*Names have been changed to protect anonymity.

Meeting Aria

As a resource worker for Oranga Tamariki, Gillian’s husband Stuart drove local foster kids to and from school around their South Island town – including Aria, who was 6 years old at the time. He got to know her well, and was sad to learn she was back in temporary care just three years later, after 11 different placements in the care system. So, through her social worker, Stuart and Gillian invited Aria to join their family holiday to Queenstown.

“We had a lovely time on that trip, and soon after became her foster parents,” says Gillian. “We could see she had memory issues and didn’t listen or follow instructions. It became clear why so many of her placements had broken down – people thought she was naughty, but we could tell she wasn’t doing it intentionally. We just saw the beautiful child inside.”

Having previously raised a biological, neurotypical child, Gillian says it was a hard adjustment.

“We had raised a child using the same tactics our parents used with us – the behavioural approach, showing there are consequences for actions. Most kids just get with the programme, but it was like Aria didn’t even know what the programme was.”

Relief of diagnosis

By chance, a few years later Gillian attended a professional development course that included a presentation on Fetal alcohol spectrum disorder (FASD).

“It was a lightbulb moment,” says Gillian. “Every single sign of FASD, that was Aria.”

But getting a formal diagnosis brought its own challenges, as assessments are notoriously difficult in New Zealand. FASD isn’t recognised as a funded disability, so there are limited DHB diagnostic services available, and to go private can cost around $7000.

“We fought for eight years to get an FASD assessment for her,” says Gillian. “They looked at the 10 domains of brain function, and consulted a wide range of allied health professionals, including psychologists, occupational therapists and speech and language therapists. Aria scored a severe impairment in over 3 of the domains of brain function to confirm her FASD diagnosis. It was the biggest relief of her life. She had grown up with people saying really nasty stuff about her intelligence, and now she was able to say I’m none of those things. I was prenatally exposed to alcohol. I have a brain injury.”

Support and strategies

With a better understanding of Aria’s sensory processing and executive functioning, Gillian and Stuart changed tact – fidget toys and weighted blankets proved especially helpful to soothe her at times of stress or anxiety. Visual prompts were a big help for memory challenges and everyday routines. They created stickers to remind Aria what steps to take in the bathroom like getting a flannel, a towel, the soap, the shampoo for her shower. When she couldn’t remember the next step, she could look at the prompt.

Gillian says it takes lots of patience from parents, so you’ve got to take breaks, and share the load with a partner if you can.

“Sometimes I’d get so frustrated that I would need to step away until I could regulate myself, but Stuart never gets cranky, he has endless patience! But also, I could always see that Aria’s behaviour wasn’t intentional, and it helps to keep that in mind. It’s brain damage from prenatal exposure to alcohol, so it’s not about getting her to control it; it’s about managing how I respond.”

Confabulation (made-up or distorted recollections or memories) is another common challenge in children with FASD.

“Sometimes she would say things that started out accurately but then became ‘a story’ she was creating. It was never wilful lying on her part, it’s that she can’t remember the details of the story, so she makes it up as she goes.”

Finding a tribe

Fortunately, many people in the community have been understanding and kind to Aria, including neighbours and extended family.

“Not all of our friends have stuck with us over the years, but it has been lovely to see the many extraordinary and kind people that embraced her. The fact is, she can misread cues or get the wrong end of the stick, but lots of people have gone out of their way to support her. Girl Guides was one of them – everyone had a seat at their table, including Aria and other neurodiverse children.”

For Gillian, one of the biggest gamechangers was joining FASD-CAN (Fetal Alcohol Spectrum Disorder - Care Action Network).

“My advice to any parents of a child with disability is to your tribe of people on the same journey, who get what you’re going through. The FASD-CAN workshops have been unbelievably helpful. That was the first time I was in a room with caregivers navigating the exact same situations and challenges. I’ve made so many friendships. It’s different from being around other parents who act like your child’s behaviour is just bad parenting. We know it’s nothing to do with that, and it’s a relief to be around other parents who love their children just as they are.”

Aria has been on her own journey to find her tribe – literally, tracing her ancestry and iwi to discover connections in Rotorua, to Te Arawa and Ngati Whakaue.

“She knows who she is and where she stands,” says Gillian. “She knows who her ancestors are. She knows her mihi.”

Hopes for the future

Thanks to her supportive network, Aria has navigated the challenging transition from adolescence to adulthood.

“Her high school was exceptional,” says Gillian. “They read every specialist report and made accommodations for her early on, so she thrived. It was wonderful to see her pride in leaving high school with NCEA Levels 1 and 2.”

Since turning 18, Aria has been on a journey to be more independent. She tried living on her own but found that doesn’t work for her, but boarding can. She has lived with an older woman who offers accommodation as well as some ongoing support and routine.

“Aria does have some anxiety about the future, particularly around the lack of security when we’re not around anymore,” says Gillian. “The fact is, she’ll always be interdependent.”

Aria is 23 now and works part-time with a disability employer. Her biological mum is another significant support, and Aria often visits Gillian and Stuart for dinner or to stay for a night. She remains closely connected with FASD-CAN providing advocacy, acting as a youth leader for other young people with FASD, and has spoken at conferences.

“It’s wonderful that she has found a place and community that validates who she is and provides such amazing support,” says Gillian.