As I have stated before, I have always read around the subject, mainly due to my Father encouraging me to do this. This I believe has held me in good stead, particularly when liaising with teachers, paediatricians and psychologists about the boy.
One aspect of this that particularly frustrates me is when my knowledge conflicts with that of a professional. Two years ago I would tend to not say anything and doubt what I had read before, returning home to check and find out that there was a discrepancy. This would add to my confusion. To make matters worse I would apply the latest recommendation by the professional to the boy with horrific results. It got to the point where he dreaded me meeting with other people to discuss his behaviour as he never knew what tactics I would be trying next. The main tactic that was generally advised were rewards and the dreaded chart. They never EVER worked and I loathe them. I will talk more about why in another post as today I want to concentrate on how advice can vary widely which adds to our difficulties as parents.
I was visiting a client recently and met another colleague from a different professional background. She had attended training which discussed the fight flight response in humans and how this affected children with autism. She reported that the adrenaline surge in the body actually prepares the limbs to either run away or lash out at someone. There is also a depletion in oxygen to the brain so there is less rational thought as the energy is directed to the limbs. The consequences of this is that the child will either hit out or run away.
I thought about how this related to my experiences, right from an early age the boy's temper tantrums were long and hard. They were also very physical. There was one incident when we were trying to leave the swimming pool and he created such a noise that my husband thought other people were thinking that the boy was being abducted. Another time, the boy did not want to go to school and was kicking me as I drove the car. Naturally my reaction at the time was to shout at him which of course made the situation a lot worse. When he was diagnosed with dyspraxia, although we were still recommended rewards charts ( I just used to smile and ignore them), we were more aware of triggers that could cause a melt down, and managed a bit better than before.
It's like feeling around in the dark isn't it? Waiting for someone to turn on the light and to then say "Ah yes now I see". That happened to me last week with this colleague. If I had not have met her, I would till be fumbling. The boy was not being naughty at all, he was so stressed and nobody understood him. How many other children are not being heard?
The main clash was between myself and an educational psychologist when he started secondary school. Due to the fact that the boy was managing most of the time to keep it together in school she would not diagnose anxiety. She also observed some of his incidents of distress and again dismissed as it being behavioural as he was quick to calm down when he was in a place of safety. Apparently the sobbing did not last long enough for her expertise in this area. A GP, a psychologist all argued that it was anxiety but the school did not listen to them only her.
Some criteria for referrals in children's mental health services dictate that the behaviour needs to be present in two settings for an assessment to be made. I would feel instinctively that the boy did not feel safe to display any emotional distress within school. Instead, as with most children, he would hoard it in a nice big pile and let go when he got home. I have since read this in books written by experts on Dyspraxia too. It makes me wonder how many more children and young people are suffering due to this criteria. It is not a one size fits all type of condition which is why most of it is regarded as a spectrum.
Our GP was also querying Aspergers when he referred the boy to children's mental health services. (CAMHS). We informed the school of this to be told that it wouldn't make a difference to how they would treat him. It did not help that the person we saw in CAMHs described the boy as being quirky but not Aspergers.
The implications of this was that the behaviour advice was handed out in droves, rewards, special time together, not speaking to him if he did not do as he was told, deprivation of his X box. These kinds of strategies unsurprisingly led to more meltdowns so we were taught how to react non violently to him which involved the suggestion of him and us signing an agreement that he would go to school ( I also smiled and nodded at that tactic). Interestingly the educational psychologist did not agree with non violence response which added to our confusion as to what we were supposed to be doing. The final offering that was professed to us was a parenting course ( I again smiled, nodded and later turned that down too.)
When the boy eventually sunk into a depression due to the "non existent anxiety and Aspergers", I got into the driving seat so to speak to sort him out. We saw a private psychiatrist who diagnosed everything that hadn't been, prescribed anti depressants and suggested that I access experts who could help me with the Aspergers side of things. I read and read and to my horror I discovered well known experts on these matters confirming everything that I had thought about the boy. Tony Attwood in particular describes how the cause of the problem for some children is that they can not communicate extreme stress at school, it is not the parent who does not know how to control the child. There goes the two settings theory.
I know that Health professionals will warn about the dangers of the Internet, I do it myself with the families that I work with . But I also know of the good ones too and it is with this in mind that I have created a page with useful links for you to research too. Time and time again I hear stories of parents struggling to cope with the behaviour of the children and being given inappropriate strategies to manage them. It is crazy that we should become the experts and guide the people from whom we seek advice. I can only liken to it that being a nurse I am no expert on the inner workings of the heart, but I can talk forever about atopic eczema in children as this is in an interest and necessary for my role as a Health Visitor.
It is generally first line professionals that parents are referred to when a problem is suspected. Sadly it seems that the experts are at the top of a tall tree that can only be reached when the child is very unwell. The charity Young Minds are relentless in their campaign to get this changed and it seems that politicians are also now realising that practice has to change for intervention to happen earlier. However there is absolutely no shame in getting up and turning on that metaphorical light ourselves if we can. The information and advice is out there we just have to reach out and not be afraid to share it with those who are working with us.
Until next time, Clairex
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