Looking for a ‘positive’

I’m a pretty positive person and always try to look for something good in any situation. This has had its challenges in recent weeks, months, years. It’s difficult sometimes, but I always try.

In my work I see and hear some fantastic stories about how people are supported. How people with learning disabilities are being actively supported to live the lives we, as families all want for them. How families are involved and truly listened too, respected and treated as partners.

I also hear things that make me want to scream with frustration!

Connor’s death and the serious failings and neglect by those charged with caring and supporting him was the ultimate frustration. How could this have happened?

How could trained staff and professionals, people who must have gone into this line of work because they are ‘caring’ people, be so careless that a young man actually dies in their care? It still beggars belief!

The treatment of his family during his stay at STATT was sadly all too familiar. The ‘he’s and adult now’ line is used far too frequently in our world as either a ‘get out clause’ to make their (professionals) lives easier…don’t want those pesky parents thinking they know best when we’ve got qualifications an all that! …or its sheer ignorance of what being a parent (any parent) really means. I mean how many parents ever stop being a parent, ever stop worrying?….and even when your non-disabled kids turn 18, do you really think of them as truly a proper adult?

Then there was the ‘mother blaming’ . Even at the inquest into his death, the only defence there seemed to be was to deflect the blame to ‘the mother’ as Sara was disrespectfully referred by one legal rep. It makes me weep, because sadly this attitude is all too common.

From the moment your child gets a diagnosis (if indeed they get an actual diagnosis or even if there is no definitive one) judgements are made and files are kept. Your parenting abilities and you come under intense scrutiny by everyone…even strangers in the supermarket. And, God forbid you should disagree with a professional. Pin on that difficult ‘mother’ badge and be prepared to wear it forever if you do!

I use the word ‘mother’ because I am one and it’s usually mothers but, fathers get the reputation too of course. While fathers get accused of being ‘aggressive’ …mothers can get the reputation for being ‘over emotional’…’over protective’ ….and apparently both reactions can upset some staff/professionals. Instead of understanding the frustrations that may have led to this response and looking to their own practice its all too easy just to character assassinate the parent!

I could blog about this stuff forever, but it’s too depressing and I’m ranting now. And, I started this post attempting to focus on the positive!

What can be positive in all this, I hear you ask?

Well, tonight I went to a meeting. A families meeting arranged by the organisation that supports G. They’re called Style Acre….yes I’m naming them, because they bloody deserve a mention.

The meeting was arranged to introduce the new CEO. He happens to be someone I’ve worked with at Dimensions and I was really pleased he got the job  because he absolutely has the right values. (Even though he has some ‘big shoes to fill’ because his predecessor was amazing!)

It was a great meeting and it was so refreshing to hear a packed room, full of parents who, quite frankly were raving about the support their relatives get. They talked about how their relatives staff kept them informed and involved and how their kids couldn’t wait to get home after a visit back to them. G does this too and pushes me out of the door if I spend too long talking to his staff when I take him home. It’s a good sign to me that he really likes where he lives!

The staff talked about how much they valued the input and involvement of families. With a real passion for making the lives of people like G better and obvious sense of joy in the work they do! A real sense of we’re in this together, we’re listening and we will act on what you say!

And they don’t just talk the talk, they act and deliver. When I arrived I chatted to the manager of G’s house, (L) who had emailed that day to let me know that a care manager wanted to come and visit G to look at his support plan after a recent assessment. The Care manager hadn’t invited me and L insisted that I needed to be there. We arranged a convenient day so I could be but I couldn’t help think why wouldn’t the care manager want to involve me?

I’ve often spoken about G’s support team but it was fantastic to hear that my experience wasn’t exceptional….it was the norm for others there too!

It’s reminded me that what we are striving for, good working relationships and real partnership (that word was banded round more than once by a number of people!) is possible, with the right values and attitudes and has filled me with a little more sense of hope.

A glint of sunshine on a gloomy day!

About Oxfordshire Family Support Network

Oxfordshire Family Support Network (OxFSN) is a not-for-profit organisation run by and for family carers of people with learning disabilities – both children and adults. Oxfordshire Family Support Network (OXFSN) was set up in 2007 by family carers who wanted to use their experience to help others in the same situation, based on our belief that family carers are experts by their lived experience.
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