Yvonne NewboldParents 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.

Toby Newbold

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?

Listening quote

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.

Kindness Simplicity

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.

30 winning ways to better meetings

 

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.

Yvonne Newbold Kindness

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.

Yvonne Newbold

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 yvonne@yvonnenewbold.com .

 If you’d like to buy a copy of “The Special Parent’s Handbook”,  

here’s the link to the Amazon Page:

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Why can’t meetings be kind?

3 thoughts on “Why can’t meetings be kind?

  • November 16, 2014 at 1:17 pm
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    Dear Yvonne this is fantastic, exactly how it has been for myself and hubby over the years trying to get support for our daughter with Selective Mutisum and then our sons with ME. We are and have been treated with contempt when we dare to question, well that’s our job as parents. We do know our kids and how their lives are affected with whatever condition they have it affects their siblings too. We should be listened too and treated with respect, instead of being classed as “over protective over bearing, only compliant and work with professionals until a disagreement then this is used against you. So many underhanded comments. Accused of lying, being blamed for our kids medical conditions. They have absolutely no idea these I call them “so called professionals” they should realise the emotional harm that they cause not only to the parent/parents but to the child/children this is then carried on in school. It is very damaging, you are already coping with looking after your special needs children who are always “well behaved at school” so when you have issues at home it’s, yes you guessed it the “parents fault”. Our daughter we have had years of hell battling, to get teachers and professionals to understand her condition, they were told not to spotlight so some teachers seemed to go out of their way to do just that. There have been some wonderful Speech therapists who have tried to help over the years, but what is the use of them doing reports of do’s and don’ts for this then to be ignored. It would be wonderful for us as parents to be listened too, our only concern is getting the right support for our children why can’t they just understand this instead deformation of character because we choose to stand up for our children? This is not a choice we have to do this for our children.

    All these years of fighting has got my children the help and support they need so, if they choose to think I/we are over protective so be it.

    Thank you for this Yvonne I could be right there with you at these meetings exactly how we have been treated xx

    Reply
    • November 16, 2014 at 2:22 pm
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      Sophie, thank you so much for taking the time to write so eloquently of what your family has had to face. I’m so sorry you’ve had to go through so much to get the right care and treatment for your children. It’s so hard when the professionals won’t listen, when they point the finger of blame and when they won’t co-operate with parents, and it’s even worse when they won’t follow the protocols written by other professionals. With many it must be deep insecurity coupled with arrogance – a very difficult mix to counter. The years of the “drip drip drip” slurs and derogatory comments take their toll and wear us down, and it also impedes the relationships we have with the very best professionals too. I do think that the whole way public sector working is managed helps to create this culture of blame. The professionals don’t feel safe either, they have to work in an atmosphere of finger-pointing of blame too, which only encourages that blame to be passed all the way down the food chain to those of us right at the bottom – the parents. Things have to change because none of the professionals feel secure or well-supported, so they don’t have the capacity to support us and back us either. As things stand at the moment it’s “lose-lose” all round, and that’s not fair on anyone.

      Reply
      • November 18, 2014 at 3:18 pm
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        Thank you for your lovely reply 🙂 Yes I agree we as parents in our experience are made to feel that we are beneath these professionals, they do not listen and hate being asked questions, it is then turned around on us the parent as being uncooperative etc, when all we want is the best for our children. No one actually really knew how to help my daughter because of the complexity of how her Selective Mutisum affected her. The worst thing to do was to force her to speak or spotlight her this is what did happen all the time. We had so many meetings that were very frustrating and upsetting, but this we need to do if we want the right support for our children. We need the support from professionals but it has to be the right support and not just followed by a tick sheet.

        xx

        Reply

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