'We have learnt so much' - caring for children with FASD

A new challenge

The Government introduction of a ban on smoking in enclosed public spaces in England led to us having to close our family business. We had previously discussed fostering or adoption; Tony had been diagnosed with a rare blood cancer in 1999 which meant we wouldn’t be able to have children together, so it seemed a perfect time to pursue the idea further. We had successfully raised a ‘blended family’ of three boys, with the trials and tribulations that raising step-children can bring and thought fostering would be a good challenge, and that we had plenty of skills to bring to the table. 

We saw an advert in our local paper, attended a local information evening and started the process, managing to attend a local ‘skills to foster’ course around our life at that time. Tony was winding down the business and tying up loose ends and I had secured a full-time job with the local council schools and admission team. It took longer than average to complete the process as we chose Tony to be the main carer, meaning that I could continue full time work. We eventually passed our ‘panel’ to care for children from the ages of 0 to 18 and made the decision to start by looking after babies short-term. 

‘Just one more day’

Just before our first planned placement (a newborn) was due to arrive we had a telephone call asking if we would take two-year-old twin boys for a ‘one night emergency’. They had been removed from home following domestic violence. It was thought the boys were deaf and mute. They turned up dressed in just a T-shirt and a nappy, one had been travel sick in the car and it wasn’t until we had stripped them both off and put them in the bath that we realised that they were identical twins and we were unsure of who was who! 

On the second day their social worker asked if we could keep them ‘just one more day’, and the same happened on the third day - then we were asked if we could keep them for the weekend. It went on from there - a one day emergency that changed all of our lives completely. This summer the boys will have lived with us for eight years!

It soon became apparent that these nearly three-year-olds weren’t meeting any of their expected milestones and there were lots of unexplained behaviours. They needed constant supervision for every minute that they were awake. However, they were learning new words daily and when we took them for a medical a month later the doctor was amazed at the positive difference in them.

We felt sure it was something else

As they grew it became apparent that the boys had very poor receptive language, poor motor skills, poor short term and working memory, issues with emotional regulation, difficulties making or sustaining friendships (despite appearing sociable), sensory issues, a tendency to be oppositional or defensive when asked to do something, difficulties doing things that they had done before (they had to learn again in each circumstance), no understanding of cause and effect, impulsiveness, no stranger danger. Professionals in ‘the team around the child’ were sure behaviours were trauma and attachment related but we felt sure there was something else. 

The diagnosis dilemma

Foetal alcohol spectrum disorder (FASD) is an invisible disability that is difficult to diagnose and in many counties diagnosis has been stopped by clinical commissioning groups. It is a ‘spectrum’ disorder that includes some 400 plus other conditions including ADHD, autism, hypermobility, speech defects/delay, sight problems, glue ear/hearing problems, incontinent issues, learning disabilities, anxiety and defiance disorders, emotional, social and behavioural difficulties. 

Even though the children in our care had many typical traits of FASD it is barely recognised or understood - we were often accused of bad parenting and exaggerating difficulties. The continual battles for diagnosis and support have been both the highs and lows of our fostering experience; fighting for diagnosis, their EHCP at school, for a specialist school provision, respite care and special needs groups who would accept them. We were so lucky to receive an FASD diagnosis, with facial features, but because the boys can present themselves so well in some social situations there are still very few people around us that have understood their disabilities and difficulties daily life brings to them and us. Each ‘success’ has brought us a great feeling of achievement. 

A lack of support and understanding

Unfortunately there is still little support or understanding for families with FASD, even though it is the most common non-genetic cause of learning disability in the UK. Reports suggest up to 17% of children are affected – that’s two in every classroom, more prevalent that autism. 

Being a spectrum, some cases of FASD can be mild. Only 10% of children with FASD are born with the facial features. FASD children are often mis-diagnosed with ADHD, ASD or attachment disorder. It is thought that currently over 70% of children with FASD have progressed through the care system.

The past eight years of our life have been hard; our own children have grown from teenagers to young adults and haven’t always understood the difference in our parenting style or our passion to give our twins a chance to be all they can be. Sue had to give up her full-time position but has continued to work part-time in a charity shop. Tony enjoys fishing and is an FA referee on weekends. 

We have learnt so much

We both enjoy raising awareness for FASD at every opportunity; our chance to empower our twins and other families affected, to help them get the best from life. We believe it was fate that brought the boys to our door that day and we will advocate for them as long as they need us to. We have learnt so much through fostering, about child development and disabilities, the care system and ourselves. Fostering is not something to be taken lightly, it can be difficult juggling being a carer, an advocate, a student, an administrative whizz/your own accountant and have the confidence and professionalism to represent the child in your care in meetings with schools, medical professionals, social services and others. It is a huge commitment, a journey, a lifestyle but the rewards can be enormous.