Parenting and FASD: 3 steps that can make a difference

If your child has received a diagnosis of FASD, you are probably thinking – what next? What do I do? What is going to make a difference?

When a child has difficulties understanding instructions, following routines, and managing their feelings, you are probably seeing meltdowns, aggression or oppositional behaviour – which can make family life hard. Therapies can be helpful, but what can you do as a parent?

Here are 3 steps you can take to help you parent your child, and hopefully make life a bit easier and more fun.

> 1. Learn about the brain and behaviour

> 2. Follow some simple guidelines

> 3. Assemble your parenting toolkit

1. Learn about the brain and behaviour

When a child has a physical disability, we make accommodations. We don’t expect a student who uses a wheelchair to be able to get up steps to their school – they need a ramp. No-one expects the child to change.

When a child has FASD, the first thing we usually notice are behaviours. Common indicators of FASD include:

• Repeats mistakes
• Difficulty controlling emotions
• Easily distracted
• Can’t see another person’s point of view
• Doesn’t follow instructions
• Can’t sit still
• Has trouble playing with others
• Behaves younger than their actual age.

Most people would look at this checklist and think – well, the child needs to learn these skills. How can they function at school, at home or in life if they can’t follow instructions? And you’re right, this is what makes life so hard for children with FASD. When we expect children to learn these skills – and despite our best efforts, they don’t – parents can be left with a sense of frustration, and the child, a sense of failure.

When we focus on changing behaviour, we are making assumptions about what the child can or can’t control. But FASD is a disability, and its effects are lifelong. So why are we expecting the child to change?

Is it that they won’t or that they can’t?

If these words are familiar, then you have probably come across the work of Diane Malbin, even if you didn’t know it at the time. Her book Trying Differently Rather Than Harder explains FASD as a “brain-based physical condition with behavioural symptoms”. Understanding the connection between brain and behaviour is the key to supporting children with FASD.

Diane Malbin uses the example of a boy who leaves his bike outside in the rain, instead of putting it away. As a consequence, he’s sent to his room for time out with the expectation that he will learn from the experience and not repeat his mistake. This strategy assumes that he can remember what happened, understand why he is getting a consequence, and next time he’s riding his bike he will act differently. But the boy’s brain can’t do all these tasks, so he is likely to repeat the mistake. The parent gets frustrated.

If the boy’s parent can understand that he can’t remember to put his bike away, they can come at the problem from another angle. They might focus on finding ways to remind him without punishing him for a mistake he couldn’t help.

Diane Malbin calls this the neuro-behavioural or “NB” approach.

This book is recommended reading for any parent who is starting to learn about FASD, and you will find the NB approach mentioned in many other FASD resources.

2. Follow some simple guidelines

The second step is to learn some simple principles that help children and young people with FASD manage daily life. Eight Magic Keys by Deb Evenson and Jan Lutke were developed to help students, but have been used by parents and carers to understand why their child might be challenged, and how these challenges can be reduced or prevented.

1. Concrete – use concrete words, avoiding abstract ideas or figures of speech.

• Instead of “get dressed” say “put your pants on”.

2. Consistency – keep things the same as much as possible in different environments, and reduce changes.

• Use the same words for things at home and school.

3. Repetition – you will need to repeat ideas and information many times before they enter long term memory.

• Repeat instructions using the same words each time, every day.

4. Routine – keeping things the same helps children know what to expect and reduces anxiety.

• Keep meal times the same every day, even on holidays and weekends.

5. Simplicity – reduce stimulation and overload from too much information.

• Use short sentences, give one instruction at a time, and wait for the child to process.

6. Specific – say exactly what you mean and describe each steps involved.

• Instead of “tidy your room” say “put all the toys in this box”.

7. Structure – this helps the world make sense for children with FASD.

• Have a place at home for shoes, for schoolbags, for readers. Use picture labels, and put things in the same place every day.

8. Supervision – children need supervision as for a younger child, to help them learn appropriate behaviour.

• Be close by when your child is playing with a friend so you can teach and model social skills.

The Eight Magic Keys also help us understand why unwanted behaviour might be happening – was there a change in routine? Was the task too hard? Were there too many instructions? Did the child need more supervision? This kind of tool helps you take a step back from blame or shame to apply a ‘scientific’ lens and consider your options for what you do next.

If you search online for “Eight Magic Keys” you’ll see these ideas presented in a range of videos articles and graphics.

3. Assemble your parenting toolbox

The third step involves looking for practical FASD strategies and tools that you can try at home, to see if they make a difference to your child. One size won’t fit all, so it’s worth putting together a tool box to draw from.

NOFASD Australia has collected helpful strategies that have been tried and tested by parents and therapists in Fetal Alcohol Spectrum Disorder: An Australian toolkit for parents, caregivers and families. These include:

• ideas to manage shopping, restaurants, and outings
• suggestions for daily routines – bathing, mealtimes
• calming strategies
• ways to help your child express emotions.

Here’s an example of a visual schedule to support a child.

Visual schedules are great for children who have trouble remembering routines, have anxiety about what comes next, or have trouble with verbal language and processing. Many children with FASD process information better when it’s visual – if you have a therapist involved, they can help with these strategies.

If you feel overwhelmed, choose one or two things to try, and don’t feel you have to make too many changes to your daily routine at one time. What is causing the most stress at the moment? You might want to start with the morning routine, or the weekly shopping trip. Your child will have individual strengths and challenges, so not all strategies will be a perfect fit. You could print off a few pages of the Toolkit that cover the morning routine and circle the things that are worth a try, and cross out the ones that won’t.

It’s important that the strategies you use are a good fit for your child, and are presented in a way you relate to, and that are going to fit into daily life. Some parents enjoy reading about ideas in depth, others like checklists and tip sheets, while you may learn best from real life examples. If you can’t find exactly what you need, try typing a question into google, for example:

1. how can I help my 10 year old with FASD make friends
2. strategies to help teenagers with FASD manage money

Or just use some keywords – eg FASD tips parents ownership/lying/anger etc.

In my blog FASD essentials I talked about key Australian FASD sites, including NOFASD and the FASD Hub. Take some time to explore these websites – you’ll find lots of helpful information.

Some of the best insights come from therapists who have also parented children with FASD – they know first-hand what doesn’t work, and also bring a professional lens.

Dr Vanessa Spiller is an Australian clinical psychologist and also the parent of a young person with FASD. You can watch her talk about her experience on the FASD Hub. She has developed a suite of FASD educational resources “Explained by Brain” including workbooks, videos and training for parents, carers and professionals.

Eileen Devine is a Canadian clinical social worker and FASD specialist who is the adoptive mother of a child with FASD. She coaches families in the neurobehavioural approach, and blogs about parenting and FASD.

Ideally, your child’s therapists will be able to help you find and use effective parenting strategies. But we know that many typical parenting strategies don’t work for children with FASD – so if your child’s psychologist, speech therapist or OT hasn’t had the opportunity to learn about FASD, you may need to refer them to these FASD resources. Once professionals can understand FASD, they can be more a more effective support – and help you make a difference to your child.