Week 8: Who are the experts? #107days

We’re onto Week 8 of this year’s #107days and this week will focus on the importance of listening to parents (with reflections about why this is something some professionals, be they social care, health or education professionals, don’t always seem to grasp). #107days this year has been as organic as last year with our weekly themes partly decided in advance but sometimes emerging as an outcome of a particular event or happening.

The recent experience Sara and family have had with an independent investigation commissioned by Oxfordshire County Council with the explicit intent to exclude the family from the process sparked off thoughts in the Justice Shed around this topic. You can read Sara’s reflections about OCC here, here and here. Kicking off this week, we have an excellent post by Rebecca. Please feel free to comment below or send us anything you would like included in this week. From recent discussions on twitter and facebook, this appears to be a topic very close to people’s hearts.

Experts

If there are 8765 hours in a year, then I reckon that very roughly – very roughly – I have probably spent at least 40,000 waking hours with my 11 year-old autistic son. This is based on about ten hours a day for 11 years, factoring in approximately issues such as part-time schooling, night-time wakefulness and other aspects of his life to date. But my point is that it’s more than say, a few hours, or even, none at all.

I was thinking about this when considering the precarious status of parents of children with ‘needs’. For example, an important meeting about my son was once postponed at the last minute because ‘a professional’, whose presence was ‘essential’, couldn’t attend. When the meeting finally took place several weeks later, the professional confessed rather shame-facedly that she hadn’t so much as clapped eyes on my son. Wow. That’s some expertise, isn’t it? You don’t even need to see the child to be able to understand him and pronounce on his future.

The polarisation into opposite camps of parent and professional is further reinforced by the generation of expert reports about your child from individuals who barely know them. Their title of ‘specialist’ is sufficient to give their opinions a prestige and importance that the ‘parents’ view’ can never hope to match. Parents are invited to offer their opinions, a few crumbs from the professional table being thrown in their direction because that’s what’s supposed to happen these days. It doesn’t matter if you are a good, bad or indifferent parent, or whether in all other aspects of your life you might be treated as someone worth listening to at least some of the time, your insight will rarely be treated as of equal – or greater – importance than that of the apparent experts.

There are a few glimmers of hope-giving exceptions, of course, where there is genuine listening to and engagement with care-givers, but the all too common casual and unquestioned dismissal of parental understanding can only foster distrust and deepen misunderstandings. Sadly, your 40,000 hours of playing, cleaning, feeding, listening, helping, keeping safe, teaching and indeed learning from your child, can count for very little, despite the oft-repeated – but evidently not believed – mantra of ‘you are the expert in your child’. This cannot be good for the child who, by the way, is the only actual expert in all of this, and really should be centre stage, but in fact rarely is (despite protestations to the contrary).

Could LB’s ‘preventable’ death have been avoided if the multiple professionals involved had listened more to his mother Sara? I don’t know. But what I do know is that the lifetime of love and understanding she brought him – which unravelled catastrophically during a mere 107 days that he was no longer directly under her care – gives her an expertise and insight which no professional could ever match.

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3 thoughts on “Week 8: Who are the experts? #107days

  1. A thought provoking account from Rebecca. As a parent of 2 grown up sons with additional support needs I really struggle with the word professional – as Rebecca so eloquently alludes to . . . . who is the professional in the case of her son and indeed for LB and many others . . . . it is without doubt the family who have devoted so much time to supporting their family member through all the challenges that life has thrown at them. As a very good friend said to a teacher who was trying to tell her how to support her son, “you may have degrees and letters after your name but I am the only person who has a degree in my son!”

  2. Is the expertise and professionalism based in hard science, and demonstrable record of successful outcomes? Or is it more often just asserted, constantly changing and more than a bit woolly? As a parent, I don’t necessarily see myself as “expert” – though certainly, as you say, experienced! What I need is allies, not one size fits all theories.

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