Kim and Alan Milne had fostered a few kids before they were handed 10-week old David at New Year – his mum was going up to Auckland to find a place for them to live. There were already three half-siblings and she just never made it back for him. There were a few increasingly challenging years before Kim had a breakthrough moment.
“We were at a toddler gym class and as usual the other parents were glaring at me while David created his own special kind of havoc. But then a woman came up to me and said, ‘It’s so hard isn’t it, when they’re ADHD. He’s just like my son was – he’s 15 now but we’ve only just found out. He said, ‘Mum, why didn’t we do this sooner? It would have been so much easier if I’d known.’”
Kim and Alan swung into action. “We were incredibly lucky in that there was a multi-disciplinary diagnosis trial in progress, and we got straight in to that,” she recalls. When he was four they were in a clinic talking to a specialist while David waited in the room next door with a carer – but he’d found a crayon and drawn all over the door by the time they came out. “I only turned my back for a second!” cried the carer, words his parents were all too familiar with.
By the time David was five he’d been diagnosed as ADHD and was already on Ritalin; by eight they knew he had FASD. “We were given this enormous report – they ran us through it but the only words that stuck in my head were, ‘he should be able to drive’,” said Kim. “That’s all I could remember. ‘He should be able to drive’.”
At eight, David was already having difficulties fitting the neurotypical expectations at school. Before he was stood down after one incident, Kim and Alan removed him and thanks to a series of connections, they were able to get him into a local Catholic school. A few calm years followed. “They really walked the talk around being inclusive and forgiving,” Kim says, gratefully.
Sadly the school didn’t continue through intermediate, so the change of school the Milnes dreaded loomed large. However, a fantastic teacher in the quiet ‘laptop class’ allayed their fears for a year before a crisis in Year 8. “He just didn’t get people. He had no social clues, he felt isolated and sad, it was noisy – he just couldn’t cope.”
Kim remembers David breaking windows and doors at this point; they were about to pull him out of school when an extraordinary teacher aide came into their lives, a local kaumatua who was calm and steady and committed to helping the Milnes. “He was an amazing human being who kept in touch with us until his tragic death later – that hit David really hard. There was a lot of damage when he heard that awful news. However, with this wonderful man’s insight and help we limped through to the end of intermediate and two years into high school.”
In intermediate and high school David was also one of the lucky ones in what seems to some parents like a lottery – funding support for FASD individuals. He was fortunate to receive both HCN (High and Complex Needs) and then IWS (Intensive Wraparound Services) funding. However, the purpose of both is to put in place support and learning which is meant to solve a temporary problem – and this model just does not work for FASD individuals who will almost always require life-long support.
The high school David went to had an excellent SENCO (Special Educational Needs Coordinator) and by the end of the first term of year 11 the family was told David had the intellectual ability to achieve NCEA Level 1 at the very least. “This was wonderful news, but it seemed to be a pattern that whenever things got better for us, they very soon got worse. The SENCO and teacher aide left within months of each other, and the wheels fell off the support truck. The principal had his own ideas around David’s abilities and who should support him, without consulting anybody else, and he wouldn’t listen to us or others who knew David.”
Things came to a head when David’s supports in the playground were reduced. “We said this would be a bad idea, given his brain couldn’t miraculously be ‘fixed’, and surprise, surprise, David hurt another child.” The principal gave them the two days to ‘think about things’ before he took the matter of expulsion to the board, and reading between the lines, Kim and Alan withdrew David from school once again.
After this, to Kim and Alan’s great sadness, David lost interest in continuing at school. “It’s just so bloody hard,” says Kim. “You feel like a useless mother. I thought I could throw everything into educating myself and everyone I came into contact with about FASD and things would be better. But it was a rare educator who wanted to know or wanted to help. You lose friends too, and it’s amazing our marriage has stood up to the relentless stress.”
Since David left school, he’s tried a couple of ‘gateway’ programmes: a computer course and one in a kura hub, but both ended with him being exploited by other young people who took him down the wrong pathways – into drugs and very nearly into gangs. “But David knew it was wrong and wanted to leave both situations. He liked feeling he was part of a group, but when he pulled out it was made very clear to him they were not his friends after all and his self-esteem plummeted even further. This is a kid who has never been invited to a birthday party other than with family, which is just so wrong. People can be very cruel and judgemental.”
Kim attributes her own sanity, often precarious, to the writings of Teresa Kellerman, an early pioneer and champion of FASD hope, and to her own sense of humour. “Plus of course, David is in fact the sweetest, most lovable person. I’ve taught him humour – I had to teach him what jokes were! – but now he’s funnier than me. We get on really well and I love him to bits.
“But it’s still so hard. Something will piss him off and he’ll punch another hole in the wall – he’ll be so sorry for it though. We try not to take the constant repairs personally but it’s hard when Alan has to spend every weekend fixing things. FASD has cost us so much in every way but financially – wow. The windows, the walls, the smashed TVs and phones – yeah, it’s been a lot. But we’re luckier than some in that he’s never been violent towards us.”
Aged 21 now, David’s not in a great place but he is able to go and stay at a local backpacker’s from time to time on his own to give everyone some space. The owners like him – he helped them out recently when another resident had a drug episode and threatened them, but David stayed calm and talked the other young man down. They have mentioned they might take David on to live in and help out on a more permanent basis, but Kim is taking that with a grain of salt. There have been many times that people have said they would help and it hasn’t materialised.
“It would be amazing, but part of me thinks it’ll never happen. Of course we think all the time – what’s going to happen when we’re not around? We want onging safe, secure living for David; he needs help with money, help to stay on the straight and narrow, with his meds, his diet, his hygiene. Who’s going to do that? The current funding and programmes assume FASD people can have their problems solved then move on – this does not happen. They are forced to be square pegs trying to squeeze into the round holes of the disability system. Where are the creative solutions?”