Thursday, 19 May 2016

Under scrutiny.

I have discovered that I have a  modus operandi when it comes to blog writing.

 Something will trigger a period of extreme stress and sleepless nights until one day I think "fuck it, I'll write about it".

 Writing down my thoughts and feelings inevitably mean that the doom laden loop in my mind becomes productive and more positive, although reading this prior to publishing, I realise it is not as positive as I'd hoped, in fact it's quite a rant!

 I must be learning, the most recent trigger was only yesterday. I have only had one sleepless night. 

Yesterday I received a letter from CAMHS, following a letter they were written by our family GP, who was unhappy that we had been discharged and left with no point of contact when our 11 year old (PDA boy) is still going through periods of feeling like death would be the best option, and will put things around his neck to show us how he intends to carry out his threats. These times coincide with stressful times at school - Christmas term, the run up to SATs.

 Whilst we are fully aware that he lacks the emotional communication skills to tell us how he's feeling, and talking about his death is his way of telling us how bad he's feeling, we are also aware that for many unhappy children, elaborate demonstrations have led to their untimely death. This we are keen to prevent, and had hoped that CAMHS would have the expertise to help our son to express his feelings more appropriately, or at least advise us how to help him reach that point.

 All parents have different ways of managing family life. Some are strict disciplinarians, some are very laid back. I'd like to think that all parents find ways that suit the whole family, look at their children as individuals and try to get the best out of each of them, but I know this doesn't always happen.

 Our parenting style has had to change over the years. We were always fairly strict with clear boundaries. If we gave a warning, we always carried it through. Routine comes naturally to us, in a flexible kind of way. Family life was peaceful and predictable. 

 When our son was six, shortly after the birth of his youngest brother, things changed. I can only imagine that a combination of things made his life more difficult to cope with. Our quiet predictability changed. He was no longer the baby of the family, school was adding more pressure as the children were encouraged to move away from play led learning to sitting down and doing as the teacher said. With hindsight it's easy to see that this was the point where expectations on our son were more than he was able to cope with.

 Our easy parenting style went out of the window. We desperately bought parenting books to try to curb our child's impulsive, violent streak. We became strict disciplinarians, with a zero tolerance attitude to any violence and rudeness. This served to increase the violence and swearing to a point where it was constant, but still we battled on. We must be doing something wrong, we must try harder.

 At some point over the next three years (in which violence and chaos reigned), we read about autism and PDA, and to our surprise, it made sense of our son's behaviour. Along with learning about PDA we learnt about the strategies that could help. They seemed at odds with the mainstream opinions that naughty child = lack of boundaries = needs more and more boundaries. But by that point we knew that strict discipline was, bizarrely, making things worse for our son.

 So we tried reducing demands, we tried what looks like pandering, allowing our son as much control over himself as possible, and it  worked. It wasn't a magic wand that miraculously took away all the problems, but it meant we were finally able to manage. There are still periods of time where our boy struggles and we have to go back to basics, reduce all demands and word things in a way that are not going to result in a punch, but on the whole, things are improving.

Our first referral to CAMHS saw us being sent on a parenting course. Webster-Stratton's Incredible Years is based on years of research and evidence. A tried and tested course which promises to rebuild the relationship between child and parents, to introduce effective discipline and helping the child to learn to regulate themselves. Brilliant, just what we needed. The chocolates and stickers we were handed as rewards during proceedings were patronising, but I like chocolate so no real complaints! 

Unfortunately, it soon became apparent that the course, whose premise was to build up emotional skills through play therapy and learning how to build a child's confidence through play, did not work on our son. In fact, it made things much, much worse.

We were asked to watch our child play, but not only watch, but to commentate on what they were doing (eg. "ooh, you're putting the blue Lego brick on top of the white one, that's a nice mix, good one"). This was where our problem started.

 PDA boy likes to play alone, undisturbed. He also doesn't like praise of any sort. Understanding this about our son, yet pushing him through another agenda showed him a complete lack of respect, which was never going to work.

 The Webster-Stratton approach, whilst I'm sure is life changing for some, was an unmitigated disaster for us. Violence levels rose back to unmanageable levels. We only had to go and sit with our quietly playing son for him to become visibly angry. If we persisted, he would attack us.

 I asked for advice, but was told to stick with it, great things would happen.

 I did stick with it for six unbearable weeks, but finally got to the point where we were desperate to get back to the techniques that we knew worked, reducing demands and allowing our son autonomy.

 What I didn't realise at the time was that by doing the best thing for my son and the rest of the family, I was failing to tick CAMHS' parenting course box, even though we had never asked for parenting advice.

 What I should have done was to write diaries and film evidence, even though by that point, with our year and a half of meticulous diary writing and evidence gathering behind us, we knew that those in charge weren't interested in seeing diaries or video evidence of our son's behaviour. By that point, just before assessment, we were already jaded by the whole system which seemed to work on the basis that experts (who often haven't even met the child, or have observed them briefly whilst they are masking) know the child better than the parents do.

 Our next CAMHS fail was turning down involvement from Prevention Services.

 The idea was that someone would visit us at home every few weeks to try to build up a relationship with the boy. I turned this down for several reasons.

 The boy has been in school for almost seven years. He sees the same teachers day in day out, yet not one of them can see the boy we see at home on a daily basis. Despite seeing these people every day, he has not formed a trusting relationship with any of them.

 In school our son is like a completely different child. Any percieved relationships are usually a result of copying and masking, and largely stay within school hours within the school's boundary.

 He will not in any way open up to or trust a stranger visiting sporadically. 

 Home is our haven. A safe place. A visitor in an official role is very difficult to cope with for my boys. If they have warning of a visit, they will time with perfection a disappearing act. In order to prevent them from buggering off, I must therefore keep the visit a complete surprise, which means explosive behaviour as soon as our visitor has gone. And of course, the children will mask perfectly and appear to be engaging little angels, incapable of violence or language that would make a welder blush.

 We have learnt from experience that this leads to trouble. Once again we are not believed, as no-one outside of immediate family can see any of the issues. It's assumed we are being dramatic, of fabricating our childrens' difficulties. It's assumed we are poor parents, and we are sent "Parenting for Idiots" guides, even though the skills we have learnt over the years mean we could out-parent many of our peers from a hundred paces. 

 I turned this down because, once again I felt that it would make life more difficult, and wouldn't address the problems we were keen to be advised on.

 I can see that from CAMHS' point of view, it appears that we are making excuses and being obstructive to the help that they are offering. With hindsight I believe I had overestimated what CAMHS could do to help our son, but I mistakenly thought that they would be interested in our views and our expertise with our children, which I can see now was naïve.

 Our PDA way of parenting has improved things no end. We have gone from being attacked three or four times a day to three or four times a month. We have done that, with the help of some online friends and various books and resources. We have improved things despite outside agencies' "support".

 Ironically, in being responsive to our childrens' needs and caring for them in a way that they respond positively to, we have unwittingly pissed off CAMHS because they want things doing their way or the highway, assuming that parents don't know what they are doing, putting us through one-size-fits-all courses that tend not to work for children with PDA (but because PDA is not in the manuals, they don't need to acknowledge it!).

 Perhaps it would be better for many families if CAMHS were open and honest from the start about their expectations of families involved, and perhaps it would be more helpful if they could start any investigations with the assumptions that families are being truthful, know their children and want the best for them. I am not good at reading between lines. If a parenting course isn't helping, unless someone clearly says to me "this is a hoop you have to jump through", I won't know and will bow out because that feels like the best decision for my family. 

 In the end, we are human. We are doing our utmost to raise happy, healthy children. 

 The main lesson I have learnt from our foray into CAMHS territory is that ultimately we know our children best.

 If PDA boy is so stressed that he is demonstrating the method in which he wants to die, then I will use my knowledge and expertise to do what I know will help him.

If that means taking him out of school for a few days to decompress, to recover, then so be it.  

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