Back in 1992, when G was two and a half years old I was looking for a nursery for him to go to. His elder sister started attending nursery when she was around the same age and I thought he ought to be too (I’d also just had his younger sister, was pretty knackered, so there was a bit of an ulterior motive)
Finding a nursery for G wasn’t as straightforward as it had been for his older sister.
The professionals I spoke to at the time talked about him going to the local special school when he was a bit older (They didn’t have a nursery there at the time but were planning one). I’d accepted that he would eventually go to a special school but didn’t see why he would need it yet. He mixed well with his sister’s friends and their siblings and nursery is a pretty relaxed, informal type of place, so I naively suggested he could go to one of the local playgroups, with some additional support. I say naively because of the reaction I got….i.e. “well that probably won’t be possible” comment, with a shaking of head and an, oh dear, poor you, don’t you know how the system works yet, sympathetic kind of look!
So, after some discussion we were sent to visit a social services day nursery. This, I discovered is where “the special” children went if they weren’t old enough for the special school. I went to visit and to my horror found that all the “special” children were in a separate room at the end of the nursery (well away from all the not so “special” children) which wasn’t quite what I had in mind.
I’d envisaged G in a regular nursery, hanging out with the regular kids, but when I suggested to the nursery Manager that I didn’t really want him segregated in this way and the reasons why, I was told…
“Well I’m sorry you feel like that, you’re clearly not accepting the fact your son is handicapped, and you won’t be doing him any favours by being so difficult”
These words shocked me somewhat. Not so much the term “handicapped” because this was still being used quite a lot in those days but it was the first time I’d been described as “difficult” by anyone (except perhaps my parents when I was younger and deserved it!) It certainly wasn’t to be the last!
Over the subsequent twenty years I’ve heard the term “difficult” used a lot when referring to parents of disabled children or adults. It’s always grated and it’s always felt unjustified
It’s not just the term “difficult” either… there’s “over protective”, “controlling” and “unwilling to let go”. A corker I heard recently was from an education professional who said “People need to realise that these families are all grieving” Which I have to admit took me aback a little bit. Grieving, all of us, really? (perhaps I’ll leave that one for another time)
I don’t happen to think I’m a particularly “difficult” person because I don’t think that wanting the same for G as I did/do his sisters was/is an unreasonable aspiration. I don’t think that wanting equality of opportunity and inclusion is unreasonable. I don’t think wanting education, health care, social care support that met/meets his needs was/is unreasonable. I don’t think wanting to be listened too as someone who knows my son better than anyone else is unreasonable and I don’t think wanting to stay involved in my son’s life is unreasonable either. What is unreasonable is that I’ve obtained the “difficult” label for wanting all these things.
The way I see it parents have a choice. They can either be “passive recipients of care” and not be viewed as difficult (but get very little help and support) or they can challenge the status quo, gain the difficult label, become “a warrior” and get what they and their children need. NO contest really!
In hindsight this particular professional actually did me a huge favour saying what she said. Without knowing it she stirred in me a fighting spirit that prepared me very well for the years to follow. Consequently I’ve worn my “difficult parent” badge with pride over the years because it’s got me what I needed for G. But…
It would have been nice not to have had to fight!
Using these terms to generalise about parents isn’t helpful and it’s perhaps not surprising that we become defensive. Labelling parents in this way feels like there is a distinct lack of understanding about what our lives are actually like. Grouping us all together like we’re one large homogenous group is frustrating because we are unique individuals. Although we all have disabled kids we’ve all been on different individual parenting journeys, and we are a product of all those experiences. Its true to say that there are common themes and threads within these journeys and actually sometimes there is a bloody good reason why we come across as angry or frustrated.
The fact is as a parent of a disabled child you’re often forced into battle mode. As a result a “them and us” culture quickly develops.
On top of our already challenging lives this constant battling is exhausting and families often talk about the fact that it’s the system not their kids that cause the most difficulties. By the time your child becomes an adult you become so used to everything being a fight it becomes the default position. We need to lose this way of working for all our sakes!
Its clear that we need better, trusting and transparent relationships with the professionals who work with us. To build better relationships it would be really helpful for a start if they…
- Listened to us and attempted to understand our individual journeys. Try to think what it would be like to walk a mile in our shoes, think what they would do, act, be like, if this was their much loved child.
- Treated us as equal partners, work with us and value what we’ve done and do.
- Recognise that whilst they may dip in and out of our lives, we are in it for the long haul. We are often the only constant in our child’s life.
- Appreciated that whilst they may have expertise in their individual profession, we know our child better than anyone else, love them and care about them more than anyone else.
- Recognised that we are doing our best under often difficult circumstances. Just like them and other parents we may also be juggling lots of other things too, other children, jobs, running a home, ageing parents etc. etc.
- Didn’t take things personally. Sometimes it’s not them it’s the system were angry and frustrated with and they are just one in a long line of professionals we have to work with. They may be one of several over the last month or so who has said “no”, placed yet another barrier in our way or presented us with yet another thing we’ll have to fight for!
- Recognise that we are human’s with human failings. Parenting a child with learning disabilities is an extraordinary parenting experience with extraordinary pressures on our time, energy and resolve. There’s no hand book, we’re finding our way and sometimes we get things wrong… and so do they!
So if that’s what needs to change how can we help it to happen?
Parents of younger children who have used person centred thinking tools have said that life has been easier because of this way of thinking and working. I know from personal experience with G, through transition, that planning with him in a person centred way certainly helped and things started to make more sense. It also helped me to see him as the individual he is which is crucial at all times but particularly when they become an adult.
It makes sense to me that using person centred thinking tools foster better relationships between parents and professionals because they naturally encourage coproduction (an equal and reciprocal relationship between professionals, people using services, their families and their neighbours” or “the public sector and citizens making better use of each other’s assets and resources to achieve better outcomes and improved efficiency” – ref: Wikipedia http://en.wikipedia.org/wiki/Coproduction_(public_services)).
Person centred thinking tools foster better partnership working. They encourage better understanding of each other’s perspectives and experiences. You have to work together and include everyone and everyone gets their say. Working and planning is done in a way that promotes mutual respect and a spirit of openness and transparency.
By using these tools we are more likely to lose the “them and us” mentality. We can move away from” the professional knows best” or the “the parent knows best” view and instead look at how we can work together positively and productively for the best results for and with the person we all care about.
I dearly wish I’d had these tools at my disposal twenty years ago. Now I have them, and in case you hadn’t guessed already, from reading other blog posts, I’m on a bit of a mission to reach other families and professionals and spread the word.
Selling an idea that’s a win/win situation and makes everyone’s lives easier shouldn’t be too difficult …should it? Changing a culture of working though could be a bit of a slog.
So what I think we need is an army of parents and professionals, inspired and infected by person centred thinking. Maybe having a battle to stop us having battles is one worth us all fighting together… Just a thought!
Thank you! I am the mother of a 13 year old boy who also has severe disabilities; I have fought the system in Australia for the last 3 years to get the care my son needs. Ultimately and heartbreakingly it was necessary for me to “abandon” my son in order for the authorities to step in and help and he now lives in an environment where he has the level of care that he requires and is both safe and happy. As hard as it has been it is the best thing for my son, and my daughter, and myself. I haven’t been able to stop fighting though and our story still resonates with so much of your story in the battle to get the best possible care and education. I have been told recently (by someone very high up in the disability sector) that “I am not a mother, I am just a puppeteer who wants to pull all of the strings” and “your son’s education is not important”. I know I am not alone and even though my son no longer lives fulltime with us at home I am determined to fight as long as I need to. I have started a charity to help other parents in my situation with whatever support I can manage (in my spare time between a full time job, a business, a few local community organisation volunteer positions and caring for my 12 year old daughter) I am in the process of organising a community awareness program with a gala dinner. The path I have walked has at times been horrific and my aim is to save other families from some of the pain my family has endured.
Hi Kelly. Thank you so much for sharing this. What a hideous time you have had and what an appalling thing to say (re the puppeteer!) I’d thought I’d heard them al!!. G hasn’t lived with me, full time, since he was 16 and you can still care about someone without caring for them. Good look with your charity, check out http://www.oxfsn.org.uk which is a charity I helped start several years ago here. By families for families -peer support is the most powerful and effective and I wish you all the very best for your futures. stay strong and remember “don’t let the bastards grind you down” xx
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