Part I
Biographical Information

Background
To the Australian Employment Services Industry

In 1992, I began work as a Trainee Employment Officer with the Commonwealth Employment Service (CES). Shortly afterwards in 1994, Employment Assistance Australia (EAA) was established as the government’s case management arm to provide a public case management service for long-term unemployed jobseekers. I worked at EAA for four years as a case manager and helped disadvantaged jobseekers obtain and maintain sustainable employment.

When the CES and EAA were both discontinued in 1998, two years after the Howard Government came to power, revised arrangements in the form of the Public Employment Placement Enterprise or PEPE Ltd were established. Eventually the PEPE shed its odd appellation and became Employment National. It was to be the organisation to lead Australia’s employment services into the twenty-first century. After navigating a daunting recruitment process, I began work as an employment consultant in this new organisation.

I consolidated and honed my case management skills in EAA learning about mentoring, job-search training, reverse marketing, post placement support, mediation and very importantly, how to help a jobseeker find and keep a job and achieve an outcome[1] for the organisation. I also learned that for some people just getting the job was not enough to ensure a sustainable result. For some jobseekers, the importance of strategic post placement and transition support could not be underestimated.

Through design or bad management, Employment National was unsuccessful in the subsequent tender round in this rapidly evolving industry. My next career move was to the disability sector as an employment services consultant in Vocational Rehabilitation. My job was to find suitable employment for jobseekers with a disability, up-skilling them in job-search techniques and negotiating with employers to place them into employment or utilise employer incentives to assist the employee and the employer through the typically unproductive first few months of employment. Over the four years I worked in vocational rehabilitation, I learned a great deal about disability employment.

It was in this job that my previously irregular contact with Sue and Faye to whom this book is dedicated, became more consistent. Although we were delivering different programs, we worked in the same sector of the employment industry. I found as far as the field of disability employment was concerned, I was appallingly ignorant. Apart from immediately thinking of a person in a wheelchair when I reflected on what a person with a disability might look like, I also found that for some people, their needs in the workplace and hence their post placement requirements were at the same time far greater and far less than I had first thought. I was soon to be educated.

I worked primarily with people with mental illness and physical injuries caused by motor vehicle or workplace accidents. Sue and Faye on the other hand worked primarily with people who had acquired their disability congenitally – intellectual disability, neurological disorders, autism, cerebral palsy and learning disabilities. People thus affected require more intensive, comprehensive and targeted post placement and transition support than many of the clients from vocational rehabilitation.

In 2003, I moved to ITEC Employment as policy and development manager. Shortly afterwards, to help consolidate a rapidly growing company, ITEC Employment purchased a small job network contract in Mackay and I was asked to manage the site until it was established and operating optimally. Eighteen months later my husband and I moved to Cairns so I could work at head office managing the Personal Support Program, Job Placement Employment and Training, Indigenous Youth Employment Consultant and the Disability Employment Network (Uncapped) at sites across Queensland, the Northern Territory, Western Australia and South Australia. 

Background
To Fetal Alcohol Spectrum Disorder

As the birth mother of two children with FASD, I have intimate understanding of this condition at its most fundamental level over the years. I learned that two parents alone cannot successfully ‘manage’ a child with this condition no matter how loving and caring they may be. I also learned that interrogating every relevant state and federal government department, every community organisation and every disability service in Australia for services specific to Fetal Alcohol Syndrome resulted in finding only one unfunded, community-based organisation run on a volunteer basis by one dedicated individual, Sue Miers.

I learnt more about my son’s disability in one telephone conversation with her than I was able to garner after five expensive consultations with medical practitioners.

After discussing our situation, she suggested I go to the next FASD Conference in North America. I was prepared to travel anywhere in Australia to find help for Seth and Mick and instead ended up having to travel to the Yukon. A little town called Whitehorse, with a population of 22,000, held the secrets that would eventually lead to a diagnosis for my son and an appreciation of the condition that almost every country in the world understands better than Australia.

My youngest son Seth was born in 1984 and my oldest son Mick in 1981. Seth was diagnosed in the United States by Dr Sterling Clarren who I met at the Whitehorse Conference. I turned to him because doctors in Australia would not or could not acknowledge that Seth might have this condition, let alone diagnose him. I later found that most general practitioners have not had the necessary training and most don’t even recognise the condition in their patients. Even though Seth was suicidal at the time I was unable to obtain assistance and support with the exception of Sue who, although a wonderful source of information on the condition could not offer a formal diagnosis or prescribe medication.

Dr Clarren[2], at that time from the University of Washington in Seattle, eventually diagnosed Seth with full Fetal Alcohol Syndrome and Mick, my oldest son with Neuro-developmental Disorder – alcohol exposed.  

Background – Seth and Mick

I would like to preface discussion about my sons with a positive message. 

Even though there are obvious negatives to this condition, Mick and Seth are good people and a credit to themselves and the people who love them.  Because of the behaviour inherent in the condition, some individuals who have been prenatally affected by alcohol are often viewed as louts, hoodlums, vandals or delinquents.  However it is important to view this behaviour as separate from the individual – the behaviour is the disability; the individual behind the disability is a person like any other.  They have the same fears and pain; they strive with the same energy, meet success with the same joy and failure with the same dread.  They dream the same dreams and are disappointed by the same failures.  Being pregnant was a wonderful experience for me and I knew it was the beginning of my life.  I simply didn’t know that alcohol could cause such heinous damage.

Before I found I was pregnant with Mick, I drank very heavily. From then until Mick was born I don’t recall any specific episodes of drinking. I am sure I must have, although I don’t think it was to the point of intoxication. When I was eight and a half months pregnant, my obstetrician performed an amniocentesis and then prescribed a few drinks in order to keep labour at bay for another few weeks. I did as I was told and remember sitting on a barstool with my husband, drink in hand, both of us without a clue as to the legacy we were bequeathing our child through this seemingly, at the time, innocuous act.

Mick was born prematurely. My waters broke early and a scheduled C-section became an emergency one. Mick’s birth weight was 6 lbs – a tiny baby with skinny little legs and arms. Even though he was so tiny, to my husband Don and me, he was the most cherished human being ever born.

Cherished or not, by the time I left hospital, I knew that looking after him would not be straightforward. He had severe colic and was apparently lactose intolerant. His crying seemed to go on for months without a break. I wished there had been something that I could have done for him. I knew there was a reason for his crying but I couldn’t imagine what it was. It was twenty years later that I understood why Mick could only sleep when I wrapped him snugly in his blanket, and why he could only tolerate small amounts of food or milk at one time.

At this time, my husband Don and I were living in a small mining town. There were no resident doctors. Two experienced nurses were responsible for the operation of a basic health centre. I knew they thought I was a panicky, neurotic mother with a cute little baby who would have been fine had he been fortunate enough to be born into a different family. Mick was constantly sick – there was no arguing with that. He had temperatures, upper respiratory tract infections, colds, allergies, viruses, influenza and stomach upsets.

At five months of age, he settled down and slept more regularly and soundly. He began to thrive. He actually got ‘chubby’ and was much healthier than he had ever been. His problems now related to meeting his milestones. He didn’t roll over until he was eleven or twelve months old[3]; didn’t walk until he was twenty-two months and didn’t talk until he was two years.

Just after he turned nine months I discovered what I thought was a hearing problem. I was preparing a meal in the kitchen and when I opened the cupboard to get a saucepan, all the pots fell out. Mick was in the kitchen with me in his playpen. I thought he would begin to cry with fright but when I looked he hadn’t flinched, was not startled nor had he even looked around. Although I am not a doctor or a hearing specialist, to me, he appeared to be stone deaf.

I took him to an audiologist and results showed that his hearing was in the normal range. I was relieved but puzzled. Once again, when I learned about FASD I understood this was likely to be a processing disorder, a characteristic of prenatal alcohol exposure.

Around the same time, although I struggle to remember the exact timeline of these occurrences, I took Mick to what I imagined was a routine visit to the paediatrician. In a very casual voice with not a hint of comprehending the impact his words would have on us, he said there was a possibility that Mick could be ‘retarded’.

He also said he couldn’t give me a definitive diagnosis for another six months. With such a long time to wait for the eventual result, I researched retardation and massage for babies. I bought books on physical therapy and made a cylindrical pillow because one book suggested that this was a good way to increase the stimulation of a baby’s brain and would benefit his coordination. I rolled him backwards and forward on his tummy morning, noon and night while he giggled and laughed. While listening to his baby giggles was a delightful experience, they resounded throughout the house during the longest six months of my life. At the conclusion, he was pronounced ‘normal’ by his doctor.

Now that I have a fairly comprehensive knowledge of FASD, I am sorry I didn’t question Mick’s doctor more thoroughly. He may have had some idea as to the aetiology which, had he discussed it with me, could ultimately have saved Seth. This is an issue that we as Australians need to understand completely. If we identify a child with FASD, it gives us the opportunity not only to support the affected child but also to save subsequent children from the same fate providing we support the mother effectively.

In summary, from birth until the age of twelve months, Mick experienced the following symptoms:

·         Low birth weight

·         Failure to thrive

·         Developmental delay

·         Unsettled, fussing, uncomfortable, crying constantly

·         Central auditory processing problems (his ‘hearing’ problems)

·         Possible retardation

·         Small for his age

Although Mick had some quite discouraging symptoms, which I now know to be related to prenatal alcohol exposure, socially he managed well. He had good friends and played in age and gender appropriate ways. Cars, trucks, super heroes and war games were his favourites. He had a great imagination and a wonderful sense of humour. He picked up a stick and it became a gun; he wrapped a towel around his shoulders and turned into superman; he put on his green backpack and morphed into a mutant turtle.

He started school at five years of age and seemed to do well until he was in the more senior grades where he was required to expend more energy, work harder and be subjected to higher expectations. At first, it seemed he had limited comprehension of the work; later, to our relief, even though his results were very average, his comprehension of complex and abstract concepts gave us hope. It was only when I researched FASD and looked closely at Mick’s history that I realised how lucky we had all been. He might be smaller than he should be, given Don’s and my height, but he can hold down a job, manage his money, budget and live independently.

When he was between ten and eleven years old, at separate consultations, his paediatrician and his dentist both discovered major health problems.

The first, the result of Mick describing strange feelings of ‘not being here’ were ‘absences’ which segued into migraines. The other was a tumour in his jaw, which the dentist described as being the size of a golf ball.

The ‘absences’ seemed similar to petit mal seizures and they appeared to occur only when he was overwhelmed, over-stimulated or stressed. Mick often described them to me, ‘Mummy, I feel like I’m not here’. After several months the migraines preceded the absences and the pain became so bad he would vomit unless he was able to rest quietly in a dark room.

The result of a referral by our general practitioner to a specialist in Rockhampton for an electro-encephalograph found that Mick had temporal lobe epilepsy. No medication was prescribed at the time and he continued to suffer for the next sixteen years. He has relief now from both headaches and absences with medication.

During a regular check-up, Mick’s dentist found a tumour in his jaw. It soon became apparent that it would need to be surgically removed. It was benign but quite large and forced some of his second teeth up into his eye socket. Instead of being the size of a golf ball, when it was removed it was actually the size of a tennis ball which, in the jaw of a skinny ten year old, covered almost half his face. The tumour was removed and apart from the initial recuperation period, Mick has had no further dental problems. When I learned the medical and behavioural problems associated with prenatal exposure to alcohol, I found that instead of having a number of unrelated and discrete issues, there were three more ‘markers’ to add to the list:

·         Dental abnormalities

·         Temporal lobe epilepsy

·         Limited ability at school particularly in the higher grades

Even though eventually Mick had many of the symptoms of full Fetal Alcohol Syndrome, he never exhibited any of the behavioural problems. He got on well with both peers and adults alike.

Our second son Seth was a different story altogether. He was not premature and was a solid 8 lb baby. He was strong; he thrived, reached and exceeded his milestones, grew steadily and was a happy, gregarious, active baby and toddler.

He began stringing sounds together at four months and saying words and walking at nine months of age. He chattered incessantly, was hyperactive and gradually, over the years, became livelier, more active and far more adventurous than was healthy for him. He did not seem to understand the concept of danger and gave the impression that he did not learn from experience. He wandered away from home on a regular basis and no matter how determined I was to be a good mother, he seemed equally determined to disprove it.

From birth to the age of eight, he exhibited the following symptoms of prenatal alcohol exposure even though we still had no idea he had a disability:

·         An inability to generalise learning

·         Good expressive language

·         Inability to link cause and effect

·         Impulsivity

·         Hyperactivity

By the time he was twelve years old, he had used alcohol and cannabis and at thirteen he discovered sex and truancy. By fifteen, he had punched many holes in our walls and discovered how to intimidate me to the point where I hid our kitchen knives.

The years he spent in high school resulted in an additional slew of behavioural and academic disasters. There was no doubt that Seth had a good IQ, he was bright and he appeared to miss nothing, but on the other hand, he also seemed unable to apply his intelligence to the school curriculum.

His frustration consumed him. He was bullied, ridiculed and teased, and through all of this, I could see that he was trying his hardest. His teachers became more determined to punish him into working harder and comply with school rules. He found friends and lost them. He had detention upon detention, was suspended and often simply refused to go to school – now I can understand why. Even though he was loved utterly and unconditionally by both parents, never abused, was treated with dignity and respect and had a stable and loving home, he was behaving as though he had experienced chronic and severe abuse.

By fifteen, he had left school and found work. Three months after gaining his first job, he found another; after three months of patchy attendance, he was dismissed for stealing, had attempted suicide and had caused his terrified parents to consider sectioning him under the Mental Health Act in the hope that it would save his life.

In terms of prenatal exposure to alcohol, he had exhibited the following primary characteristics and secondary disabilities:

·         Immaturity

·         Social and adaptive dysfunction

·         School refusal / truancy

·         Academic failure

·         Drug and alcohol abuse

·         Inappropriate sexual behaviour

·         Work avoidance

·         ‘Stealing’ (this does not mean to people prenatally exposed to alcohol what it means to us)

·         Mental health issues

·         Suicidal ideation/attempts

·         Violence/anger

In desperation, I took the advice of the school counsellor and made an appointment with a paediatrician to ascertain the reason for this behaviour. The counsellor believed he had ADHD and after a surprisingly short consultation, Seth’s paediatrician formalised the counsellor’s informal opinion. So now at least we had something, a reason for his behaviour, a diagnosis! He was just as relieved as Don and I were – for a time.

When the dexamphetamine that the doctor prescribed stopped working, we were back to square one and we could add another ‘marker’ to our sizeable but as yet unidentified basket of behaviour and symptoms – the diagnosis (or mis-diagnosis) of ADHD. Seth was also left with additional problems as a result of the side effects of the medication. He was unable to sleep. This led him to wander the streets at night because he was bored, which in turn led to more trouble for him and for us.

From then until I stumbled on the term ‘Fetal Alcohol Syndrome’ on the Internet four years later, the family maintained a status of Defcon One[4]. I stayed awake night after night worrying where he was, what he was doing, who he was with and whether he was safe.

As a teenager, if he chose to go out for the night, he would go regardless of our supplications and concerns for his safety. Neither Don nor I would know where he was or when he would return. He sometimes remained away from home for extended periods. I was desperate, tired, depressed and anxious, and I was still working full time in a demanding job. We needed the money, otherwise I would have left in an instant and stayed at home. Seth was behaving so bizarrely that I couldn’t even conceive of what might have been the problem. I guessed drugs and alcohol were the main culprits and blamed myself for the genetic predisposition that encumbered him.

Now, when I hear an ‘expert’ on the news say that parents should be made to ensure the whereabouts of their children, I believe the children should first undergo an assessment for FASD so that appropriate strategies (other than corporal punishment and behavioural modification) can be put into place to ease the burden for both parents and the affected children. If a child with FASD wants to go out during the night, the only thing that will keep him in is imprisonment.

When I did learn of Fetal Alcohol Syndrome and made the connections to Seth’s behaviour, it all made sense to me. Surprisingly Seth actually seemed pleased when I told him my fears. After thinking about it, I realised that for so long he had believed himself to be a ‘loser’ that he was actually grateful to have Fetal Alcohol Syndrome – in fact, not necessarily FAS, but anything.

For a proper diagnosis that the authorities in Australia would accept for various necessary services such as the Public Trustee and the Disability Support Pension, I had to obtain it from an expert in the United States. Not being able to find a doctor in Australia who could even talk knowledgeably with me about it was a huge dilemma for us  ... we had no support!

To this day, I wonder about the actions of the doctors I did visit. How much easier it would have been for us to have a doctor in Australia who was willing to support Don, Seth and me through this difficult time. Instead, I was obliged to fly to another country, not only to obtain the initial diagnosis but also to have ongoing consultations via email. What would have happened if Dr Clarren had been unwilling to help us this way? He has never charged us a cent and to this day provides us with advice and support.

Sue Miers and her husband Tony had been through the same unhappy situation several years earlier and had established NOFASARD. When I was lucky enough to find Sue, I knew that our non-medical support lay in her hands; again, she charged nothing for the support she provided during those first months of recriminations, explanations and investigations.

When we had a diagnosis, we also had a starting point; people had been there before us, and there were practice-based interventions that worked, strategies that succeeded and medication that reduced aggression and violence.

When I connected with Dr Clarren, I found that Seth had the classic facial features of full Fetal Alcohol Syndrome. Until then I thought he just looked like an ordinary young man. But with fresh eyes and a little bit of information, I could now see the differences although I would defy anyone to pick him out in a crowd:

·         A small neat nose

·         Small, low-set ears

·         Thin upper lip

·         Flat philtrum

·         A small head circumference

·         Small palpebral fissures

Even with a diagnosis, it wasn’t all plain sailing. It was certainly a much better situation but there were still tantrums, holes in the walls, perseveration and refusal to carry out all but the most basic hygiene practices. At least now, my husband Don and I viewed this behaviour in terms of him having a problem whereas before I had thought he was being a problem.

There have been many ups and downs since then. One of those integral to his sanity and independence and our resources has been his ability to maintain employment.

I have written about most other aspects of our lives with FASD in my other books, but have not gone into great detail about employment, which for an adult is a crucial conduit to independence. From my experience, people with FASD will only be as independent and successful as support services are knowledgeable. There were several critical factors that needed to be addressed before we had any success at all with sustainable employment for Seth.

Oddly enough because the name of the condition implies fetal damage it is not always appreciated that fetuses grow into babies and the babies grow up into teenagers and adults. It is also a problem that a person who looks capable is also presumed to actually be capable. The most frustrating thing about this condition is trying to get suitable services and the people in those services to understand that individuals can still have a brain injury yet have a normal IQ.

If professional services have difficulty understanding these concepts, then it is almost impossible for the general public to do so. The presumption of capacity and capability seems to be based on perception. The majority of people with FASD are not ‘retarded’ nor do they look different from others and they can often, for a short time anyway, appear so capable it’s uncanny. Therefore, perception and expectations are that FASD is rare. People who have a significant disability are seen to be merely juvenile delinquents or drug and alcohol affected louts or criminals. Strategies for Employment Services Specialists is the third in my Alcohol and Pregnancy ‘series’ and it focuses on the impact of FASD, and other similar barriers and disabilities, on employment and how to reduce the impact to obtain sustainable outcomes. I will be chronicling both Seth’s progress through employment and my growing understanding of barriers that people with FASD, and indeed many other disabilities, face.

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