Top 5 FASD resources for parents and carers
“What is going to help my child with fetal alcohol spectrum disorder?” is one of the most common questions I’m asked in my work with families.
Parents and carers are always keen – and sometimes desperate – for effective strategies. As a parent, you may find many of your child’s behaviours difficult to manage in daily life – rigid behaviours, inflexible thinking, meltdowns and sensory overloads to name a few.
I’ve pulled together 5 essential resources that might make a difference to your child, and make life easier and more fun for your family.
- To understand the brain
- To learn FASD basics
- To find more strategies
- To learn from other parents
- To help your child understand FASD
- Other resources
1. To understand the brain
Trying Differently Rather than Harder by Diane Malbin, MSW.
It’s important to start by understanding the brain, and how it affects behaviour for people with FASD. Many behavioural approaches are based on the idea of functional behaviour -that every behaviour serves a purpose. But what about behaviours that don’t seem to have a purpose?
Some of the challenges for a child with FASD include struggling with daily routines, not being able to follow rules in the classroom or in a game, not remembering instructions or seeming not to listen.
Behaviours can become a problem when they involve aggression, when people or animals get hurt, or when your child can’t safely participate in activities in school or the community. And parents and carers can suffer stress and burnout when daily life isn’t much fun.
Diane Malbin’s book Trying Differently Rather Than Harder explains the neurobehavioural (or NB) approach – that unwanted behaviours are a symptom of what is going on in the child’s brain, and to ‘change’ a behaviour, you as the parent will need to observe the behaviour, think about what the brain is doing (or not doing) and make accommodations, so these behaviours can be prevented. You’ll find that many FASD parenting resources use the NB approach.
2. To learn FASD basics
Eight Magic Keys by Deb Evenson and Jan Lutke
You won’t always have time to sit down a read a whole book – particularly if you are caring for a child with FASD. Eight Magic Keys provides a set of guidelines for supporting a child with FASD. These are:
- Concrete
- Consistency
- Repetition
- Routine
- Simplicity
- Specific
- Structure
- Supervision
These guidelines can help parents understand behavioural challenges – was there a change in routine? Were instructions too complicated? Was the task too complex? Did the child need more supervision to manage a situation, or did they ‘shut down’ because we gave too much information? Prevention of unwanted behaviours is the most effective approach.
Just search online for “Eight Magic Keys” to see a range of videos and resources.
3. To find more strategies
Updated in April 2021, this toolkit is full of current information, strategies, resources, and lots of links to online resources including videos.
It includes information about the NDIS, diagnosis in Australia, tips for young people and information for adults with FASD. NOFASD Australia is the is the national peak organisation for individuals & families living with FASD – their website is essential reading and they also have a helpline. You can join the mailing list and also follow them on Facebook.
(Full disclosure: I revised this resource for NOFASD Australia so I am a bit biased).
4. To learn from other parents
The FASD Hub is a central resource for Australian parents, carers and professionals wanting to know more about FASD. One of the best ways parents and carers can learn about parenting children with FASD is from other parents – check out the videos and stories of parents and their children. The FASD Hub also has a directory of services, training and support groups.
5. To help your child understand FASD
One of the best ways to support a child with FASD is to help them understand how their brain works. Instead of seeing their behaviour as a problem – ‘you are not listening’ – it can help your child to see this as a brain process ‘your brain is struggling to pay attention right now’. When children learn that their brain works differently to others’, it helps them to understand why they struggle in different situations, and most importantly, that it’s not their fault. Because FASD is a mostly invisible disability, children can often be wrongly labelled by others as wilful, lazy, or not trying. Giving children a way to talk about what’s happening in their brain can help them feel better about themselves.
Me and My FASD is a website for children with FASD, created and voiced by children and young people from the UK who have FASD. There are videos, comics and fun games, magazines, ideas for sensory activities and calming cards that children can download and print. Me and My FASD also has a youtube channel. Spending too much time on devices can be a challenge for children with FASD but this is a fun way for kids to use technology while learning about other kids like them.
6. Other Resources
These resources are just a few of the great options out there to support families and carers. You might want to check out rffada for peer support groups, Dr Vanessa Spiller’s resources for parents, Eileen Devine’s blog and the Facebook Group Shifting the Paradigm. I’ll be featuring resources for young people, teachers and professionals in later blogs.