FASday: Patients and families and healthcare

It’s FASDay – September 9th and my blog is about Fetal Alcohol Spectrum Disorders (FASD) – but also about patient and family engagement. If you’d like to know more check out FASworld. If you want a great and engaging read about FASD – Bonnie Buxton’s book Damaged Angels was a huge help to us and our families (and the support groups she started at St. Mike’s Hospital in Toronto).

At a job interview recently, someone asked me why I focused on patients and family experience more than the technology we use in our job. I wasn’t sure at first, I like stories and storytelling, maybe that’s part of it? I’ve had a few bad healthcare encounters as a patient (and seen a few) – but I am sure we’ve all had some. Family experiences with cancer? Check. Again, pretty common in the caring professions.

I think what put the pieces together was the case conference I attended a couple of weeks ago as a parent. My oldest son (P) has FASD. He’s struggled with this debilitating (and preventable) neurological condition his whole life. What people used to see was a little blonde boy acting out, running away, hitting other children – and parents who couldn’t handle the behaviours, parents who sometimes yelled back, walked away and (eventually) ignored them. We stopped going out for meals, taking him to friend’s houses, doing anything outside the routine that would throw him into a spiral of anger. The eventual diagnosis at aged six was a relief at first. But as he became older, and we learned more, we settled into a kind of waking despair. “Kids like him” don’t go to college, “kids like him” drop out, get addicted to drugs, end up on the street. “Kids like him” – with messed up executive functioning and zero sense – are the most common inmates in Canadian jails. Today at seventeen P’s living in a group home with supervision, we’re hoping he goes back into a special education program this fall because it will keep him busy, safe, for a few hours a day. He didn’t graduate high school, but he held down a job for a few weeks last summer. Better than we’d hoped.

My ex-wife and have been to parenting classes, support groups, retreats – read all the books, combed all the websites. We were told by various social workers, mental health workers, key workers, play therapists, psychiatrists, psychologists and physicians that we should be able to cope, we needed positive strategies, a male role model, a time out zone, a safety plan, yet another class to teach us how to stay calm, a sticker chart, visual aids, a rewards jar. We have seen, and talked to, and been talked at by hundreds of healthcare professionals. We’re lucky – we live in a country that has supports for kids like my son. Whenever there is a crisis the troops rally round – P’s “high risk” care team consists of at least ten people and we’re all trying to keep him safe, alive, until he gets older and his brain develops more.

We went for long stretches when he was younger just coping at home. It was impossible to get him comprehensively assessed and his medications reviewed between crises. All the help was time-limited, temporary. and we’d end up in the ER again and again We learned how to navigate the broken system and how to game it. Supports for kids with FASD are few and far between. In Ontario (a few years ago) there was one special education classroom for kids with FASD in a limited age bracket, in a different school district. We needed respite, most of all, for a break. We ended up paying for this ourselves and it was hard to find the right person who “got” FASD so P ended up with a patchwork of carers all over the city. At one point I found myself in the living room of a “private consultant” who would train parents what to say to get a diagnosis of autism for their kid with FASD – because the support was better, there was funding, educational assistants, sympathy. We seriously thought about it.

So – back to the case conference. It was fairly typical as these things go. I was “the mom” and there were about eight healthcare professionals and mental health workers around the table. As we waited, they started chatting about colleagues, conferences they were planning to go to as I sat and scrolled through my phone. My son had overdosed and was in a local hospital, he was coming out that day but the week before had been rough. He’s also been beaten up and robbed, maced. This had happened a few times but he refused to stay away from the location, the people – still talked shit about them on social media. So I felt there were a few things to focus on. The woman on my left was joking with the table about her upcoming retirement. Just a few weeks to go. The mental health worker was in her early twenties and showing her neighbour pictures of her new dog.

When we got started we did a round table of introductions. It always feels odd to me not to use my professional designation – because that comes with some value – there’s little value in being the “mom” in this situation. My ex-wife and I have been in hundreds of these sessions. We’ve cried, brought binders of tests and assessments, circulated a special “getting to know P” book that was strengths-based (he loved Pokemon, has a wicked sense of humour, he loves to rap) – we’re there as his advocates and to tell his story. But mostly they don’t want to hear it. There’s a rhythm to these meetings. We hear reports from his social worker, care worker, Ministry worker, mental health worker, the people from his residence etc. Unbelievably I hear he’s “doing well”, he’s attended one of the youth sessions, one of the drumming circles, begged off the music class that was arranged for him with studio time but said he’s like to go next time. I interrupt – he’s in the hospital today – he overdosed again, what can we do. They look at me – I’ve cut off the tirade of “I’m retiring soon” who was telling the social worker it was illegal to keep clean gear in a Ministry home (even though it’s a harm reduction – kids can’t keep any drug paraphernalia where they live). He’d suggested it might keep P safer. She vehemently disagrees. They suddenly seem to remember I am there.

One of the women leans across to me and reminds me we’re doing Naxolone training next week – one of the hardest things for moms is to realise we have no control over the risky behaviours – she says sympathetically. I lean back. The talk shifts again to the issue of clean gear – they’re laughing now because they have to hide the tin foil in group homes, because of crack I guess? When the minutes of this meeting come out I’m not mentioned – my words aren’t there. I’m neither surprised nor disappointed.

I’ve got no easy answers – I know the system is flawed and I also know that most of us do our best. The healthcare professionals that I remember the most are the ones that listened to us, believed us and didn’t suggest a sticker chart because we’d already tried that and it didn’t work! They recognised the love and the pain of the situation and were respectful. They saw us as a resource, not a box to be ticked. They didn’t have all the answers, but they were willing to bet we had the most lived experience with our son. They acknowledged the limitations in the system but they still held out hope. They met us in our living room, and not at the hospital – and they asked us what we wanted from them – rather than telling us what they were going to do for us. I can think of a lot of ways that case conference could have gone better – perhaps by giving me space to speak, ask me what I thought for a start? It’s sometimes as simple as that.

 

fasday

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2 thoughts on “FASday: Patients and families and healthcare

  1. Oh my word Amanda, firstly as usual brilliantly written, Secondly I simply can not comprehend how you have managed to do what you do so brilliantly while managing all of this in the background. Consider me now more informed about the long term consequences of fetal alcohol spectrum disorder. I also can’t help feeling angry about how in this century case conferences still continue to exist in that format with mum (or dad or whoever is there representing the individual) isn’t centre stage, with their voice the most dominant in the transcribed minutes. Maybe it’s the researcher in me that feels frustrated by a system where the most important voices aren’t heard, or the professional in me that feels exasperated by what can sometimes feel like health professionals arrogance that they would know more about this than those living and breathing it or worse that they are following a protocol or programme that everyone has to fit into. I simply have no words but total admiration of your strength and resilience and sheer beautiful humanness xx all my best wishes to you and P xxxx

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  2. Thanks Heidi – I know most people don’t know/think about FASD – it’s really an invisible epidemic and when people DO think about it it’s often a “them not us” thought. It’s heartbreakingly common.

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