Caring for a child with Fetal Alcohol Spectrum Disorder

Are you caring for a child or young person who you suspect has Fetal Alcohol Spectrum Dosorder, or one who has been diagnosed?

In this episode of our online radio show The Carecast – we discuss how brain injuries caused by exposure to alcohol on the womb have a lasting impact – and what we can all do to help.

Fostering Kids NZ Communications Advisor Alistair Wilkinson compiled the Podcast. Here’s what he found:

There’s no New Zealand data on the prevalence of Fetal Alcohol Spectrum Disorder, but studies from the US suggest it affects 1 percent of the population. That translates to 46 thousand New Zealanders living with FASD, many of whom go undiagnosed.

Pamela Anderson is a foster caregiver with 25 years’ experience. I went to see her in her suburban Auckland home. What struck me when I walked in was the living room walls. They’re covered, literally covered, in photos of children who’ve found refuge in her home.

“It’s over 140 odd, my husband reckons he’s counted 150 something, but it’s over a hundred, yeah over a hundred,” she says.

Pamela knows from first hand experience no two FASD children are the same. That makes it tough to diagnose – and easy to mis-diagnose.

What we can say for sure is that all children with FASD have problems with functions that help us get through everyday life.

The heart-breaking part of all of this, is that while there’s a lot we can do to support children with FASD, it is not curable.  Brain damage caused by exposure to alcohol in the womb is permanent, and it can be wide-reaching.” Some children with FASD find it impossible to focus in class. Others just don’t learn to make good decisions around personal safety. For lots of children with FASD there are issues with anger.

Pamela’s dealt with some extreme situations over the years, but she’s learnt some pretty good strategies to cope:

“Don’t take it personally. It’s the hardest thing I’ve ever had to try and learn, but after these things I have learnt, just take a step back and think, OK what’s going on with this child. You’re feeling scared or nervous, because usually that is the reason.”

When we were planning this article, the team at Fostering Kids New Zealand said to me, it’s really important that we dedicate a whole episode to FASD, as an acknowledgment of the scale of the problem in our community.

Fostering Kids NZ CEO Linda Surtees

Fostering Kids NZ,CEO Linda Surtees says children in care are disproportionately affected by FASD.

“Knowing as many caregivers as I do, and we have a 4000-fold membership, there’s a lot of children out there who present symptoms that could be fetal alcohol syndrome. They certainly are significantly impacted. As far as mothers drinking alcohol, the damage can be done before the mother even knows they’re pregnant.”

At the start of 2016, Fostering Kids New Zealand helped pull together a kind of travelling roadshow on the issue of FASD.

I went to the one in Rotorua, on an unseasonably wet and grey summers day. It was held at the Harvest Centre, a huge church complex in the suburb of Westbrook. People had come from all around the central North Island to learn and to talk and to share.

Jacqueline Pei (R. Psych., PhD) is an Associate Professor in the Department of Educational Psychology and Assistant Clinical Professor in the Department of Pediatrics at the University of Alberta.

Jacqueline Pei was one of two speakers. She’s a registered neuro-psychologist and a Professor at the University of Alberta in Canada. They’re doing some ground breaking work on FASD, and Jacqueline is at the forefront of the research.

“Any parent, when you’re dealing with a child who has a challenging behaviour or has done something wrong, we’re really quick to feel as if the world is looking at us. That we’re an awful parent and we’ve done a terrible job. And in the case of a child or an adolescent with FASD, because they aren’t acquiring those same levels of independence, skill and decision making that would be expected, there are times when systems that should be providing that support might be viewing that behaviour as a parenting failure and say hey you didn’t teach your kids how to do this, therefore, when in fact we’re dealing with an aspect of brain function that isn’t coming online for that youth, it has nothing to do with, in fact those caregivers are often doing an absolutely fantastic job,” she says.

“The other thing we know is that as that stress response system is activated it has to kind of clear out and reset so all that stress hormone has to be moved into our body so that the system can rejig. Kind of like, in a toilet, you need the tank to fill right up so little bobber in your toilet tank can fill up and you can flush your toilet again. In individuals with FASD sometimes what we find, is that toilet just keeps draining and so that bobber can never get up – and so we end up with somebody who is on this perpetual emotional rollercoaster and they are not able to get off it. Their system doesn’t fully flush, so their not actually able to stop being angry for much longer, and sometimes what we do then is we keep flushing the toilet to try to get them to stop, and all we do is make it worse. We can’t stop the toilet from draining that way, we have to just help them move the bobber up and increase that capacity to settle themselves and re-regulate.”

Tracy Mastrangelo – Provincial Co-ordinator of the Wellness, Resiliency and Partnerships (WRaP) program.

Jacqueline’s colleague Tracy Mastrangelo runs programmes in schools for children with FASD, and for children who are suspected to have FASD. She’s focused on getting people to work together to build supportive learning environments:

“Where I would start would be that educators are caring adults – that typically educators don’t go into education because they don’t like kids, or because there were no other job opportunities. I think first and foremost, that’s where we need to start, recognising that everybody here, working collaboratively on this team cares about kids. The second thing that I would highlight is that relationships for these kids are key. That these kids absolutely can have success, absolutely can complete school and transition into adulthood, get good jobs. They need to have adults that are key in their lives, build strong supportive relationships,” she says.

“The third piece, is that all of those adults on that collaborative team, need to work together as a team, and need to recognise that everybody plays their own role, but all play an important role. As long as we’re communicating, and reflecting, and working through the problems together, we can have success.”

Tracy is clearly passionate about making a difference for children and young people living with FASD. I asked her what things she’s seen that have reconfirmed her decision to be involved in this work:

“Endless hope,” she says.

“These kids have so much hope, just built in within them. These are kids who have had some real adverse situations in their lives, and they’re still moving forward. That hope that they bring, I think to somebody who gets the honour to be able to work with them, it’s contagious. How do we not want to support, how do we not help and get excited when they experience success? In the time that I have been working in this field, I would say that that would be key. The other piece I think is that these kids although they struggle often with relationship, they really want relationship, and they typically are very caring kids. Sometimes as the adults, us kind of pulling back the layers, and finding that within. They’re hopeful, caring kids and you can have a lot of fun.”

Jacqueline and Tracy’s New Zealand workshops were made possible with the assistance of Canada FASD Research Network, FASD-CAN New Zealand, Fostering Kids New Zealand and Alcohol Healthwatch.

You can listen to other episodes of The Carecast here.

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