Supporting children and families affected by Fetal Alcohol Spectrum Disorders (FASD)

Transcription

1 Supporting children and families affected by Fetal Alcohol Spectrum Disorders (FASD) Vicki Russell, Sara McLean, Stewart McDougall Please note: The views expressed in this webinar are those of the presenters, and do not necessarily reflect those of the Australian Institute of Family Studies or the Australian Government.

2 What are Fetal Alcohol Spectrum Disorders? Alcohol has long been recognised as a teratogen- a substance that is capable of interfering with, and damaging the development of a fetus. Fetal Alcohol Spectrum Disorders (FASD) are the range of physical, cognitive and/or developmental symptoms that can be caused by prenatal exposure to alcohol. Often described as a hidden disability.

3 Primary characteristics Distinct facial features- but only present in a small portion of individuals with FASD Other physical changes Changes in brain functioning leading to difficulties in a range of cognitive domains: - Intellectual ability - Executive functioning - Language - Attention - Motor functioning - Memory and learning - Social cognition - Behavioural problems

4 Secondary characteristics Without appropriate intervention, children with FASD may be at increased risk of: Disrupted schooling Trouble with the law Alcohol and drug problems Involvement with child protection/welfare

5 Prevalence of FASD An accurate prevalence rate for FASD in Australia in not known. Estimates range between 2-5% in the United States and Western Europe. Suspected at risk populations include: Out of home care Youth offending and justice programs

6 FASD and child protection Alcohol consumption central to child protection notifications. Reflects parental issues and coping, social, economic and cultural issues. Represents the perfect storm of risk factors for placement instability for children entering care.

7 FASD and out of home care Affects significant proportion of children in care. Clues: Instability and foster parent stress, persistent pattern of behaviour and resistance to conventional parenting approaches. Recognition, prevention, diagnosis and responses in child protection and out of home care developing.

8 FASD and out of home care Significance of supporting foster carers in children s lives, the critical importance of stability. Important considerations in supporting foster carers. What do foster carers say on this issue? Accurate history Understanding and communicating, all players on same page Facilitating stability moving child is not the solution Valued member of the team Resources and knowledge

9 FASD and out of home care A recent study with foster carers (McLean & Scholten, in prep): Highlighted multiple diagnoses, sensory issues, sleep issues, patchy developmental profiles, impulsivity and anxiety. Importance of adjusting expectations, commitment and going along for the ride. You know, you can t be in the station of the rollercoaster ride and watch him ride, you ve got to get in the car and ride with him.

10 FASD and out of home care Common understanding, collaboration with caregivers. Sometimes you get teachers or professionals that don t get it, I say to them think about how hard it is for you to like change your diet or exercise or whatever and I say now try doing that without having the executive functioning control and you ll see what it s like This guy is like a superhero, the fact that he can ever do anything. I m so scared of the future for her because I think if she can t learn to control her temper, which I don t think she ll be able to, she s going to be ostracised in society and end up in prison.

11 FASD and out of home care Provide a service that is more suited to brainbased barriers to inclusion. and they wanted me to go to a parenting course, I said I want specific strategies to manage my daughter s behaviour. I don t need a parenting course. The common sense sort of parenting that we grew up with and your behavioural-based parenting, it just it just doesn t work

12 FASD and out of home care Structured, modified and supervised environment. I think routine and structure; we realised quickly it was the way that she feels safest and least chaoss-ed - which is her word. Her world is chaos- its what she feels a lot of the time. That s how she describes the feeling in her brain, just chaos. With these guys you have to think about, you know, with your typical children you don t really think about the fluorescent lights or the humming of the dishwasher or those kinds of things But with these guys, any of that, any of that kind of stuff can really just mess with their little heads.

13 FASD and out of home care Reframing behaviour the child won t or the child can t? It s hard to remember when you re in the midst of all of this going on that the reason they re acting this way is because of the damage that s been done It s not because they re maliciously wanting to knock your brains out. You know I just stopped, stood back and looked at her, saying, you know, What am I not giving you? What are you not getting?

14 FASD and out of home care Skills need to be taught explicitly. When you plant a lettuce, if it does not grow well you do not blame the lettuce. Thich Nhat Hahn

15 The logic Behaviours are usually the only symptoms FA/NB is an invisible physical disability with behavioral symptoms Therefore: recognize and provide accommodations, the same as for any other physical condition

16 Primary characteristics Developmental level of functioning Sensory systems Nutrition Language and communication Processing pace: How fast the brain works Learning and memory Abstract thinking Executive functioning Strengths

17 Strengths Creative Artistic Musical Mechanical Athletic Hard-working Determined Persistent Willing

18 Secondary characteristics Secondary defensive behaviors develop over time when there is a poor fit between individual and environment Defensive behaviors are normal reactions to pain and are preventable Adapted from: Ann Streissguth, 1996

19 Paradigm: A way of seeing Paradigm shift: Seeing differently I get it she has the disability. We have to do the changing. Source: Parent of child with FASD

20 Principles of the Fetal Alcohol/Neurobehavioural approach 1. Can t rather than won t 2. Developmental age is considered rather than chronological age shifts our expectations 3. Realistic expectations and environmental and social accommodations/strategies

21 Observations What do I notice/did notice in the environment: What did I see? What happened just before? Were there other factors - e.g. unexpected change? Sensory - extraneous noise, lighting, smell What was my body language? Movement People present/not present Items in the room clutter, moved, removed or new Is there a persistent pattern have I noticed this before?

22 Uneven development Actual age of person Developmental age Strengths (art, sports) Expressive language Receptive language----3 Reading Comprehension

23 Visual learner Information processing is slower Needs external support Difficulty organising Concrete thinker Social skills Transition Sequencing Structure and routine Consider developmental age Use picture sentences to sequence events Single instructions/re-teach Work quietly create a workspace in the same room but with a barrier Ongoing supervision Snack more often Prepare with back up for unexpected change Time a paper chain for changing activities Simple games with simple rules Marked out space table, floor, desk

24 Application: Functional Neurobehavioral Assessment [FASCETS ] Setting: Primary school Age: _8_ Developmental age: _4_ Task or Expectation Take turns in play Transition Finish your meal Brain has to Be age appropriate Understand and apply rules Cognitive flexibility Connect stages of daily routine Primary symptoms FA/NB Dysmaturity Memory impairment Read social cues Slow processing pace Perseverative Needs to finish tasks Hunger not recognized Disconnect eating with school or sleep to follow Devel. Age (estimate) Secondary behaviors 3 Temper tantrums 2 Big temper tantrums, resistance 3 Confusion, frustration, shut down, tears Strengths Willing to please Determined Helpful Strategies Is the game appropriate given developmental age? Photo of previous occasion Does it require parental participation? Adjust schedule and space of activity Give time to finish, forewarn. Use paper chain for time Small servings, more often Separate bowls Help to eat Involve in food preparation

25 Review strategies Stop fighting for change. Ask: What if? Think younger Give time Recognize strengths Slow down speech use less words Be directive, say what you mean Use visual supports hand signs, simple drawings or photographs Don t give too many choices Re-teach, remind on a regular basis

26 Summary FASD is a very complex public health issue for carers, children and the services and systems designed to support them. Addressing the challenges faced by children and their caregivers requires a shift in thinking Caregivers need to be supported to guide the children affected by FASD- and themselves- safely through the perfect storm in their lives

27 National Organisation for Fetal Alcohol Spectrum Disorders Vicki Russell postal: PO Box 448, Wynyard TAS 7321 telephone: website: ABN : Patron: Her Excellency Dame Quentin Bryce Dr Sara McLean sara.mclean@unisa.edu.au

28 Supporting children and families affected by Fetal Alcohol Spectrum Disorders (FASD) Vicki Russell, Sara McLean, Stewart McDouga Please note: The views expressed in this webinar are those of the presenters, and do not necessarily reflect those of the Australian Institute of Family Studies or the Australian Government.

29 What are Fetal Alcohol Spectrum Disorders? Alcohol has long been recognised as a teratogen- a substance that is capable of interfering with, and damaging the development of a fetus. Fetal Alcohol Spectrum Disorders (FASD) are the range of physical, cognitive and/or developmental symptoms that can be caused by prenatal exposure to alcohol. Often described as a hidden disability.

30 Primary characteristics Distinct facial features- but only present in a small portion of individuals with FASD Other physical changes Changes in brain functioning leading to difficulties in a range of cognitive domains: - Intellectual ability - Executive functioning - Language - Attention - Motor functioning - Memory and learning - Social cognition - Behavioural problems

31 Secondary characteristics Without appropriate intervention, children with FASD may be at increased risk of: Disrupted schooling Trouble with the law Alcohol and drug problems Involvement with child protection/welfare

32 Prevalence of FASD An accurate prevalence rate for FASD in Australia in not known. Estimates range between 2-5% in the United States and Western Europe. Suspected at risk populations include: Out of home care Youth offending and justice programs

33 FASD and child protection Alcohol consumption central to child protection notifications. Reflects parental issues and coping, social, economic and cultural issues. Represents the perfect storm of risk factors for placement instability for children entering care.

34 FASD and out of home care Affects significant proportion of children in care. Clues: Instability and foster parent stress, persistent pattern of behaviour and resistance to conventional parenting approaches. Recognition, prevention, diagnosis and responses in child protection and out of home care developing.

35 FASD and out of home care Significance of supporting foster carers in children s lives, the critical importance of stability. Important considerations in supporting foster carers. What do foster carers say on this issue? Accurate history Understanding and communicating, all players on same page Facilitating stability moving child is not the solution Valued member of the team Resources and knowledge

36 FASD and out of home care A recent study with foster carers (McLean & Scholten, in prep): Highlighted multiple diagnoses, sensory issues, sleep issues, patchy developmental profiles, impulsivity and anxiety. Importance of adjusting expectations, commitment and going along for the ride. You know, you can t be in the station of the rollercoaster ride and watch him ride, you ve got to get in the car and ride with him.

37 FASD and out of home care Common understanding, collaboration with caregivers. Sometimes you get teachers or professionals that don t get it, I say to them think about how hard it is for you to like change your diet or exercise or whatever and I say now try doing that without having the executive functioning control and you ll see what it s like This guy is like a superhero, the fact that he can ever do anything. I m so scared of the future for her because I think if she can t learn to control her temper, which I don t think she ll be able to, she s going to be ostracised in society and end up in prison.

38 FASD and out of home care Provide a service that is more suited to brainbased barriers to inclusion. and they wanted me to go to a parenting course, I said I want specific strategies to manage my daughter s behaviour. I don t need a parenting course. The common sense sort of parenting that we grew up with and your behavioural-based parenting, it just it just doesn t work

39 FASD and out of home care Structured, modified and supervised environment. I think routine and structure; we realised quickly it was the way that she feels safest and least chaoss-ed - which is her word. Her world is chaos- its what she feels a lot of the time. That s how she describes the feeling in her brain, just chaos. With these guys you have to think about, you know, with your typical children you don t really think about the fluorescent lights or the humming of the dishwasher or those kinds of things But with these guys, any of that, any of that kind of stuff can really just mess with their little heads.

40 FASD and out of home care Reframing behaviour the child won t or the child can t? It s hard to remember when you re in the midst of all of this going on that the reason they re acting this way is because of the damage that s been done It s not because they re maliciously wanting to knock your brains out. You know I just stopped, stood back and looked at her, saying, you know, What am I not giving you? What are you not getting?

41 FASD and out of home care Skills need to be taught explicitly. When you plant a lettuce, if it does not grow well you do not blame the lettuce. Thich Nhat Hahn

42 The logic Behaviours are usually the only symptoms FA/NB is an invisible physical disability with behavioral symptoms Therefore: recognize and provide accommodations, the same as for any other physical condition

43 Primary characteristics Developmental level of functioning Sensory systems Nutrition Language and communication Processing pace: How fast the brain works Learning and memory Abstract thinking Executive functioning Strengths

44 Strengths Creative Artistic Musical Mechanical Athletic Hard-working Determined Persistent Willing

45 Secondary characteristics Secondary defensive behaviors develop over time when there is a poor fit between individual and environment Defensive behaviors are normal reactions to pain and are preventable Adapted from: Ann Streissguth, 1996

46 Paradigm: A way of seeing Paradigm shift: Seeing differently I get it she has the disability. We have to do the changing. Source: Parent of child with FASD

47 Principles of the Fetal Alcohol/Neurobehavioural approach 1. Can t rather than won t 2. Developmental age is considered rather than chronological age shifts our expectations 3. Realistic expectations and environmental and social accommodations/strategies

48 Observations What do I notice/did notice in the environment: What did I see? What happened just before? Were there other factors - e.g. unexpected change? Sensory - extraneous noise, lighting, smell What was my body language? Movement People present/not present Items in the room clutter, moved, removed or new Is there a persistent pattern have I noticed this before?

49 Uneven development Actual age of person Developmental age Strengths (art, sports) Expressive language Receptive language----3 Reading Comprehension

50 Visual learner Information processing is slower Needs external support Difficulty organising Concrete thinker Social skills Transition Sequencing Structure and routine Consider developmental age Use picture sentences to sequence events Single instructions/re-teach Work quietly create a workspace in the same room but with a barrier Ongoing supervision Snack more often Prepare with back up for unexpected change Time a paper chain for changing activities Simple games with simple rules Marked out space table, floor, desk

51 Application: Functional Neurobehavioral Assessment [FASCETS ] Setting: Primary school Age: _8_ Developmental age: _4_ Task or Expectation Take turns in play Transition Finish your meal Brain has to Be age appropriate Understand and apply rules Cognitive flexibility Connect stages of daily routine Primary symptoms FA/NB Dysmaturity Memory impairment Read social cues Slow processing pace Perseverative Needs to finish tasks Hunger not recognized Disconnect eating with school or sleep to follow Devel. Age (estimate) Secondary behaviors 3 Temper tantrums 2 Big temper tantrums, resistance 3 Confusion, frustration, shut down, tears Strengths Willing to please Determined Helpful Strategies Is the game appropriate given developmental age? Photo of previous occasion Does it require parental participation? Adjust schedule and space of activity Give time to finish, forewarn. Use paper chain for time Small servings, more often Separate bowls Help to eat Involve in food preparation

52 Review strategies Stop fighting for change. Ask: What if? Think younger Give time Recognize strengths Slow down speech use less words Be directive, say what you mean Use visual supports hand signs, simple drawings or photographs Don t give too many choices Re-teach, remind on a regular basis

53 Summary FASD is a very complex public health issue for carers, children and the services and systems designed to support them. Addressing the challenges faced by children and their caregivers requires a shift in thinking Caregivers need to be supported to guide the children affected by FASD- and themselves- safely through the perfect storm in their lives

54 National Organisation for Fetal Alcohol Spectrum Disorders Vicki Russell postal: PO Box 448, Wynyard TAS 7321 telephone: website: ABN : Patron: Her Excellency Dame Quentin Bryce Dr Sara McLean sara.mclean@unisa.edu.au