“We understand that she cannot help what she says or does”

Author: PCF

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Claire shares her experience of caring for a child with Foetal Alcohol Spectrum Disorders. 

I have been a TACT foster carer for nine years and I still find it amazing, fulfilling and challenging. Welcoming children, making them part of the family, showing them the world, watching them shine, grow in confidence and smile, is what I love to do. We have good days and not so good days, but who doesn’t. Every day is a fresh start.

When our foster daughter L came to us at the age of nine we were unaware that she had Foetal Alcohol Spectrum Disorders (FASDs). I had heard of it but wasn’t very ‘clued up’.

L presented some difficult behaviours, such as verbal outbursts and sleeping and eating problems.  For the first two years I put it down to her having suffered neglect in the past. However, with all my experience of caring for children, my instincts told me something wasn’t right. Then I met another foster carer at a TACT conference who told me about a child she was caring for who had FASDs.  Everything she said answered so many of my questions. I immediately spoke with our trainer and attended a TACT FASDs course within a few weeks.

Finding information and training about FASDs was relatively easy; I read books, found online information, joined an online forum, communicated with people overseas, other carers, and birth parents. Speaking to others going through the same experience was so helpful and provided me with coping strategies. But getting a confirmed FASDs diagnosis for L was a very different matter. Our GP did not really know anything about FASDs, and he was not aware that there are three types:

FAS – Foetal Alcohol Syndrome. These are the most severe affected, with abnormal facial features, growth, and central nervous system (CNS) problems, including intellectual disability.

ARND – Alcohol-related Neurodevelopmental Disorder. Children with this have learning and behavioural problems, impaired memory or attention, impulse control, and judgment problems.

ARBD – Alcohol-related Birth Defects. Can include abnormalities in the heart, kidneys, bones, and with their hearing.

I finally managed to get a referral to a Genetic Specialist, who I discovered cannot actually diagnose FASDs. In fact, there are not many qualified people at all who can do this, so we got ARND diagnosed. Having that diagnosis does not really make a lot of difference as her condition is for life, there is no cure. However, early intervention treatments can improve a child’s development, but as we were not aware of this, we did not get an official diagnosis until she was aged 11. Now knowing she has FASDs has helped us so much, we understand that she cannot help what she says or does.

Every day with L is different; I never know how she is going to be, sometimes she does not even speak, just stares, has breakfast and gets ready for school. Other times she will put dirty or creased school clothes on and she will get very upset when I ask her to change because she does not understand why.

Her bedroom is extremely untidy, but it is her comfort zone, possibly due to a chaotic earlier life, or maybe also due to the FASDs. Other carers of children with FASDs I have spoken to experience the same. When I remove the many things piled up on her bed, she puts them back. Asking her to tidy her room causes anger, and she can go from ‘1-100’ in an instant. But 30 minutes later, she will calm down and apologise.

It can be so hard sometimes, as she has a brain condition and there is nothing I can do about it. I do not have the answers or a magic wand. After she has had an outburst I always tell her I love her, but that I don’t like her behaviour. We talk, usually sat on her bedroom floor, and I cuddle her, and we look at what could have been done differently, but I know that later, tomorrow, or next week it will happen again.

She does not show any emotion, in the first two and a half years she was with us she never once cried, so when she did, I was so happy as we all need to have a good cry sometimes. She can come out with very random things and her peers don’t really get her, which sadly means she often gets bullied and is unable to maintain friendships. She can sometimes come across as very intelligent but then do something that a young child would do. She often doesn’t think before she says something, she says people call her ‘weird’ and say nasty things to her. Often she will stare into space or at someone, but isn’t aware she is doing it.

I love her to bits, I always tell her that, and ensure she knows she is staying with me for the long term. She asks why I don’t shout back at her (previous carer did this), and for a long while I thought it was an attachment issue, but I now know it’s not. Sometimes she will not let me cuddle her or get close, but then she will just come and hug me. She is particularly averse to change, routine is very important to her, so just a different cup or seat at the table can cause a problem.

I wish I had known about FASDs from the start of L living with us. It is so important to spread awareness of what is an invisible condition. There are many children affected by FASDs in the UK, up to 17% could have symptoms according to a study in November 2018. It is a huge spectrum and often overlooked. It is a lifelong disability with no cure and the damage to the brain is not reversible. It is also the most common preventable cause of developmental disability. People need to be aware of the damage drinking alcohol during pregnancy can cause.