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Standing Committee on Social Policy and Legal Affairs - 13/04/2012 - Foetal alcohol spectrum disorder

BOWEN, Mrs Yvette, Foster Carer, Barnardos Australia

HARTH, Ms Tracey, Foster Carer, Barnardos Australia

TAKLE, Ms Wendy, Foster Carer, Barnardos Australia

[12:12]

CHAIR: Would you like to tell us about your experiences with your foster children and some of the challenges that you have faced.

Mrs Bowen : We took this child on in July 2005. He was in our care for seven years. He was diagnosed with ADHD, separation anxiety and ODD, and was prescribed Ritalin. He had had a patchy history at school previously and had been through two schools by the time he was in second class. When he came to stay with us he was placed in one school and they got a bit tired of him so we put him into another local public school. They had an ED unit but that ED unit was unable to look after him. They did not have the resources or the education to know how to deal with him. He was a very overactive kind of child in terms of impulsivity, and increasingly that turned into becoming violent. He was placed in a private school after the ED unit, and that seemed to do the trick for about five years. Eventually, though, he was asked to leave because he was becoming violent with the other children in the school.

CHAIR: At what age?

Mrs Bowen : That would have been 12, I think.

CHAIR: So with puberty.

Mrs Bowen : Yes—sort of excess hormones. He started becoming quite violent, and they asked us to consider him being removed. They were very good about dealing with the child, and they did all that they could.

CHAIR: And after that?

Mrs Bowen : After that this aggression and violence became a bit too much, and it just kept on escalating. We tried to protect him and protect the other child in our care as much as we could, and we had just got to a point where we were having to call the police. He caused quite a lot of property damage, but also he had presented with some very challenging behaviours. There was a school camp where my husband, Matthew, was driving him back from that camp because he was becoming agitated, and he was assaulting my husband while they were travelling at 110 kilometres an hour in a car. He actually damaged the front windscreen of the car with his fist, so we are looking at fairly psychotic kinds of behaviour, and that psychosis became worse.

Ms Harth : My foster child is 12 years old and is a boy. We are his 16th full-time foster care placement. He has attended more than 20 schools. I cannot work due to the full-time high needs that he requires. My partner has to take a lot of time off work as well, including today so that I could be here and also for reasons relating to him. Almost all our time is consumed by him: learning about how to manage him, training courses and helping him from day to day. He struggles with the self-knowledge that he is not normal, even though he desperately wants to be normal. He is actually at an age of awareness at the moment. He does not have one friend in the whole world, because he lacks social skills and he has bad behaviour. He struggles with self-loathing for the relationships that he is constantly breaking, but he cannot stop the cycle of breaking them. He has started to self-harm, and he verbalises that he thinks he is a waste of oxygen. He has trouble with fine motor control, memory, retaining information and sequencing, and if you give him any more than two instructions at one time then he cannot follow them. He is very intelligent in some ways, but he is lacking in many areas—for instance, social skills, aggression and impulse control. His prospects of being a valued member of society in the future are very low. His future relationships are probably going to be volatile and dysfunctional, and he will probably have difficulty in finding and keeping employment due to his lack of social skills and his oppositional and defiant behaviours.

He, like Yvette's child, has been diagnosed with a multitude of different diagnoses. He also was diagnosed with ADHD, but it turns out he does not have that, which means that the medication he was on was making him aggressive. He probably is going to require ongoing assistance with health, financial and life skills support for his entire adult life, and we are not sure how he is going to get that. He currently has a support team of a caseworker, a youth worker, a paediatrician, a counselling psychologist, a psychiatrist, full-time foster carers and respite foster carers. He is not in school due to an expulsion for violent and threatening behaviour and we do not know how long this situation will last because there are no positions available in the foreseeable future in a school that is able to cope with his needs. This means that I am home-schooling him at the moment. I do not know how long that will be for. That is increasing his aggression and all the other behaviours that come along with that as well, which is putting a lot of pressure on the placement. His mother did abuse alcohol while pregnant.

CHAIR: As admitted or through health records?

Ms Harth : She has not admitted it, as far as I am aware, but it is due to other family members saying that she had. She also abused a lot of other substances while pregnant. For us a diagnosis of FASD would be hard to get because there were so many different things that were being abused at the time so he cannot be put into that small little box and he might be a bit wider on the spectrum.

Dr STONE: How old is he now, Tracey?

Ms Harth : He is 12½. Again, like Yvette's child he escalated upon hitting puberty.

CHAIR: Mrs Bowen was nodding throughout as if that were true.

Mrs Bowen : Very similar.

CHAIR: Yes. I thank you, Ms Harth. Ms Takle.

Ms Takle : I have three children through the foster care system. We adopted our two older boys and then we had placed with us a 2½-year-old who was diagnosed with FASD at 13 months. We got her last December. When we got her profile, one of the things that went through our minds was what was actually going to happen in the future for her. We had not actually met her at this stage. When we were presented with her she presented as nothing like the FASD profile that we were given. It was not until we got her home, quite literally, that reality sank in straight away. She settled in beautifully but she has two speeds. She is fast asleep or she is fast. She cannot settle at any one task be it eating, reading or singing. It is constant on-your-feet moving. She is impulsive. She is a delight but she has impulsive behaviour. I do not know what she is going to be like in 12 months, let alone when she is at puberty, god help her. It is a scary thing that there is not a lot of funding out there that we can access. With our two older boys, the middle one was born drug dependent—from his mother and his dad was drug and alcohol dependent. He has a whole list of diagnoses including autism and sensory deprivation. But because his mum has not come out and said what she abused we cannot get a diagnosis of that. He is disruptive. He is a cutey but he is disruptive. He is not violent.

CHAIR: How old is he?

Ms Takle : He is seven. I think that he is on the border line of so many different diagnoses that we cannot pigeonhole him into anything. He is just on the cusp of everything so that we cannot actually access any funding. As for education, my oldest one is now on his fifth school. He is a very tranquil, lovely little boy but I phoned every public primary school in New South Wales, the ACT, Victoria and New Zealand to find a school that could take my children. Every school I went armed with information on the children, with websites, and you can go with as much information as you can find, it is getting them to sit down and read the information. So the area where we are now, beautiful school, beautiful community, beautiful people. We moved there specifically to go to the school. Our children are accepted. There is a special needs unit there which my seven-year-old is in, and that is the school that my three-year-old will be going to as well. The little one has a facial features of a FADS child. She has the large forehead, the small jaw. She does not have the little thingy here. We have not started the occupational therapy or the speech yet and we are about to do that. She is about to start preschool as well. We are on the cusp of getting all that.

CHAIR: We just heard some pretty gripping evidence. Could you tell us about the positive things? I know you touched on their being a little joy and things like that. Would you like to talk about the positive experiences that they have brought to your life? All of you, I guess.

Mrs Bowen : For 98 per cent of the time this child was beautiful. He was lovely, he was loving, he was playful. It was just that other two per cent that was really very difficult to deal with.

CHAIR: Did you spend 100 per cent of the 98 per cent worrying about the two per cent?

Mrs Bowen : Absolutely. Because of the impulsiveness issues we could not leave him alone for a second with his smaller brother because the next thing you know he would have his hands around his throat. We could not leave pieces of chocolate around the house because they would not be there afterwards. If you had any sort of thing that he might desire, whether it be food or a mobile phone or whatever, you would have to secure it. We used to have to lock things away because otherwise either it would not be there or it would be broken and he would deny it.

CHAIR: He could not control that. I know I am asking about positive things, but is that a positive in that, rather than leaving your phone around or leaving chocolate around, you would change behaviour?

Mrs Bowen : We had to adapt around him in order to maintain some sanity.

Ms Harth : Our foster child is wonderful. He is funny, has a fantastic personality, is gentle natured. He cares about other people. He takes the weight of the world on his shoulders and he blames himself for everything; he takes all the responsibility. He spends a lot of time worrying about his problems but he is a lovely boy when he is not being affected by those issues.

Ms Takle : All three of them are a delight and they all have their own beautiful charm. Their sense of humour is amazing. They have this intense need to be loved. The innocence in their eyes is unspeakable. You look at them and you can forgive just about anything that they have done 30 seconds prior. All three of my children are non-sibling to each other and they have a very intense sibling type relationship with each other. You have the two little ones in particular quite literally killing each other, bashing and hitting. Then, in the blink of an eye it is: 'I love you, my sister. I love you, my brother.' We get the hugs. You get a lot of joy out of watching them. Seeing the development of their brain, of their growth, of their personality and of their confidence is incredibly gratifying, as is watching your child who has special needs performing in the school concert for the first time and knowing that every adult behind you is actually enjoying the performance of your child, not laughing at them.

Dr STONE: I just want to put on the record that I am in awe of your commitment as foster parents of children with special needs. I think we need to acknowledge that as a community and a society.

CHAIR: Hear, hear!

Dr STONE: It is just extraordinary the work that you do, that you volunteer to take on. You are learning so much, obviously, about how to look after these children and help them reach their potential. I am interested in the relationship with their biological parents. Some of you have contact; some do not. Is there any way that you are able to influence them; do you see that you have a role there? We had evidence of that from other foster parents in Northern Australia, up in northern Queensland. Have you ever said to the biological parents of your children, 'Make sure you don't drink with your next pregnancy,' if they do become pregnant again? Are you in any way also carers of the biological parents?

Ms Takle : I am, with my eldest son. The mum has married and has had three children to this other man and is basically doing okay. I have become like a foster mum to her. She was very young when she had my eldest. She rang me up when she got her drivers licence; she rings me when she falls pregnant. She keeps falling pregnant. We just found out—she rang up a couple of months ago—she is pregnant with her fifth child, and she is very excited. For the first time, I said, 'Well, we need to learn to keep our legs closed, because you cannot afford any more children.' I was quite nasty, actually.

CHAIR: What about alcohol consumption?

Ms Takle : With her, there was none, but I tend to mother her. We had a very volatile relationship over the middle child and then, with the little one, she actually opened up and disclosed that she had drunk alcohol.

Mr SYMON: I would just like to go back to what you were saying about the difficulty of placing the children in schools. In Victoria we have our regular schools, obviously, and we have special schools for kids with intellectual disabilities or physical disabilities. But, from what you have just described, there is this complete gap: those children will not fit into any of those systems. Do you have any suggestions in that area?

Ms Takle : Give more money to the agencies so that they can create their own schools.

Mr SYMON: For schools, particularly for—

Ms Takle : No, that is in a fantasy world. I do not know.

Mr SYMON: But, at the moment, whatever it is we are doing is not working. So I am asking you for suggestions, because no-one has cracked it yet.

Dr STONE: Is it just about having more resources and better education? Or would it be teachers?

Ms Takle : More resources and more education for the teachers on how to actually teach the children that have these diagnoses—not so much understanding the diagnosis but how to look at each, because two children might have autism or FASD but have different learning abilities. Each child will learn at a different pace. Each child needs to be taught separately, almost. There needs to be a deeper understanding of each individual child. I do not know whether there is a syllabus for teachers going through training, but perhaps there needs to be some information about actually dealing with children with these kinds of issues.

Mr SYMON: It sounds as if there is not even a standard definition in many cases so I suggest that there probably is not.

Ms Cox : I think also that the access to teachers' aides within the education department is an issue. Obviously class size plays a huge role and there are different class sizes everywhere, but for children like ours who have no special needs, many, many of them can function quite well in a mainstream class if they have some of those little tailored programs or opportunities to perhaps learn a little bit separately but still within the contained classroom. As I said, we have been asked to provide those resources to schools and we cannot possibly fund that for all our children. So really, extra funding to support the teachers is needed. I understand the position that they are in. They have a classroom of 25 to 30 children so it is really difficult when one or two of them are taking up an extra amount of time, but we need to put more supports for the teachers so that these children can be maintained in those classrooms and not made to feel different, which they are often made to feel.

CHAIR: As a former teacher, I would be interested in your thoughts on parents. Often where there are those two kids in the class, the 23 other parents will be talking about those naughty kids. I was wondering whether you could talk about your experience with other parents. Ms Takle, at the concert I think you touched on the idea that for once people were not laughing at your child. How would we go about educating parents and making sure that they understand FASD and the characteristics?

Mrs Bowen : I think it is very difficult to educate the other parents in the class without exposing your child to a label, 'They're a FASD or a foster child.' That is something that we try to protect them from as well as there is alienation in being identified as different. It is hard enough when they have got a different last name, let alone something like, 'Oh yeah, that child has this condition.' And while some people are very understanding about it and will try to help you, there are other ones who will use it against them.

Ms Harth : My boy was in a very supportive school, but I do not think that they really understood the depths of his problems.

CHAIR: They had an inkling he was a bit different but—

Ms Harth : They knew, but I think they did not really take on board what we were telling them. It took until they saw him having a violent outburst that all of a sudden their attitude was, 'Oh no, he is a danger to other children; we cannot have him here,' whereas for six months prior to that, we had all the support in the world. But in terms of other parents and the principals of schools, they also have an obligation to provide a safe environment for all the other children so they are really limited in what they can do. If your child is there running around chasing people with objects and assaulting people and bullying and assaulting teachers, that is not a safe learning environment for the rest of the school.

CHAIR: So their duty of care—

Ms Harth : It has to be there as well. Now we are looking for a school and it is going to have to be a special behavioural unit—but there are no places. I think that when people go to uni to study to be a teacher, there need to be more specialised areas for special needs so that you can actually become a special needs teacher and do a completely different program from the normal teaching degree.

Ms Cox : I think that one of the things we can do as an agency, and which we try to do now, is create that relationship at the very beginning with the school by giving the school as much information as is reasonable about the child, without exposing everything, so that they are fully informed. We encourage that open relationship with the school. We want them to be ringing us when little things start to happen so that it is not left to the end when suddenly there is a great big explosion. We want to work in collaboration. Sometimes we have those really good positive relationships with schools and other times it can be a little bit different. But certainly, that collaboration and the information right at the outset, and proper preparation and planning, just might make some of that difference.

CHAIR: Thank you very much for appearing before us. I echo what Dr Stone said, and particularly I take my hat off to foster parents. It is a noble profession and I am sure that there is a special place in heaven for you. We cannot guarantee that—

Dr STONE: There should be!

CHAIR: but thank you for taking the time to appear before us.

Resolved (on motion by Dr Stone):

That this committee authorises publication, including publication on the parliamentary database, of the transcript of the evidence given before it at public hearing this day.

Committee adjourned at 12 : 40