Saturday, 31 December 2016

Out with the old, in with the new.

Time flies when you're having fun. It also flies when you're stressed up to the eyeballs, as I've found out this year, last New Year only feels like a couple of weeks ago, I can't believe that 365 days have flown by so quickly.

2016 has an infamous reputation for many people, and I can't think of many people who won't be pleased to see the back of it.
For me it's had its ups and downs. I haven't written as much as I'd like to have written, real life has a knack of getting in the way, I have a whole load of draft posts which are far too bitter to ever post, yet are available for me to read back in order to remember the parts which have gone wrong so I can work out how to right them again.

In the style of a school parent's evening, I will try not to dwell on the difficult parts too much. I will aim for a shit sandwich; the good, the positive plans to guide me into the new year, and wodged between them, the bad.

There have been some real high points this year.
Writing this blog has been great, some of my posts have had thousands of views, which I can't quite believe (me, writing stuff that people actually want to read!). Having a voice to vent frustrations and share some of the thoughts that keep me awake at night has been very therapeutic and a welcome boost to my self-esteem.
My diagnosis earlier this year has enabled me to learn more about myself and more about autism, it has also had the benefit of allowing PDA boy to feel a bit more positive about his diagnosis as he's not alone and we have interesting chats as we discuss how autism affects us in different settings and with different people.
We have had times where we know we have got things right, and we have some lovely family memories scattered throughout 2016, which serve as a constant reminder that, no matter how hard things can be, it is always worth battling upwards and onwards.
Although they have nothing to do with PDA, a real bright spot for me has been getting our pigs, I still look at their little chubby faces and can't quite believe that we are pig owners.

Unfortunately the low points have been many. I don't know if this is because my mental health is a little wobbly, therefore anything negative that happens knocks me back and things appear intolerable. I do have a very good track record for crawling back out of this though, I'm still here and ready for the next challenge.
School has, again, been difficult. PDA boy moved up to secondary this September, and after an apparently positive start, complete with several ignored warnings from me that all was not well, he has crumbled and spent the last few weeks at home, too anxious to contemplate going to school. Our predictions of extreme masking followed by a breakdown of ability have unfortunately been proved right.
As ever, the balance of power in these situations lies with those who have little understanding of autism, let alone PDA, and the people whose voices count in the endless meetings have no interest in learning about or supporting the individual. Reasonable adjustments are convenient to school, but are impossible for PDA boy to access at this time, and as parents, our only acceptable role in this mess is "just get him into school, ok?"
This imbalance of power extends to CAMHS, and their rigid views on autism and their complete lack of knowledge about masking.

This leaves us, as a family, feeling very vulnerable. PDA boy desperately needs support, we have ideas how this would look, but no idea if these strategies would actually work because no-one has ever tried them in a school setting, despite years of providing information in an attempt to proactively keep the boy feeling able to cope, and sharing as much information as we can. At this point in time we feel that we have failed him, or at least, the system has failed him.

So now we are at a point where we plan how to proceed. We know that if PDA boy is to remain in school he will need to be supported, so January will be a time of communicating with school and hoping that they will start to understand PDA boy and see that despite his calm outward demeanour, he is an incredibly anxious boy.

2017 will be a year of reinforcing PDA strategies and re-reading The Explosive Child.
During 2016 we slowly realised that our oldest son ticks almost every box for PDA, he scores highly on the extreme demand avoidance questionnaire, it's also looking like he has OCD and Tourette's, so for him, this will be a year of trying to help him to tolerate his siblings and help him to feel better about himself. He doesn't want to go down a route of assessment, and as he is 16 we will respect that, but will be ready to start the ball rolling if he chooses this path.
2017 may also be a year where our youngest is assessed. At 5, he is showing many of the signs that his brothers showed at this age. His first year of school, where he struggled and cried an awful lot of the time, taught him to only show a happy face, sadness and tears were punished, so we know that masking will be an issue with him too. We found with his brothers that issues became more obvious as they got older, so we are still considering whether assessment now may be a pointless exercise, living, as we do, in an area that requires stereotypical, obvious autism in order to diagnose and support.

2017 will also hopefully be a year where I start to take on more myself. I stopped work when PDA boy was born, I found juggling work with three children impossible, and in more recent years we have found that due to the complexities of life, me not working has made life much easier. No paid job could be as flexible as we would need it to be, so for the time being we accept the inevitable lack of funds, but I'm hoping that some changes this year may lead eventually to some self-employed work so I can be as flexible as I need to be.

It's with some trepidation that I approach the new year, and I will be doing my upmost to get the most out of 2017 for all the family, and hopefully move on from the more challenging times, or at least have the strength to keep us all plodding on.

Thank you to all who read this blog, it's been an interesting first year.
I wish you all a calm and peaceful 2017.

Tuesday, 20 December 2016

Own your neurology, be who you are and be fabulous at it.

A lot of people in life have the opinion that a "label" of autism should be avoided if at all possible, as it marks a person out as different, it makes them feel bad about themselves, and it makes others think differently about you.

Today, I am here to say a big, enormous, resounding...


Whether we are neurodivergent, neurotypical, disabled, black, white or anything else in the wide spectrum of human life, we owe it to ourselves to be uniquely, wonderfully, us.

Because the thing is, you are who you are, and unless you put in a huge amount of effort to reinvent yourself, usually at a personal cost, you can't change that.

You can live your life trying to be the version of you that others find more acceptable, but if you deny who you are, or you deny who your child is, at some point this is going to backfire. This is the stuff that low self-esteem is built on. Suppress the real person and they will grow up knowing they are not good enough. Dismiss the difficulties and the person may assume that, because they are the same as everyone else, they are simply crap at being a person.

A "label", a diagnosis, does not change a person. A person will not be different because of the letter confirming their autism. They will be different because that is who they are, and they must understand that whoever they are is ok.

And if it's not ok for some people, well, that's their problem.

Acknowledging who someone is, and being clear that this isn't a problem, is a very powerful thing. Even without a diagnosis, those of us who are autistic are aware that there is something different, accepting that and allowing us to be ourselves without judgement or a need for us to try harder or act normal will make a huge difference to how we see ourselves, and how we deal with day to day challenges.

Being able to be ourselves comfortably means that we can be the very best we can be, and reach our potentials, safe in the knowledge that we are good enough.

Thursday, 1 December 2016

Honesty is the best policy.

As some of you know, we are going through a few issues at school.
Having been communicating with PDA boy's secondary school for over a year now, when he was still in primary school, and having been assured over and over again that they understood the problem and were able to meet his needs, we are now worried as it appears they were not telling us the truth.

Also, as anyone who reads this regularly knows, PDA boy masks exceptionally well, something we have always been very honest about. This is something we have been told repeatedly by every school PDA boy has attended that they understand. But they don't.

I wrote a short profile giving a brief description of PDA, listed the signs that PDA boy will display when anxious, and I was promised that this short document would be photocopied and shared with each and every teacher who would have contact with PDA boy. At this point I was giddy with relief, as it really felt like we were getting somewhere, and had finally found a school who would deliver on their promises.

In the last two weeks, things have started to spiral out of control. PDA boy is receiving detentions for apparently ridiculous reasons, and even a detention for displaying autistic behaviour (he corrected a teacher who had not followed a process correctly). This has led to an inability to carry out homework, greater difficulty in carrying out school work, and an increase in silly and impulsive behaviour, leading to more warnings and more detentions.

For PDA boy this is awful. His mental health has taken a severe dive, he is talking more and more about wanting to kill himself, and we are concerned about him, and expect school to step up and carry out what they told us they would do.

But this is not happening, although we will have a meeting soon and will hopefully get to the bottom of what they can actually offer to improve things.

And here's the thing, had they been honest from the outset, had they explained that rules were rules and they will not be flexible under any circumstances, and that they could not meet our son's needs, we would have thanked them and continued to search for a school that would be the right fit.

We fell hook, line and sinker for the sales patter that persuaded us that this school was The One™. And I'm ashamed to admit that this is not the first time we fell for it.

This isn't fair, and we are not alone in ending up in difficult situations because others haven't been honest with us.

I'm not sure schools realise that they are toying with real lives here. I wonder if it's a case of "increase numbers at whatever cost, then deal with it later". But by this point, there are real children whose futures rely on their disability being catered for, real families despairing and not knowing where to turn, and having to prepare for yet another battle, which may well turn out to be fruitless, again.

A policy of complete and utter honesty from all schools would save a lot of heartache for our children, and those of us who advocate for them, we would be able to choose a school knowing that they will do their utmost to carry out their promises, instead of telling us amazing things about the school and leaving us to find out when it's too late that our expectations, fed to us by them, were unrealistic, with very little comeback to prevent this scenario happening again and again and again.

School protocols and processes are not my forte, but this is definitely an area I must educate myself about if I am to advocate effectively for my boy.