Monday, 3 April 2017

Services: do they know what we think of them when things go wrong?

It's late morning, I'm sitting down with my first cup of tea of the day (which is way overdue as I'm struggling to readjust from travelling free woman to being mother, home educater of two and general washer upper and doer of all) and browsing through social media whilst the boys are busying themselves with an old engine in the garden. I need a rant to help shift this horrible feeling, so here goes!

Looking on Facebook it has struck me how often I read of parents dreading involvement with their child(ren), referrals and appointments with CAMHS, with disability teams, within schools. Whilst so many of us are desperate for support, at the same time the fear of the unknown holds many of us back.

There are cases where services get it right, where children are supported well, where families feel confident that they are understood.

Sadly though, there are more stories where parents feel threatened, misunderstood and scared.

I often wonder what would happen if there was an opportunity to have a frank discussion with the same people we are scared of.

For us, this is not going to happen, we are grateful to be away from CAMHS, and I have no intention of prodding them just to find out their take on things, but at some point, for families everywhere, I think this could be a useful exercise.

Apart from asking why masking is not taken into account, I would like to know a few things:

Why, when there are already suspicions that a child is autistic, are we sent on parenting courses not designed for autistic children? We are told on a daily basis how limited resources are and cuts, cuts, cuts, so why not send us on courses (which require time out of work, or childcare, or using up precious spoons for those of us who are autistic or chronically ill) that stand a chance of being helpful?

Why, when there are suspicions of autism, is there a focus on what parents have done to cause their child's mental health difficulties?

Why is there such a push to diagnose attachment disorder when there is no evidence of early neglect?

Why is the Coventry grid still used when it is so bloody ambiguous, and as reliable as tarot cards (ie. the reader/interpreter can take anything they want out of the vague traits listed)?

Why is it assumed so often that parents are dishonest and not telling you the truth?

Why can you, the go-to place for mental health problems in children and adolescents, many of whom will be neurodiverse, not understand that a child's facial expression may well not match your expectations of neurotypical matching of emotions?

And, for that matter, why do you not understand that many parents of autistic children (diagnosed or undiagnosed) are also autistic and may tell you very matter-of-factly about home life without being upset, or appearing vulnerable. This isn't because we're telling you porky pies, in my case it's because the things I've told you have been rehearsed in my head over and over to make sure I'm fluent during appointments, to make sure I don't waste time, yours or mine. I do my crying, my vulnerability, but it's at home, my safe space. It's masking, just like my son does, except you don't believe in masking, do you?

I often wonder if the people we see are so disconnected from our day to day lives that they cannot see we are real, intelligent, caring people. It must be much easier to assume we're a bunch of no-hopers inflicting our crapness onto our poor children.

If they knew what it was like from our point of view, would things be different do you think?

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