geordie mandy

She heads up a charity to support parents and families of children with ASD, as she had a son with ASD years ago. She mainly supports those whose partner is in the ADF. I found out about her through some links on the ASD website and through another army wife.
Mandy

odyssey

Thats interesting, were they children's ones with some sort of sugar or color additive?

My children have concerns and i hadn't got around to all of the fish oil etc. we eat heaps of fish and I wasnt really convinced it woudl make a difference. We have all been taking them now for 2 months and there is definately improvements in all 3 children.

mine dont sleep though and never have so not sure if that is affected. I have been prescribed here with a number of different supplements and tablets but am holding off on giving a lot of them. PErsonally I have found the support at the school to be awesome. My paeditrician I just found the one most recommended and tehn called my dr and asked him to fax a referral through. I do this with all the specialists, I find the one I want and then just ask the dr for the paperwork - its just a logistical necessity to get the piece of paper.

good luck
Vivienne

geordie mandy

As far as i know they were just regular childrens fish oil. Myeldest wasnt too bad on them and there ws an improvement, my middle one had no changes on them. So obviously something in them affected the youngest, just never go to the bottom of it.
Ive got an apt tommorow with the mental health team so onc im there will see wh is the reccomended paedatrician and do as you suggest ask the gp to refer to that one.
Mandy

odyssey

All children aged six and under who are diagnosed with an Autism Spectrum Disorder (ASD) and are not yet at school will have access to up to $12,000 in essential early intervention support, through a landmark $190 million package funded by the Australian Government.

The package is the first national initiative to help families deal with this challenging disorder and is a major breakthrough in support for children and their families.

Under the four year Helping Children with Autism package to be rolled out from next month, an estimated 9,000 children diagnosed with an Autism Spectrum Disorder will be eligible to receive up to $6,000 per year for two years before they go to primary school.

geordie mandy

My son has had his assessment and with out doubt he does have ADHD, they think he may have other issues as well so ive now to make an appointment to see the GP for a referal to see a paedatrician with in the next couple of weeks. They gave me an assessment form to hand to the class teacher to write her observations over the next week, once that has completed he will be given the support he needs in school. So im starting to get somewhere at last
Ive now been assigned a family support worker who is avaliable 24 hours, not that think i will need to contact him in the middle of the night. This service and assessment is available for no charge, which is quite refreshing after hearing of some of the things that i was told i would have to pay.
I really do appreciate the advice given and the information and its comforting to know im not the only parent going through this.
Mandy

Sally Simpson

Well it sounds as though you are getting some good help Mandy which is great to hear. Our experience has been that we had much better support in the UK, particularly at school so it is nice to know that our experience is hopefully not typical.

squeezzii

Mandy, I dont know if this is australia-wide but, when I took my son to the GP, the junior school mentioned something about getting up to 5 free appointments with specifically recognised professionals with medicare. They have a list of which type you can see ie child phsyc, pediatrician etc and a list of the ones that participate in your area. We had to have a referral from GP-she filled out form for the medicare thing then we rang and got an appt.-we had 5 appts and the cost to us was approx $200 in total in the end. we are in WA-maybe its worth enquiring about with your gp?

elice_in_oz

It's a care plan and I believe it's available everywhere. My son had one for speech therapy in Melbourne. You can have a new one every 12 months.

odyssey

yes it is available everywhere. ANd for ASD in particular there are a lot of other things available too. You also get a health care card and $50 a week plus random other payments of 600 and 1000 every now and again to help

I think the healthcare is excellent here and the schools have been nothing but supportive of my little girl (CP with ASD Traits). She goes horse riding on mondays and gets sailing lessons, an aid for X hours per week and they are really on the ball assessment wise. Keep any documentation wiht diagnosis as they will need it for verification with the dept. the school will need to do this to access the funding

IvanM

Our son's were assessed at Tumbatim clinic which is attached to Sydney Children's hospital. Tumbatim is free but only for those in the Eastern Suburbs. It is a postcode lottery.

There are some similiar symptoms common to ADHD, ADD and ASD. Tumbatim's assessment gave us access to carers allowance and the FAHCSIA funding talked about earlier. You can spend the money at approved therapists such as pyches, speechies and OTs.

ASPECT were mentioned earlier and maybe able to help but they are also NSW. My wife finds the best forum to be one of the subsections on EssentialBaby.com.au .

To get the assessment we only needed a referral from a therapist or a GP. I would also get any reports together you have.

Welcome to the wonderful journey of having children with Brains wired up differently. It involves hunting down all the government iniatives and funding you need. No single body will do that and you will have to fight for your child's rights.

Right now is the fight for aid time.

odyssey

Ivan has made a really important point here. things dont just come to you on a plate I have found. You really have to take the driving seat and research research contact people research.

I completely drive the process for my daughter who obviously has physical as well as behaviour differences. I don;t think any of the extensive treatment has just been offered to me, I have found out about it, contacted the right specialists, gone private and then asked to move onto public lists. For CP at least, that seems to be missing - someone who lays it all out for you to understand. Forums are essential'

good luck

Sally Simpson

Thanks guys, you have really given me food for thought. Perhaps I am not being as proactive as I need to be.
I shall discuss with GP tomorrow & see what he has to say!

jad n rich

We were told for 10 years here my sons dyslexia could not be recognised as that but as a learning difficulty, total help in 10 years of education 26 half hours mainly with volunteers. Total help with specialist 6x half hours.

By grade 11 I was contacting the school weekly, this is one of the largest high schools in qld, nobody knew what help there was for a child who was constanty gettin exams back with comments saying improve your spelling

With yet another change of staff, I contacted again and was told my son looked normal had excellent behaviour records and its " not as if hes in a wheelchair or something " so it wasnt obvious he had a problem. We were then sent to a Guidance officer, she knew of private testing in Brisbane, total of approx $1200 where we could get a statement to confirm a learning disability or dislexia, this is yet to come. It will in some exams allow for his lack of spelling ability, it wont make any difference in English or some of the final school exams so hes still really disadvantaged.

Yes you do have to search out specialists and help and the amount of help allowed is often pathetic compared to the problem, cleft palate kids getting a do it at home photocopy pack for speech therapy, or no help at all!!, theres a english lady here who just got 4 appointments for a cleft pal kid with severe speech problems!. As for health care cards to help pay for all the appointments, the assessment for that is very hard to achieve, there have been posts on here from people who have said your child pretty much has to depend on you totally for basic care, not just need specialist help. Again like the entire education/health system it all seems hit and miss, what one gets another does not. In our experience too, what one person tells you may be incorrect the next year, or next election, or next person to take that job, its a life long battle you have to keep at.

IvanM

At first you trust the health professionals that they know everything. No one does and there is no mechanism for them to do so. They all operate in their own specialism.

Keep the GP on side but you will have to search out the help in your area.

geordie mandy

It certainly has been a battle and ive been fighting it since before he was 2.
Ive always been proactive in the UK not that i got much in the way of help, as the 'professionals could only give a suggestion of him being border line ADHD' At least now im getting a diagnosis for the school so he can get the help he needs, i will continue and get a full assessment from the paeds to see what else he could have as well as the centre certainly think it is more than just ADHD but wernt sure.

On face book HEVS from here has set up a page to lobby the govenment for support for children who are different, it would certainly be worthwhile joining her. As the more voices fighting for the cause then the more help we may be able to secure.
Mandy