Friday, 31 March 2017

NAS Speakers' day at Wrexham.

It's been a while since I last wrote anything. I've been busy preparing myself for a journey to Wrexham to join other autistic people at the National Autistic Society's public speaking day.

Preparations have included the practical; booking train tickets, working out where to go and when, where to stay, what to eat, plus the emotional parts; getting my head around doing something that involves me stepping out of my small comfort zone with no-one seeing me through the difficult stuff, taking a journey to somewhere I've never been, the prospect of meeting people who I've never met or don't know. Terrifying stuff, I know.

The last week has been spent in a state of sheer terror or manic excitement, with a dash of "wtf was I thinking!" thrown in for good measure.

The journey, thankfully, was uneventful. Don't get me wrong, it was scary, there were tears, there were huge amounts of anxiety, but I managed it, something I'm very proud of. The journey back was easier, but not without anxious, panicky and teary moments.

The day itself was better than I could imagine. I'm resisting the urge to write "It was really, really good and I can't stop grinning!" and trying to make this a little bit informative.

The whole of the morning was a talk by Sarah Hendrickx, an autistic speaker I have admired for some time. She did not disappoint, delivering information about the reality of life as a speaker, in all its glamorous detail. It's so good to hear someone talk about possible pitfalls instead of solely focusing on the unrealistic positive points only. Without knowing the difficulties and potential problems, it's impossible to prepare for them and be able to deal with them without freezing or melting. I don't know if this is an autistic feature, but I have often been accused of being negative, when I don't think I am, I'm simply being careful to plan for all eventualities.

One of the things I was worried about was if I would be, yet again, on the periphery of conversations, awkwardly listening in, not knowing how to interact and feeling drained and exhausted from all the peopling. It was a welcome surprise to find that this wasn't the case, which has been the highlight of my adventure.

Normal socialising is difficult, constantly being conscious of how you're responding, your appearance, where to look, what to do with your hands, and usually, after half an hour or so, I'm done. My eyes feel boggy, my hearing starts to distort and I am physically and mentally exhausted.
Socialising with fellow autistics was easy. Conversation was interesting and meaningful, if a break was needed a break was taken and it wasn't considered rude. I'm not exactly sure why, but I didn't experience any of the usual difficulties, and for what feels like the first time in my life, I felt like I fit in, I belonged, I felt comfortable. I feel like I've finally found my people.

I also had the chance to meet someone I've been chatting online to for a few years, and I'm very pleased to report that we got on well (which concerned me - plenty of people meet me in real life and decide that a first meeting is enough for them!), we chatted for some time, nearly three hours one evening without being peopled out, and have progressed to being friends, which I'm very happy about.

I stayed in a Premier Inn, which I can recommend, if only for the chance of some peace and quiet, early nights and the chance to catch up with The Walking Dead without constant interruptions from children, husband or dogs.

These last few days have gone some way to help me over my fear of travelling to new places. Using trains instead of relying on my driving skills was liberating, and hopefully next time (and there definitely will be a next time) my anxiety will not be quite so high.

I apologise that this post is disjointed, barely thought through and probably fairly crap. I'm exhausted, I have a banging headache, I am pretty much down to my last teaspoon, but I so wanted to write this before I crash. I don't think I can put into words how wonderful the last couple of days have been, or how free and empowered I feel right now.

It has spurred me on to consider making some videos (I'll apologise now, but as Sarah Hendrickx pointed out in her talk, if you want to speak, you need to get out there, and I'm following orders!). I don't think I can whinge and rant so much without at least trying to do something about the problems we and so many others encounter, so I am enlisting PDA boy to teach me how to make and edit videos. At this stage I'm not sure if this is something anyone should be looking forward to, and I will consider filming with a bag over my head!

Hopefully now this hurdle (albeit a fantastic one) is out of the way I can write regularly again, and more eloquently than I have done today.

Saturday, 18 March 2017

Cygnet training: puberty.

Yesterday I spent the day at a local children's centre, on a cygnet puberty course.
Cygnet is a series of training courses put together by Dr Barnados, covering various aspects of autism and aims to help us parents become experts in more specific areas of our children's lives. I'm still waiting to complete the siblings course (something we desperately need!), anger management (again, something we need) and sensory, which I'm fairly confident about, but think there will still be loads to learn.

If a child has a diagnosis of an ASD, these courses can be accessed by referral. For us this was through school, but if the diagnosis is through the NHS, I think the referral is automatic following the diagnosis, but do ask about cygnet training, it's well worth taking part.

Waiting times can be long, and if you do get a letter or email inviting you to take part, respond as quickly as you can, or you'll miss it! I learnt this a while ago as making phone calls are very anxiety inducing, and by the time I rang, all the places had been filled!

I did email to explain why my response had been late, and they were happy for me to email acceptance instead, so if this might be a difficulty for you, it is worth letting someone know that you'd rather email a response instead of making a phone call.

The content of the puberty course was very good, and the two leaders this time were excellent, and managed to make what could have been awkward and embarrassing, informative and humorous.

One of the leaders was the lady who had supported PDA boy before we deregistered him, which immediately gave me confidence and made me feel more at ease.

Topics were covered very openly, I think where autistic children are involved there's no room for vague language, and this course was no different. Potential problems were approached clearly, with no ambiguity.

A recommended book, which is one we will be buying, especially as PDA boy is no longer in school, is Making Sense of Sex: A Forthright Guide to Puberty by Sarah Attwood (yes, she's married to Tony Attwood).
The book approaches the subject of sex in a very factual, scientific way, so may appeal to many of our children and can be used as a quick reference guide when there are questions we don't know the answer to, or used by our children if they don't want to ask the questions themselves.

As I found with the main cygnet course last year, I learnt as much about myself as I did strategies for PDA boy when he hits puberty.

Several well hidden memories were unearthed which was unexpected and quite uncomfortable, but enlightening at the same time, giving me tools to fit together further mysteries of my teenage years, and gives me further reassurance that I am indeed a part of the autistic community (even though I shouldn't really need that reassurance!).

I strongly feel that late diagnosed adults should be able to access Cygnet courses (or an adult alternative) for their own benefit, to enable them to learn better who they are and make sense of what were probably confusing childhoods and teenage years.

I'm not going to give details of the course content, it's not my place to do so and I couldn't do it justice anyway, but if you have a child coming up to the golden age of puberty, I highly recommend trying to get a place on this course.

And this concludes my shortest blog post to date!

Sunday, 12 March 2017

We all know the problem, what is the solution? A lesson on cognitive dissonance.

Last week I shared an article about the difficulties autistic children can have in school on my Facebook page.

Someone commented with "We all know the problem. What is the solution."

This sums up succinctly all the difficulties that so many children and their families have.

Very often the child knows what's wrong. Often the parents know what's wrong. Sometimes an autistic person reading about a situation knows what's wrong. Between us we have lots of solutions, things that would improve life for children in school on an autistic population level and also on an individual level. Solutions which may be free, solutions that require training, solutions that require a whole transformation of the schooling system which, arguably, is not only failing children with additional needs but also those without.

Putting aside the idyllic notion of an educational overhaul, because let's face it, right now the government is hellbent on destroying it rather than improving it, let's try to focus on the alternatives, little changes that could be relatively easy to implement, but that so many are resistant to.

We need to understand why there is resistance, why are teachers and support workers so sure of their knowledge that they will dismiss people's actual experiences? It's rather like white people telling black people how they should feel about racism, thin people telling fat people how easy it is to diet, in my opinion it boils down to cognitive dissonance. Of course local authorities hanging on to their money, or spending it in dubious ways doesn't help, but there are still thousands of front line workers who seem to have no ability to empathise with the distressed children in their care.

Sometimes people hold a core belief that is very strong. When they are
presented with evidence that works against that belief, the new
evidence cannot be accepted. It would create a feeling that is
extremely uncomfortable, called cognitive dissonance. And because it
is so important to protect the core belief, they will rationalize,
ignore and even deny anything that doesn't fit in with the core belief.

Source of quote: Frantz Fanon.

I believe this explains many of the problems that occur when those with direct meaningful experience with autism clash with those who don't.
To be fair, there are those who have no direct experience, but who are more able to take on board what they're told and believe it.

Over the years we have come across this phenomenon several times. Well meaning folks trying their best to persuade us that all is well, there's nothing that a bit of discipline won't solve. Because their mindset is that autism is visible and obvious, so when autism isn't visible and obvious, they literally cannot see what is in front of them. Now this is hurtful and frustrating when this comes from family and friends, but when this comes from within school, or from doctors or CAMHS, it can be downright disastrous.

Cognitive dissonance can be seen on social media, certain parents who cannot accept that the adult autistics they are talking to online were ever anything like their child, leading to accusations of fakery and ignorance. People who cannot see that autism is anything other than a death sentence, who cannot accept that autistic people themselves are telling them otherwise.

I can see how it happens.

A bright young person leaves school and enters university, they spend years studying for their chosen degree, learning from set textbooks which tell them facts about whatever it is they're studying, be it psychology, teaching or whatever. Once they are in their chosen job, they continue to believe what they have learnt. Anyone who questions them, or doubts them, is usually not in a position qualified to challenge, to tell them that they're not understanding something.

When it comes to autism, training courses are basic and inadequate, and establish further the narrow comprehension of autism, but with the distinct disadvantage of training session attendants coming away believing they have a greater understanding, and what's more, they have a certificate which proves they know more than mere parents, who have no such document. In the "real world", when autism is involved, experience counts for nothing apparently.

This is how we see parents explaining what their child is doing, to be told there's nothing wrong, the child is fine.
Thinking about PDA specifically, because it doesn't quite fit the version of autism that is well known - repetitive motor mannerisms, no eye contact, limited interests, poor social awareness - they cannot equate our children with autism on any level, because their learning did not involve autism in an atypical, seemingly normally presenting, personal level at all.

We personally encountered this with the majority of experts we had any involvement with. They had their views, from a very neurotypical, fresh out of the manual, way. And because the textbooks rarely accept that autistics have any self-awareness or insight into their own difficulties, autistic people themselves are considered not qualified to tell it like it is and are ignored.

People have a very strong bond to what they have learnt, and to accept that maybe there is more to know, or that the textbook read in university days is now obsolete can be difficult to take on board.

I think because PDA boy has presented in such a complex way - quite serious difficulties at home, violence, very impulsive behaviour, swearing - combined with excellent masking in school - we have learnt that what you see is not always what you get. Just because behaviour in school is ok, doesn't mean that the child is fine.

Just this morning I read another excellent blog from It Must Be Mum, detailing more difficulties between a local authority and a family. In it, the author touches on why human beings have become like this, how are they comfortable writing strategies that will ultimately lead to the destruction of the child?

I strongly believe this is an example of cognitive dissonance. No large group of people is so evil as to deliberately plan to shatter a family, surely? And not just one family, but hundreds of them, if not more.

As Edmund Burke said, "All that is necessary for the triumph of evil is that good men do nothing". But what if those acting in a way that is perceived by us as evil are not aware that they are? What if they truly believe that they are working hard to improve things for our children (if only us parents would play along, tsk)?

Having spoken to many people at length about the difficulties for families in this position, I truly believe that most of the problems we have are down to ignorance. Autism is viewed with suspicion, even through hospital assessments there's an element of rooting out the "real issue" - what are the parents doing to cause this? If this attitude is so prevalent from the very base services, where there are highly trained individuals who really should have better understanding towards the very conditions that they're diagnosing (or not, as the case may be), then how is there hope for any of the other services that initially branch from this foundation of vague misunderstanding and mistrust? From there we can track interlinked services with the core belief that somehow families of non-stereotypically autistic children (of which there are many) are being dishonest, are exaggerating their child's needs, are not disciplining the child and therefore creating a problem for school, are out for gain, financial or otherwise, are ignoring prescribed advice so therefore are being obstructive.

As well as the services which could, in the same time it takes to be disparaging and ignorant, be supportive and helpful, we have an awful lot of society who hold the same views. Autism is viewed with contempt, behaviour is deliberate and a sign of poor parenting and weak characters.
It is society that is the problem. Someone not living an autistic life does not have to have the same understanding, does not have to know their child inside out, protect them from triggers, coach them through life, whilst simultaneously trying to keep themselves healthy, raising other children, possibly also with additional needs.

It is far easier to blame and wash your hands of a situation with a clear conscience, like we have seen with certain people we were close to, like we have seen with all but three people involved with PDA boy, and every single person we tried to involve with Brian, their intrinsic knowledge that their experience of gaining qualifications and experience means they are right and we, the families, are wrong and making poor excuses for our lack of parenting skills, and the behaviour of our children.

Far easier to go home in frustration after a day's work, ready to kick off your shoes and relax, thinking "well, I've done my best for that bloody family, they just don't want the help!" than to go home and have to live with the knowledge that they have badly let another child down, that their predictable actions may play a part in leading to a disabled child's almost inevitable breakdown.

These are not bad people, these are normal men and women, holding down jobs, trying to do their best like the rest of us. The mindset is that they are the ones who know what's going on, and we are the thorns in their side, the families (and they must encounter loads of them) who don't play ball, who keep fighting for their children despite the experts evidence which is often twisted to suit their set beliefs.

Like I said, most parents I have had any contact with have solutions, autistic adults who have survived the deficient system have solutions, children within the system have solutions. Why are these the very people who are being ignored?

We must reach a tipping point, a time where training becomes meaningful and useful, where lived-through experiences count for more, where our children are protected, proactive support put in place as standard (as more often happens with their physically disabled counterparts), strategies, classroom adjustments, allowances for behaviour related to the child's disability must all be key solutions for our children, but as this relies on cooperation from those who hold the power, we still have a lot of educating ahead of us. We must keep highlighting the failures, celebrating the successes, we must ourselves become qualified to change the damaging mindset from within.

I have no doubt that change will come, but whether it will be in time to protect this generation of young people, I'm not so sure.

Of course there are many families whose children are supported well, but due to the nature of the internet we do hear more negative stories, but the fact remains that too many families are let down by the services that are there to support them, the fact remains that children are removed (or threatened to be removed) simply because involved parties don't understand the issue, and are not willing to learn.

Imagine a world where it's a given that our children are valuable members of society, rather than a drain on services.
Imagine a world where it's assumed that all our children have the potential to be happy, rather than the premise that it's ok for our children to be suicidal because that's normal and acceptable for autism.
Imagine a world where information about autism comes from those who live it rather than from observing neurotypicals who, whilst they may have a decent textbook understanding, can never truly know what it is to be autistic.

We must all, as parents, as autistics, pull together to educate the systems which push so many children to collapse, and hold to account those whose actions, consciously or as a result of cognitive dissonance, have led to a situation where too many families are vulnerable.

The solution is to educate those whose core beliefs are damaging our children.

Tuesday, 7 March 2017

Quick round up of Harrogate NAS fringe conference.

Harrogate International Centre is the venue for this year's NAS Autism Professional Conference.

The Harrogate branch of the NAS organised a fringe event on site, free to parents, carers, autistic people and professionals, with two speakers and a brief chance to ask Mark Lever, Chief Executive of the NAS, questions. As the conference itself is prohibitively expensive, it's brilliant that there's an opportunity to at least have a sample of it. I do plan to save for next year's event and spend both days there though.

I thought I'd write up some of the highlights of the event, but please bear in mind I'm not brilliant at listening and writing notes at the same time, so these are the moments that struck me and stuck in my mind.

The first speaker was Adam Harris, inspirational founder of AsIAm in Ireland, an organisation that not only strives to raise awareness, but to bring about understanding and acceptance for young autistic people. It's so good to hear autistic people speak about themselves and their experiences, and even when he was explaining rather more negative issues surrounding autism, he managed to do so amusingly, accurately and positively. Many people recognised themselves and their children in his words.

Mr. Harris told us his analogy of growing up autistic, likening it to an airport travelater, whilst others are effortlessly reaching their milestones, gliding along on the travelater, those of us who are autistic are desperately trying to keep up, running alongside. Meeting milestones, but doing so later, when others have gone on to the next step. I've never heard this analogy before, but it really struck a chord, both for myself and my children, and it is one I will use in the future when trying to explain what it is like to be autistic.

After a short break Peggy Walpole (OBE) took the platform. A specialist teacher with the Service for complex autism and associated neurodevelopment disorders (SCAAND), Ms Walpole spoke passionately about her role and encouraged parents to access the service, located at the Maudsley Hospital.

What particularly struck me about her talk (and I'm cringing at myself that I didn't take anything really positive from it) was how distanced from reality some professionals are. They are undoubtedly experienced and brilliant at their jobs, but she rather assumed that any child who needs this service will be able to access it.

This flies in the face of what many families go through year in year out. In many areas CAMHS will only accept referrals for children deemed severely affected by mental health. In many areas this means that autistic, or possibly autistic children, can't even get a foot in the door. Mental health problems, when connected to the possibility of autism, whether diagnosed or not, are considered normal and not something the child needs help with.

During her talk, Ms Walpole mentioned that although the service is open to anyone in the UK, only one child had been referred from the north of the country. Rather than this being a lack of need, I would see this as a failing on the part of referring services in the North. There are many parents struggling to access adequate support for their child, and it's not for lack of trying. Referrals are refused, or are accepted and children quickly managed to discharge without anything actually being done to help them, unless blaming parents counts as help.

Every time I've seen or heard people in professional roles involved with autism talk about their job, I get the same message, that things have never been better, all these services are accessible, teachers are all working their socks off to make things better....

Unfortunately this is a difficult message for many parents to swallow, as our experiences are completely at odds with the positivity and tales of schools working hard to get things right.

At one point I almost fell off my chair as she spoke about how good Academies were in respect to pupils with special needs, that because they're not under the thumb of the local authority, they are able to bend rules and go the extra mile to ensure our children are well supported (I'll give you a minute to stop laughing).

PDA boy's school was an Academy, so I have read with sinking-hearted interest of how others' children coped in their Academies. Anecdotally, these schools tend to be very rigid with their approach to rules. Rules for rules' sake, reasonable adjustments suit the school rather than the pupil, and because they can claim not to be under the umbrella of the local authority, this seems to allow them to avoid supporting children and to actively manage children out of the school. So to hear Ms Walpole speak so positively about them in respect to special needs was something of a disappointment. Unless Academies are better in her locality, then I fear this is another case of the schools' sales patter working wonders at selling the idea of excellence and inclusivity.

On the whole the mood after her talk wasn't quite as positive and relaxed as it was following Mr Harris' talk. I think from a parents' point of view, it really showed the disconnection between services and the children/families they serve. The intention is there, the recognition for the fact that some autistic children are more complex and need a different approach, but little understanding of how very difficult it can be to access anything when you're the proud parent of a complex child.

Following this came the arrival of Mark Lever, Chief Executive of the NAS. He told us about the recent campaigns from the NAS and how they were being received, and then opened up the floor to ask the audience of their thoughts on which areas needed more attention.

I grabbed my chance and pointed out that many families are at a disadvantage due to masking, that it's difficult to get support, difficult to get anyone to take things seriously enough to refer the child for diagnosis, and difficult to get any recognition through CAMHS that, even though this child in front of them looks fine, they are actually incredibly anxious and, once home after a day at school, can barely cope. This opened up some robust discussion, this is obviously an area that negatively affects many children in school, and I sincerely hope that the NAS will consider running a campaign that highlights the less stereotypical side of autism.

One answer to this problem was more teacher training, but having attended some teacher training sessions, I'm not convinced this would be the answer. In the limited time that a training session takes, it would be impossible to impart any more than the most basic, stereotypical information about autism, and the downside which many of us have found is that a little bit of knowledge is a dangerous thing, and encourages dismissal of parents' fears because the teacher has attended a training session, therefore the teacher understandably believes that they have a good working knowledge of autism when in reality they've barely scratched the surface, when faced with a child who, to them, does not appear to be autistic, it can be impossible to persuade them otherwise.
What is desperately needed is information about autism alongside clarity that it is very individual in nature. As I've said before, parents are a largely untapped source of knowledge, instead of being dismissed and considered Mum or Dad in a sea of experts, we need to be considered key players with vital information to share.

There also followed questions and brief discussion about adult autistics with aging parents, deaf autistic children and GCSEs. Unfortunately as I was at that point reeling at my bravery of asking a question, I didn't really take in what was said on those issues, but Mark Lever did write them down and I hope all these very important issues are addressed.

The Harrogate branch of the NAS must be congratulated for arranging this event, and I hope I can attend more in the future.

Saturday, 4 March 2017

Demand Avoidance and Self Esteem.

I was diagnosed autistic nearly a year ago now. Knowing I am autistic has allowed me to pick apart several areas of my life and make sense of them.

To be clear, I don't have PDA (I don't think), but having just about managed for years, I had a steady decline into burnout, and demand avoidance has become some sort of self protecting strategy.

I will still look compliant on the outside, as I nod and agree with whatever I'm being told to do, but on the inside I'm panicky and angry, and working out ways to avoid whatever I'm being told to do.

An example of this is art. I used to draw pet portraits, I'm told I was very good, but during the short period when I took commissions, I massively struggled with deadlines, expectations of accurately drawing someone's beloved pet, which I was able to do, but only without a looming time limit, which started to play tricks on my brain and stopped me from being able to draw. After four or five paid commissions I had to stop as I lost the ability to draw.

Other people are funny things, and whenever I showed anyone a drawing, instead of just saying "well done" or "I like it", everyone was an expert and told me other techniques I should be employing "You must try watercolour", "You need to draw backgrounds", and again, my brain twisted these and instead of hearing constructive advice which should have instilled a desire to try new methods, I heard "You're crap, you must change, what you're doing isn't good enough".

Like so many autistic people, I have very low self esteem, perhaps following years of believing I was like everyone else but clearly not as good because of the various struggles I had, perhaps from living in a neurotypical world where standards are high and difference is viewed as failure. In this constant environment of being aware that I'm not as good as others, I've developed a rather unhealthy attitude towards myself and my capabilities which leads to assumptions that I will definitely not come up to scratch where others will triumph effortlessly.

I've also noticed a pattern on Facebook, whenever there's a notification informing me that it's someone's birthday and I should help them to celebrate, my first instinct is to shut off Facebook thinking "no, no, nope, no way......". Whilst writing a simple "Happy Birthday!" sounds easy enough, it really isn't to me. I will procrastinate over whether to write anything at all, and what to write, and whether I know the person well enough to wish them many happy returns, and it all becomes a big brain-funk, making a massive deal out of something that really doesn't matter. But knowing it doesn't really matter doesn't make it any easier. Having put some thought into this, and beating myself up over it, I've come to realise that at the root of this is a lack of self esteem, and when I can pick out some reactions, it boils down to:

I don't think the person will want me to wish them a happy birthday because I'm crap.
If I do write on their wall, it puts pressure on them to acknowledge it or to remember to write on my wall when my birthday comes around, when they might not want to. And I resent Facebook for demanding that I wish the person a happy birthday, and take umbrage at the person for having a birthday in the first place.

This is my internal reaction to so many things.

Sort out the iTunes confusion caused by updating my iPad? I can't, I'm not good enough with technology, I'll get it all wrong, I can't do it, cue snappiness and anger because I want to do it, but there's a good chance I'll make it worse.

Go to my husband's work Christmas do? I don't think others will want me there, I won't add anything to the occasion, in fact by finding it difficult I'll make it awkward for the others, so no, I'll stay at home and kick myself for not going.

I have recently been accepted to study for a masters degree in autism. Whilst I'm thrilled, this has triggered a whole lot to work through. I'm not clever enough, I won't be able to keep up with the work, I feel that my written language skills are limited, I MIGHT FAIL!!!! Humiliation, disappointment and self loathing are surely inevitable outcomes. I have accepted my unconditional place, because I have to do my best to succeed, and I did not go through the pains of filling in forms, writing personal statements and essays only to decide not to carry out my long term plans, but it's incredibly difficult to ignore the part of you that's so sure you'll be an embarrassment. When I do go to university, I will make very sure I have detailed study timetables and a quiet corner at home to work in, and I will have to learn to ignore the inner voice telling me I can't do it.

So much of my demand avoidance boils down to how I feel about myself, and about my own abilities.

Realising this prompted me to explore whether this was the case for my boys. And it seems in a lot of their avoidance, it is.

Fear of not performing well is a massive trigger. An intrinsic belief that even trying will result in failure is at the root of many of my sons' PDA moments. Refusal is easier than trying and failing, or making an attempt and being disappointed with the results.

At the moment, one of PDA boy's passions is scootering. PDA is a barrier to him progressing with all the stunts he wants to learn, as his brain tells him he is rubbish and can't possibly succeed. We have found that coaching in detail through manoeuvres can help, and careful use of language such as "I wonder what would happen if you started by doing....." and breaking each step down into further steps means he can make an attempt, and has started to make clear why school was such a difficult place for him to be, as no-one could see this side of him that needed an awful lot of carefully worded support, and also knowing that small successes must not be praised, as this adds further pressure and self expectations of failure.

I don't imagine this covers every demand avoidant situation, requests for chores to be done are probably covered more accurately by "Boring" and are not interesting enough to contemplate doing. I have no plans to study this further though, I'm not going to waste precious compliant moments by doing something stupid like asking them to do some housework!

Our best successes, whether it is trying a new food, or going to a new place, or doing something exciting, is to offer it up as if it is a very dull option. "We thought we might do XYZ, but we're not that bothered, it's up to you.....", allows them to decide what to do without any pressure, and if the choice is yes, we tend to break it down into small steps. Doing this allows us to spot where potential triggers may be, and to offer a workaround before we've encountered it.

Of course those are our successes, there are plenty of times when we forget these steps are needed, and all hell lets loose, but we like to think that these times will eventually teach us to follow the correct steps more often. We live in hope.

I find it very interesting that my own diagnosis has led to a far better understanding of my children, and allows me to find better strategies for us all to use, gauging various successes by our reactions to them. Hopefully by spotting how my own self esteem affects how well or not that I can function will allow me to make better adjustments for PDA boy and Brian which may just preserve their self esteem as they grow up.

(Thought I should add that the photo, which I hope looks like a child feeling hopeless, was modelled willingly by PDA boy, and was a blatant excuse to try out an exciting new lens and justify the fact that I bought it! I also tried photos of his little brother in a similar pose, but he was wriggling and giggling too much and was demoted to Lens Cap Holder, a job which he did admirably.)

Friday, 3 March 2017

There's a hole in my bucket. My take on resilience.


the capacity to recover quickly from difficulties; toughness.
"the often remarkable resilience of so many British institutions"

Resilience is something we hear a lot about. And quite rightly too, resilience in my opinion is what leads us to sink or swim.

Healthy levels of resilience mean we are buoyant when up against life's irritants and challenges, we are able to tough it out, sometimes a little war torn, but able to fix ourselves up again without too much effort.

Not enough resilience means we are vulnerable to even tiny stressors, means we are constantly teetering on the edge of being able to cope.

When it comes to developing and hanging on to resilience there are clashes of opinion.

Most of us will have heard the analogy of a bucket when it comes to stress levels. Water in the bucket represents the pressure we are under. If you can start the day with the bucket relatively empty, and are able to take opportunities throughout the day to empty the bucket, your stress levels will remain manageable and are unlikely to cause a problem.
If when you start the day the bucket is nearly full, and you don't have the chance to empty it out, and not only that but more and more water is added throughout the day, at some point the bucket will overflow. If this is long term, there are likely to be consequences, mental health problems, meltdowns and other ailments which will also add to already high stress levels.

A resilience bucket is the opposite. A bucket in good working order means that it can carry a full load of water, there may be knocks along the way, which may tip out some of the water, but this can be refilled easily enough.
If the bucket is knocked too much it may develop holes. A leaky bucket drains water out, and is more difficult to refill, and with more knocks the holes will get larger.

When we have low resilience, it means that we can't take quick and easy steps to recover, we must take time to fix the holes.

PDA boy and his older brother Brian (also PDA) are both out of school now, neither could cope. Whilst they were still on the school register, but not able to go in every day, we were often told that they needed to be resilient. We needed to ensure that they were in school so they could realise that everything was ok and they could become mentally healthy and resilient.

I believe this advice was wrong.

Adults are able to work in various environments. Hopefully for them they will be able to search through many careers and find one that suits them. They might choose to work in an office, making telephone calls all day, they might work on a farm and be outdoors driving tractors or working with animals. Of course some people have to choose a job that doesn't suit them, but on the whole, as an adult, there are options.

As a child, your options are limited.
Private schools are valid choices to those who can afford it, and to some extent it is possible to find a school to suit individual children, some schools focus more on the academic side of things, some focus on sports and keeping their pupils busy and active. This is not a financial possibility for most families though.

If the child's needs can be proven, it might be possible for them to,attend a special school, where (I have been told), there are more experienced staff on hand to help children and support them appropriately.

In our case the option (until we jumped ship) was mainstream school. A one size fits all system which recently has lost most practical options in order to push all students down an academic route, a system not renowned for supporting autistic pupils.

Far from the, frankly bizarre, idea that being in school would keep them resilient, being in that environment alone was enough for my boys' buckets to be damaged so much that no water could be held in it at all.
Banter, bullying, not understanding lessons, endless demands, sensory overload, homework, uncomfortable clothes, no support, detentions, reading and writing difficulties, all joined together to guarantee that every last drop of resilience drained out, and the buckets were so damaged that they couldn't possibly be refilled no matter how much water was thrown at them.

In order to fill the bucket up, first it must be fixed.

It can be fixed in a number of ways.

For my boys, we felt our only choice was to remove them from school. This is an option for anyone who feels their child would benefit from being educated at home, but it can be looked on as controversial. So many people feel that our children must be in school in order to learn how to be sociable, in order to know how to interact with others, even though for some children socialising in school will never be anything but negative.

If support that works for the individual child can be put in place, this can build up resilience. It may mean a school move if staff in one school are resistant to change, but there are many cases where a child blossoms once they're in an environment that suits them.

Self care is very important. Identifying methods to help fix the damage and help the child feel good about themselves is vital. For Brian this means working in his engines, spending time alone and with animals. For PDA boy this means chopping wood, digging, energetic jobs that go some way to restore his sense of wellbeing.

My own bucket is very leaky at the moment, something I must sort out, as I am particularly frazzled right now, and barely able to cope with tiny setbacks, let alone manage day to day interactions with others. A week of computer troubles and iTunes screwy upedness (yes, I made a word up there) has me on my knees. I know I need time alone to be able to get by, and that is something I'm very short of at the minute, I'm trying to teach myself to take calm in little moments. I try to have short breaks throughout the day, usually by pretending I need the loo, or by listening to music or putting earplugs in for a few minutes. Right now I'm feeling a small peace because PDA boy is in bed reading a book. Reading A Book! (I literally can't remember the last time he willingly picked up a book, yet he's up there enjoying Stig of the Dump!).

We're generally going in the right direction, but I fully believe that for some children resilience cannot be found in a school, just like for some people job satisfaction cannot be found in an office. We are all individuals and we must realise that our strengths and weaknesses lie in different areas. One person's happiness is another's misery.
We must understand that some children need a different approach in order for them to be fulfilled, rather than trying to fit all of them into a neat little box.

My children are not neat little box shaped, and I owe it to them to allow them the freedom to build up their reserves and learn what shape they are, where they fit into the world, and to ensure they are mentally healthy and have the resilience to bounce back from whatever life throws at them along the way.

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.