DJ seemed very willing to go to Seth and often asked for ‘Da’.  Maybe it will all be ok.  But what isnt ok is our finances.  I am going to have to stop giving them money, we are in too delicate a situation now.  But what do i do when Seth rings up and says they dont have any milk for DJ? 

I had a look at our house when i was down there and it really needs quite a bit of work.

I think i just need to focus on the rffada and getting funding for it to continue – i dont think anything else is within my control at the moment.

The categories of the awards were Local Hero, Young Australian of the Year, Senior Australian of the Year and lastly Australian of the Year.  All the finalists were called out in each category and either shook hands or kissed Anna Bligh.  At least I have met Anna Bligh and she knows my name and the sort of work I do – at least she knew it last night.  Im not sure whether that will carry much weight when it comes to funding but hey, its a start!

All night I was wondering how Hayley was going and whether she was, at that moment in hospital in labour.  Thankfully for me she is still keeping her little baby close to her chest but I’m sure that she has reached the stage where she would be very pleased to get her second little boy – O U T !

Back to the awards – The Local Hero was a vey nice Doctor who works for the Royal Flying Doctor Service.  I reckon if i were ill, i would want someone like him looking after me.  He just oozed caring and compassion and appeared to be a very humble man. 

The young Australian of the Year was of course Jessica Watson but there were three other young people who were utterly exceptional.  I certainly don’t begrudge Jessica her award, but there was a young man who had come to Australia as a refugee from Ethopia – God knows what sort of horrors he had seen – who had started up a program for at risk youth – he couldn’t have been more than 21 years of age; then there was a young girl who had founded youth without borders – just so admirable and so young.  The Senior Australian of the year went to a lady who is an activist for the gay and lesbian community because her son is gay – I reckon I could get on with her really well. 

The Queensland winner of the Australian of the Year went to Dr Noel Hayman who amongst other things was the first Aboriginal Doctor in Australia.  I can barely believe i was in the same category as someone like him.  I have to admit that i was and am disappointed that i didn’t win.  I was so hoping that a win would help launch FASD in Australia and help me get funding for the rffada and NOFASARD to carry on the work that Sue Miers started.  Also i feel that i have let Lynn and Marie down by not winning.  They went to such trouble nominating me.

I have the opportunity now to say how much I appreciate the nomination and the work that must have been put into the nomination and the referee process.  I believe that Carol Bower, Sue Miers, Vicki Russell and Jan Hammill all agreed to be referees. Thank you all!  I’m honoured to even know you all, let alone have been nominated and referred by such people as you. 

But i must tell you about my husband’s attire at the event.  You might recall earlier that we had a difficult time with him nervous about what he might have to wear – in particular the horror that is ‘tie’!  He had decided he would be wearing ‘smart casual’ which he believed was a euphemism for  the ‘business attire’ that we had been advised to wear.

After i spent days looking for items of clothing that would make him look like he was wearing ‘business attire’, i came up with a combination of light charcoal shirt and darker charcoal pants with an even darker tie.  He looked ‘schmick’ (his words).  He fitted in and i think he felt good in his new clothes.  I even believe I did such a good job, I gave the proclamation that from this moment on, I would be buying all his clothes.  The highlight for him was when the Premier walked up to him and shook his hand and said hello.  I was hoping he would be able to formulate some sort of response but sadly it was too much for him – no words escaped but he smiled so broadly words were unnecessary.

Before we left for Brisbane, i had another big surprise.  My Nephew rang to say he had nominated me for a local community award, the winner of which will be announced at Stocklands at Earlville on the 4th December.  He wasnt sure which organisation it was and i have tried to find out myself but with no success.  So i will be thre at Stocklands on the 4th and wait until my name is called.

Well that’s all for tonight – i wish all the winners from last night success in the next stage of the AOTY process.

Elizabeth

The car that he wants is so out of his ability to buy on the pension with no job.  In fact they cant manage on the pension, we are providing them with between $100 and $300 extra a week over and above so its not viable in any way but it’s stuck in his head.  Its whats called perseveration.  The first choice is the only choice.  I think i have experienced what he feels but only to a very slight degree.  I might see something in a shop, an item of clothing or a piece of jewellery and it keeps going around and around in my head until i either buy the item or manage to successfully use a cognitive behavioural technique called ‘thought stopping’.  It is a technique that i tried to teach Seth when he was younger and  again as a young twenty-something young man but it didnt seem to have any impact on his ability to turn off these thoughts that im sure are driving him crazy.

I didnt have time to talk to him as long as he wanted – he often rings 6 or 7 or more times a day about things.  This time i was busy.  Hayley rang me about ten minutes later to say that he had just woken her up (she is around nine months pregnant and gets very tired) and then stormed off in the car with DJ.

I am always concerned when he gets angry and then drives off.  He has often said to me that he will drive into a brick wall or another car and even though i have become a little blaise about these threats im always reminded of what Dr Clarren told me when he took 8 Zyprexa in one of his many attempts, that we must take EVERY threat he makes seriously.  Because of the combination of impulsivity, immaturity and the missing connection between cause and consequence, the next time he attempts it could be his last.

I do believe that one day he will go too far but that will only happen when we run out of money.  At the moment, his moods and temper tantrums can be controlled to some extent by money.  If he has money for fuel he can get in his car and drive around for something to do.  If he has money he can go to the movies or the beach.  But while he is doing these things, Hayley is at home cleaning the house or working in the yard. Seth rarely helps her.

She is very tired at the moment and i really worry about her because essentially she already has two children to look after, her son and her husband.  She is almost ready to give birth, and Seth by virtue of his disability is only able to think about the things that affect him directly.  He cant seem to empathise with her.  He can make it look like he empathises – like an actor would – but i dont think he actually feels anything until it directly affects him.

Today when Hayley told me that he had ‘stormed off’ and taken his 18 months old son DJ, i was worried about DJ.  Seth isnt sufficiently confident to look after DJ for any length of time.

When Seth wants to talk about things that are clearly unattainable, it becomes a dance with him.  I have to make sure he sees that i am taking his discussion seriously.  If i dont, he will become angry and Hayley will be the one to placate him which isnt easy.  At this point everything i do has multiple consequences for the family.  If i let Seth manage this tantrum without intervening, he is likely to get angrier and angrier and then Hayley has to deal with it.  We have both been through this often – it is uncomfortable and sometimes even heartbreaking but sometimes i get angry myself.  But for Hayley’s sake if there is something i can do to keep Seth on an even keel then i have to do it even though i know it is just a short term solution to a very long term problem.

If Seth were on his own, i would change the way i manage these situations but i cant because everything that Seth does affects my daughter in law and grandsons.

I know for a fact that Seth tries to do the right thing, the best thing, the loving thing, but to everyone but Don, myself and Hayley, his ‘trying hard’ is like everyone else’s ‘stuffing up’.  What really scares me is wondering how long it will be before Hayley sees only the latter.

Im reminded of a comment I made in one of my books when i was trying to describe what FASD is really like.

“FASD is such a devastating disability. What disability results in sufferers being good at small talk but without substance? Then add a kind heart but a violent temper, complex needs but no insight, a small frame with big expectations and perhaps worst of all, a damaged mind but a beautiful face?”

What interested me was the group of 15 young kids.  I must have watched them for around an hour and there wasn’t a cross word or a person disrespected the whole time i was there.  They played solidly, happily while i watched amazed at their closeness and camaraderie.  Very impressive.

But there was a little fellow around 12 I guess who sat watching the whole time.  He didnt try to get involved in the group, didnt smile, just watched. I imagined that he really wanted to join the group and play with them but i wasnt sure whether that was my own imagination – he was probably tired or disinterested in football. 

Its funny how the memory works.  Even though the little boy was a lovely caramel colour with black hair he reminded me of Seth who is pale with brown hair.  All those times i watched him when he wasyoung, watching kids play. Poor Seth, he so desperately wanted to belong to a group like that. 

One particular time i remember we were at the beach with a group of families all with children around the same age as my two boys – maybe 8 and 12.  Mick had a couple of friends so he was with them throughout the day but Seth………………he was so excited we were going to the beach and he knew there would be heaps of kids for him to play with.  He was keyed up all the way in the car jabbering non stop.  Actually i think it was that trip where we took one of Micks friends with us and during the drive to the beach (around 35 mins), i asked the kids general knowledge questions (this was what i did often to help the kids learn and to pass the time so we didnt get the ‘are we there yet?’ ‘are we there yet?’ scenario.

Anyway this young lad was quite intelligent and was getting all the answers right.  Then there was a horrible horrible smell in the car and everyone rolled down their windows and there was a cacophany of “phews’ and ‘oh no’s’.  In between holding my nose and swiping at the air in front of me to try and get the smell out the window, I said, ‘who did that?’  After a few seconds, Seth said ‘it was me!’  Then quietly almost under his breath said ‘at least i got THAT one right!’  Everyone yelped with laughter, but the smell hadnt quite left us so the more we laughed the more we gulped in the foul air.

I digress.

When we got to the beach Seth leapt out of the car and went over to the group of kids.  They all knew each other and they all knew Seth.  As soon as he walked over to the group, almost as one, they moved away from him.  He was too young to realise what was going on so he moved closer and so it continued until they all ran away from him.  He was too little to keep up so he came back to the adults where i had been watching this.  I remember that this was before i got sober so i was drinking but not drunk or anything.  I had seen what had happened to him and as he came back to sit with me i felt so so sorry for him.  At the time i dont think he had really cottoned on to what had happened, but as the day wore on more of the same happened.

I will never ever forget that day.  The other kids played some sort of ball game while little Seth sat and watched them longingly.  He had tried to join in but they wouldnt let him and he just didnt understand.  Mick wasnt a great help either.  Everything that Seth did alienated people from him.  He was immature, boisterous, over-excitable and over-powering but it was all because it was the only way he knew to get the attention of his peers.

The same thing is still happening.  He has no friends.  When he meets someone who does become a friend, its not long before they leave him.  He doesnt understand why this keeps happening.  He has a normal IQ so he knows that he wants to be like other people his age but he is too damaged to make that happen.

It devastates me when he rings and says that such and such wouldnt take his call, or he went over to see some person he thought was his mate only to find that they slammed the door in his face.

He doesent undersstand why this happens – he is clueless about why he has this effect on people and it hurts him so much.  He had his 21st and invited all his friends but no one came. 

On a lighter note……………………….. nah – maybe tomorrow

I rang the Department of Health and Ageing in the hope that they would have funding for us to continue.  I said i would even come down and give a presentation to the people who have the authority to grant funding. They havent said ‘no’ yet so i guess thats a positive.

If anyone knows of any funding that is available for an organisation with following aims and objectives please please let me know:

·         To provide support to establish diagnostic centres in major centres across Australia

·         To assist in the education and training of health and allied health workers, students, teachers and educators, social, welfare, youth and substance abuse workers, criminal justice professionals, parents and carers, employment services personnel and other people in key positions to fully understand the implications of prenatal exposure to alcohol

·         To identify, support, educate and care for birth mothers using a “no blame no shame” ethos

·         To assist the rffada partners to achieve their aims and objectives in the prevention, education and support of people with Fetal Alcohol Spectrum Disorder and their families

Thanks

But there was some good news today.  WIN Television interviewed me about the AOTY award but of course we also got another mewsage about FASD out there so i am really happy about that.  Carrie-Anne is very easy to work with and she is so beautiful.  I think i upset a couple of my colleagues Rob and Michael because i asked them to be part of the story by being interviewed and i feel a bit guilty about that – really – no really!

I havent seen the news yet as i forgot to watch – actually i rarely watch myself when Im on TV as i get so embarassed and self conscious i feel sick.  As long as the ‘no alcohol is safest for baby’ message gets out thats all that matters to me.

Anyway thats it for tonight.  I have a headache – probably from eating too much – im a pig.

She told me that I was a finalist in the Australia Day Awards for 2011.  Gee Im only a mum – how on earth did THAT happen? Not being a mum but being a finalist in the AOTY awards.

Kirrily said that Lynn Mabey from Pregnancy Support had nominated me along with the Vice President of Pregnancy Help Australia Marie McGuire.  Also there were people who had refereed me - Professor Carol Bower from the Telethon Institute, Vicki Russell (no relation) from the Drug Education Network in Tasmania, Sue Miers from NOFASARD and Dr Jan Hammill from the University of Queensland.

The thing that always runs through my mind when faced with something like this (not that Ive ever had THIS particular experience) is “OMG i dont deserve this!” And very quickly on the heels of that is “eventually they’ll find I’m not what they think i am”.  But that didnt happen this time – my first thought was “Wow what a perfect opportunity to get the ‘FASD’ message out!”

Thanks so much Lynn and Marie I am grateful for this opportunity.  Ive nominated someone for an award before – not this big – but i do know the work that needs to go into a successful nomination.  I wanted you both to know that i know about that.

This morning the ABC interviewed me – it was i thought a great interview because it gave me time to rectify two mistakes i tend to make all the time.  The first is to paint a bleak picture of FASD depending on the sort of week ive had with Seth and the second is to advise that no alcohol is safest without remembering to say that for pregnant women who have consumed alcohol, the sooner they stop the better it is for their baby and that they need to consult their GP.  So with both mistakes rectified and a 20 minute interview, i thought it was an excellent start.  Fiona (the interviewer) was very easy to talk to so i got all my messages out.

There are two other finalists with me and we will all meet on the 18th in Brisbane when the winner is announced.

I think Ive mentioned my long suffering husband before – he is a ‘man’s man’ by which i mean a ‘blokey bloke’ a ‘man with a shed’ who wont put moisturiser on his hands until they are cracked and bleeding, who has restored three WW2 military vehicles and believes that a man should not have a pedicure or even a massage (although i think he has capitulated on that when he had a sore shoulder).  I have rarely seen him out of shorts and TShirts even though he has some really schmick clothes that i’ve bought him (he’s not allowed to buy his own).  Anyway what Im getting to is that he was so excited when he found out he rang his sister, his brother, his sons and then rang me.  By that time he had come to the realisation that there was likely to be an ‘event” associated with this that he might have to attend. He asked me to ask whether he needed to wear a tie (which he didnt), then said it was probably going to be ‘smart casual” (he wishes). 

It turns out it is ‘business attire’ which really means he can wear pants and a shirt without a tie which he is ok with him given that he had a close shave with having to wear a tie – anything other than that was a good deal for him.

Ive ordered pants for him and he has a shirt that will do – i think if he does as he’s told, he will look great.  I love him anyway but when he’s all dressed up he looks yummy. Even though he’s an old man – he’s my old man.

Seth seems very buoyant and i think it’s because he is active, achieving something and he is with friends.  He certainly seems to have put some effort into this huge activity.  Usually he finds it difficult to keep going physically on a job.  He either gets tired easily or runs out of motivation – I’m not sure which. With his weight the way it is I’m not surprised that he gets tired.  He says the weight is coming off now that he is not sitting all day in the taxi.

We’ve learned a lot about Seth since he was first diagnosed. The most problematic characteristics are ones which are a result of a lack of understanding of cause and consequence and the inability to plan that most people with FASD experience.

When Seth is working at something he enjoys he is a different person.  I believe he is more the person he was meant to be.  There is nothing as wonderful and as heartbreaking as seeing a glimpse of that person.  It’s not a good thing to think about often but it’s hard not to sometimes especially when those glimpses are so intoxicating to me.  When i see them I think that maybe in a few years …… It’s almost too hard to comprehend that his problems arent the result of something large like a motor vehicle accident or a bomb or at least something bigger than alcohol – it almost seems too small a thing to have caused such a huge problem.

When I see comments as the result of some news item about alcohol and pregnancy which say that ‘it’s my body, i will have a drink if i want to’- i just want to scream because its not the mother’s body we are talking out.  I wonder if that’s were there has been some miscommunication.  We are not suggesting that mothers stop drinking because it will harm their body, we are suggesting that not drinking is the safest choice for the baby.  And i can tell you that if i had that time over again there is nothing i wouldn’t give to have known what alcohol was going to do to my little baby BEFORE i had taken that first drink.

Parts of my life have been challenging but nothing that has happened to me equates to a day in Seth’s life.  Of course everything that happens to, because of and by Seth, also happens to Hayley.  I love her and dont want to see her hurt.  I told Seth today that his relationship with Hayley is the most important thing in his world and he must do everything he can to be a good husband and father.  I keep think there must be something i am not doing that would make the difference, something i should have said or something i could be saying now to him that would help him.  As his mother i (and im embarassed to say this) but i really feel like i should have been like some of the parents in the 80′s sitcoms like the Cosy Show.  I always compared my parenting to theirs and (of course) always fell way short.  I used to wonder whether Seth would have been more prepared for family life if he had been parented by the Huxtables.  Silly hey

I have a strong belief (not a religion) in God and the things i believe, i know to be true for me, but even that doesn’t help all the time.  We have huge debts from the GFC and we are nearing retirement. Seth and therefore Hayley cant live on the pension.  When Seth says that there is no food for DJ I cant not send them money. Natural justice and tough love dont work with people with FAS and besides that how could i live with myself knowing that DJ doesnt have enough food. 

Don and I worry about what will happen to Hayley, Seth and the children (Hayley is due to have their second beautiful baby in a few weeks) when we cant work any more.  I do have a strong belief that we are here on this earth for a reason, I believe in reincarnation and i try and believe that Seth had some reason for choosing to be my son and therefore Hayley had some reason for wanting to be part of our family. 

Take care and have a great Halloween.

Elizabeth

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.

Sonia Berton; Sue Miers; John Eyre; Ross Woodward; Danielle; Martin; Debbie; Vicki; Lyndall; Seth and Hayley; David, and many more.