

Cost: Tickets are $10/15, with carers receiving free entry. Bookings through www.moshtix.com.au

For more info on the show check out www.aarts.net.au/westernsydney/