Published May 27th, 2007
Naltrexone didnt work in helping Seth to stop using marijuana. I think now that the only thing that will work is for him to want to stop more than he wants to keep using. I will leave this now between Seth and Hayley. Seth was playing squash the other day and ended up with a broken foot. He now has 6 weeks off work with no income as he is on casual, however because he has the public trustee looking after his money, they have been able to save up enough for him to have all his bills paid for this period. He will only have half his usual amount for groceries and living expenses however it could have been alot worse for all of us. He has a maroon cast given the beginning of the State of Origin and being a Queensland supporter. They seem to be doing quite well otherwise - they still want to get married but they wont be able to afford the wedding that they wanted. I suggested that they just get married somewhere with a minimum of fuss and then perhaps later when they have more money they can have the wedding of their dreams. I dont know if that will be an option they embrace but it really doesnt matter. They can continue living together, they can get married - whatever makes them happy.
I ran into a lady at the Coffee Club yesterday who is a special needs teacher. She said that children with a disability are a gift. I know that is a much used cliche but how i do believe that. Don and I have been through so much with him, worried about his life, worried about ours, concerned that the only reasonable option for him was jail, worried that he would hurt someone, selling our stuff for drugs, but oh how wonderful he is and how beautiful is Hayley. If he can hang on to a girl like Hayley clearly he is a very special man - a gift - certainly to us and I hope beyond anything else - to Hayley.
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Published May 27th, 2007
All current Australian studies on the costs of alcohol related burden of disease and injury are seriously flawed because they do not include the economic costs related to Fetal Alcohol Spectrum Disorder (FASD).
The number of children/adults in Australia with this condition are currently hidden - they are either not diagnosed or they are mis-diagnosed with ADD/ADHD or one of the autism spectrum of disorders. Why? Because our medical and health professionals have not received training in either recognizing, diagnosing or managing this condition. North America has 70 specially trained FASD multidisciplinary diagnostic teams - Australia has none…so it is not that FASD is rare in Australia but rather it is rarely diagnosed because of lack of professional training and expertise in this particular discipline. The accepted inicident rate for FASD based on studies from other western countries suggest a conservative figure of 1/100 people living with one of the diagnoses that fall under the fetal alcohol spectrum or 1/1000 for those with full fetal alcohol syndrome. Australia’s population is approximately 20 million so that could mean conservatively at least 200,000 individuals living with the effects of FASD. There was a report in The Australian a couple of years ago about a young 13 year old boy from Cairns who has FASD. He has been “in care” for the past six years and is costing taxpayers $350,000 a year for 24 hour professional care and therapy. He is expected to cost taxpayers $3 million dollars by the time he turns 18. They then predict that he will go to jail. One Canadian study has estimated the lifetime cost of FAS to be $1.5 million per person. This amount includes only direct medical, educational and social service costs; it does not include the cost of potential FAS consequences such as loss of productivity, crime and incarceration. So, 200,000 Australians possibly living with FASD multiplied by $1.5 million equals $300 million to be added to the cost of alcohol related harms in Australia. When are Australian policy makers and the government going to get their heads out of the sand and start to deal with this?
Sue Miers
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Published May 23rd, 2007
I am in the process of having the Foundation incorporated and will post when it is a fully fledged incorporated association. Thanks all who have supported this dream. Once it is incorporated, then i will get deductible gift recipient status and then………………… all i need is funds. I have sent a positive message out to the universe that i will find a donor willing to give the foundation $2m so I can begin to help people affected by this condition and begin to increase education around Australia. I know it will happen - there is no doubt in my mind.
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Published May 23rd, 2007
I am in the process of writing another book or booket actually on helping someone with FASD obtain and maintain open employment, which federal government programs are the best and anything else I can think of that might help. If I cant get this one published I will put it on my website for free download.
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Published May 5th, 2007
Excellent article on FASD with quotes from Dr John Whitehall from The Townsville Hospital who has written an article which was published in the Medical Journal calling for the current guidelines on alcohol and pregnancy to be changed immediately from a possible seven drinks a week (IF a pregnant woman chooses to drink), to abstinence. I for one will NEVER change my stance on abstinence as the correct and only message knowing that the problems my children suffer are because I didnt abstain.
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Published May 3rd, 2007
What a great pair of interviewers David and Kim are. They obviously did their homework and certainly made me feel comfortable in the studio. I thank them for their commitment to this cause and their understanding of the seriousness of this issue.
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Published April 18th, 2007
I just read a blog which suggested that because fetal alcohol syndrome (FAS) is caused by consistently using alcohol in excess of the guidelines, and because it has been shown that small amounts of alcohol seem NOT to cause FAS, that we should not be telling women that they should abstain completely from alcohol during pregnancy.
I get so frustrated when I see things like that – who knows how many people read it and believe it. FAS is related to consuming alcohol on the 19th or 20th day of pregnancy. That is the time that the particular facial features are being formed and that is what gives us the diagnosis of FAS. What was never mentioned by this blogger was that prenatal alcohol exposure is a spectrum of disorders from ‘mild’ to ‘severe’ with FAS being on the ‘severe’ end of the spectrum. I write ‘mild’ and ‘severe’ in inverted commas because I believe that people without the facial features who still have the brain injury are more disadvantaged than those who have the facial features and are recognised (HOPEFULLY) by the medical profession and many people in the general population as having a medical problem even if they are unaware as to what it may be. Whereas having no visible disability is a huge handicap. This person is constantly subjected to expectations that cannot be realised and so constantly ‘fails’ their family, friends, employers, teachers and themselves. It is a very sad situation when someone tries hard but rarely succeeds in the eyes of other people. So this condition MUST be described in terms of the full spectrum fetal alcohol spectrum disorder (FASD) NOT just fetal alcohol syndrome because it is giving people the wrong idea – that they have to drink far in excess of the guidelines to produce a child with FAS which is not correct. There is no known level of alcohol consumption that is safe for the fetus. Please, if you are pregnant, please do NOT use alcohol it is the safest choice for your baby.
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Published April 12th, 2007
I know very little about the way the Education System works other than there are private and public schools and my boys had very difficult experiences in both. What I do know though is that children with FASD will continue to have difficult, soul destroying stays in our education system until we ackowledge that not all children diagnosed with ADD, ADHD, Aspergers or Autism indeed have those conditions. Children with the latter two may get the attention and have appropriate strategies put into place for them, but children with the former two who according to American research, statistically may instead have FASD, will NOT be the best they can be unless they are diagnosed correctly and appropriate strategies put into place for them. There are so many people I have interviewed and spoken to who believe that many of the children in Special Ed classess have undiagnosed FASD. There are also many children in mainstream classess who make the teacher’s and other student’s life very difficult who have undiagnosed FASD. But what we dont always understand, is that these poor children, who dont know why they are doing the things they do, who are ostracised, bullied, derided and are constantly in trouble, would feel so much better about themselves if they were diagnosed correctly. My children are living proof of this. Please Education Department and Federal Government, please look at FASD as a serious issue in our schools. One that will NOT go away by ignoring it. The children who have FASD and ‘misbehave’ in school are the children who end up in our prison system or our welfare system - why? Because they are undiagnosed and no one knows they have a brain injury - least of all - themselves.
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