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Parent Panel: Voices of parents and carers for health professionals - How can we help each other?

Dr James Lush, MC:

Okay, we're going to go into our panel discussion pretty briefly.

I'm just going to introduce you to Sophie Harrington from NOFASD who will introduce everyone on the panel in the interest of saving time.

So Sophie, please make her welcome.

And there she's going to take charge of this.

Thank you.

[audience clapping]

Sophie Harrington, Chief Operating Officer of NOFASD:

Good afternoon, everybody.

We'll be as quick as we can, but this is a very important part of the, the sector today as well because we're going to be hearing from parents and carers.

So my name is Sophie Harrington, I work for the National Organisation of Fetal Alcohol Spectrum Disorders for Australia. We're the national peak body for parents and carers in the country.

So today we have some wonderful people who have volunteered, I'll say that word loosely, volunteered their time to be here today. We have Christine down at the end. We have Neil, Cheryl, April and Neroli, and because of time constraints, we’re actually going to ask them just very direct questions and ask them to respond with their experiences to those, to you today.

So my first question to the panel and to each of you is starting with Neroli. If you could just briefly outline your journey with FASD to date. Bear in mind Neroli has got about two minutes to do that.


My journey started when I had volunteered to start an after school care in a local church. The police had said there was too many children running around the streets. So I did that and met up with a young five-year-old who decided he wanted a new mum. So that brought me into fostering.

20 plus years have gone by and I'm still part of caring for all the kids.

But my journey with the Fetal Alcohol came when I had a little lad of six who was diagnosed at birth and he had the facial features. So he was one of the lucky ones.

It came then that I decided I had to help these children because I recognised - and I had over 100 odd children foster children through my home - and many of them had what I believed was Fetal Alcohol.

So that was when I decided I had to find some information. I couldn't find any doctors or anyone to help me. I called Alberta, who told me about Sue Miers. And that was good, that gave me some insight on help in Australia.

Then the major frustrations came was trying to convince the professionals that my diagnosing of FASD was actually, you know that somebody else had to come on board because I was- I had no medical reasons to to tell them what, what they had. But I believed I was right.

My targets became doctors, teachers, Centrelink, job providers, police, anybody that touched the lives of any of my children because they were all my children.

And so I spent a lot of time Googling, but Alberta the people in Alberta were really good and very helpful.

The doctors didn't listen to me or believe my diagnosing. And it was about that time when Sue came on board and I also met up with Dr. Doug Shelton, who listened to my story and actively came on board along with Shelley Hastings.

And my journey then became a little less concerning than I- because I thought it would never happen in my time.

But as I look at it, Sue and Doug and Shelly Hastings has been my saviour and the children's because now we're all here today actively helping to help the children that have had nobody there to support them and we must do that. It's mandate that we help these children because they've only got us.

And I can see a lot of us around here that are obviously here for the right reason. And I'm really pleased. And I publicly thank the three that have got me to this stage.

Sophie Harrington:

Thank you Neroli.

That's beautiful.

[audience clapping]

April, over to you, please.


I've been a relative foster carer now for about 17 years and I've had the care of two of my nieces and two of my sister's grandchildren. A boy and a girl who I've had since they were very young babies. And my young man is the child that has FASD.

Our journey I think, I'd probably say started when he was in kindergarten because he started displaying a whole range of issues. And there were lots and lots of concerns, started off with a lot of hearing problems and developmental issues but it wasn't until 2014 that he was actually diagnosed with FASD.

And I think I'm very lucky because he is under guardianship. So there are a range of processes that occur when you take on children that you go through and he was having his baseline medical assessments and with all the issues that we'd had over time, this provided the really valuable history that helped make that diagnosis. And the fact that his mother had admitted to drinking and taking a whole range of other illicit substances.

Once the diagnosis occurred, I found that it was very difficult to find people that would then be able to support us. So I'm still on that journey where we're struggling to get the right sort of supports for our family because it's not just him, it's me. And it's the others in the family that are affected by our situations.

He was diagnosed when he was eight years old. He's now 13 going into high school next year. He's got language disability, significant behaviours, he's very aggressive and violent. He has very low functioning, anxiety, sensory processing, hearing issues, ADHD, ODD, and he's medicated with two anti-psychotics and sleeping medication. This whole process just took so long.

And I think that's one of the real issues around this situation. As time goes on things are becoming more and more challenging. The aggression and violence is increasing significantly and the impact on his sibling and the other members of my family is very challenging.


April, thank you. I'm just going to stop you there.

Thank you for sharing.

[audience clapping]


Hi, I'm the parent of a boy who is 13 years old.

We saw very early on some behavioural problems and language problems and some developmental problems. I've worked with children in early childhood situations, and I just knew that there was something different but couldn't put my finger on it.

We followed through with professionals and we ended up getting an ASD diagnosis but we knew that there was more, so we then followed through with talking to more professionals and we've just told them there's something different. We just urge you to just keep following through.

There was nothing that actually sprung out at me and say, well this is FASD. We knew that there'd been alcohol exposure but we didn't actually know what alcohol exposure meant. That information hadn't been provided to us either.

So it was, where do we go? What do we do? How do we do it? So we were just going out like being in space and trying to find an answer that we didn't know what it was or where we would find it.

It was only by chance that someone who had been on a train with my son and I and had witnessed his behaviours, saw me in the street and told me about a program that was on SBS.

And she said, "I don't need to know about your history or anything or your son's history but I urge you to watch his program." And that program had Neroli on it. I could only watch it for five minutes, it was very, very confronting. I was really scared about what the future would hold for us as a family and for our son, so I did end up going back and watching the rest of it. I researched more, went to a professional and I was told, no, he doesn't have it cause he doesn't have facial features.

So I went away feeling very, very down again. What are we faced with? We don't know where to go, what to do. So I researched again and found out about this other thing called FASD. So we went back and we questioned that.

And we were told, "well yes, actually, that is what it is." So we were told just to treat it like autism which my advice to anyone is no, that's not the way to do it because if you think things can't get any worse, well, they can. And we've got holes in walls and lots of other things in our house to prove that.

So we then went away on a holiday and on that holiday things became so traumatic for us in trying to keep our son safe. His behaviours escalated.

I made a phone call to NOFASD Australia to their helpline. And that was the best thing that I've ever done. It was a lifeline. From there we discussed about what further supports could we get into place. We needed more information. So we travelled from Victoria over to Perth to get a diagnosis, a further diagnosis with further reports which have just been fantastic. From there, it helped us to move forward a little bit and to set up some plans for our son. We're working to keep him out of the criminal system. That's my biggest fear.

We work on strengths, planning for him for the future. We appreciate all the support of great people around us which we are really, really lucky to have. It's also going into acceptance of who he is.

My head tells me that this is how it's always going to be but my heart actually says, well, I really want to see if there's something else that I can do. And that's the struggle. There's, I like to think of hope but I'm also scared to think of hope too but we'll always just advocate for him and support him always.

Thank you.


Thank you, Cheryl.

[audience clapping]


Hi there. My name's Neil Reynolds.

I'm privileged to be the dad of two beautiful FASD children.

We've been on the journey now for six and a half years when our little boy came to us straight out of hospital.

We tell a different story.

We have had great support from the local hospital, from Telethon, NOFASD, we knew straightaway he had FASD, there was never any question about it. And we were given support - perhaps I'm a very convincing person at times. And I wasn't going to take no from anybody.

And so consequently, the journey for him has been about support from day one. His sister came to us because of that placement about a year later. She's now been with us for four and a half years.

It was tough. She's done it very hard. She didn't have the support originally but she's making great inroads.

And we tell the story there is hope. They've made amazing inroads in where they can be. And we have great visions for where they're going to. It's a very high mountain, but we're walking it together.

[audience clapping]


Thank you, Neil.



My story is different again.

I was working up as a teacher in the Northern Territory at a very remote community. The family next door, which we became very close to had three siblings who had been removed from their family and were living with an aunty. We became particularly attached to- I should say, the little girl became particularly attached to us.

And after returning to Melbourne we knew we needed to do something to help her and suggested with great support from the family and the community that she comes down and goes to school with me.

So she came to Melbourne, and of course behaviour issues were huge. All sorts of things. I of course put it down to early childhood trauma which had been severe. I put it down to the fact she'd never left her community, never worn shoes, facing the shopping centre was terrifying. All the sensory processing issues became paramount in sorting her anxiety. I just thought it was all early childhood trauma.

But I was sitting with her one night teaching her how to tell the time, I knew she had mastered that skill. But the next morning there was nothing there. And as a teacher I thought there's something else going on here. This is not just trauma.

And that was my eye-opening experience where I suddenly thought we've got to start looking into FASD. I knew very little with all my teacher training, I had never been taught about FASD. I did lots and lots of research, came across NOFASD who supported me and we're on a wonderful journey now.

She's spent some time in her community and a lot of time living with us. She's 13, she's at school in Melbourne and doing extremely well.

We changed, from the moment we realised what was going on, everything we did, the way we interacted with her, the way we expected our family and friends to interact with her, we met her at her level. We stopped our expectations of her transforming into a perfect child.

And we just loved her for who she was and that has been really - I agree with you, Neil - a success and she'll always have problems, but we'll be there for her.

[audience clapping]


Thanks Christine.

So thank you to all of our panellists for being so open and vulnerable and to share their journeys with us today. And I know some of the personal journeys behind those stories and they can go for a lot, lot longer than the, the pure brief insight we've had today.

In the interest of time, I'll just ask this question to the whole panel. And just if a couple of you would be able to answer with a response.

What advice on FASD would you give a graduating group of university students who are now qualified to work in the community sector? What would be the burning pieces of advice you might like to share?


I think the critical thing for for all clinicians is listen to the parents. They're the ones that are doing the day-to-day hard yards. Most of them have looked hard and long in to why the situation has occurred. So as a clinician, listen to them, understand what they're going through and look to help.


What I would actually suggest is about building a relationship. So that means a relationship of respect from both the professional to the carer and also the carer to the professional so that you are working together as a team, and be prepared to think outside the box, do the research.

You may actually have to help that professional to guide them in different areas of where they can get that information. And that's okay.

And the professional can then just take that on board not to feel that the parent is actually trying to tell them what to do but just to respect that, you know, this this parent really, really cares for this child and I'm going to do the best for them. Yeah.


Lovely. Thanks Cheryl.

So we've got one individual question for each of the panellists.

So for Neroli, if I can start with you first, when describing FASD many parents might say, "Oh that sounds like a typical child or a teenager thing." Things like, you know, forgetting to brush their teeth, not tidying their room, poor memory. What makes FASD different?


Well, it's yes to all of that. FASD children appear to be like a typical child or teenager but in reality, they're not. They can grasp a concept one moment and go you go back to it and they've totally forgotten what they have agreed. By next day, same thing that, you know, it's an on again, off again situation where they just forget.

We need to shift our thinking from the child as being a bad child because the children need our support and help. And if we provide structure and routine to reduce the anxieties, and avoid sensory overload by maintaining a low stress environment, children with FASD really want to please, but sadly, most of the time they just can't. So it's FASD is not a walk in the park, it's hard yakka. And I challenge anybody that says differently, we could give you a couple of kids to look after for a little while, and I think you'd understand what all these carers are going through.


Thanks Neroli, that's great. Thank you.

April, what changes have you had to make to your house?


I actually started looking at all the things that were needed to support my young man. So I had to limit the number of clothing items that he had in his built-in robe that I had to put into my home. I had also to limit the colour choices that he had to choose every day. The patterns on t-shirts. It's so hard to find t-shirts that are just plain so that the choice is much easier. He was wearing his school uniforms quite often. So all of that stuff just goes into one drawer and he can just get everything that he needs for the day.

I painted my home in very calming colours such as dark greys, lighter greys and a little bit of white so that every space in the home was calming, but not cluttered. So you limit paintings and stuff like that. And his room was decluttered quite a lot as well so that he can navigate very easily.

Consider noise levels. I have to limit the amount of family and friends that come to visit. And with Aboriginal families you've got such a big extended family. You know, I've got five kids, four kids myself and six grandkids. So it's really, really hard because he just can't cope with a lot of that.

I've had to recently look at replacing his bedroom door because he's just disintegrated it. He's chopped it up. So I've had to take the whole door off the frame quoting $550 to replace a solid door. This is what I'm going to have to get, a solid wooden door.

Lockable metal cupboards so that there are my father’s woodwork tools that I put away, such as the axe, which he used to disintegrate the door in my shed. Cleaning products, all lockable cupboards.

So those are just some of the small things that I've had to do.


Thanks April. Thank you.

And Cheryl, I believe you must keep all of your electronics locked away and other items such as food under lock and key. Can you tell us why?


Electronics have a direct impact on our son and his behaviour. It seems to do something directly to his brain. So we actually need to have them locked away. We did have a situation where he got access to a telephone and it was during the night. We knew that there was something really, really bad happening because his behaviour was extreme. And once my husband got his telephone bill of about $500 we realised and went back and tracked it. That he'd been up during the night for about six hours playing online games.

So it, it does happen.

And the reason being is that it's like an urge. He can't control it. He knows he's not to have it. He knows he's not to do these things but he just cannot physically control that urge.

We have locks on our pantry, on our fridge, on everything. Our son also reacts to preservatives and different types of foods. So we need to take away that impulse from him to actually go and get those things. He will still try and break into cupboards when he's in an extreme state but doing these things actually reduces his anxiety which then helps his behaviours. That doesn't just happen overnight.

But it's part of the whole big plan in helping to reduce these behaviours.


Thank you, Cheryl.

You're very good at timing guys, by the way.

Neil, for yourself, we've talked about this, but your daughter was to be expelled from school. Can you tell us why, and what happened?


After my 36 or so visits and about 18 school days, the principal rang me and said, "We've never had a child like this ever at the school. Can you please remove her.”

When I got to school, the teacher was sitting outside on the floor, head and hands crying. I went in the classroom, my daughter's tipping desks over the kids are running around screaming, three teachers’ aides all sitting in various corners hiding basically, looking at their computers, pretending it wasn't happening, but it was the changing point in her education life because I went back up to the principal and said, "Well, you as a person and the school in general needs to harden up 'cause this behaviour isn't happening at home. You have to learn. You have to listen. You have to implement lots of different various things that are going to help this child learn. You have to change the way you think."

And the end of the story is that the next teacher did. And now that child sits in the classroom, is fully engaged in learning, is catching up on the two years that she didn't get from that school and is just a very ordinary student sitting in the class.


Thanks Neil.

And Christine, for the final question: how do you manage anxiety and prevent minor issues with your young person developing into major meltdowns?


It takes time and it takes knowledge. And I think you have to know your child so well. You have to really be one step ahead, really focused on their behaviour and know that their little signs that - in our case, it's a lot of sensory things, touching things, rolling on the floor, lots of rubbing soap.

Straightaway, that's going to be leading into some sort of anxiety behaviour.

When anxiety does get out of control, like the time we were in the hotel and she was under the table making strange noises and my little tiny grandchildren are sitting there perfectly behaved.

I just crawled under and very softly said, "it’s time for us to go, hold my hand and we'll walk out together" and just keeping calm yourself but being one step ahead, that's how we manage it.

And just looking for those signs that you know are unique to your child. Every one of them is different so just being on top of it.


Thank you, Christine.

We're actually out of time, unfortunately. I don't know if we have time for one question.

I'm looking at Neroli.

Okay. So we can take one question.

Yes, lady over here.

[a lady speaking inaudibly]

Would anybody like to answer that question? So can I just repeat the question? Let me just confirm… [lady speaking inaudibly] Okay.

All right. Thank you. So has there been any medication that's been used that you've found that's helped?


Well, like all the situations is they want to medicate the children, that's the first move that they all make. And we were put in that position and we said, no. We had to get their behaviour under control. Otherwise we don't really understand what the medication did. And after our daughter wrecked the school, that was the first thing they wanted to do. We said, now we want to see if the teachers' implementations make a difference. We waited 18 months - or probably 12 months really cause it was the start of the next year - but at the end of that school year her behaviour was perfect, but learning was a problem. So we've done a trial on very small doses of ritalin and that has helped her learning but it hasn't had any effect on her behaviour cause it was already under control, but like all those things it's trial and error.

Every child is different and every child reacts differently to the medicines. And a lot of the end results of those medicines for her younger brother, for instance, can never have it.

Never, so, but it’s certainly not the first option, but it's not one that you shouldn't consider, just consider carefully.


Sadly, we haven't had a lot of success with medications. Sometimes it's had a little bit of improvement for short amount of time, but then our son seems to go into overload with the medication and it makes him worse.

It would be nice if there was something - when you're faced with really intense behaviours, then safety is number one but we haven't as yet found anything.

And you do have, I agree with Neil, you have to think of the side effects and that as well, it's a really, really hard call, but we haven't found anything that works.


Okay. Thank you. Thank you for your question.

Can we all put our hands together for these wonderful parents and carers? Thank you.

[audience clapping]