Ko Ngā Whakataunga Mā Te Whānau, Kaitiaki Hoki | Caregiver & Whānau Support

We are a volunteer organisation that does not provide direct support, but we will be able to direct you to the agencies who do – and provide much information within this website! Connecting and informing are our main roles, but our role and many of our activities are developing. Watch this space.

 

Whakapakeketia tamariki FASD Parenting a child with FASD

It can be very tough being a parent or caregiver of an individual with FASD.

You need to become your child's PA/coach and mentor and it can feel like a 24/7 job! To keep yourself sane and able to stay on the job, self-care is extremely important. If possible you will need as much backup as you can get, and have opportunities for respite. Here are some common scenarios with ideas to make things a little bit easier.

Common Issues

Communicating patiently and effectively with your FASD child can make the difference between getting out the door for school, avoiding meltdown (theirs or your own) and generally keeping the peace. Some useful phrases for your own internal dialogue include: 

“Can’t not won’t.”
Remember that FASD is caused by brain damage.

“Ten-second kids in a one-second world.
People with FASD need more time than others to process and understand.

“Gravel roads, not highways.”
Atypical neural pathways associated with FASD are easily disrupted.

“Brain, not blame.”
If you find yourself making unhelpful judgements, remember this phrase.

Adapt the environment, not the person.”
Safe, supportive environments are key for people with FASD to thrive.

“Short, simple, specific, slow.”
Effective communication is essential for people with FASD who won't get sarcasm, irony or often, jokes. Getting them to repeat instructions is also encouraged.

Everyone knows that getting enough sleep can be a huge part of our effectiveness, functionality and mood!

But for individuals with FASD, sleep disorders are a specific problem. Lack of good sleep means that behavioural issues are elevated. Around 80% of parents and carers of children with FASD say their children have problem with sleep. These can include: 

  • Frequently waking up at night
  • Feeling scared at night 
  • Sleep walking
  • Problems settling 
  • Problems waking 
  • Problems understanding the concept of bedtime
  • Melatonin or sensory issues

It's a big subject, but there are plenty of great tips: avoiding pre-bed excitement and setting up very solid routines is essential. Creating a calm quiet bedroom with low stimulus (no clutter), ear plugs or headphones, heavy blankets, no screen time and calming music can also be helpful.

Over 2020 there was a PhD project done in at University College London on sleep in children with FASD - the largest study to date. The three key findings were: 

• a significant proportion of anxiety can be predicted by sleep problems. This is true for both typically developing (TD) and FASD populations.

• children with FASD experienced significantly higher levels of sleep problems and anxiety than TD children, the majority at clinical levels.

• sleep interventions should be a clinical priority for children with FASD.

Find the FASD Sleep Project here

 

 

 

 

 

 

 

Children with FASD may show signs of being hyper-sensitive (feelings things too much) or hypo-sensitive (not feeling things enough) to the senses of touch, taste, smell, sight, and sound. It can be very handy to have noise cancelling headphones, sunglasses and a fidget toy on hand.

When getting to school can be derailed for the day by a scratchy jumper, or a fight breaks out because of loud noises, it's important to anticipate sensory overload scenarios before they happen. 

For an excellent introduction to initialising heavy work to help with sensory self-regulation, check out the award-winning, UK-based Griffin Occupational Therapy, who specialise in sensory processing. 

There's more information on a handy tip sheet here

'Heavy work' for sensory processing

Everybody is born with an internal sense of body awareness known as 'proprioception' which is initialised via messages sent to our brain from our muscle and joint receptors. Sometimes people affected with Fetal Alcohol Spectrum Disorder have sensory processing difficulties which means that their central nervous system is trying to figure out a way of linking their brain to receptors. Recent research shows that getting kids to do 'heavy work' can focus and calm them in many different ways.

For a downloadable worksheet about initialising 'heavy work' click here

 

 


If you are in immediate danger ring 111. If unable to speak, press 55.

Let them know that your child has a neuro-disability. It's essential to keep yourself safe.

 

Child to parent violence (CPV) is a frequently hidden issue which arises in families with an individual with FASD. It is a complex issue which continues to be misunderstood and minimised outside of the family home. If you are experiencing CPV please be assured that it is not due to poor parenting – it can be because the young person in your care is struggling to regulate and/or make sense of their emotions. This can result in a need to dominate, coerce, and gain control over their parents/caregivers. 

Displays of aggression and violence by children/adolescents towards adults that are intended to threaten and intimidate and put family safety at risk can include: 

  • Making threats 
  • Exhibiting uncontrolled rage (this is dysregulated behaviour where there is a risk of harm to others) 
  • Verbal abuse -yelling, screaming swearing, name calling, making intimidating comments  
  • Physical - hitting, kicking, punching, biting, throwing objects or using objects as a weapon to intimidate or harm, breaking family property, hurting pets, pushing, blocking. 
  • Playing mind games – manipulating, controlling, gaslighting, threatening to run away, self-harming, confabulating. 
  • Sexual – penetration, touching, exposing themselves, sexual innuendos.  
  • Financial – stealing, using credit cards, coercing money from caregivers. 

People experiencing CPV report that they are always in a state of hypervigilance and feel like they are walking on eggshells waiting for the next explosion. Some of the common mental health effects of family violence are PTSD, depression, anxiety, low self-esteem, suicidal thoughts, hopelessness and fear of the future. 

 

CPV Webinars

NoFASD Australia have produced a webinar series called Child and adolescent to parent/carer violence and abuse presented by University of Otago Professor, Anita Gibbs, a registered social worker who has taught social work, sociology and criminology courses for 20 years. Her research interests include Fetal Alcohol Spectrum Disorder (FASD) and complex disabilities, especially identifying best practice in helping families and best evidence for professionals in their interventions with families.

These webinars look at the issue of CPV and the impact that it has on family members, how professionals respond and strategies that may help to reduce the family distress. Click here to go to the first webinar, and here for the second.

 

Where to go to for help 

If you are in immediate danger ring 111. If unable to speak, press 55. Let them know that your child has a neuro-disability.
It's essential to keep yourself safe in order to be there for your child in the future.

Shine Family Violence Agency is a National organisation offering a free helpline, training, and consultancy throughout New Zealand.
Call 0508 744 633 for 24/7 help and counselling. 

If you are in crisis or feeling suicidal, please reach out to Lifeline Aotearoa Inc on 0800 543 354.

 

 

There is much international information on FASD medication online – it's a very big subject however, and we are currently working on some basic guidelines for Aotearoa NZ. We'll keep you posted!

Looking after yourself

Being a parent or caregiver of tamariki with FASD can be a great experience, but it is also tiring and challenging. Whānau who have children with FASD are often under a great deal of stress. 

It's very important to look after yourself so that you're in the best possible place to be able to stop and think about options. This will not always be possible however, even with the best of intentions, so don't beat yourself up if you can't always respond in the way you wish you could! 

 

 

Here are a few ideas to help keep you on track.

  • Parenting an FASD individual can be isolating. Parents of neurotypical children often don’t understand the issues you face every day. Find someone to talk to who understands what it’s like. This could be a whānau member who is close to you, or another parent of a child with FASD. It can be very helpful to join a local support group. Find a list of groups available in Aotearoa here.

  • All parents have dreams for their kids. It may be hard for parents of tamariki with FASD to deal with disappointment or guilt. A counsellor, elder or possibly religious leader may be able to help you.

  • Think about what helps you to relax and make a real effort to do it every day or at least every week. Have coffee with a friend, go for a walk, a run or to the gym, find a creative outlet, take a long bath with the bathroom door locked, go out with your partner, attend a support group, hire a babysitter or share and swap childcare.

  • Sometimes, the only place your children can truly shine is in their own home. Let them be at home a lot and don’t feel bad about celebrating holidays and birthdays at home where they feel safe and comfortable.

  • Many children with FASD become very stressed when the family leaves home to go on holidays. It can be hard for them – and for everyone – to leave a familiar area and routine or stay in a strange hotel room. If you do decide to go away, plan carefully ahead and involve your tamariki in discussions about what to expect.

  • If at all possible, arrange for regular respite breaks for you and/or your partner, even if just for a ‘date night’. Hire a babysitter or respite worker who understands your child, and train him or her about FASD and the importance of routine.

  • Take time to laugh. Watch a funny movie or video. Think about the funny side of some of the things your kids do.

  • Music can change the mood for everyone. If things are going downhill, put some relaxing or fun music on. 

  • Try to look at the big picture. You are doing the very best job you can.

  • Think about all the things that you love about your children and all the things you admire. Write a list and stick it on the fridge!

  • Continue to educate yourself. Knowledge is power – and what we know about FASD is changing all the time!

Meet Eileen

Eileen Devine is a licensed clinical social worker with over a dozen years of clinical experience, the adoptive mother of a child with fetal alcohol syndrome, and a certified facilitator through FASCETS, Inc., a leading non-profit specialising in the neurobehavioral model. She worked with NOFASD Australia to make a couple of fantastic videos to support caregivers of FASD tamariki. 

To watch 'Building Carer Resilience #1', click here.

To watch 'Building Carer Resilience #2', click here.

Check out Eileen's own website here

FASD and the education system

 

Caregivers have to be the main point of advocacy for their FASD children at school to help them achieve their best – and often there is much potential! 

As soon as an FASD diagnosis is reached, the school must be informed, and the first contact is likely to be your child's school SENCO – Special Education Needs Coordinator. You'll come across lots of acronyms in education – there's a quick guide in the tab below. 

Depending on the diagnosis and level of intellectual impairment, we have plenty of information on our Information for Educators page which is helpful for teachers to begin an understanding of how your FASD child may behave and learn differently.

An essential and excellent resource is the Te Kete Ipurangi inclusive education page. Here you'll find everything you need to know about what's available for special needs students at every level of education, including funding. 

 

It's often very helpful for teachers to have a one-page information sheet that they can keep on file to refer to which gives helpful tips about your child's strengths, challenges, tips on strategies and ways of communicating.

To this end, we've created a Word document that you can download and fill in, then print it out for your tamariki's teacher. We've also included an example sheet that's filled in.

Click here for the sample pdf (see below), and here for your blank Word document to fill in.

 

intro to school sheet

 

 

Whānau and caregivers in Aotearoa have little option but to be prepared to advocate tirelessly for their child at school – the great benefits of engaging closely with teachers and other educational professionals are well-documented and sadly there are still few clear pathways in our schools that take FASD into account.

From our own experiences, it's enormously important to take time to set up your tamariki at every level of school to enable them to avoid upsets and conflict, achieve their potential and become a valuable member of society.

If this is accomplished at a young age, the better the outcome is for them getting to high school and staying there – but if behavioural problems in early teenage years lead to exclusion from school there's a high chance that things may track badly for your rangatahi in their late teens. 

Having said that, once everyone enabled to communicate and work positively together to identify strengths, create positive environments and healthy expectations, amazing successes can occur! 

The best resource we have come across in terms of helping whanau and caregivers in Aotearoa to advocate for their FASD children comes from Western Australia Development Disability Council.

It covers issues such as:

  • building relationships with schools and teachers
  • creating a profile of strengths and challenges for your tamariki or rangatahi
  • managing their paperwork
  • problem solving
  • mastering meetings, including the psychology of being assertive and/or persuasive! 

Download 'Learning How to Advocate for your Child at School' here

 

Advocate for your child at school - Front Cover

 

IWS, ORS, SENCOs and more - in getting funding and help in education, you may feel that your life begins to revolve around acronyms! Here's a FASD education acronym dictionary - and contact for free legal help from Youthlaw. 

SENCO

At school, you and your FASD child will very likely need to develop a relationship with the Special Educational Needs Coordinator (SENCO for short) is a teacher who is responsible for special educational needs in school. Most schools in NZ are obliged to employ a SENCO, whose role is to ensure all students with learning disabilities are well equipped to obtain the right help and support they need at school.

LSC, RTLB, RT Lit

Learning Support Coordinator; Resource Teacher of Learning and Behaviour; Resource Teacher Literacy.

IWS

IWS stands for Intensive Wraparound Service. The IWS supports tamariki who have behaviour, social and/or learning needs with a plan to meet each child’s needs. Their needs are highly complex and challenging and they require support at school, at home and in the community. The IWS plans are created to support tamariki at school, at home and in the community. Plans are designed to have a range of activities and interventions, including help from professionals, to help tamariki and whānau develop new skills. Click here for further information from the Ministry of Education.

ORS

The Ongoing Resourcing Scheme is for students with high or very high ongoing needs for learning support. For more details from the Ministry of Education, click here

HCN

High and Complex Needs.

ICS, IRF

In-class Support Funding; Interim Response Funding.

Here's a handy graphic representation of where to start and who to talk to around getting the right help for your tamariki at school. 

Click the image to download.

Education pathways NZ

 

Education for tamariki with FASD has many obstacles which can often cause problems in the mainstream school environment.

Before beginning their educational journey, children with FASD may already be struggling with processing information, interpreting body language of others and following instructions. Many other skills are not developing in the same way as their peers, so fitting in at school can be a challenge and school refusal or challenging behaviour may be the result.

Home-schooling, or home education as it's most often now referred to as, can be a viable option for some families. While it does require commitment and has challenges, for those caring for a tamariki with FASD who is struggling in a mainstream school environment, it may be an opportunity to provide learning opportunities for your child in a quiet, calm, home environment, with a learning plan tailored to their specific needs. Some families find home education significantly reduces the anxiety and distress that can accompany school attendance and can lead to better outcomes.  

There's an excellent page to consult about all aspects of home education here.

Benefits of home schooling

  • close, warm family relationships
  • fewer teenage problems
  • flexibility which means a more spontaneous and exciting education for your child
  • more opportunities to extend their learning and have them participate in the world around them.

Children learn best when they are interested in a subject and the flexibility of home education allows this to happen regularly.

One of the biggest advantages to home schooling is the flexibility. You can tailor learning programs to suit you, your child and your lifestyle. This also means everyone ends up doing things a little differently.

Drawbacks to home education

  • reduced income as one parent is at home educating rather than earning an income
  • giving up at least part of your house to children’s projects
  • the need to make a greater effort to involve your children in activities with their peers outside of the home for socialisation reasons 
  • a lack of exposure to an assortment of ideas and opinions that the student is more likely to receive if he or she is schooled face-to-face in a school environment and
  • the fact that you are ultimately responsible for the education and learning of your child/children. This may be daunting for some parents who choose to home school - but there are plenty of resources to help!
  • less respite for FASD whānau – the hours when your tamariki are at school can definitely be a blessing!

Do I need permission to homeschool?

Yes, you do. In New Zealand children between 6 – 16 years of age must attend a registered school, or have an exemption from school attendance. This exemption is granted by your local office of the Ministry of Education.

You’ll need to convince the Ministry officer that you are able to educate your child 'as regularly and as well' as a registered school. However you are not obliged to follow the national curriculum or create a mini-school at home. 

The Ministry of Education, in considering your application, will want to know:

  • that you’ve considered your child’s needs and abilities; and
  • that you’ve done some research, set goals and have a reasonable idea of what you are doing.

Contact your local Ministry of Education office for an exemption application form.

Resources

The Ministry of Education provides a small amount of assistance in the form of an annual ‘supervisory allowance'. This consists of $743 for the first child, $632 for the second, $521 for the third, and $372 for each one after that.

This is paid retrospectively, in two instalments each year, June and December.

 

There are a number of Homeschooling websites to consult in New Zealand – click here for a good place to start. 

 

Many thanks to Kiwifamilies for some of the information on this page. 

 

It can be very handy for teachers to have a printout for their wall as a first response resource for a quick reminder of strategy when dealing with students with FASD. This double-sided sheet can be downloaded and printed. Click here or on the pic to download. 

 

hey Teacher front cover

This is part of an 'Education month' examination of FASD within the New Zealand school system. We asked some local experts in FASD education a question each...

Clair Edwards

Clair heads the FASD-CAN education sub-committee. She has been teaching in Deaf Ed/Special Ed for the past 20 years, and has just moved on to a new role as Adviser On Deaf Children (AODC). She live in Auckland with her three children, one hairy dog and three and a half cats!

 

What are the most common problems for students with FASD at school and how are these needs not met?

The most common problem facing our tamariki/rangatahi within the education system reflects a much wider problem facing NZ: the lack of recognition of FASD as a disability and a general lack of awareness that FASD is a permanent, lifelong brain injury. This means that our tamariki often struggle to access support and funding as often they do not fit criteria and are not considered ‘bad enough’. Lack of funding results in a lack of support within the classroom (for both student and teacher), a place where our tamariki often struggle to cope with the demands and expectations placed upon them. Often funding comes as the ambulance at the bottom of the cliff when behaviours have escalated and come to a critical point.

There appears to be a distinct lack of training within teacher training institutes around FASD, so teachers are often unaware and not equipped with the skills to deal with the complexities our tamariki present. There is also little support for teachers who are often already dealing with large class numbers and other children with complex needs and neurodiversities.

This and a focus within the classroom on behaviourist techniques such as rewards and consequences (which do not suit children with FASD), often end in behaviours escalating and tamariki/rangatahi being labelled as ‘naughty’ and having behavioural problems.

Within early years and at primary school, our tamariki with FASD often seem to do better, possibly due to the more holistic emphasis on learning, but as they hit intermediate/high school there is a huge mismatch in terms of environment and expectations. The fact that they are expected to move from one class to another, one teacher to another and independently follow a timetable does not work well for our learners! If you add sensory processing and memory issues into the mix, it is easy to see how overwhelming this environment would be. Inabilities to regulate emotions without support could end in rangatahi being unable to cope and ending up in trouble.

Then there is the complexity of FASD itself and the fact that it is often ‘invisible’. There’s a saying: ‘if you’ve met one person with FASD, you’ve met one person with FASD!” Levels of skills within FASD can be so different and students can often present as coping on a surface level, but from one day to another they appear to be unable to complete tasks they had previously done. Without educator training and understanding, it tends to paint a picture of a wilful, manipulative child, rather than a misunderstood one. Often in schools there is a disconnect between the school and the real experts on the child/tamaiti – the whānau! Instead of utilising the knowledge and skills that the whānau have, they can be blamed for behaviours and viewed as interfering parents.

We really need to shift the goals for our learners with FASD from independence to interdependence!

 

Trouble with the law

 

Impulsivity, eagerness to please, lack of judgement and recklessness all contribute to a well-documented over-representation of rangatahi with FASD within our courts and penal system.

Many parents and caregivers have found it helpful to introduce their rangatahi to the local police. They can explain some of the basics of FASD to them and ensure that caregivers are called direct should their teen or young person get in trouble. 

We have a pamphlet on our resources page which you can download and either email or print out to hand over to police – you could even encourage them to ask their colleagues to read it. Click here to access our police pamphlet.

There is more information for police on our professionals page under Police and Justice, including online training for them about FASD.

It can also be a good idea for your rangatahi to carry on them a health passport which they can hand to police that will inform them that they have FASD and also has contact numbers for you. 

However, if problems with the law occur, it's very important to communicate clearly with professionals working in the justice system to ensure they can help both the parent and the young person get through this challenging time.  

If the worst happens

  • If your young person is arrested, inform police of the FASD diagnosis and areas of challenges for the young person. Ask that they not be interviewed for a statement until a lawyer or guardian is present.

  • If your young person is detained in custody, inform the custodial staff of the FASD diagnosis. Tell them about your young person’s strengths and challenges to help the custodial staff better understand them.

  • Tell the young person’s lawyer about the FASD assessment and if possible, provide a copy of the diagnostic report. This information will help the courts understand your child.

  • The parent or caregiver’s attendance in court is important to help answer questions and consider community supports.

  • If your young person is assigned to a youth justice or probation officer, parents are encouraged to communicate with that person.

  • If possible, go to appointments to ensure the young person understands the information. This will help them comply with a probation order. Probation orders can include language that is hard to understand, so ask questions. If your young person is more visual, ask about visual tools.

  • There is quality, free legal advice available from Youth Law - call 0800 UTHLAW, email at [email protected] or find them on Facebook here.

  • If your child has communication problems within a justice setting you may be able to access help from Talking Trouble Aotearoa.

Mental health for rangatahi

Some rangatahi may struggle with mental health issues which need professional help. Following are some of the more common concerns that young people may experience and how you can support them. 

 

Addictions 

There are many reasons why young adults with FASD may experiment with drugs or alcohol, such as low self-esteem, peer influence, a need to fit in or as a way to cope with their feelings. Following is a list of strategies that may help you to support your teen. 

  • Talk to your tamaiti / rangatahi about substance use and your whānau expectations about using alcohol and other drugs.

  • Be curious when asking your young person about their substance use but try not to judge. Staying neutral will encourage your young person to be honest with you.

  • If you suspect your young person has substance use problems or has developed an addiction, contact your local Alcohol and Drug Service for support and information about how to talk to your child or young person about substance use.  

  • Connect with your child/teenager’s school about what addiction/counselling resources are offered in their school.

  • Provide the counsellor with information about your child/teenager’s primary diagnosis to ensure the service provided is best suited to your teenager’s learning style.

  • Get involved to help your young person at home and in the community with the goals they set during counselling sessions.

  • Provide reminders and/or transportation to appointments.

     

Self-Esteem  

Most people, at some point in their life, struggle with low self-esteem. This may be especially true for a young person with a FASD diagnosis because they may feel different, have trouble socially or struggle in school. As a parent, there are things you can do to try and help your young person feel good about themselves, such as: 

  • Create opportunities for your young people to build on their strengths, talents and interests.

  • Celebrate even the smallest of successes with your rangatahi.

  • Highlight your teenager’s strengths at school and with other service providers, to ensure they use and build on them.

  • Get your rangatahi involved in organised recreational activities that can provide opportunities for building friendships and experiencing success. Remember that they may need reminders about rules, practice and game times, as well as transportation to get to the activity.

     

Self-Harming Behaviours 

Self-harming behaviours may take many forms, such as cutting, scratching, not eating, vomiting after eating (bulimia), not allowing wounds to heal, burning or hair pulling. It is important to know that self-harming is most often used as a way of coping. 

  • It is best to get professional help to find out if your child is using this as a way to cope with feelings. If that is the case, try to react calmly, without judgment or blame and be aware of your body language. Remember that your young person is already feeling hurt. Ask professionals for more ways you can help them overcome self-harming behaviours and develop healthy ways of coping.

  • Explore healthy coping methods your young person can use, such as writing their feelings in a journal, listening to music, drawing or other artwork, and exercising.

  • Use feelings charts to help your rangatahi normalise all feelings including anger, sadness and joy.

Grandparents raising grandchildren

Around Aotearoa there are many grandparents raising their mokopuna. It often comes with some big challenges, but you are not alone: a NZ group is dedicated to helping tūpuna raising grandchildren. the only organisation dedicated to providing information, advice, support and advocacy specifically for full-time grandparent caregivers.

Click here for more details.

 

Ko ngā mahi hāpai mā te whānau me ngā kaitiaki | Practical help for caregivers and whānau

FASD training for caregivers

We've curated some FASD training options for you to consider – both informal and formal.

Read more

Caregiver and whānau support groups

Here's your listing of whānau-led support groups who meet regularly around the country.

Read more

Our Whānau Direct grant scheme

Thanks to initial funding from the MOH we are rolling out a scheme to support FASD-CAN members live their best lives through small financial grants.

Read more

Directory of professional support

A listing of professional support available in Aotearoa, from initial diagnosis to ongoing assessment. 

Read more

Tūhono mai  | Become a member

Tūhono mai | Become a member

Sign up to receive more information such as relevant news or events – it’s free, there’s no requirement for input from you, and there are some great benefits built in. By joining FASD-CAN you’ll gain access to specific resources, advocacy, webinars and hui. You'll be sent a free printed copy of our Handbook, and if you are a parent/caregiver or FASD individual you will also be able to apply for some funding support under our Whānau Direct Grant Scheme.

But even better – by becoming part of our team, you’d be helping us out. Staying informed and sharing information with others means you’ll be walking alongside us as we campaign for those impacted by FASD for the right to live their best lives.

Join us now!

Sign up

Ko ngā pūrākau a ngā mātua me ngā kaitiaki | Parent's stories

Hei kaitūao | Become a volunteer

Hei kaitūao | Become a volunteer

Do you have some time to help us help others? We often need volunteers to help with our activities, or who are able to offer support to others, start a support group, fundraise or assist at awareness-raising events. If you have expertise to share (and all of us who have lived with someone with FASD has built up some knowledge of behaviours, strategies, contacts and more), your skills could help others.  

If time is short, other options for input could include joining one or both of our private Facebook groups to share information that may help others – our Parents and Professionals group or our Parents and Carers Support group.

And please consider contacting local MPs to ask for more recognition of FASD – your voice matters, and together we can be stronger!  

Volunteer

Understanding FASD

To deepen your understanding of how individuals with FASD work, check out this page.

 

Learn more

More Resources

For further helpful tips and resources, it's worth having a look around here.

 

Learn more