Cheryl Dedman and her husband desperately wanted a second child but, with Cheryl having lost pituitary function as a result of a brain tumour, it wasn’t to be. Shortly after adopting their son, Jacob, the couple began to notice distinct differences in his behaviour and development. Ultimately, he was diagnosed with Fetal Alcohol Spectrum Disorder (FASD) – a brain injury sustained through prenatal exposure to alcohol.

“Ten years after our first son was born, we were chosen to be Jacob’s family. He looked fine – we were told he was fine – but appearances can be deceptive. I did family daycare for a number of years and I also worked in a school, and I could see that Jacob presented very differently to so many of the children that I had looked after. And I had looked after all variables of children.

“By that stage, our biological son had been diagnosed with aspergers and all I could think was, they’re going to be saying, ‘what have you done to have two children with a diagnosis?’ That it would be my fault.

“By the time Jacob was three and a half, I went to a GP with a diary of information on his behaviours. The GP felt it was autism, as did the paediatrician, so he was passed to OT, speech pathology and a psychologist for review. They all came back saying, ‘yes, autism’, although the psychologist noted that she’d never seen a child like Jacob before.

“So, we went ahead with using all these strategies for autism. Kindergarten was very difficult, so we sought one-on-one support for school. Unfortunately, the school didn’t process the necessary paperwork, so that didn’t happen. Jacob was so overwhelmed that the first three days he spent at school left him in huge distress – shallow-breathing and grey in the face. It was horrific. Over time it became clear that none of the things that had been suggested to help him in the classroom were actually being done, and when I offered my time to come in, to do some regulating exercises at lunchtime, even that wasn’t embraced.

“It was at that point we made the difficult decision to withdraw Jacob from mainstream schooling and home educate him.

“Since then it has been hard, but over time everything was saying to me, even with autism, this is really difficult. I’ve taught children with learning difficulties in school, but this was different. It was thought at one stage to be RAD (reactive attachment disorder), and course we now know now that FASD is often misdiagnosed as RAD.

“We were going through hell with trying to manage him at home, and we were at crisis point a number of times. Eventually, I was on the train with one of my elder son’s teachers and she noticed some behaviours but didn’t say anything. And then, a few weeks later, she saw me in the street and said, ‘I don’t know anything about Jacob’s history, and I don’t need to know, but I just urge you to watch this SBS show’. So, I looked it up and I watched it. Well, I could only watch the first five minutes. It was so frightening; the reality of there being no cure, average life-expectancy of thirty-four years, probability of entering the juvenile justice system and so on.

“And I’m looking at him, knowing he presents so well that even my own family don’t believe what I’m saying about him – that it’s just the way I parent (which in itself was really, really hard) – but knowing in my heart of hearts that we have a real problem here.

“Then things really reached a crisis point. We went away on holiday to try to relax after the death of both my parents, and the situation with Jacob imploded.

“We were staying in caravan parks and there was too much stimulation. Jacob was locking himself in the toilets and throwing toilet paper everywhere. He was completely dysregulated. A lot of times he doesn’t actually know what he’s doing – he can’t remember it.

“I rang NOFASD Australia in desperation and, instantly, I’d received a lifeline.

“Making those connections and finally having a name for what we’re experiencing has given me the confidence to be able to say, ‘this is not about anything we’re doing – actually we’re doing a good job’.

“There is a lot of management every day for Jacob. Most people with FASD have a normal or average IQ. There’s a percentage that have a very low IQ, but conversely Jacob is in the high IQ area. So, Jacob gets very high, complex and sophisticated ideas, but because his executive functioning area of the brain hasn’t developed properly, he can’t filter to say, ‘well, actually that’s not safe to do’. He’s also not able to move that idea away from his brain. So, if he decides that he wants to carve something with a knife, for instance, nothing will get in his way. We have our knives locked away for that very reason! In the past, he would try to break open cupboards to get to whatever he needed, and it’s taken a huge amount of work to getting him to the point of managing his impulses and behaviours.

“I’ve developed a way to go about things, by doing some diversional therapy with him. It’s not about giving him a reward if he moves away, but about diverting him in some way so that I can help him regulate enough that he’s able to talk about his plan, find an alternative, or find a way to do it safely. In the past, there was no way that I could get to that point with him. It’s been years of work.

“When he was six, my husband and I needed a break. So, we found a carer and she said she knew what she was doing. We said very clearly what Jacob was and wasn’t allowed to do, and that included going near the shed. Well Jacob convinced her one day that he needed a pump to pump up a ball, but it was in the shed. He told her, ‘I know where the keys are’, so she opened the shed and went in to get the pump and he slammed the door behind her and locked her in. He didn’t like her, so his solution was to get rid of her. The lady eventually worked her way out with screwdrivers that were in the shed and when we arrived home she walked out the front door, shaking her head and rolling her eyes.

“That’s how he operates – if I can’t see it, it’s no longer a problem. In the same way, he hides my books even now because they’re not his and he doesn’t want to see them in the bookcase. To him, it’s an obvious solution.

“So he’s 16, but he swings between being like a six-year-old in function to an 18 or 19 year old in intellectual terms. He’s engaging; he loves to talk, particularly about things he’s interested in. But what people don’t realise is that he’ll nod along in conversation, even when he doesn’t understand, so he can give the impression of being much more competent than he is.

“He gets very frustrated because he’s often not able to get a word from his head. He knows something that he wants to say, but the words won’t come out and he can’t make me understand. That really frustrates and angers him. We’re now at a place where violence is irregular. In the past it might have been two to three times a day.

“He wants to fit in – he wants to be what everyone thinks is normal. And that really is hard for him to because he’s trying to act normal when we’re out. But he’s trying so hard that when he comes home and he can just be himself, then he’s going to explode.

“His brain doesn’t have the capacity to regulate on its own – like a much younger child. We need to watch the sorts of foods that he eats because, very early on in his life, we found that preservatives and colours really reacted with him. There are so many minefields – from things he smells, hears, tones of voice, amount of screen time. We’re constantly watching for triggers and intervening so, to a great degree, the extent of his needs aren’t obvious to other people.

“How I speak is very important. I have to try to use a voice that’s acceptable to him. If I’m distracted and I’m in the middle of writing something, it won’t occur to him that I’m busy and he’ll go ahead and ask an in-depth question. I might start to answer, distractedly, and look up to see he’s annoyed with me. I’ll ask him ‘what’s the matter?’, and he’ll say, ‘I didn’t like your tone of voice – it sounded like you were angry’. I also have to think carefully about what I commit to, because if I give any suggestion that I might agree to something, it’s like locking in an answer – there’s no way out.

“There’s a lot of work I need to do for myself to manage through all of that as well. I bought myself a dog four years ago and I’ve trained him as an assistance dog for myself, through a qualified trainer. He’s marvellous for me. But, again, he can’t be left alone with Jacob. Because things happen, like we heard the dog whining in the back of the car with Jacob, and he said he was only petting him – I asked him to show me, and it was not a ‘pet’. Jacob was anxious and he has no idea how hard he’s patting – no sense of his power, his strength.

“Basically, with Jacob you think you’ve got on top of one thing when a new, more sinister thing appears that you need to start working on.

“It takes a lot of work – I’m not going to sugar-coat that, because it puts a lot of stress on relationships. My extended family don’t understand, or don’t want to. So, it’s difficult to keep that positivity going at times.

“So often people talk about their children having ‘meltdowns’, but for us that means holes in the walls, doors being kicked down, things constantly thrown at us. It’s in a different league. And that’s why I‘m really very pleased where we’re at now. I’m not going to say ‘hip hip hooray’ though, because I’m always wary that there’s something else around the corner – that’s how I’ve lived for I can’t remember how long.

“This has all taken its toll on my husband too. He tries to keep down a full-time job, plus more. It’s a lot. And going into adulthood there will need to be so much more management, because society expects that Jacob is going to drive, society expects that he’s going to drink, which would be detrimental to him, but we’re going to have to navigate all of these things in some way.

“We’re conscious of his future after we’ve gone, so we’ve made sure we got things straight so that everything will be fair between our boys and that there would be a system that Jacob would be cared for. But of course, how do you get someone to fill that role?

“We’ve prepared the best as we can for now, and when he’s 18, things will need to change again. If anything happens to both of us, it’s going to be hell. There’s no way of getting around that, apart from doing our best to regulate him now, and trying to get regulation to be a habit because it’s not like learning something, it’s more about it becoming a habit.

“We’re trying to prepare him for life, but he will need support. We’re just doing the best we can for now. And, unfortunately, accessing the NDIS hasn’t been the ‘solution’ we might have hoped.

“Recently, I felt like I got a pat on the head – ‘you’ve done a good job, but we’re going to take it from here’. Suddenly it was, we need to get this assessment done, that assessment done, get all the support workers in and everything. Well, we’ve gone through a few and each have to be trained specially to deal with Jacob.

“The thing is, I’m the best person to help Jacob, so we’re not looking for someone to take him off our hands. What we need is help with the other parts of life, so that we’re freed up to give him the one-on-one support he needs. So, like recently I asked about help with meal prep, and then that’s suddenly a whole thing that has to be justified and reviewed. They don’t want to support us so that we can care for him, they just want to take that part over.

“But we love Jacob and we just want him to be a part of our family. What we really need from the NDIS is to help us be the best family unit we can possibly be. Not ‘normal’ – we’re never going to be normal, but we want to be able to function as a family in our way.

“So as far as the NDIS I concerned, they need to really listen – because how are you going to know what people with disabilities actually need if you’re not listening to people with disabilities?”

To find out more about Fetal Alcohol Spectrum Disorder and access support, visit