Thursday, 31 March 2016

CAMHS. How could they have helped us better.

Today I recieved our discharge letter from CAMHS' services.

This was met with mixed feelings. Disappointment that they clearly didn't understand the issues that we have, and relief that we were away from them at a point when they were starting to feel like a threat to our family.

We were originally offered a referral to CAMHS nearly three years ago. At that point our then 8 year old was regularly threatening to kill himself, he hated himself, he would put things around his neck to show us how he was going to do it, knives and matches had to be kept locked away as he would use these to threaten others.
Through questionnaires, our boy was identified as being highly anxious, referred onto a parenting course, then promptly discharged as he was on the ASD diagnosis pathway.
The parenting course was not, as you might imagine, specifically for children with suspected ASD, it was a bog standard course which largely assumed that parents didn't have a clue how to respond and care for their children. Out of fifteen parents attending, only one gained anything beneficial out of the course, and I'm sure it was no coincidence that near the start of the course, her six year old son started to receive more appropriate support at school.
For the record, we were not floundering, we were very aware of how to help our son, and we were desperately trying to get somebody, anybody, to listen to us and take us seriously, and not only that, we wanted someone to believe what we were saying and support him at school.

So that was our first, brief encounter with CAMHS for that child.

Following his diagnosis in June 2015, we asked once again for him to be referred. He was (and still is) regularly threatening to kill himself. He still puts things around his neck. We still have to keep knives and matches locked away. He is still often very, very angry and hates himself, although getting his diagnosis and being able to understand that he isn't bad has helped with this.

Again, he was identified as highly anxious.

Our first appointment did not go to plan. The boy needed a huge amount of building up in order to go to the appointment in the first place, luckily we had been able to choose a slot which meant he had a month to get used to the idea. On arriving and parking, ten minutes before the appointment was due to start, my phone rang - it was CAMHS cancelling the appointment. The lead therapist had had an accident the week before and couldn't make it. Fine, these things happen. For my son though, this was the end of the world. This meant that the next arranged appointment, three weeks later, he refused point blank to entertain the idea of going. Why would he? In his eyes it would only be cancelled again!

So I went alone, having spoken to the therapist. At this appointment I talked about our worries, for now and for the future, we discussed his many strengths, but for the most part, because this was CAMHS and it was about helping him with his difficulties, we talked about the difficult parts.

In my first blog post I talked about masking, and how some children are experts at covering up how they feel.

At CAMHS, in my area anyway, if they can't see the problem, it doesn't exist.

I managed to build my son up again, and he agreed to attend the next appointment. He did open up a bit, but he masked, so appeared happy and relaxed.

The next appointment was arranged for my husband and I to attend alone.
We both came out feeling very uneasy. All the difficulties we were having were subtly twisted to be about us and our stress levels affecting our son. She was also very sceptical about him having autism, and felt we were putting too much emphasis on autism and PDA to explain his behaviour. She also told us he wasn't anxious at all (despite being identified as such twice by their own questionnaires ). At that point we were speechless. The violence, level of control he so often needs, avoidance of everyday demands and other behaviours were all typical of PDA, and were traced back to very high levels of anxiety. He is usually oblivious to anyone else's feelings.

The next time we had contact with the therapist was at a meeting arranged at school, with the lady from Autism Outreach. The therapist turned up half an hour late, which was not a good start.
When she did turn up, it was clear that her agenda was not to support our son, but to be the voice of blame, along with the head teacher.
Her only contributions were to ask how my stress levels affected things, something we had already covered, and to ask where my husband was. My husband has attended so many meetings, we are now at a point where we realise that it's pointless him taking any more time off work for them, instead we save his precious days for times we can spend together as a family.

It was this point when I realised that CAMHS had not helped at all, but had the potential to continue twisting things and disbelieving us.

In some areas, CAMHS are very good. In our area they are well known for not being helpful until a child is actually self harming or attempting suicide. I believe this is too late.
Suicide rates amongst people with autism are higher than for those without.
At the point where we are with our son, feeling awful about himself and calmly talking about his plans to kill himself when he is older, I feel that they are missing the early stages where some therapy would really help him, and prevent suicidal thoughts from becoming intentions and later, attempts. I fully believe that some action at this point for children would lessen CAMHS' workload in the long run.
I believe they are being shortsighted.

If anyone from CAMHS ever reads this, this is how I think our case could have been handled better, and more effectively:

1. Listen to parents and believe what they are saying. If they are willing to show you video evidence to prove what's going on, watch it, see what the child is doing in the safety of their own home.

2. Move away from the misguided, outdated nonsense that children will always show difficult behaviour in every setting, because it simply isn't true. You may see a delightful, apparently happy child sitting opposite you, but if we, as parents, have willingly opened up and asked for help, you can bet your arse that we are being truthful and that the child needs help.

3. Give advice. You are the experts. We were told so many times that it wasn't in CAMHS' remit to hand out advice, not at the tier we were at. This is crazy! I would have cut my right arm off for some good advice about helping our son mentally, I am not a mental health expert. Recommend books, apps, anything that might help us reduce the number of times our son decides death is the best option.

4. Another listen - listen to what the parents are saying and build the case from there, don't twist words, make your own assumptions and write them down as fact, because when parents do eventually receive their discharge letter, it will read as a work of fiction, bearing no resemblance to the information they have given you.

5. Please don't dismiss PDA. It may be controversial to you, but to us, it has usually been a lightbulb moment, finally an explanation that fits our childrens' difficulties. At the very least see it as a useful guide to explain the high anxiety, and to suggest strategies that may actually work.

6. Don't make us spend an hour and a half filling in questionnaires for you to then dismiss them because they don't fit your version of events.

7. If you meet all parents assuming that they are lying, it's not just the parents you are letting down, but a vulnerable child. Your actions (or lack of action) may have serious implications for the rest of that child's life.

Right now, I hope to god that we will never need the services of CAMHS again, or if we do, that we can transfer to another area where we won't be dismissed and blamed.

It's difficult enough having a child with PDA without having to then feel attacked by the services whose sole existence is for supporting our children.

Sunday, 27 March 2016

Pressure of SATs.

The soundtrack of our evenings is undergoing a change.
Whilst we are no strangers to bedtime meltdowns, nights where bedtime = all possible anxieties, past and present, coming to the surface and preventing sleep, we are now seeing a new level of upset.

This last couple of weeks we are seeing melatonin refusal. He's pissed off, and that's how he wants to be. He doesn't want to get to sleep easily. He's raging......about SATs.

PDA boy is in year 6. And don't we know about it!

When we pick him up from school, it is immediately apparent that something is wrong, even though his facial expression will show happiness, his eyes tell a very different story.

Typically, as soon as he sits down in the car, the anger will come streaming out, occasionally with tears, but mostly just a cold, hard rage against all the injustices (and there are many) of the day.
This needs careful managing, frequent snacks and sensory activities to attempt to keep things calm and prevent a meltdown. A few hours hard work will usually mean that we have an hour of relative calm before his bedtime routine begins.

Sometimes we can distract him through to the point where he is in bed, with inventive use of games, distraction, subtle manipulation and a promise of a short YouTube video before it's time to settle.

At the moment, SATs rage is winning.

Every day at school, the fact (that no-one can possibly have missed!) that SATs will soon be upon year 6 is mentioned yet again. I'm not sure this drip-feed is necessary. It doesn't seem to serve any other purpose but to constantly top up the stress levels of the small group of ten and eleven year olds.
Add to this a SATs club every week, SATs booster books instead of homework, the message is already over egged.

For a neurotypical child this must be difficult.

For our child, this is intolerable, and given his PDA, the pressure is having a reverse effect. He is bright, and in a relaxed state when he is allowed to pursue his own interests, we sometimes wonder if our son has the potential to be a genius (of course no parental bias at all!).
In school though, he is struggling with the workload. He is enormously put out that some of the work the teacher is hastily preparing is work that in previous years was aimed at year 8 pupils.
At home, when he is in a rare relaxed mood, he knows all his times tables. In school however, he barely knows his 2, 5 and 10 times tables. He finds this frustrating and humiliating.
I believe this is a sure sign of his anxiety preventing him from working to his true potential, and banging on and on about SATs is not helping at all.

Bedtime has once more become a nightmare, our boy is begging us to kill him, he is kicking and headbutting walls, throwing things, punching.
His ability to swear at any opportunity is outstanding. What a pity he isn't being tested in this area rather than SPAG and times tables!

I do understand why SATs are necessary, but I most definitely do not understand the need for such a massive build up, and pressure for children to out-perform their potential.

If year 6 was treated as a normal school year my son would probably "perform" better. He would learn more.

I'm not sure what this government's overall aim is with regards to education, but I am pretty sure that with this child, it's not working.