Parents like me, those who have disabled children, rely heavily on some fabulous people who have the skills and the know-how to help our children fulfil their potential, and work with them as teachers, health-care practitioners, therapists and social care professionals. Colloquially, parents use the generic term “professionals” to refer to these people, and in very many cases these individuals can transform lives. Some of them work with our children for many years and in that time we build close bonds of friendship and mutual trust with them. When it goes well it can be life-enhancing. However, it doesn’t always go well, and sometimes for parents the worst moments happen during meetings regarding our children for things like Education Reviews, Multi-disciplinary Conferences, Education, Health and Social Care Planning meetings…. the names of these meetings is irrelevant, it’s how we are made to feel that matters.
I’ve sat in meetings about my children where I’ve been shouted at, lied to, marginalised, unfairly labelled and intimidated. I’ve often left meetings feeling crushed and sometimes it’s taken several days to get even a little bit of my mojo back.
Since I wrote “The Special Parent’s Handbook” I’ve been contacted by countless dozens of parents in my situation – parents doing their absolute best for their children who also happen to be disabled. These parents are often on the floor with sleep-deprived exhaustion because their children need round-the-clock care, or they feel socially isolated because of the prejudices they face every day of their lives, or fearful of the future because their child has a poor prognosis.
Sometimes parents contact me in the small wee hours of the night through The Special Parent’s Handbook Facebook Page. They ask for my help and they run situations past me. These are people who are desperate, who have nowhere else to turn and are often at the very edge of their capacity to cope. In far too many cases, it’s the very professionals who are supposed to be supporting them who have, instead, so demoralised and diminished these parents that they are now running on empty with very little more to give.
The same situations are run past me time and again. Situations just like ones I’ve found myself in several times over, with being isolated, not listened to, and bullied in meetings about funding the essential things their child absolutely relies upon.
Parents often feel unsupported and unfairly judged in these meetings. A very common theme is that mothers feel blamed for behaviours in their children that are directly linked to their child’s disability. Another often repeated phrase is that the parents should learn to “manage their own expectations”, which is a rather patronising shorthand for “Put up and shut up”. Time and again, the parent’s opinions are dismissed entirely while an “expert opinion” from a professional is given a validity and credence that it simply doesn’t merit. Who is a child’s real expert? A parent who is there for them 24/7 or an expert who has seen them in clinic for 10 minutes every 3 months?
On top of these indignities, people are people, and there will always be somebody somewhere who has a different agenda and is downright difficult and unpleasant. I’ve had these people on multi-disciplinary teams and it can be simply awful. It’s not just me either, I hear about this sort of thing all the time from other parents. These difficult people are clever and very well-practised at sabotaging every last vestige of self-confidence we possess. Middle-aged bullies exist everywhere and they love picking on the weakest member of any group. In these meetings the parent is a sitting target of vulnerability and powerlessness. When they pounce and start to verbally destroy their prey do you know what really hurts the most? The fact that not one of the others around the table ever leaps to our defence in support.
Even the best, kindest ones, those we love the most. They avert their eyes, they look embarrassed but their silence cuts like a knife of complicity, as if they are siding with the enemy. I wish some of them had more courage. I know how they really feel because they often refer to it later in whispered tones. I understand better now that their loyalties have to remain with the rest of the team, even when one of them is clearly in the wrong. But it doesn’t stop it hurting, and it serves it’s purpose well in underlining the low-status of the outsider of the group – the parents.
Even when there are no difficult people around the table, the power is firmly always in the hands of the professionals. They not only hold the keys to any funding, but they call all the shots, and they are in charge of recording their version of what happened in any meeting, a version that we are unlikely to ever be allowed to see, and a version that will follow our child through childhood. It will always be clearly visible on their electronic records for any professional in the future to read and form an opinion about us from. What they say goes, what we say only matters if the professionals in the room decide that it does.
One father I know, a lovely, gentle and mild-mannered man, recently discovered that he had been labelled as being “abusive and aggressive” several years ago by someone who was only on his child’s team for a matter of weeks and whom he had never actually met. It suddenly became crystal clear to him and his wife why every professional had kept their distance in a coldly professional manner ever since.
Parents are powerless. Powerless against defamatory remarks being recorded for posterity. Powerless to have an equal voice or opinion about our child’s care. Powerless to be listened to and to be heard about our concerns without risking being labelled “emotional” or “over-protective” or “difficult” or any other number of things that will damage both our reputation and our credibility. If we challenge a decision we disagree with, all hell can break lose. Parents pitched against professionals will always lose – every part of the system is stacked in the professional’s favour.
In the last few months alone there have been some high-profile cases in the news that demonstrate this. Just think of Ashya King. There are other shocking cases too – Claire Dyer, Stephen, Tianze and Chris. Each of these young people has been forcibly removed from where they live with complete disregard to their parents’ wishes. Every parent of a disabled child shares this fear of what might happen to our children too, particularly if we don’t always comply with what the professionals want, or if we have a difficult individual on the team, or if we get labelled “awkward” in one way or another.
Parents don’t have the training or the backing from colleagues that the other meeting participants can rely on, they have no resources to fall back on whatsoever. So last month I created one. I wrote a Meetings Guide to even things up a little bit for parents, passing on some meetings tips and tricks I developed that have worked for our family, plus some that other families have generously shared. It’s now published as a little e-book and it’s absolutely free,I’m giving it away to anyone who wants a copy.
I had to do something, because I have heard so many parents’ own stories of abuses of power over the past few months that would break your heart. The e-book has only been available for two weeks, yet already it’s making a difference. Parents have contacted me to say that the e-book has made them feel more in control, more confident and more able to advocate effective and with much less stress.
My favourite comment, which I reproduce with the writer’s consent, is this one:
“I think the biggest thing about the booklet is that it makes me feel powerful, not in a nutty way, but like I can do it. You make it sound easy which makes it feel easy. It’s not rocket science, but the professional are pros at addling your brain, they make it so you don’t know your arse from your elbow. You simplify it. You put the muddly bits back where they should be”
Yet I’ve also been contacted by some professionals who are concerned that the e-book is “anti-professional” and unfair to them. The last thing I would ever want to do is to cause offence to anyone, and the overwhelming majority of professionals who work with our children are fabulous individuals who do everything in their power to help our children gain new skills, or to keep them well enough to enjoy life, or to help them developmentally in as many ways as they possibly can.
Yet there is a dichotomy. I’ll repeat two phrases from that last paragraph. “Everything in their power” and “Individuals”.
The systems and processes these people work within often means that their powers – to think outside the box, or to provide a certain piece of equipment, or to work in the way they believe is best for an individual child – are severely curtailed. These days it often seems to be much more about policies, procedures, bureaucracy and budgets than it is about disabled children.
As “individuals” they are, more often than not, sincere and caring people on a one-to-one basis, yet something happens to all of us when we come together as a group in a meeting that sometimes gets in the way of being able to exercise kindness and compassion.
Group Dynamics is a branch of the social sciences which has been studied for nearly a hundred years. I’ve been fascinated this week to read some of the findings from this research following on from being regarded as being “anti-professional”. It has left me thinking that the whole way our Public Sector services are currently organised is wrong. We have highly-skilled practitioners with the ability to help all our children who are taken away from this front-line invaluable work. They sit in meetings instead for a large proportion of their working week.
The more I read about Group Dynamics the more I realise that even these professionals must sometimes feel vulnerable, judged and not listened to in these very same meetings. If a professional is busy watching their own back, how can we expect them to support a parent who is being unfairly treated by another meeting member?
We have to find a new way of doing things. A kinder, more empathetic approach with parents and professionals working together in partnership to get the very best services, treatment and equipment for every child. We need to find a way of putting people – the children, their parents, and the professionals who work with them – back at the heart of all decisions, with the right sort of systems and processes in place so that they serve the people rather than the other way around, which is how it is now.
Kindness, partnership working and simplicity have to be the key words for change. None of them cost a penny, but they’re priceless.
I’m running five workshops over the next week in various workplaces. I’ll be meeting with teachers, social care professionals and health care practitioners, as well as parents. The workshops are going to be about working with people rather than against them, and being kind and supportive to each other rather than confrontational or thoughtless. We’ll also do a bit of brainstorming together about how to design recording methods that can reflect a whole person, rather than having to diminish and squash a personality to fit in a tiny tick box. Most of all, the workshops will be fun simply because happy people are the very best at everything, and our children deserve nothing less.
I’d love to know what you think. At the moment things aren’t really working well for anyone. How do you think we can make it better? If we can put all our heads together and pool our ideas and thoughts who knows what we might collectively achieve? If you’ve got any ideas you would like to share please leave a comment below.
Please let me know if you’d like me to come to your workplace or parent group for a workshop or a talk, you can email me at firstname.lastname@example.org .
If you’d like to buy a copy of “The Special Parent’s Handbook”,
here’s the link to the Amazon Page: