Friday, 3 March 2017

The Blame Game.

The poll and subsequent newspaper articles from the weekend has led to a multitude of blogs written by parents fighting their corner.

Yet again, the actions/opinions of some professionals has left parents feeling vulnerable and open to attack.

This is something that is never far from my thoughts anyway, given the catologue of events over the last few years, and right now I'm feeling angry about it.

We all know that support is hard to come by, and in many cases is non-existent, we know that, it's not ideal, but in this world of cuts and ever decreasing funding, it's inevitable that the poor and the vulnerable are going to bear the brunt of it, because they are perceived as being a drain on society, and the very wealthy, who manage to avoid tax and accumulate wealth with ease, and who arguably are more of a drain, are untouchable, they'll be fine. Even in the face of mass child abuse scandals there is protection of the establishment.

So why are those of us with disabled children so distrusted? What on earth have we done to deserve this level of suspicion? Surely in this day and age it can't simply be down to lack of understanding, this is, after all, the age of the Internet, with any amount of information available instantly, at the touch of a button. When yet another expert says they haven't heard of PDA, when we're told by a teacher "but we can't see it", when we're judged, not only by members of the public who are allowed to be ignorant in these matters, but by the very services who are there to support our children, it's very difficult to not start taking things personally, and impossible not to worry about how things will end when those in so-called supportive roles see things from narrow viewpoints which don't allow for the huge spectrum of behaviour seen in our children.

Talking to a doctor not long ago, there were hints that there was a limit of diagnoses an area can make. I have no idea if this is correct or not, but it certainly rings true for our local CDC.

PDA boy passed the threshold of ASD in both the ADOS and DISCO assessments, yet this was ignored. A follow up meeting with the CDC's co-ordinator made it clear that my husband and I were the problem. We had too many children and therefore didn't have time for PDA boy (ironic as at that point he was having to be constantly supervised and had our attention on him most of the time!), he was kicking off in a bid to gain our attention, and he was naturally a difficult child anyway, so there you go, problem solved. As this was all unexpected to hear, instead of setting my jaw and arguing my point, I sat there silently, all my printed evidence left in its folder, and tried not to cry.

Other CDC excuses I've heard locally over the last few years, with children who have all eventually been diagnosed with ASD:

He's an only child, he hasn't been taught how to interact with other children.
You had PND, this has caused attachment issues.
You live on a farm, you haven't socialised her enough (yes, really!).
She's a handful alright, let's send you on a parenting course to teach you how to discipline your child.
Well school manage ok, it must be home that's the problem.

You get the gist, and if I listed each and every excuse not to diagnose a child I'd be here for too long and my boys would be more feral than they already are.

The common factor amongst them is, yep, you've guessed it, the parents. We're just not good enough, we didn't have enough children, or we had too many, we've picked one of our children to neglect (the poor little bugger!), or to not discipline, or create such a rigid routine that it makes one of our children autistic (yes, this was an excuse too).

We thought we'd waved goodbye to the Refrigerator Mother theory, when in reality it's been replaced with ever more subtle methods of placing the blame squarely with parents. For some parents, even after a diagnosis has been made, this still continues.

A child's needs are too often irrelevant without a piece of paper proving they have a certain condition, parents' intuition, which should be valuable, is ignored because we are over anxious, or we are pushy and looking for gain; unfair academic advantages for our children, financial support - we want the thousands of pounds that the government willingly throw at us feckless families, oh, and all the respite that parents of disabled children get.

Except where is it? Where is the support? Where is the respect? Where is the understanding of how bloody hard we work day in day out just to keep going? Where are the academic advantages? Because in my few years worth of SEN parenting malarkey, I'm yet to see much.

What we have seen by the bucketload is others' poor opinion of us. Bad enough when it's passers by in the street, or family members, but perhaps worse when it's the very people you are looking to to help. I can't describe the sinking feeling when you realise that yet another support worker or teacher hasn't a clue about PDA, or your child's presentation of ASD, but instead of saying "I've never heard of that, do you have any information?" or "can you tell me a bit more about your child so I can work out how best to help?", it seems to be more important to hold up their professional honour by not admitting lack of knowledge in any area whatsoever. No-one is expected to know everything, even a GP will look things up to make sure their patient has the best, most appropriate care, but it seems that no-one can question a childcare expert, or expect them to take on new information, because it's seen as criticism.

In the last five years, we have been lucky enough to have involvement with autism outreach services. Now these people are examples of how things can be done well. Parent input was asked for and utilised, there was clear understanding from these people that whilst they were very knowledgeable, each child was an individual and must be treated as such, and that parents were an excellent source of information to help the child. If this overworked, understaffed organisation can be on the right track with regards to understanding not only the child, but their family too, there is no excuse whatsoever for the treatment dished out to so many families, who are simply trying to do their best for their child.

I'm aware that I'm in broken record territory here, and I apologise, but I feel so strongly about the deeply negative effect this has, not only for the child and their families, but in far reaching ways too. There is a woeful lack of understanding surrounding autism, and many people; parents of autistic children, autistic adults, even autistic parents of autistic children, are now sharing their experiences, offering their insight to schools and other organisations, but there is still a dismissive undercurrent towards us, and an impression that many schools aren't really bothered about trying to improve things for their autistic pupils, beyond taking part in basic training sessions, receiving a certificate and ticking that particular box, with no need to even put what has been learnt into practice, if my limited experience is anything to go by.

A poor attitude to disability is such a barrier for our children when all we are doing is trying to help them reach their potential, or at the very least for them to be happy. This is not something we should be vilified for.

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