26th October 2010

Published October 27th, 2010

So I decided to start a blog.  I don’t want to write any more books but we are still having heaps of experiences with Seth that I have no idea how to handle appropriately but we give it a go and maybe some will stick and those that don’t might work for someone else.

I do want to say how grateful I am to the directors of Training Connections Australia (TCA) the company for which I now work.  From July this year, they gave me six months to work on obtaining funding to get the rffada financial so that we can start getting on with the some of our aims and objectives.

Also during the last 4 ½ months, we have developed 8 training modules for different target audiences in FASD.  We have training for frontline workers, parents and carers, teachers and educators, employment consultants, Centrelink staff, JCA providers, criminal justice personnel, students and young people and agencies for the homeless.  Im really excited about them as they are the first publicly available training modules on FASD in Australia – but more importantly I am excited about what the directors have done for FASD in Australia (if I don’t muck it up).

I started out with ITEC Employment in Mackay in 2003 and then moved up to Cairns almost 5 years ago to take on the role of National Quality and Compliance Manager, but when they made this offer, I jumped at it.  TCA is a registered training organisation and along with the usual training it does, it now delivers FASD training for the rffada.

I don’t want to let them down, they seem to have such faith in me – so I have put in around 12 funding applications and tenders, made 756 telephone calls, written 421 emails and said affirmations twice a day for the last 135 days.

I read “The Secret” when it came out and I’ve read Conversations with God.  When I was a young teenager I read all of Lobsang Rampa’s books, which at the time I thought were non-fiction but turned out to the fiction, even though I harbour a secret belief that they are, in fact, true. All of these books say that affirmations and positive thoughts can be very powerful.  Being positive isn’t a real hard task for me.  I’m very lucky that it’s always been my modus operandi. So every day I say, “The rffada can deliver its aims and objectives”, or “the rffada is a successful charity” or something similar. I am confident that I won’t let the Directors down. 

I am also grateful to Sue and Tony Miers who have helped me with everything that has happened to us and encouraged me to get the rffada up and running and to write my books. I know that Sue is there whenever I have a crisis with Seth that I can’t manage and of course i am there for her.  She is truly one of the best people I have ever known. She has done what no one else could have done for FASD in Australia by establishing NOFASARD and running it for over 10 years – all with no funding.

Through the good works of NOFASARD and in the future, the rffada, women may be encouraged not to drink during pregnancy, and consequently there will be many babies who do not have the additional burden of a preventable illness.

Their lives will be hard enough without having an invisible disability that only 2% of medical practitioners feel comfortable dealing with; very few family and friends understand and service providers struggle with.

Seth has not been given a fair go.  If he had MS or paraplegia, or even HIV, he would have services that were appropriate to his needs and people would understand and make allowances when he exhibited the characteristics of his disability.  But now what happens is that the psychiatrist tells me he understands FAS and then tells Seth he must take responsibility for his actions; or we spend hours with a disability service provider who expects me to discuss Seth’s problems in front of him and then even though I tell them he has no insight into his problems, they ring him after the interview and ask him if he needs their support and when he says ‘no’ that’s it! No support! No understanding! No help! Anywhere!

I get so frustrated, so annoyed and angry when no one will help us because Seth has an IQ of 100 and the eligibility for some disability services is an IQ of 70 or 80 – no help!

No help for people with FASD and their parents and carers in Australia except for some of the more progressive grassroots organisations who have seen that there is a gap in their knowledge when it comes to FASD.

That’s one of the reasons I am so excited about the training modules – hopefully they will help to plug this gap.

Well instead of a tirade I guess we should catch up with where Seth and Hayley are at right now.  They are still living in our house in another town and they now have one of the most beautiful little boys I have ever seen.  His name is DJ and I’ve only seen him a few times but I think of him every day.  Hayley and Seth have produced a gorgeous son who has not been prenatally affected by alcohol.  He has every cell and every neuron that he should have and all his synapses fire according to what God intended.

Until recently Seth had a job driving taxis.  Once again we thought that this might be THE job for him. The only problem I could see was that he would be handling money.  At the time he got the job he had been clean (from marijuana) for a few months so I hoped that with Hayley looking after the money after he finished his shift each evening, he had a good chance this one would work.  Apart from the issue with money, the job was perfect for him.  He was driving – the thing he likes most in the world and he only had brief contact with other people.

He did the taxi course, got his licence and taxi licence sorted out, made contact with an owner who needed a driver and negotiated his own hours which ended up being three shifts per week – by all accounts just perfect.

However after six months he started missing shifts and decided that he could no longer do this job. Instead of heartbreak again, Hayley and I were relieved.  During the six months, he had spent more than he had earned and because he had to report how much he earned, Centrelink paid only minimum Disability Support Pension (DSP) so Hayley had to live on less money and we had to put in more.

He had spent the money on soft drink and chocolate and his weight increased from 85 kilos to 110 kgs.  He is huge for a young person (25 years of age) and also once again very unhappy. Regrettably once he finished up work he started back on cannabis but this time as nothing was going to compromise his safety, neither Hayley nor myself will be enabling this behaviour.

Hayley was as furious as I was.  I often wonder just how much Hayley can take and when she will decide that enough is enough.  It worries me – it seems like the situation is untenable any which way you look at it.  Its such a difficult situation for her but she still loves him and I so admire her for her strength and courage.  I love her like my own daughter and will never ever not be part of her life (as long as its what she wants).  Because she is such a unique woman and for all intents and purposes, my daughter, what I would want for her is a man who will look after her, love her, respect her and be her equal.  Seth is unable to do this at this point in time.  He is such a lovely, kind hearted young man, so beautiful on the inside, but his brain is wired differently and even though i know he tries hard to do the right thing, often it turns out wrong – which is a symptom of his condition not a problem with his personality.

At the moment they are going ok and thats all i can hope for.

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