This Week in Autism Community

S U N D A Y

5 J U N E

2 0 1 1

I S S U E 9

Steve Drakoulis

Coordinator

Autism Community Network

autismcommunity@yahoo.com

www.autismcommunity@yahoo.com.au

0431 724 229

The week has gone by in a bit of a blur.

I popped in to Aspect to offer them some insight into our network, while Learning Links and Kogarah Diagnostic have now added us to their information

list for parents; And there’s been a few support group meetings in there as well.

I want to thank Liz from Peakhurst Heights who has offered to help me with some of the projects I am

undertaking for our network. The first one is putting together a Help Sheet for parents to use

when they first receive the diagnosis.

- Steve

Thursday 9 June BALGOWLAH

Friday 10 June KOGARAH

Saturday 11 June KOGARAH

Friday 17 June PEAKHURST

Sunday 19 June TERREY HILLS

No need to advise me if you are not coming

Sometimes the simplest words can be really uplift-ing. I hear too many bad news stories about our

kids in the school system, but I think every one of us would feel great hearing something nice about an-

other ASD child.

During the week, I received an email from Lynda, which included the following passage:

Life with and for Jack is good. We changed schools and his words "I fit in" say it all I

think :).

There will always be adjustments but as he grows and gains self confidence he seems so

much happier in himself and in the world.

I received some potentially very helpful information during the week, regarding children who would be transitioning to High School next year. I immediately got onto my database and sent it out to all the fami-lies whom I knew had children who might be high school bound next year. But there were quite a few gaps in my information, as many of you have not provided me with the type of information I ask via the registration sheet that allows me to know how to best help people. And that includes the age of your child. Unfortunately to access this extra service for next year’s orientation required families to apply by last Friday. With so many families now on our mailing list, I limit the ‘mass mail outs’ as much as possible, because Yahoo starts to treat me like a spammer and locks me out from using my email for many hours afterwards– which stops me from getting my work done so I have to think before I do that. I don’t put pressure on anyone to give me any more information than what they would like to, but obvi-ously the more I know the better I can help. Thanks to everyone who has returned a registration sheet to me, if you want to send me yours please do.

THIS WEEK IN

autismcommunity.com.au

As I receive new information I post it onto my website so that parents in our support network (and in the wider community) may benefit from it. Some of the entries below refer to updates while others may be completely new pages I create as result of valuable info supplied by others or ideas brought forward by parents in our network.

SERVICES / SCHOOLS / PRESCHOOLS

UPDATED

SERVICES / PLAYGROUPS

More information

SERVICES / DIETICIANS

Updated

SERVICES / INFORMATION PACKS

Updated

PARENTS FORUM / Q & A WITH MATT

More of your questions answered

STEVE’S BLOG

Updated

I thought it might be interesting to show you what parents are looking at on our website. I expected last week’s showings to remain indicative of what’s most pop-ular, but from what I see this week, it’s

not the case. Below are the top 10 pages being visited

at the moment.

1.AUTISM AWARENESS CARD

2.SUPPORT GROUPS

3.PARENRS FORUM

4.USEFUL LINKS

5.STEVE’S BLOG

6.PSYCHIATRISTS

7.USEFUL IDEAS

8.SPEECH THERAPY

9.PUPERTY & SEXUALITY

10.FEEDBACK ON ABA

I was sent this article which appeared in the Tele-

graph this week. I don’t know what to think but

it’s interesting reading.—Steve

A BLOWOUT in the number of autistic students attending NSW public schools has been triggered by doctors misdiagnosing children to secure extra fund-ing. Department of Education figures obtained by The Sun-day Telegraph show that one in 74 students at state schools is autistic despite the accepted Australian prevalence being one in 160. The state government spends more than $1.1 billion each year on students with disabilities. Doctors say the only way to secure extra funding for children who are borderline cases or who have learn-ing difficulties is to stretch the diagnosis. ``Schools need labels and kids don't get funding until they have a label,'' said Dr Scott Dunlop from Sydney Paediatrics. ``You try to stretch things up a bit to get them into a label. Anecdotally it goes on a lot because there has been a sudden increase in autism, it is almost encour-aged to prescribe the borderline cases.'' Autism affects a child's development and ranges from severe to milder cases of Asperger's syndrome. Cases

have skyrocketed 280 per cent in the past decade. ``My impression is the diagnostic label is used to get funding, particularly for borderline kids,'' Dr Dunlop said. Dr Chris Ingall from northern NSW said parents come into his Lismore paediatric clinic twice a week with a letter from a school or preschool requesting a child be assessed for autism. ``If you have a diagnosis for ASD *autism spectrum disor-der+, the school can apply for funding to help the child learn. ``If it falls outside the guidelines yet we know the child is not going to get supported and the only thing they can do to get funding is to get a diagnosis, do you let him sink or get him help?'' Macquarie University research fellow Dr Linda Graham analysed figures and found NSW boys disturbingly over-represented as autistic -- nine boys to one girl, yet the accepted international rate is four boys to one girl. Dr Graham believes ``ASD is the new ADHD'' and children are being diagnosed with things they do not have. Research conducted in 2005 found 58 per cent of doc-tors admitted they had ticked the box for autism when they were unsure about the diagnosis. They also admitted to exaggerating children's symptoms to obtain a diagnosis. Rosemary Cowen's son was diagnosed with sensory pro-cessing problems when he was in year one. ``The teacher said we don't get funding for that,'' Ms Cowen said. ``The teacher just came out and said to me: `He's autistic', and it was so unprofessional. The whole thing was about funding.''

PUSH TO LABEL KIDS

AUTISTIC

There’s been an instance this week where a couple of ’new’ parents were invited along to a support group by a parent in our network. Absolutely nothing wrong with that, but it got me thinking that to date, every parent who has attended a group has made contact with me first. There’s a few reasons why I favour that. First and foremost, I need to make sure that a parent is dealing with an ASD. I have had the situation previously where someone came along to a meeting but their child was not on the spectrum. They had other complicated issues, which I and the other ASD parents were not ‘qualified’ to deal with. I also had an instance where a grateful parent wanted to pay me for meeting with them. A lovely gesture but I had to explain how the network operates. I am also able to explain the network to them so that they understand from the start how it operates and I can get their contact details and any relevant information. I spend a lot of time processing information given to me to help me decide how to do things better. The Shared Interests groups that have proven so popular is one good example. If I know you have a daughter for example, if you want to meet other parents with daughters I can link you with them. And of course, if I am going to let you know of what’s happening, I need to have some contact details. I certainly have no problem with any parent who needs support coming along to our groups and have never turned down any parent with a child on the spectrum. But I have a view on how I make the network serve our community best and I think that I need to have all new parents contact me either before attending a meeting or at most soon after that first one if they want to access our support. Steve

WEDNESDAY 8 JUNE WORKSHOP: CHILDREN WITH ANXIETY

OR DEPRESSION Learning Links Peakhurst

WEDNESDAY 8 JUNE CARERS DEPRESSION GROUP

Pole Depot Penshurst

1st Wednesday of every month

WEDNESDAY 8 JUNE GET LOST MR SCARY

Early Intervention program for anxious children Learning Links Peakhurst

EVENTS FOR FULL DETAILS OF THESE EVENTS PLEASE SEE RELEVANT MONTHS UNDER EVENTS ON WEBSITE

eg. SERVICES / EVENTS / MAY

WEDNESDAY 8 JUNE Understanding Autism Spectrum Disorders –

with DR TONY ATTWOOD

Campbelltown Catholic Club

WEDNESDAY 15 JUNE PARENTS’ & GRANDPARENTS’ EVENING

CLUB BURWOOD

WEDNESDAY 29 JUNE PAMPERING & INFORMATION DAY

ST.GEORGE LEAGUES CLUB

SATURDAY 25 JUNE Music4Health Concert

Sydney Symphony Orchestra

AUTISM ADVISORY AND SUPPORT SERVICE

MONDAY 6 JUNE “Anxiety in Children”

The Multi Purpose Centre for the Disabled

123 Flora Street, Sutherland

28, 29 30 JUNE & 1 JULY LET’S GET STARTED.

GETTING READY FOR SCHOOL AND LIFE BELROSE, KINGSFORD, MITTAGONG

AND SOUTH HURSTVILLE

THURSDAY 16 JUNE 10 Key Strategies for Success at Home and

School. ONLINE WEBINAR

THURSDAY 23 JUNE 10 Key Strategies for Success at Home and

School. ONLINE WEBINAR

SIBLINGS CAMP

Applications are now open for the Aspect Siblings Camp – a three day retreat for children who have a sibling with a diagnosis of autism spectrum dis-

order.

Date: 4-6 October 2011 (during the school holidays)

Venue: Naamaroo Conference Centre

Lady Game Drive, Chatswood Cost: $100 per participant

See Events page on pour website

for October for more details

“Anxiety in Children” Monday 6th June 2011 7.30pm – 9.00pm

Our Presenter is Dr George Williams, Paediatrician

Dr Williams will be speaking on anxiety in children. He will talk about ways of identifying anxiety in

children and things we can do to help.

Venue: The Multi Purpose Centre for the Disa-

bled

123 Flora Street, Sutherland

For further information contact SSLDSG Inc. on

9545 1505 or email ssldsg@idx.com.au A gold coin door donation will assist us with our

ongoing support and advocacy

This arrived from a couple of different sources during the week, it sounds like it might be a

useful thing for many parents out there.

Invitation to my FREE 45 minute Online Seminar

I would like to invite you to my first FREE

online/telephone course in 2 weeks.

Thursday June 16th at 8pm

The topic is : 10 Key Strategies for Success

at Home and School. 45 minutes of great ideas, tools and strategies

in the comfort of your own home!

All you need is access to a phone or internet and you can listen in, then afterwards I will be on Facebook to answer questions and discuss

ideas.

I would love for you to join me for this Live Chat:

Click this link: http://www.suelarkey.com/

Sue_Larkey_LiveChat_Seminars.php

I am really looking forward to sharing with you great strategies and ideas!

Best Wishes Sue Larkey

www.suelarkey.com

Music4health concert

Autism Advisory and Support Service proudly invite you to the

Sydney Symphony Orchestra and MBF Music 4 health concert

When: Thursday 23rd June, 2011 Where: Mounties Auditorium Meadows Rd , Mt Pritchard

Time: 10.45am for 11am start

Cost: FREE (A gold coin donation is not compulsory

but appreciated)

RSVP: 10 June 2011 9601 2844 (between 10am and 2pm)

I received this from Marjorie Janz, who does amazing work every month producing the Warringah Disability News newslet-

ter.

The LINCS web-based database of 40,000 organisations in/beyond Sydney can be entered through the websites of all mem-bers of LINCS, or through the main address www.lincs.com.au then select the Council or disability service. You can change the centre of search by clicking on the line below the search field. LINCS searches concentrically (from close to distant) by keyword. Then you can search for ‘Hindi’ or ‘Indian’ for your family with the 25 year old son. (They should also be eligible for Older Parent Carer assistance, which helps parents plan for the/their future. The LINCS database on my homepage www.warringah.nsw.gov.au/services/disability.aspx lists all ser-vices for residents of the Northern Sydney region, plus other re-gional, state, national ones. The homepage also contains the ar-chived issues (in pdf format) of the disability newsletters, and other

information.

I am a parent on the board of a group of professionals who are currently working towards the development of Australia's first DIR / Floortime based primary school for children diag-nosed with autism, named Keystone School. The school aims to prepare children with sensory needs and allow them to perform at their best emotionally, behaviour-ally, academically and vocationally. To raise much needed funds and awareness we are putting on a family fun day on Sunday the 19th June 9.30am till 2pm rain or shine. BBQ lunch, jumping castles, face paintings, mini farm, tennis and special guest Gen Jereb. It will be held at the tennis centre in Sydney Olympic Park.

Adults $50, $15 per child or a family pass $100. Free park-ing, raffles and lucky door prize. visit the website details www.keystoneschool.org.au or contact Georgina at KidsWorld Paediatric Therapy on 9418 9995 - Donna Bird

Recently, Catrina sent me some very useful infor-mation about this program. It is worth looking into along with putting your child’s name on the Aspect schools list.

Early Intevention Preschool Program

The support class (early intervention) caters for pre-school children from 3 years to 6 years, or school en-try age with significant disabilities in the areas of Cog-nitive, Fine Motor / Gross Motor, Language, Social / Self Help and Autism

From Catrina: The Annandale program covers chil-dren from the Sydney region covering the Habour Bridge area, Drummoyne, Strathfield, all of the East-ern Suburbs to part of St George. The Loftus Unit covers part of the St George area and all of the Sutherland Shire. However there is only 1 class at Loftus whereas there are 2 at Annandale. It is also noted that the St George region is actually divided in three - St George residents are eligible for either the Annandale, Loftus or Punchbowl unit de-pending on where they live. See their webste for further details. http://www.annandale-p.schools.nsw.edu.au/Pages/EarlyIntervention%20Unit/Intervention.htm

I’ve been saying to everyone at our support groups that it’s worth asking at a cinema if there are special arrangements for Carers when you take your ASD child to a movie. Hoyts understand that Autism is a lifelong condi-tion and will only charge the carer $1.00 if you show them your Carers NSW membership. (everyone should be a member of Carers NSW, it’s free to join). So one of our mums contacted Village to ask them. Unfortunately, unless you can get a Com-panion Card (Fat Chance) they don’t consider our children disabled enough to warrant the need for a Carer to escort them. It’s disappointing, espe-cially when there’s so many parents that could use that kind of consideration. The parent wrote: Hoyts cinemas offers carers $1 tickets when attend-ing a movie with the person they are caring for. Do Village have anything like this? Note: It is extremely difficult to get a companion card as it has to be life-long and extremely severe in order to be eligible. Village replied: Thank you for your email. With regard to your query, all Village Cinemas offer carers a complementary ticket upon presen-tation of a companion card. Unfortunately you do need to present a companion card to be issued with a carer complementary ticket. I’m sorry that we are unable to assist with your request. Kind regards |Village Cinemas Customer Service Village Cinemas - Australia | 1 / 500 Chapel Street, South Yarra, VIC 3141 t 1300 555 400 | f +61 3 9824 2481 | e contac-tus@village-cinemas.com,

FINALLY … IT’S HERE I heard about this a month ago but have been looking for confirmation following the last budget.

MORE FUNDING TO SUPPORT STUDENTS WITH DISABILITIES

The Australian Government has announced new funding of $200 million to provide extra support to students with a disability in schools. Government, Catholic and Independent schools will all be eligi-ble to receive the funding, which will be available

from the beginning of the next school year. The More Support for Students with Disabilities initiative will provide services, such as speech

and occupational therapy, delivered in schools by health and welfare professionals. It will also pro-vide access to special equipment in classrooms

and additional hours of in-class support from staff, including teacher’s aides and health and allied health professionals. Finally, the initiative will provide adapted curriculum developed to meet the needs of students with a disability.

What this also means is that for those families who know that their child needs therapy but are struggling to survive let alone afford an OT or Speechie, the school can also support the child through this fund-ing.

This week, Matt has answered these questions from you:

Does it get easier for you as you get older?

Did you get many knockbacks when you were first looking for work?

How did you handle public toilets growing up?

How did your relatives treat you growing up?

See his page in Parents Forum this week for answers to these questions.

If you are looking at end of financial year tax time donations, I want to recommend to you Georges River Life Care. Based in Peakhurst, this communi-ty organization runs 4 separate autism support groups as well as a social skills group for kids with autism. There are waiting lists to join these groups and extra funds would allow them to offer more to the autism families out there. Separate to that they have programs to support young girls with their self esteem, counseling and other worthwhile programs to aid people in the St.George area. I run a support group out of GRLC and they have over the last year been a great support to me through their generous permission to use all their facilities - from a room to equipment to the venue for our recent Autism Perspectives event. As I am not registered as a non profit organization myself I can’t ask for donations to the Autism Com-munity network (I say this because someone has asked) but I am now taking on a bigger role with GRLC and will be working part time for them. By do-nating to GRLC it will allow them to put on more pro-grams and groups to support our families out there. If you wish to donate, please contact Glenn Power at Georges River Life Care on 9153 6300 or email glenn@grlc.org.au

Multicultural Community Advisory

Service

Phone: 02 8877 5314 Fax: 02 8877 5320

The Lodge, Macquarie Hospital , cnr Twin and Badajoz Rds, North Ryde NSW 2113

Email: vsingh@nsccahs.health.nsw.gov.au

The Service provides basic information and referral to services; comprehensive/ holistic assessment; counseling, support, information and advocacy; group programs; outreach to help residents from non-English speaking backgrounds to understand and manage ageing or disability and/or caring, to use services and resources to maintain their health and wellbeing, and stay active and independent in their home and community. The project comprises an experienced social worker, volunteers from various language groups and professional health interpreters to assist people with disability, older people and their carers from various cultural backgrounds in the Low-er North Shore and the Northern Beaches . Hours: Mon-Fri 9.30am-4.30pm Contact: Vinita Singh, project officer Fees: none Eligibility: people with disability, older people, their carers

Referral: Phone or email the office Languages spoken: Japanese, Cantonese; Hindi Area Served: Lane Cove, Mosman, North Sydney, Willoughby , Manly, Pittwater, Warringah

Parent Organisation: Northern Sydney Local Health Service

I have created a fan page on Facebook for Autism Community. Please help me get it noticed by adding it to your likes list. Just

type autism community in the search sec-tion and you’ll find it.

Thank you to everyone who has so far add-ed my Facebook page to yours. I’m already seeing the power of the internet as well as

the growing strength of our network.

Upcoming Support Groups

KOGARAH

MEETS EVERY SECOND FRIDAY

NEXT MEETING: Friday 10 June10.00—noon

St.George Leagues Club

Princes’ Hwy Kogarah

In the café / restaurant

KOGARAH

MEETS EVERY SECOND SATURDAY

NEXT MEETING: Saturday 11 June 10.00—noon

St.George Leagues Club

Princes’ Hwy Kogarah

In the café / restaurant

BALGOWLAH

MEETS EVERY SECOND THURSDAY

NEXT MEETING: Thursday 9 June 7.30—9.30 pm

Club Totem

195 Condamine Street Balgowlah

upstairs, through the restaurant to the function room behind

the bar

TERREY HILLS

MEETS EVERY SECOND SUNDAY

NEXT MEETING: Sunday 19 June 2.00—4.00 pm

Piemonte Cafe

287 Mona Vale Rd Terrey Hills

in the back near the children's play area.

Located at Hills Flower Market, near Bonds Nursery

PENSHURST

WILL MEET EVERY SECOND MONDAY

NEXT MEETING: Monday 27 June 10.00 am— noon

The Pole Depot

23 St.Georges Rd Penshurst

Please contact Amal to register

9580 0688

*13 June is a Public Holiday

PEAKHURST

MEETS EVERY SECOND FRIDAY

NEXT MEETING: Friday 17 June 10.00 am— noon

Georges River Life Care

23 Stanley St Peakhurst

If not already in this group must email Tonya

tago101@yahoo.com to register

GRLC has a waiting list for a number

of ASD support groups running. Tel 9580 0688

.

BANKSTOWN

MEETS FIRST THURSDAY OF THE MONTH

NEXT MEETING: Thursday 7 July 10.00 am noon

Bankstown Sports Club

8 Greenfield Parade Bankstown

In the café

BELMORE

MEETS FIRST SUNDAY OF THE MONTH

Sunday 3 July 2.00 –4.00 pm

Canterbury Leagues Club

26 Bridge Rd Belmore

In the bistro just inside front entry

.

LUGARNO

MEETS LAST SATURDAY OF THE MONTH

NEXT SOCIAL: Saturday 25 June 10—noon

All welcome—a chance for our kids to have a relaxed

play together.

Club Grandviews - 821 Forest Rd Peakhurst

Thursday 9 June BALGOWLAH

Friday 10 June KOGARAH

Saturday 11 June KOGARAH

Friday 17 June PEAKHURST

Sunday 19 June TERREY HILLS

Saturday 25 June LUGARNO—BOWLS

Monday 27 June PENSHURST

Saturday 2 July DEE WHY—BOWLING

Sunday 3 July BELMORE

Thursday 7 July BANKSTOWN

9

NEXT MEETING: SATURDAY 2nd July

from11.00 a.m.

SOCIAL DAY FOR

KIDS ON THE SPECTRUM

Bowling at Dee Why RSL

Meet at the club for a game and then stay for lunch,

at the bowling alley or at the RSL,

giving our kids the chance to socialize together.

Booking will be for 11 am under ―Steve’s autism

support group‖. I will advise them of numbers.

Please email me by the Friday morning before so

that I can book ahead.

I recommend you get a membership card at the

AMF when you are there, (it’s free)

as you get discounts on games and food with it.

All Autism Community families welcome, just RSVP

to me first.

A little while back we established a num-ber of groups based on similar situations families find themselves in. If you are interested in being added to any of the-se groups, just send me an email.

We have already had a number of social interactions between parents in some of these groups, and they are a very good way to connect with others who under-stand you.

TEENAGERS TEENAGE DAUGHTERS UNDER 7s MORE THAN ONE CHILD ANXIETY ADHD PRIMARY SCHOOL AGED (6-12) ADULTS DADS

NEW GROUP—NON VERBAL KIDS NEW GROUP—YU-GI-OH KIDS

SHARED INTERESTS GROUPS

Following the success of our Bowl-ing Day in Dee Why, I’ve been trying to think of a social activity we can provide for our kids in another location.

I’m looking into Putt Putt, also known as mini golf, as a fun option for both the kids and the parents.

The Sydney Olympic Park Mini Golf place is central enough for many peo-ple and looks like an affordable option for us.

It costs just $6 per person to play 18 holes, with most games lasting around 45 minutes. If there is enough interest I am sure I could negotiate an even bet-ter price.

So please let me know if this is some-thing you might be interested in and I can get it started for us.

POSITIVE PARTNERSHIPS

NOW ONLINE

The PP program under its current structure will be ending at the end of this year. In fact, the St.George workshop just held was the last one for the Sydney metro area. We are optimistic that there will be funding for the program to continue in some format next year, but we don’t yet know what. On the bright side, the program can now be undertaken online. I won’t pretend that it’s as good as being in a room with other parents sharing ideas, but the content of the program is all there. And there might be a few familiar faces among the parents in the interviews section.