This Week in Autism Community SUNDAY 24 APRIL 2011 ISSUE 3 Steve Drakoulis Coordinator Autism Community Network [email protected][email protected]0431 724 229 A little while ago I was asked to do a talk at the Vern Barnett school. I’ll be presenting to the staff at this wonderful Aspect school on a parent’s per- spective traversing the autism world. Needless to say, there’s a bit of preparation involved. So a lot of my energy this week has been towards putting together an appro- priate presentation. I took a break from that on Monday when we got together at Dee Why for a bowling day—that was the Teenagers on the Spectrum group. It was a nice way to spend a few hours and most encouraging was seeing the kids hanging out together, having a bit of fun, and also the parents being able to have a chat with other kids with similar interests and ages to theirs. I received on Thursday an announcement from the Lions Clubs of Australia that pleased me greatly. I mentioned a few months ago that I had contacted the Chairman of the Lions after I read that he was taking to their annual general meeting a proposal to adopt Early Intervention for autism support as the club’s cause for the coming year - to lobby govern- ment for increased services and funding. I have pasted inside the letter from Mr Flynn re the very pleasing result. Over the last 18 months, my work and my life have changed significantly. The service I try to provide to the autism community takes up an average of 10 hours a day most days of the week. I love it and wouldn’t want to change anything about it. How- ever, the pesky need for me to provide food for my family means I need to find a way to sustain what I do while earning an income. I am exploring options which will mainly involve applying for government grants or support. I’ve written more about it in this issue as I figured I may as well call on the thoughts and experiences of the families in our network on how I may best achieve some of my objectives. A few people have offered to support me in small ways and I may be able to now take up those offers. More inside. I hope you are all enjoying a peaceful and loving Easter period with those you love. Steve
the Teenagers on the Spectrum group. It was a nice
way to spend a few hours and most encouraging
was seeing the kids hanging out together, having a
bit of fun, and also the parents being able to have a
chat with other kids with similar interests and ages
to theirs.
I received on Thursday an announcement from the
Lions Clubs of Australia that pleased me greatly. I
mentioned a few months ago that I had contacted
the Chairman of the Lions after I read that he was
taking to their annual general meeting a proposal to
adopt Early Intervention for autism support as the
club’s cause for the coming year - to lobby govern-
ment for increased services and funding. I have
pasted inside the letter from Mr Flynn re the very
pleasing result.
Over the last 18 months, my work and my life have
changed significantly. The service I try to provide to
the autism community takes up an average of 10
hours a day most days of the week. I love it and
wouldn’t want to change anything about it. How-
ever, the pesky need for me to provide food for my
family means I need to find a way to sustain what I
do while earning an income. I am exploring options
which will mainly involve applying for government
grants or support. I’ve written more about it in this
issue as I figured I may as well call on the thoughts
and experiences of the families in our network on
how I may best achieve some of my objectives. A
few people have offered to support me in small
ways and I may be able to now take up those offers.
More inside.
I hope you are all enjoying a peaceful and loving
Easter period with those you love.
Steve
THIS WEEK IN autismcommunity.com.au
SERVICES / EVENTS / MAY /
Inclusive Education in High School—Talk
SERVICES / MEDIA
ASPECT’s autism TV ad
Kaspar the friendly robot helps autistic kids
STEVE’S BLOG
More updates
SERVICES / SPORT & REC / DANCE SCHOOL
Autism specific service in inner west
SERVICES / SPORT & REC / MARTIAL ARTS
Autism specific service in inner west
A new entry for Tae Kwon Do in the Hills district
HOME / OUR COMMUNITY IN PICTURES
Our Bowling Day in Dee Why
APPS
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.
EASY KID TOKENS I came across this free simple app re-cently. You select the reward your child wants to work towards, and then move a token across the screen each time they earn accredit for the behavior. When you have placed all token on there, a ta-daaa trumpet brings up the reward they’ve earned. It comes from a site called www.GoodBevaviorTools.com . Another app from that site is the Easy Kid Timer which costs $1 to buy. Lots more links to sites for recom-
mended apps on the APPS page of my website.
Useful Product THE KIDDIE FOOD KUTTER These are good for teaching kids with poor fine motor skills how to use a knife. While these little knives will cut through every food we've tried, including steaks and carrots, you can run them across your hand and they will not cut you. Great for kids.
Good Ideas At a recent workshop, a very creative mum mentioned that she was knitting a scarf for her son, and to accommodate his needs for sensory stimulations, she was then sewing a different type of tex-ture on each end and each side. Something silky, something rough, something crinkly, etc. You could buy a scarf if knitting isn't your thing and sew the 'patches' suitable for your child onto it.
Useful Product
One of the problems many of us face with shoes for our kids is when they
outgrow the smaller sizes where you can buy Velcro shoes. With thanks to
Clara, I have been told that you can purchase Velcro shoes right up to adult
sizes from Modern Shoes Warehouse, located at 267 Princes Hwy, directly
opposite St.George Leagues Club. It’s a big red building.
Incontinence can be an issue for some of our kids, whatever their age. Be it that they are not yet fully toi-let trained or that they have issued which cause them to experience difficult situations with toileting. I was contacted this week by a person from one of the big companies that produce continence products, nappies and other things that support children and adults with such issues. She wanted to attend our sup-port groups to do a presentation, but I am not interested in turning our time into an opportunity for a com-pany to flog their products. However, if there are any of you who would like to access more info about products, support or even fund-ing relating to continence issues, please email me and I will access the information for you. I’d rather sit down with a rep for a short meeting and then pass on the info to you than have them come to our meet-ings. Or I can put you in contact directly with them.
One of the parents in our network asked me this week whether I would consider making available to peo-ple at the support groups raffle tickets she was selling, where money raised is going towards autism sup-port (donated to Aspect). I was happy to agree to it as they are $2 tickets, have an impressive list of prizes and of course it’s autism support. So I’m letting you know that at the next few support groups, I’ll have these raffles there and if you are interested in buying any just let me know then. The first prize is an IPAD2 — 3rd prize is 2 flights to Melbourne — 8th prize is a 32cm TV, so that gives you an idea of some good prizes in there.
Upcoming Support Groups
KOGARAH
MEETS EVERY SECOND FRIDAY
NEXT MEETING: Friday 29 April 10.00—noon
St.George Leagues Club
Princes’ Hwy Kogarah
In the café / restaurant
KOGARAH
MEETS EVERY SECOND SATURDAY
NEXT MEETING: Saturday 30 April 10.00—noon
St.George Leagues Club
Princes’ Hwy Kogarah
In the café / restaurant
BALGOWLAH
MEETS EVERY SECOND THURSDAY
NEXT MEETING: Thursday 28 April 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 8 May 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
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‖. I will advise them of numbers,
Please let them know you are there as part of Steve’s group.
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.
School Holidays Get Togethers
A little while back we established a number of groups based on similar situations families find them-selves in. If you are interested in being added to any of these 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 understand you.
TEENAGERS TEENAGE DAUGHTERS UNDER 7s MORE THAN ONE CHILD ANXIETY ADHD PRIMARY SCHOOL AGED (6-12) ADULTS DADS
From Julie: Hi Steve, I just wanted to say Thank you very much for organising the bowling event. ….Dean thoroughly enjoyed it and is looking forward to it becoming a regularKING event so I do hope we can all continue to keep it going.
SHARED INTERESTS GROUPS
This is my world
As I mentioned on the front page, I have taken a new direction in my life in developing the Autism Commu-nity network. It has grown to 148 families and profes-sionals to date and I have no doubt it will continue to grow further each day. I am starting to reach the point where I need to think like a manager once again and employ strategies to ensure the continuing development of this service. I should say before I go any further that I am not nor will I ever entertain thoughts of trying to charge fami-lies for what I do. But as a comment I once heard from a charity said, “before a charity can be a charity it must first be a business”. I need to think of a way to earn an income so I can sustain this network. My Background: I was an Operations Manager in a number of businesses, a Special Projects Manager, a company Trainer and OHS consultant. Most of these roles ran concurrently depending where I was. But how long can you work helping a multinational com-pany with little interest in people when there’s a much more real world needing help? That was the decision I made so I walked away from the corporate world. Unfortunately, there’s not much money in walking away. My Life: I am a single father of two children who moti-vate me every minute of the day. My son George has High Functioning Autism and is blessed with some of the gifts that autism can sometimes bestow on our children. My focus remains on doing all I can to give him every chance of understanding how to survive in an adult world. My daughter Zara radiates my life and overwhelms me with love. I share a house with their wonderful mother as we try and raise our children together. Sadly, I am part of the disturbing statistics of failed marriages among parents with an ASD child. My work: I have been very lucky to date. Since I started on this path, my profile has increased in areas and I have received some wonderful new opportuni-ties. These include:
I was recently put on as a casual Teacher’s Aide with Aspect schools
I have started to do public speaking engagements, I get paid for some but I don’t knock them back if they don’t pay as raising awareness remains my priority. I have organized a successful seminar with 4 guest speakers that has helped both the guests and the speakers on their respective journeys. I work on my website every day of the week, updat-ing from emails and information I receive from a
wide range of sources. I run 9 support groups to date. I get paid for 3 of those currently. The St. George Positive Partnerships role ends in a couple of months so only one of those groups will pay me after that, although the groups will of course con-tinue.
Aside from all that, I try to be a good dad with time for my kids, while also managing their school’s uniform shop and being on the P&C. Non paid roles. Some weeks it gets hard to pay the rent. It brings you down and I don’t like being down, it slows down my effec-tiveness in what I do. I’ve been speaking with a few people who I think may be able to help me find ways to develop what I do. I have resisted accepting ads on my website, as it is de-signed to be advice between parents, but I may have to look at that in some way down the track. I am going to look into how I can register the Autism Community Net-work (A.C.N) as a non profit org, but I understand there’s a lot of preparation involved with that. Unfortunately, things like this will cut into my time doing what I want to be do-ing, which is responding to your emails and running the groups. I might put a donations feature on the website, I guess if Wikipedia can do it… I created last night a Facebook Fan page for AUTISM COM-MUNITY NETWORK. If you would like to add that to your likes, it would certainly help me to increase the profile of the website and encourage more families to find it. Some of you have offered to help me in some way. At the moment what I can think of that is if one or more volun-teers took up contacting the various services I promote on the website to just let them know that they are there. That may then encourage them to let people they provide ser-vices for know about the website. So if you think you may be up to making some calls or sending some emails on my behalf, that would be one less thing I would need to spend time on. Or if you have the time to assist me with research once in a while, for example, info on a particular service, that would certainly help me with time management. I welcome any ideas anyone may have on how I can make the website better, our support network more effective, or if you have your own thoughts on how I can sustain what I do. Steve
There have been a few stories in the news this year about autistic children disappearing and in one tragic case in Melbourne the child was killed by a train. I was recently told about a situation closer to home by a mum in our support network, which has got me thinking about what options there might be out there to help prevent such inci-dents. I'm doing some research as is Annette, see below, but I would greatly welcome any input from you all out there. If you know of products or information or have personal experiences on the mat-ter, please send me an email. I can create a page on the website to help parents learn more about to keep our children safe. From Annette: Today my friend’s daughter (5 yr old autism) ab-sconded from my house while my friend was visit-ing, we had a helicopter, dog squad on the way and many police cars.
Fortunately she had gone for a walk and was play-ing (or trying to) with some boys, so a very clever boy went and said, mum there is a girl out here talking funny who wont tell us her name. She called the police and they managed to get her home safe and sound.
Last year Axel disappeared in the blink of an eyelid as well, I called the police straight away then too and they located him quickly But given the events of last week it makes me think how lucky my friend and I are so I have been looking at tracking de-vices. There is a really good one from a UK based company, I am enquiring to see if it is in Oz, there was an Oz one I was looking into last year but the device was not as secure as this. If you know of anything else, especially government funded - oth-erwise I think we should lobby the government to provide all special needs kids at risk of absconding
It must have cost them a fortune to get fund the search operation here this afternoon, surely this is not going to cost them anymore and will provide much happier outcomes than the one we saw last week.
There is no shortage of tracking products on line, but lots of research is needed to come up with something that may be suitable and price viable From rubber wristbands to GPS tracking devices.
BOOKS
THE CURIOUS INCIDENT OF THE DOG IN THE NIGHT TIME
- By Mark Haddon
Award winning children's novel novel (that adults will love) about a child with autism who investigates an incident in his own unique way and uncovers more than he'd planned. A wonderful story, the author captures autism so well, I love this book. I believe it is now a part of the high school curriculum. —Steve
MEDIA RELEASE
The Hon Kate Ellis MP
M I N I S T E R F O R E M P L O Y M E N T P A R T I C I P A T I O N
M I N I S T E R F O R C H I L D C A R E
Senator the Hon Jan McLucas
P A R L I A M E N T A R Y S E C R E T A R Y F O R D I S A B I L I T I E S A N D C A R E R S
15 April, 2011
Joint Media Release
Making employment easier for people with disabilities
The Minister for Employment Participation and Child Care, Kate Ellis, and Parliamentary Secretary for Dis-abilities and Carers, Senator Jan McLucas, today announced funding for a new guide to help employers better understand the needs of employees with disability.
The development of A Guide to Employer Engagement – From the Employers Voice will be funded by more than $187 000 from the Australia Government’s Innovation Fund.
“This guide is specifically designed to help employers make the most of the talents of their employees with disability,” Ms Ellis said.
“It will provide clear employment engagement guidelines and advice for providers and employers seeking to recruit people with disability.
“With tools such as these, we are strongly committed to boosting workforce participation and inclusive workplaces, with innovative approaches that help job seekers with disability find sustainable employment.”
The project is a collaborative effort between ACE National Network and the Australian Network on Disabil-ity, to create further resources for more than 220 Disability Employment Services (DES) providers.
Providers will also have access to face-to-face and interactive online seminar briefing sessions, including employment-based case studies.
The Parliamentary Secretary for Disabilities and Carers, Senator Jan McLucas, welcomed the project to address barriers people with disability face in seeking employment.
“Increasing access to employment opportunities is an important part of the National Disability Strategy.”
“This project will improve employer awareness of the benefits of employing people with disability and sup-port them in providing a more inclusive work environment.”
The National Disability Strategy sets a ten-year reform plan that will help to ensure that people with disabil-ity have the same opportunities as other Australians.
Developed through the Council of Australian Governments, the strategy is the first time in Australia’s his-tory that all governments have committed to a unified, national approach to improving the lives of people with disability, their families and carers.
The ACE National Network project is one of 12 Innovation Fund projects targeting assistance to job seek-ers with disability, valued at approximately $2.9 million.
The $41 million Innovation Fund contributes to the achievement of the Australian Government’s Social In-clusion Agenda by supporting innovative strategies to help disadvantaged job seekers find and retain em-ployment.
For more information on the Innovation Fund, visit http://www.deewr.gov.au/Employment/JSA/Pages/InnovationFund.aspx
Not every day I have something nice to say about a politician, but The Member for Lakemba, Robert Furolo, has done something nice for one of our kids. I learnt recently that 14 year old Joshua, is a big fan of this politician. Not for his policies or his ideals but because he thinks he has a kind face. So much so that he put one of his electoral posters up in his bedroom. Unfortunately for Joshua his brothers keep walking in and punching the giant poster at every chance. I popped in to Mr Furolo’s Roselands office recently and told his staff about Joshua and as a result this week he received a photo of his hero along with a personal signed letter. I just wish I could have been there to see his face when he received it.
Dear Friends of Preschool Children With Autism Spectrum Disorders I am delighted to advise you that the 59TH Multiple District 201 National Convention of Lions Clubs Interna-tional in Launceston, Tasmania on Sunday 17th April passed the following Motion, NM 10. “That this Multiple District Convention adopts the Preschool Autism Spectrum Disorders Education and Therapy Project as a Category “B” Project for a term expiring on 30th June 2012”. This means the following: 1. All Lions Clubs in Australia are requested to make representations to the Federal Government and their respective State Governments and where relevant their respective Local Governments to increase their financial support for preschool autism spectrum disorders education and therapy. 2. All Lions Clubs in Australia are requested to make representations to the Federal Government to raise financial support for early intervention preschool autism spectrum disorders education and ther-apy provided by qualified health professionals to a minimum of $30,000 per annum per child, claimable through Medicare. The estimated cost of this extra funding to the Federal government would be approxi-mately $150 million per year. Further information about this project may be found on the Lions Club of Lugarno Inc Website, www.lugarnolions.org.au Lion David Flynn Chairperson, Lions International, MD 201 Preschool Autism Spectrum Disorders Project Lions Club of Lugarno Inc.
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.
EVENTS
WEDNESDAY 11 MAY ASPECT INFORMATION AND PAMPERING DAY
CABRA VALE
TUESDAY 24 MAY FATHER’S / GRANDFATHERS EVENING
CAMPBELLTOWN CATHOLIC CLUB
TUESDAY 3 MAY WORKSHOP:
BEHAVIOURS THAT CHALLENGES US AT HOME SPEAKER: BRENDA SMITH MYLES
FOR FULL DETAILS OF THESE EVENTS PLEASE SEE RELEVANT MONTHS UNDER EVENTS ON WEBSITE
eg. SERVICES / EVENTS / APRIL
TUESDAY 3 MAY FATHER’S / GRANDFATHERS EVENING
CLUB BURWOOD
15 APRIL—3 MAY ART EXHIBITION:
SEEING THE SPECTRUM GLEBE
WEDNESDAY 4 MAY FAMILY ADVOCACY TALK
Dr Bob Jackson Why stop now:
Inclusive education at high school.
28—29 APRIL POSITIVE PARTNERSHIPS—WOLLONGONG
LAST “SYDNEY” WORKSHOP, FEW SPACES LEFT
MOVIES DO YOU KNOW OF ANY GOOD MOVIES WITH RE-ALSITIC PORTRAYALS OF PEOPLE WITH AUTISM?
LE ME KNOW SO WE CAN ADD THEM TO THE WEBSITE ALONG WITH THESE.
