Parenting a child with Fetal Alcohol Spectrum Disorder
Fetal Alcohol Spectrum Disorder (FASD) will be in the spotlight again this week when international expert Jeff Noble gives insight and hope to New Zealand parents, caregivers and professionals dealing with fetal alcohol and its effects daily.
Jeff is the founder and CEO of Noble Initiatives based in Canada and is focused on helping to create more good days than bad for those parenting and working with people with FASD.
He’s running two sold out workshops in Auckland (November 25th) and Christchurch (November 27th) covering the fundamentals of the disorder and providing attendees with ideas to make positive changes in the way they understand, interpret, and live/work with individuals affected by FASD.
New Zealand organisation FASD-CAN is bringing Jeff to New Zealand with the support and funding of the Ministry of Health.
Claire Gyde, Chairperson for FASD-CAN, says the organisation in a not-for-profit charity set up five years ago to unite caregivers, strengthen families and educate communities about FASD.
She says that parents and caregivers usually make their way to FASD-CAN after receiving a diagnosis for their child.
“By the time they come to us they are already battle weary. They have been through the wringer and they are exhausted and overwhelmed by the information they’ve been given and the reality of life long effects of fetal alcohol. Coming to that realisation can feel quite isolating so we aim to provide a support network that helps them know they are not alone and there are others in the same boat who understand what they’re going through.”
Parents are usually dealing with challenging behaviours at home that spill over into the classroom and social situations. ‘Normal’ parenting approaches just don’t work, says Claire.
She says this behaviour can include lashing out physically and verbally, not understanding consequences of their actions, and as the children get older and become teenagers their behaviour can be reckless. Claire says it is important that parents and caregivers understand the strategies that will help their children but equally, the wider community needs more education about FASD.
“Without appropriate support and understanding, those with FASD often end up leaving school with no qualifications and with damaged self-worth. This can then lead on to depression and mental health issues. Sadly, many end up on the wrong side of the law. We need a circle of care around parents and caregivers. They are the ones doing the hard yards.
Jeff’s workshops are designed to give practical ideas on how to make positive changes.
The two workshops both sold out quickly and have waiting lists. Claire says this is an indication of the level of interest and extent of the problem in New Zealand.
“We’ve been working with the Ministry of Health on the Action Plan for FASD and we wanted to provide some practical training for parents and caregivers on how to deal with FASD. We also wanted to give parents a networking opportunity. We approached the Ministry with the idea of bringing Jeff to New Zealand and they came on board to fund it.”
Jeff first got interested in FASD through his wife’s tales of working in a role supporting youth living with FASD and it wasn’t long before he got involved working at a specialised group home for youth with FASD.
“Through many, many, many learning and A-Ha! moments I was able to rise through the ranks eventually working my way from full time staff member, to team leader, to FASD Coordinator until being given the ultimate opportunity of becoming a FASD Foster Parent.”
Jeff says the workshops are FASD 101 with topics including understanding brain dysfunction, primary and secondary disabilities, a model for providing appropriate accommodations (techniques, schedules, and strategies), sensory integration and the importance of early intervention.