My husband and I wanted to have a child together, so we decided to adopt and our daughter came to live with us aged 18 months. That was nearly 10 years ago.
We were told about her birth family where there had been drug abuse, but there was no mention of her being exposed to alcohol in the pregnancy.
We did our own Google research about exposure to drugs and the advice seemed to be that if the child hadn’t experienced trauma or neglect she would have better chance of living as full a life as any other child.
We expected to have to deal with attachment based difficulties, but we were never warned about FASD – Foetal Alcohol Spectrum Disorder, which is the technical term for the disability that can be caused by the mother drinking alcohol during pregnancy.
Unless you have experienced it, it is hard to really understand what it’s like to care for a child with FASD.
How do you explain to someone who hasn’t shared the experience of what it’s like to live with the violence, obsessiveness and impulsiveness of a child who, through no fault of their own, isn’t able to regulate their emotions?
We were told it was the terrible twos, we were sent on parenting courses and to change behaviour through rewards and stickers.
But this is a brain based disability, rather than a behavioural disability. Many people living with FASD appear normal, meaning their disability is invisible. So, it’s vital we raise the profile of the disorder to not only prevent it in the future but to increase tolerance and understanding of those living with FASD.
There are more than 400 co-occurring symptoms which can include cognitive problems, joint pain, the need to wear glasses, hearing loss and sensory tolerance levels are very low. Normal development is very late including speech and language and so when they are young they can’t communicate how they are feeling.
In the past health professionals have defined the diagnosis by facial features and this means it is very difficult to diagnosis without proof of alcohol exposure in the pregnancy, as this symptom only occurs in about 10% of cases.
It’s hard, so many of us end up feeling isolated, alone and like there’s no one we can talk to that would truly comprehend the situation.
The current lack of understanding can lead to problems in education. Children affected by FASD are often misunderstood and in mainstream schools can seem naughty or be labelled a ‘bit weird’. If they require more support they can still struggle in a specialist environment, being unable to engage with other children – who themselves may have more severe conditions.
When my daughter went to school the teacher asked if she was used to getting her way at home all the time but that was not true – that’s why we had battles all the time.
There needs to be a better appreciation of the type of support that would help children with FASD and the people who care for them.
Traditionally there has been too much focus on attachment and trauma-based therapies. Parenting courses can be useful, but they come with a risk of attributing blame to the very people who need support as many of the techniques taught are not appropriate for dealing with the behaviour of a child with FASD.
There needs to be a greater emphasis on more holistic therapies and strategies, such as sensory based therapy that help with the brain development and the problems associated with FASD.
We also need to see an improvement in diagnosis, which not only helps with the acceptance of the condition but allows parents to find people in a similar situation to build peer support networks and share experiences. Parents of children with FASD understand them better than anyone, through necessity they have become experts so it’s important we are able to share that knowledge amongst ourselves.
Lastly when we’re thinking about the impact FASD has on people’s lives and the support they require we must not lose sight of the most important fact: our FASD children are wonderful, bright, loving, imaginative, funny, engaging, resilient and totally loved.