In support of International FASD month, throughout September FARE is sharing the stories of individuals and families living with Fetal Alcohol Spectrum Disorder (FASD).
Neil Reynolds is Dad to five biological children and four long-term foster children, including two siblings who have been diagnosed with FASD.
Neil has been on what he calls “the FASD journey” for almost ten years. His desire to understand FASD has led him to volunteer as a FASD educator with NOFASD Australia and Telethon Kids Institute and become a member of the FASD Hub Australia advisory panel. Neil volunteers as a guest lecturer for the UWA post-graduate FASD program, where he mentors two post-graduate students specialising in FASD and has contributed to various FASD research projects. Neil is a member of the NOFASD Australia Parental Expert Advisory Group and offers advocacy and guidance to parents of children living with FASD.
The story of Neil’s family gives a glimpse into living with FASD and the importance of early intervention and community support.
Wow, what a journey it has been! Thirteen years ago, our life was turned on its head – and then it took on a whole new dimension four years later – and boy has it been amazing.
My name is Neil, and I am a dad to five biological children and four long-term foster children (along with a couple of other short-term placements). We started our fostering journey about 20 years ago; our first foster son who came to us as an 11-year-old is now 31. But our world really changed in so many wonderful ways 13 years ago when a four-month-old child was placed with us.
Our experience with that little boy changed our world in so many wonderful ways and armed us to handle the next amazing change that would happen four years later.
It all started with a phone call. A baby boy (4 months old) was in hospital and needed specialised care and we were asked to take him in. Because we had training in the support he needed, we of course said yes without hesitation! So began a six-week placement with a little boy (we’ll call him Mr M), that soon turned into 12 weeks and now continues into its tenth year. Would I do it again if I knew what I know now? Yes, in a heartbeat. And so, our story begins.
As it turned out the little bloke had a pretty serious VSD (hole in the heart) and a bleed on the brain after being born premature at 33 weeks. He wasn’t expected to survive and all his nurses said goodbye to him before his operation. History has it that he not only survived but made a remarkable recovery.
We remember being warned by the staff when we picked him up, that he possibly wouldn’t talk and probably wouldn’t walk. I guess we should have realised then the courage and determination that he possessed because I’m happy to tell you that today he never shuts up and runs everywhere – proof that you can never put a ceiling on the capabilities of a child with FASD.
Given our experience, it was pretty clear that Mr M had had some real issues in life. Based on his history, and our knowledge of disability, we were pretty sure he had FASD. We began the long process of getting a diagnosis for him so we could better understand and assist him in his needs. Mr M was diagnosed with FASD at approximately 18 months and has since gone on to be diagnosed with Cerebral Palsy, Microcephaly, ID, ADHD and probable ASD, but that hasn’t stopped him.
Our life took another turn some 12 months after we met Mr M when we learned that his sister – Ms L’s – placement had collapsed. We had been trying to connect the two for some time, so we put our hand up and said the siblings could be together with us.
Ms L came to join our family when she was just over four years old. We were her fourth placement in 12 months. She came to us with severe trauma and extreme depression and we soon realised that, like her brother, she had FASD. Once again, we began the process of diagnosis, which took two years.
The transition for her, with her trauma and FASD, made for an incredibly difficult time. I think my wife and I would both agree it was the hardest period of our lives, and it was definitely the hardest thing I had ever been through. But, after a lot of work, we started to see some real positive changes and eventually she began to turn into the beautiful girl we see today.
School continued to be very difficult. Towards the end of Year One the school principal told us that Ms L was the worst behaved child he had ever dealt with, and he wanted her removed from the school. We were told this was all courtesy of Ms L’s behaviour, but I must say it was also due to the school failing to listen to her parents or implement strategies to help her cope. To cut a long story short, we told the school Ms L wasn’t leaving and – to the school’s credit – they stepped up and changed their attitude.
With the support of a great teacher, incredible education assistants and a now supportive Principal, we slowly saw Ms L’s school journey do a complete turnaround – culminating to the point where, when she graduated year 6, she was awarded the school “Endeavour Award”. She has since transitioned into high school quite successfully. We are incredibly proud.
Our two have been lucky in some respects. Mr M has had a stable family life since he was four months old, he commenced early intervention therapies at six months supported by the hospital, and eventually transferred onto NDIS supports that have assisted him reach goals he may never had achieved without that help.
We have been lucky with Ms L’s journey to be able to access NDIS funding and get therapy and supports that have assisted in her development. With the help of a supportive school and community, we’ve created a strong, stable, consistent, holistic environment that has enabled her to achieve so many positive outcomes that, I am sure, no one would have thought possible in the beginning.
There is so much more to our story, and the many successful achievements our two kids have been able to make, that also includes the wonderful difference and enrichment that they’ve brought into our lives.
Since meeting my