Life in the FASD

Lane

Presented by Tracey Jongens September 20 2012 Contact details mtna@clear.net.nz

Quote ““Living in a stable and nurturent home”

indeed turned out to be the most powerful

protective factor

in the lives of adolescents and adults with

FAS/E in Ann Streissguth’s research.” (as quoted in Fantastic Antone Grows Up, p 8)

Living with FASD changes to brain structure mean

• strengths in specific areas that make his needs invisible

• specific learning difficulties especially in academic subjects requiring processing information and abstract thinking

• memory challenges – particularly associated with working memory

• concrete thinker – does not get subtleties or grey areas. Is not a flexible thinker

• generalising learning – when you change an aspect of the routine it becomes a NEW routine

• finds decision making difficult / cause and effect thinking – cannot understand what he has not experienced.

behavioural affects

• short fuse - easily frustrated, RAGE.

• tires quickly – school day, social interactions

• does not like change – needs structured routines

• perseveration

• lies/confabulation - never ask WHY?

• lacks cognitive maturity – acts younger than he is

Coping with FASD

• Up skilling ourselves

• Scaffolding Andrei

• ADVOCATING

• EXTERNAL BRAIN

• Celebrating Success

Whatever it is!

Specific Strategies

At Home • increase the boundaries – continue to encourage dependence

• teach specific behaviour – use visual prompts

• teach social skills in a deliberate way

• closely monitor everything he does and who he is with

• be available

• give him the words

• ‘unpack’ negative situations and teach ‘next time’ techniques

• ensure HOME is a safe environment and let him be himself

• build on his strengths, foster these skills

• provide the scaffolding in order to keep him safe and well

Specific Strategies

Outside of Home • advocate for him everywhere applicable

• support him with homework

• keep the boundaries in place as much as possible – set times to be home, ensure you have contact

• ensure key people also understand and can support you as well as him

• be available

• know the people he is with

• step in before things get out of hand

• seek out schools etc who will work with you

• provide the structure that he cannot

• know what is ahead if possible and support him before it happens

• ensure he understands what others mean

Our Belief “Whilst we need to be as aware as possible of the

constraints of FASD, we must not be limited by

these.”

Important for caregivers to have support, and to

have ongoing opportunities to grieve.

Trying differently, Shifting paradigms.

Where to next?

When appearances and actions don’t match

Typical Skill Development Age Equivalent

5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20

Physical Maturity

Expressive Language

Comprehension

Money & Time Concepts

Emotional Maturity

Reading Ability

Social Skills

Living Skills

Source: Malbin, 1994

Age in Years

Schooling Issues

• academic learning difficulties – don’t know what they don’t know

• memory – only remembers part of instruction/ part of explanation

• language – talk better than understand

• cognitive functioning – executive functioning, cannot transfer learning

• behavioural regulation - mood swings, rages

• adaptive skills - immature social skills

Can lead onto to secondary disabilities • discrepancy between expectation and performance

• gets ‘blamed’, manipulated

• Also means talents and strengths

Things That Don’t Work

• Expectation to manage self

• Star charts

• Time Out

• Losing privileges

• Bribes

• Rewards

• Natural Consequences

• Easing up on structure and supervision

• Punishment

‘Incredible Years’ Speak

In IY speak they talk about ‘hard wax’ children ....

Children with FASD may well be viewed as ‘hard wax’ but

when you cut through the wax, inside they have

‘swiss cheese’ brains.

Some Issues Families Living with FASD Face

caregivers being disbelieved •At school - particularly @ secondary school level •Managing others’ expectation of child reaching ‘Independence’ •Being sent on ‘Parenting’ courses •‘Fix the parents’ approach •He/she will ‘catch up’ •It’s just a ‘boy thing’ •Experts not ‘getting it’ (FASD) •Dealing with black & white thinking - sometimes ‘white is black’

with the child/adolescent •Reaching a cognitive plateau – pressure – acting out •May be okay academically – socially / emotionally impaired •Risk from bullying •Risk for suicide thoughts and actions •Hidden agenda of other kids - manipulation to provoke a reaction •Keeping safe - easily lead •Showing emotion - or not •Affecting other children’s education •Rage •Destructive behaviour – property mainly •Can be viewed as lazy lying stealing •Fatigue & sleep issues

Cont’d systems & services •IQ - arbitrary cut off for assistance •School curriculum teaches self management – doesn’t work well for FASD •Child improves = remove aid = penalised for success •No post adoption support •Having a focus on worst in order to find support •Have to convince “respite” needed •Sent to “trade-me” to find respite carers

strategies •Give positive day to day life experience course cause school doesn’t •Pick your battles •Finding buddies - supporters •Build on strengths •Fit the child not the system •Trial & error approach needed •Not one size fits all •Medication - may work or make worse •Working out what’s normal, what’s not •Stick with what works •CCC disability work transitions •Interim response funding

diagnosis •A relief - clarity - reason - back-up •Attachment or FASD (correct diagnosis) •Having to be the parent from hell to get help and/or diagnosis

What our families are saying ....

Don’t punish success by taking away

support.

They can’t

change the way they are.

When they take away supports, it’s like taking

away a wheelchair from

a paraplegic!

All our kids need

IEP’s

“Incredible Years” Parenting does not work with FASD kids.

Eagle Anecdote

A message to RTLB’s “LISTEN .... and ensure your contribution is a positive one ....”

The pattern for each person with FASD is unique,

but teachers can become aware of individual strengths and needs, and can tailor programmes and

supports, to build strengths

and create hope for students with FASD

Alberta Learning 2004

From seeing the child as

Won’t

Bad, annoying

Lazy, unmotivated

Lying

Fussy

Acting young, babied

Trying to get attention

Inappropriate

Doesn’t try

Mean

Doesn’t care

Refuses to sit still

Resisting

Trying to annoy me

Showing off

From Personal Feelings of:

Hopelessness

Fear Chaos, confusion

Power struggles

Isolation

Professional shifts from:

Stopping behaviours

Behaviour Modification

Changing people

To understanding the child as

Can’t

Frustrated, challenged

Trying hard, tired of failing

Story telling to compensate for

memory, filling in the blanks

Oversensitive

Being younger

Needing contact, support

Displaying behaviours of a

younger child

Exhausted or can’t get started

Defensive, hurt

Can’t show feeling

Over stimulated

Doesn’t get it

Can’t remember

To Feelings of:

Hope

Understanding

Organization, comprehension

Working with

Networking, collaboration

To:

Preventing Problems

Modelling, using cues

Changing environments

Paradigm Shifts and FASD “Building Strengths, Creating Hope”— Alberta Learning. By Diane Malbin (2004)

SCREAMS

Structure with daily routines, simple concrete rules

Cues (again and again) can be verbal, audio, visual, whatever!

Role models (family & TV), show the proper way to act, children mimic us

Environment with low sensory stimulation (small classrooms, little clutter)

Attitude of others, understanding that behaviour is neurological, not wilful

misconduct

Medications, vitamin supplements and healthy diet are quite helpful

Supervision – 24/7(lack of impulse control, poor judgement at all ages)

Teresa Kellerman

A final note .....

F

S

D

A

requently

bused

iagnosed

eldom

“Once we know better we do better” (Lisa ,a parent of an FASD child)

Estimating FASD prevalence at 1-4% and extrapolating from US findings, 10 to 60% of NZ children in state care have an FASD disability. (McGinn, 2012)

Summary

• FASD umbrella term not clinical diagnostic term

• FASD means brain damage caused by foetal exposure to alcohol

• No safe time/ No safe amount of alcohol during pregnancy

• Acknowledging Primary Disability (FASD) will lessen Secondary Disabilities

• Paradigm shift – seeing child as can’t rather than won’t

• Each individual affected by FASD is unique

• FASD does mean strengths as well as needs

• 10 second person in a one second world

Resources

♥ my son ♥

Families in NZ living with FASD

Books:

• Teaching Students with Fetal Alcohol Spectrum Disorder

Alberta Learning, 2004

• Fantastic Antone Succeeds – Experiences in Educating Children with Fetal

Alcohol Syndrome” ed Judith Kleinfeld and Siobhan Westcott (1993)

• Fantastic Antone Grows Up – Adolescents and Adults with Fetal Alcohol

Syndrome” ed Judith Kleinfeld et al (2000)

Websites:

www.ahw.org.nz

www.fan.org.nz

http://complexld.ssatrust.org.uk/project-resources/cldd-briefing-packs.html

http://www.come-over.to/FASCRC/