For those who have even the most basic understanding about FASD and the challenges it brings to family life when a child has FASD, there is enormous respect for the patience, energy and determination these parents and carers exercise every day in their efforts to support their child and achieve the best outcomes for them.
However, sadly, on a very regular basis the NOFASD team hear parents and carers explain about a prevailing lack of understanding about FASD from those they are connecting with in their daily lives, who don’t understand the many challenging ways this disability manifests in an individual’s responses and behaviours. Parents express how physically and emotionally draining and discouraging it is for them to be the focus of judgement about their (supposedly apparent lack of) parenting skills, when a child is judged by others to be behaving inappropriately.
NOFASD has produced resources which can assist in explaining some basic facts about FASD and help to defuse some of these situations – and we’d like to share some stories about how these resources have made a difference in the lives of other parents and carers.
A mother contacted NOFASD late last year and requested some of our community advice cards. She was particularly concerned as the family had just moved to a new home in mid-December and due to the change in family routines her two kinship foster children with FASD were, in her words: “…completely dysregulated, with mornings especially challenging with lots of screaming, swearing and running away. I’m worried what the neighbours think and I’m not sure how to explain these distressing behaviours to them.”
After receiving the community advice cards from NOFASD, the mother put the information cards inside Christmas cards which she left in the mailbox of her new neighbours. She subsequently advised NOFASD that: “The neighbours were super understanding and when we got back from being away over Christmas for a couple of days, they’d left us a huge care package full of treats at our front door with a warm Christmas card too. Thank you so much, I now feel like I have understanding neighbours and it was because I just popped those information cards in their mailboxes.”
Other parents have expressed how difficult it is if their child is having a meltdown in a public place such as a shopping centre. We’ve heard of bystanders trying to step in and ‘take charge’ of the situation in ways that are not going to be at all helpful for a child with FASD – or others making loud and disparaging comments about the child’s behaviour and the parent’s lack of parenting ability. Such responses make these situations a very isolating and demeaning experience for parents of a child with FASD.
Having some community advice cards available can be very useful in situations like this as they can be given quickly to those in the near vicinity who are taking an active (but unhelpful!) interest in the situation. The brief information on the cards explains that the child has a brain injury which is causing the behaviour – and also provides some brief tips on how bystanders can best assist in resolving the situation (by not becoming involved which is likely to escalate the situation).
One mother commented to NOFASD recently that, even if she does not have the advice cards on hand, now that she has the concise explanation from the cards “My child has a brain injury which is causing this behaviour” it has made her feel empowered to be able to provide a quick, clear explanation when required and defuse any sense of judgement from onlookers.
NOFASD encourages all parents and carers to order some of these cards so that you’ll have these available, if or when, you need to be able to explain, but do not have the opportunity or desire to engage in a lengthy explanation about FASD. The cards are provided free of charge to parents and carers living in Australia. You can learn more about these cards and to place an order here