Wednesday, 29 June 2016

The trouble with invisible disabilities.

Like most of my blog posts, this hasn't been planned at all.

Like most of them, an irritating event has triggered a need to write this. Someone (who shall remain nameless) in a position where they should (in my opinion) have a good understanding of invisible disabilities and their effects, made a breathtakingly stupid comment a few days ago.

It has made me consider the trouble with invisible disabilities.

And, well, they're invisible, aren't they?

That's the problem. Certain people find it very difficult to get their heads around the fact that invisible disabilities are There are no obvious clues.

As much as we have all read about some disabilities being invisible, unless you live with it, there's still an assumption that you can somehow tell, hence the number of people saying "well he doesn't look autistic".

PDA boy apparently doesn't look autistic, he doesn't show stereotypically autistic signs in school, and when discussing his support needs the other day, in comparison to children with more visible disabilities; physical disabilities and severe learning difficulties, I was told that PDA boy simply needed to make more effort.

In one sentence, this person has, beyond shadow of a doubt, proved that in order to believe PDA boy's diagnosis, she needs to see its physical manifestation within the confines of school, and until that point she will stick steadfastly to her (wrong) opinion that the extent of his difficulties are because he's not trying hard enough.

It is entirely possible that SEN training in schools leaves out masking, so when teachers and headteachers are informed by parents that their child is having significant problems, they simply don't understand, but when they have information provided again and again, it's very difficult not to take it personally that time and time again this information is ignored. And in ignoring, I feel they are making a choice to fail the child.

I don't know one parent who would go to the effort of advocating for their child's needs if it wasn't 100% necessary. In my day to day life, the need to fight for my son to be understood is the single most frustrating thing I have to do, and I consider that banging my head against a brick wall would be altogether more rewarding.

Having a child with an invisible disability opens up a whole can of worms.

The child has greater expectations on them. Despite their autism, because they can hold it in and appear neurotypical, or because any behaviour they show is easy to mistake for NT naughtiness or silliness, they have neurotypical expectations put upon them which simply cannot be coped with and can spell disaster for an individual child.

Parents are wide open to judgemental looks and comments, and even when dealing with professionals who know about the child's diagnosis, there is still largely an assumption that the child has not been disciplined or parented effectively.

When a child has a physical disability, schools must cater for their needs. A local school put in tremendous effort to make sure life for a newly disabled pupil was as easy as possible, that this young person could continue with her education despite life changing injuries following an accident, and they must be applauded for this.

When a child has an invisible disability, the work involved for parents to even have that disability acknowledged, let alone supported, can be a time consuming nightmare.

Some schools get it right. Some schools spot the potential information resource in parents which they can use to their great advantage. Again, these schools must be applauded. They should be held up as shining examples for others to follow their lead.

Unfortunately some schools do not get it right, parents are relegated to being simply Mum and Dad, irrelevant bystanders in proceedings, with no useful knowledge to share. I don't believe this is done deliberately, it is difficult to make that attitude shift from naughty child to child with support needs, especially if you can't see those needs.

We need a whole new approach to invisible disabilities, these pesky conditions that you can't see, and I have an idea.

No, it's not writing the child's diagnosis on their forehead so it's clear to everyone.

It's a radical idea.

When a child has a disability that is not easily observed, there needs to be a willingness in every school, for every one of our children, to involve that child's parents, who are likely to know the child inside out, and to be open minded enough to understand that what you see isn't always what you get. Seeing isn't always believing.

Diagnoses are not handed out like smarties, so if a child has one, it must be respected, whether it can be seen or not.
If a parent is desperate enough about their child's behaviour to involve outside parties, talking to teachers, asking for referrals, there is a good chance that, for whatever reason, that child has difficulties and it is important to take those difficulties seriously for the sake of the child. To deny support or to ignore a valid diagnosis is to fail that child, and no teacher should be choosing that route.

Involving parents is likely to mean that, as the child's needs are met more effectively (and in PDA boy's case, I've mentioned before that this support would be minimal, require no training and, perhaps most importantly, would be free), behaviour from those individuals improves and their academic ability may improve as anxiety lessens.

Everyone's a winner.

How we get to that point of understanding, well, I'm still working on it.

Tuesday, 28 June 2016

My Masking Child's Diagnosis.

Last week marked the one year anniversary of PDA boy's diagnosis.

PDA boy's diagnosis for us was in two parts. The NHS part and the private part.

Our NHS experience was......interesting, and kept us on our toes. I don't want to rant about the NHS, some things it is brilliant for, and for that I am very grateful - I'd probably be dead several times over without the NHS.

For autism though, it is a bit of a postcode lottery, some areas are brilliant, some not so. I always believe there is room for personal development and growth, particularly in an area where families rely on their drs to have their fingers on the pulse in order to get the understanding and support they need. In some areas though, when it comes to autism, this does not seem to be a priority, which seems very counterproductive, as in many cases a diagnosis is needed before correct strategies will be used, and a child's successful future is reliant on correct strategies being used.

With an autism assessment comes all sorts of intrusive interventions. One thing that struck me was that the expectations of all involved was that my husband and I weren't telling the truth. Questions seemed designed to catch us out, and many of our answers were disregarded. I particularly find this difficult to deal with, I am a lot of things, but a liar isn't one of them.

There were observing professionals visiting PDA boy in school, writing reports, watching his every move, but unfortunately many of the signs they saw were left out of the report that led to his non-diagnosis. My husband and I were told things during conversation when we were being quizzed at our DISCO (diagnostic interview for social and communication disorders), we were told that PDA boy spent most of the lesson with his head on the desk, not working. We were told he made a very literal joke that fell flat. We were told that after being moved to another desk to work, his communication with another boy was off kilter. We were told things that were consistent with masking, watching his peers, reacting a fraction later than others and louder than others. We found out after that it had been noted that his facial expressions in lesson time tended to be very blank.

None of this was included in his report, which ended up a strange document to read, with the ADOS and DISCO sections showing issues, but each area was summed up in favour of school observations. "No difficulty in this area".

The results of both the DISCO and his ADOS (autism diagnostic observation schedule) assessment were ignored in favour of a vote of "No, we can't see anything" by PDA boy's teachers, a parent support advisor and a lady from enhanced mainstream services, all of whom had only seen him in school where he masked expertly. They simply had no knowledge of how well some children can cover up how they're really feeling,

To top this, at a later meeting with the autism co-ordinator at the CDC, I was clearly told that PDA boy's issues were down to parenting, that my husband and I must both deal with him together at all times to show a united front (not sure what was supposed to happen with our other three children). I came out of that appointment broken. My confidence, grown from knowing how much things had improved at home for using PDA strategies, was in tatters.

Our NHS assessment period was a very dark time for us all, and one that I would be very reluctant to go through again should another of our children need it.

It took a few weeks to work through it all, doubting ourselves, unsure of the things that we knew were true.

We then looked into alternatives.

We approached The Elizabeth Newson Centre, who specialise in PDA, to find that they were fully booked and had closed their waiting list until they had caught up with themselves.

They recommended Dr Jo Jones (consultant paediatrician) and Dr Judy Eaton (consultant clinical psychologist).

Contacting them was simple and we had quickly arranged an appointment with only a few weeks to wait.

From contacting Dr Jo and Dr Judy, we then had a nine week wait, which was agonising. We went over and over PDA boy's reports, we doubted ourselves, we fully expected to be faced with more professionals who doubted what we said.

Thankfully, we couldn't have been more wrong.

The appointment was arranged for the afternoon of Thursday the 25th June. We had a three hour drive ahead of us, with a reluctant boy for whom the only positives of the trip were a day off school and a mega three hour game of mini punch, which he won by a mile after spotting a car transporter with (according to him) around fifty minis on board.

We met Jo and Judy and were brought into Jo's beautiful kitchen where my husband and I would talk to Jo.
After initial introductions, PDA boy was taken into another room where Judy carried out a WISC assessment (as he had already had an ADOS assessment which was over the threshold of autism).

My husband and I stayed with Jo in the kitchen where she asked us questions about PDA boy's history.

One of the problems with the NHS assessment was that both my husband and I are wafflers. We were so desperate to give as much relevant information for questions worded ambiguously that our DISCO interview took an hour and a half longer than predicted, and with hindsight, we still probably didn't give the psychologist the information she needed.

Jo was amazing at getting the exact information she needed, she asked questions then explained exactly what she meant, she stopped us when our ramblings were irrelevant, and recognised when we didn't understand a question and put it in a way we (and by we, I mean I) could understand more clearly.

In an hour and a half, we covered more, and Jo had more useful information than in the many, many hours we'd spent talking to the various professionals throughout the NHS assessment period.

After our interview and PDA boy's assessment, Dr Jo then carried out a physical examination on the boy, following which we went into the garden whilst the two doctors discussed the case.

My husband and I were called back in to chat, leaving PDA boy playing on the trampoline and watching a bees nest in an old apple tree.

The verdict was in. Autism with a presentation of pathological demand avoidance.

The relief was immense. The years of questioning ourselves and what the family was going through were over. Not only that, Judy had spotted how angry the boy was, despite him masking and mostly complying, she could clearly see that beneath his mask he was barely suppressing his anger. This felt like a major breakthrough. Someone outside of his immediate family had spotted what we see.

Both reports were received within a week of the appointment. Unlike the NHS reports, we fully recognised our son in the words of the two doctors, nothing was twisted, nothing ignored, there was nothing we could scratch our heads at, puzzled which child they had assessed. This was all 100% PDA boy.

I have such positive memories of this assessment. For the first time in years, we had the opportunity to see two doctors who believed what we were telling them, who didn't try to twist our words in a bid to prove that he wasn't autistic, merely badly parented.

We waited a couple of weeks to tell PDA boy about his diagnosis, to be honest it took that long for him to recover from the long journey and the assessment, so telling him earlier wasn't an option.

He didn't take the news well, and that summer, behaviour wise, as he processed this information, was very difficult.

A year on though, I can honestly say that the diagnosis has been very positive. PDA boy no longer believes he is evil or the bad one in the family, he does still go through difficult times and we are still finding it tricky to have appropriate support put in place, but finally, he is starting to understand who he is, and how to handle things.

He will chat happily to certain people about being autistic, and will answer their questions eloquently. At school though, he is still a closed book.

Knowing he has PDA, and I suppose having it written down as a diagnosis, has made a huge difference to us as parents. We can use PDA strategies wihout self doubt, knowing we are doing the right thing. We can ignore those intent on pointing out that he's not autistic, we're just pandering to him. We can put things into place to help him to cope following a day at school, we can advocate for him confidently.

If we ever get to a point where another of our children needs to be assessed, I think we would bypass the NHS entirely if we could, because I don't personally know if I could cope with another year of interrogations and not being believed at all.

If it were needed, I would be booking my child to be assessed by Dr Jo and Dr Judy, knowing full well that if that child had autism they would be the ones to spot it.

As you can probably tell by everything that I've written, I would recommend them both in a heartbeat.

Sunday, 19 June 2016

Processing words.

I apologise in advance as this is another me, me, me post, but it fits best in this blog as 1) it will help me to process this enormous lightbulb moment that I have had and 2) it may help some of you understand better the processing problems that our autistic loved ones may have. As I have found before, now I've had this Eureka moment when it comes to my own processing problems, I can't explain it from someone else's point of view.

I also apologise because, on previewing this, it is very long.

Last week, as I've mentioned before, I attended the second session of Cygnet training. I'll admit, I have gone into these sessions knowing that I have researched autism for years, and knowing that when it comes to my boys, I know them and their autism better than any expert, so I did not expect to learn much. I certainly did not go into it expecting to have a massive, earth shaking revelation about myself.

The session was about communication, and reasons why people on the spectrum have problems communicating with others (yeah, yeah, yeah, I've read it all before, I know loads about this - I know, arrogant much?).

Specifically, my revelation was about processing information. (Again, yeah, yeah, I've read widely, I really don't think you can teach me anything about this - what an idiot I am!).

I've read about people on the autistic spectrum needing time to process questions and information, but on some level I now realise that I didn't fully understand what it meant. I have never, ever realised that this applies to me. I've taken it into account when talking to PDA boy and his older brother, and it helps, but not once in everything I've read have I ever been able to apply it to myself, until last Wednesday.

I, and many others on the autistic spectrum, have a constant dialogue going on in my head, going over conversations I've had, conversations I will have, and conversations I will never have. Most of what I say has happened before in my head, so during real conversations it comes out instantly and fluently. It is rehearsed and, to a certain extent, scripted. I always assumed that everyone does this, and I'm probably right to a certain extent, but with autistic people it can be constant and exhausting, and the need to have these planned answers is important. Take small talk for example, pointless conversations, but something that NTs value. I can pass as a decent small talker because I will pay attention to the weather and current news because these are the things that will be chatted about, I can rehearse these things in my head and I'm ready for a passing "ooh, it's supposed to be summer" (It is indeed, it's June and it's bloody freezing!).

I've known for a long time that I do this conversation rehearsal, so this wasn't the lightbulb moment.

At the cygnet course, one of the course leaders was talking about processing times, I can't remember exactly what she said, but it was along the lines of "Don't forget, if your child gives you a different answer to the one you're expecting, they may not have had time to process the question". (Sorry, I know this doesn't sound like a great revealing moment, you'd expect something profound and deep!). I heard this, and at the time it didn't mean any more than an interesting observation of our childrens' thought processes.

After the course I drove home and went through the things that had been said, the things I had said (Oh god, had I said the wrong thing? Had I annoyed anyone?).

I arrived home and made myself a cup of tea and sat down quietly to recover from the stresses of being in a room with fifteen other people, and it suddenly hit me, like a non-lethal bolt of lightning.

If you give a different answer to the one expected, you may not have had time to process the question.

And the realisation hit me.

I do this.

How have I never known this about myself?

If I am having a conversation, and a question is asked that I'm not prepared for, my brain will search for a Best Fit answer. It may do the job and I get away with it. Or it doesn't quite fit and it looks like I'm either misunderstanding the question or it looks like I'm deliberately evading a tricky question. Or if someone makes a jokey or unexpected comment, I will stand and stare, my brain working hard to come up with something, anything, whilst I stand appearing gormless and humourless.

I believe this may explain some of the difficulties I had during PDA boy's assessments, and more recently with CAMHS.

One question that stands out was from our CAMHS therapist.

"What do you want us to do"

At the time, I was put on the spot, I vaguely knew the answer, but I couldn't find the words. I felt pressure to answer, time is limited, so, rather like a Google search, I put in the key words and my brain found the closest thing to an answer, but it was just useless spiel about PDA boy's difficulties one more time. CAMHS believe we are obstructive, and I think my, perhaps inappropriate, responses have unfortunately confirmed this. I did disclose my autism to the CAMHS therapist, but as I already know that their knowledge and understanding of autism is limited, I shouldn't be surprised that they didn't understand that this may be an issue for some of their patients' parents.

I did eventually think of an answer, but it was days too late.

Since first learning about autism and how it affects my boys, and later realising that I was recognising myself, and going through to my own assessment and diagnosis, this realisation that I do have problems with processing information has been the most mind blowing.

How on earth have I got to forty years old without realising that I need time, sometimes a lot of time, to process information?

How have I not realised that the answers I was so often giving didn't quite fit the question I was asked? It seems so glaringly obvious now.

I want to approach all the people involved in PDA boy's assessments and ask them to recall how I came across in all those difficult, time consuming appointments, but I won't because that's not their job, but it would be interesting to see if their recollections confirm what I have only just learnt about myself. I can remember giving rambling long answers to open ended questions, because I wasn't sure what they wanted to know, so I gave as much detail as possible to make sure I covered what they were answering. Again, I feel sure this was down to processing problems.

During PDA boy's private assessment (which I will talk about next week), the paediatrician we saw, Dr Jo Jones, was very good at asking questions. When I started to ramble, she would stop me saying "no, I don't need all that, I want to know abc", when I was launching into the whole alphabet. She would then explain exactly what she wanted to know, thus saving time and meaning that in the three hours we spent with her, we covered far more than we did within several hours of speaking to people for the NHS assessments. I suspect that she was experienced with parents who probably unknowingly have the same processing issues.

Knowing this about myself is huge.

I can see how I played a part in the failed support through CAMHS, and how the boy's assessments were far harder than they should have been, so my insistence that we were failed by the services supposed to help was not quite as I have perceived it. My own answers probably caused misunderstandings and assumptions about me and my agenda, because looking back I wonder if I did come across as fake, and my answers scripted. I have only ever been honest in these situations, and have been so upset that most people we have worked with have not believed me, but now I think I have the explanation.

My answers have always, always been truthful, but when they come across as rehearsed, it maybe sowed seeds of doubt.

So I intend to take this new information about myself and learn from it. If I'm asked a question, I will stop and think. I will try not to feel panicked into giving an answer as quickly as possible. If necessary I will write the question down and ask if I can give the answer when I've had time to think about it.

I will use this knowledge to be more understanding of my sons' processing difficulties. I will not get frustrated at them, but I will give them more time, and approach things in a way that is more straightforward and requires less complex processing.

I have learnt a big lesson as well. I went into those Cygnet sessions feeling that I knew it, and couldn't possibly learn, but I have. I hope I haven't come across as a smug know-it-all, but will approach these things with a far more open mind in future.

Sunday, 12 June 2016

The masking child: Book club analogy.

Let's assume you know nothing about masking. You have no experience of a child who is completely different in the safety of their own home.

How do you describe them to someone else?

I have explained many times to disbelieving people, including experts, what is going on, but my words dont work, I can't get it across effectively enough for them to understand.

So I have come up with an analogy which I think will help the most reluctant observer to understand what some of us go through every day. It may be brief (you'll be pleased to hear!), but I hope others with a masking child will find it a helpful way to explain to their families and friends, and even their child's teachers and other experts involved in their care.

The Book Club

It's the last Friday of the month. Book club night has rolled round quickly.

You have diligently read the month's chosen book, Neurotribes, by Steve Silberman, full of eye opening information giving you an insight into autism and its history.

You take your contribution; a bottle of wine, and drive to the venue where you will meet your fellow Book Clubees.

Sitting in the cosy lounge, the fire flickering brightly, shoes kicked off as you sit back in the comfortable settee, you chat about your week, biding your time until the point where you can discuss in depth the book that you devoted so much energy to.

Lisa starts the ball rolling. You hold your breath, waiting to hear that they also found the book gripping, and were unable to put it down, causing several sleepless nights.

Lisa gives a relaxed smile "Well, I just loved it," Everyone smiles in response.

Lisa continues "the protagonist was gorgeous, even if he was grumpy to start off with, it was so predictable that they'd end up together."

You are confused. This is not the plot of the book that you spent hours reading. Where's Leo Kanner? Hans Asperger?

Izzy's turn now "I know, and the wedding, so lovely, beautiful descriptions, I really felt I was there!"

You eye them up, is this a wind up?

Now it's your turn. "Well, i feel I've really learnt a lot about autism...."

"What?" Everyone turns to stare at you. You feel uncomfortable.

As you continue to give your opinion, you slowly realise that you haven't read the same book as your friends. You ask to have a look at Lisa's copy of the book. You flick through it and see that the main body of text is written in code. Puzzled, you look at the cover of the book.

Realisation dawns.

The dust jacket of their copies of Neurotribes has been printed with the synopsis from Katie Fforde's latest best seller.

You are the only one who has been able to read the book.

You are disappointed. You came prepared to discuss the finer points of peoples experience of autism, you put time and effort into making sure that you could talk knowledgably about this chosen book.

But not only have they not been able to read the book, they have read a synopsis of a different book altogether, one that bears no resemblance whatsoever to the book that you finished. They are also insisting that they have read the book.

You are frustrated.

You are humiliated. Not once did they acknowledge that yes, you alone had read that bloody book, and you are actually the only person in the room who could talk with any authority about that book, yet yours is the voice they ignore.

The End

So there you go. I have lost count of the number of times when some well-meaning expert will briefly observe PDA boy and tell me authoritatively that he is fine, when I know full well he isn't.

PDA boy is Neurotribes, compared with the expert's printer errored synopsis on the dust jacket. They are reading something else entirely in that brief synopsis, but still insisting that this is him. One brief snapshot in all his masking glory, without once taking the time to listen to those who have actually read the book in full, and they still know him better than I do.

I'm not blaming anyone, but if you are unable to read the book, only the fluffy paragraphs on the jacket, you do not then base your entire knowledge of a modern classic on that synopsis.

You either admit that you can't read it and ask for someone who has to explain it, or you take the time to learn the code, then you can read it yourself. You don't turn round to the one person who has read it and tell them they've got it all wrong.

Thursday, 9 June 2016

Human behaviour.

One thing that confuses people about PDA boy is his ability to mask.

In public, when he's feeling uncomfortable he will display Behaviour (capital B intentional, there's nothing lower case about this behaviour!), but this behaviour will, weirdly, make him look like any other typical human being, albeit a rude, loud, impulsive one. This shouldn't be a surprise because, after all, he is a human boy, he is not some alien species.

Any behaviours a child shows is essentially human, whether the child is autistic or not.

Having read Dr Ross Greene's The Explosive Child (may have mentioned it before, excellent book, go and buy it), I believe that any "bad" behaviour in any child has its roots in something having triggered the child to behave in that way. In some children (my own included) that behaviour is bigger.

The difference between autistic (and other SN) children and their neurotypical peers is that when a NT child behaves "badly", it is assumed they are being naughty, they will be disciplined, they will learn not to do whatever it is they were doing.
Typically, when an autistic child acts up, there can be one of two options that people take:

1. Assume the child is being deliberately naughty (because let's face it, that is what it looks like!), discipline in the same way a NT child would be disciplined, find it doesn't work, or isn't as effective, assume the child is still being wilful, situation may easily spiral out of control, child is often held to account for their behaviour, even though by that point, they are beyond having any control over their actions.

2. Assume that the child is feeling overwhelmed or anxious, follow the strategies that work for that child to allow them to recover.

I know which option I think makes more sense, but at the same time, I know which option is often chosen.

Option 2 should be the default option for every single child with a diagnosis of autism, or even a suspicion of autism or other neurological difference.

Option 1, when those in charge know about the diagnosis, sets the child up to fail, it is highly unfair for the child to be put in this situation. In my more strident moments, I would go so far as to say in some cases this is downright abusive.

Whilst PDA boy hasn't (yet) reached a point of losing control in a school setting, he has been in situations many times where he is being cocky, silly, rude, distracting, sometimes on his own, sometimes alongside his peers. He will be told off, sometimes on his own, sometimes as part of a group. Each and every time, he will come home and meltdown. He does not understand why he's being told off. He could be told off a million times, it still won't impact on his behaviour, because........ HE IS NOT BEING DELIBERATELY NAUGHTY.

PDA boy may appear to be NT in school, but the fact is, it is an elaborate act, he is not NT, and NT strategies only serve to increase his anxiety, which means he is more likely to show the behaviours his teachers are wishing to curtail.

This is so unfair on him, quite apart from him being disciplined for behaviour that he can't control (a child wouldn't be punished for having an asthma attack, or having a temperature when ill), he is not being given any opportunity to learn how to behave more appropriately, and he is being pushed and pushed to a point where he will be more likely to lose control and end up hurting someone, which would in all likelihood lead to bigger punishments and even exclusion.

If PDA boy's behaviour is spotted and strategies used to help him feel better, not only will his behaviour improve, he will also feel less anxious in school, which will mean that academically he may improve, which will mean he has more options as he gets older, which means he has a greater chance of working in a job he enjoys, which means he is more likely to be happy. Surely this is the hoped outcome for all children? The route to get there may be slightly different for our autistic children, but by using default NT discipline methods across the board, I do wonder if some teachers realise that not only are they setting up the child to fail, they are also setting themselves up for more and more difficult and disruptive behaviour in the classroom.

This isn't intended to be a teacher bashing post. There are wonderful teachers out there who do their utmost for our children. Unfortunately though, it so often happens that teachers, misguidedly following standard procedure, with no malice or harm intended, will unwittingly make life far more difficult for our children, and at the same time make life more difficult for themselves when having to tackle more and more tricky behaviour. It is probably as well to point out as well that this is being written by the mother of a boy who masks so well that the only signs he will show during times of great distress are the same signs his peers will show when mildly pissed off, so I do understand why this is happening.

Not all children will show stereotypical autistic behaviour in a classroom. For some children, PDA boy included, showing any behaviour at all is a big deal to them, and more often than not means they are desperately struggling to keep their feelings under wraps. These are extremely vulnerable moments for our children. These are the moments when our children need more support and understanding.

It is so important that this is understood. Whilst behaviour may look similar, it doesn't always mean the same thing, it doesn't always feel the same to the child, it cannot be treated the same across the board. All children are human, but those with autism do not process things in the same way, they cannot be lumped together with NT children in these situations, as it simply won't help them.

Supporting the masking child.

Yesterday I attended the first session of a series of Cygnet training.

This is a six week course for parents of newly diagnosed children.

The first thing we had to do was complete a form rating our confidence levels in managing our children.

I am confident that I can fairly accurately recognise PDA boy's moods and triggers, we know which activities will help to calm him down. Don't get me wrong, things are difficult, we are human, we get it wrong, but hopefully we learn from those times. On the whole though, we recognise what we are dealing with and in general we are heading in the right direction.

I also have several years of intense autism research under my belt, as I desperately sought answers for my son's behaviours, so I'm aware of the basics.

I filled out the form honestly, stating that in most areas, I feel confident. Which I don't think the leaders of the group will be expecting. They expect to see low confidence levels which grow over the weeks.

We know that during school holidays, when we can tailor life to suit our childrens' needs, things calm down, apart from the odd day when everyone decides that constant insults and wind-ups are fun. (They're not fun).

Our problems are exacerbated during term time when PDA boy holds everything in and lets go once home.

These are the times when, despite knowing how best to handle him and which strategies help, we don't make progress, we are firefighting, battling the flames as new ones keep starting.

On top of this, there is also the need to advocate for my son to people who simply don't believe there is a problem, I understand why, when my son is a completely different child in school, but it is frustrating that his diagnosis is being largely ignored.

I'm not entirely sure why support and understanding is so hard to come by. I have some ideas:

1. They cannot get their heads round the fact that the child they see in school could possibly be the same complex child that we love.

2. He doesn't pass the threshold a child needs to in order to qualify for support.

3. Money, money, money.

To address these points.
He has a diagnosis which accurately describes his difficulties, and he is also a child outside of school.
To apply a threshold like this is to show a complete lack of understanding for children who mask, who may actually be a long way off their potential.
It's very short sighted to think that withholding support is not going to lead to a greater need for money to spent on our children. I also believe that for our children who mask, support would be very subtle, would require no training as such and therefore probably wouldn't cost a penny, so it boils down to an unwillingness to believe what parents are saying which, whilst frustrating and difficult to deal with for us parents, ultimately will be more damaging to our children. Timely support could mean that our children can successfully access education for as long as they need or want to. Our children may avoid exclusions and costly interventions. Support could mean an increased chance for our children to grow up into well adjusted, productive adults.

School life for my son would be much easier if his teachers took a few minutes to learn a bit about PDA. I'm not expecting anyone to spend hours studying documents, attend many training courses at great cost though, there are some very simple methods that anyone could understand.

The things that would make PDA boy's life easier, and many others like him, would be a shift in attitude, acceptance that what you see isn't what you get, simply taking on board that most of his behaviour is there for a reason.
Understand that jokily insulting him will result in a meltdown at home, understand that simple language tweaks and offering options can help him to feel much more in control. If he is behaving in a way that looks silly or naughty, understand that he is probably feeling anxious about something, or overloaded. Send him to do a job, take some paperwork to the office, go and fetch some water for the teacher, anything that gives him a brief opportunity to decompress.

Be clear with him. We have had countless meltdowns when he has been told off for something that he doesn't know he's done, and the times when he has asked, the reply has been "I don't need to tell you what you've done, go and think about it!"
The behaviour he's being told off for is probably a result of anxiety, so he probably hasn't a clue what he's done. If you want him to know that being rude and defensive is wrong, explain that to him and offer him the chance to go and cool off a bit.

Cut down on demands. Give options.

If there is a query that could go through me, ask me, don't bother him with it as it will add to his anxiety levels.
I try to be prompt with payments and permission slips, but if I'm late please ask me, not my son, as he will interpret your quizzing as a telling off.
If there's a problem with his lunch or uniform, something that ultimately will be up to me to deal with, please ask me.

This image is a mindmap, found on the PDA resource website (clearer version found in the PDA resource, link at top right corner of this blog page).

This has made such a difference to us at home. It's not difficult to follow, and once you get the hang of it, using it is simple. My son doesn't need 1:1 support, but just understanding him and accepting that PDA is a real thing, will make a huge difference to his stress levels.

Teachers may not see how a day at school affects him (although I am more than happy to provide evidence) but I can assure you that throwaway remarks and a build up of little incidents throughout the day leaves my son raging and struggling to cope, and can mean that a normal family life is non-existent.

I find it difficult to get my head round the fact that I have been honest about my son's behaviour, open about his diagnosis to the appropriate people, yet there is so much resistance to believe us and to attempt to use simple, free techniques that could make such a difference.

My son is his own worst enemy, through no fault of his own. Masking means that his needs are not being met.

When the strategies that could work (and do work at home) are so accessible and simple for anyone to carry out, I am finding it hard not to resent the people who will not acknowledge them, or who insist we continue to look for answers explaining our son's behaviour.

We have the answers. We at home have the evidence that PDA boy has PDA, and that PDA strategies work.

The biggest support for the child who masks is surely for anyone working with that child to listen to their parents, work with them and finally, please God, acknowledge that we understand our children and can play a key part in them reaching their potential.

Thursday, 2 June 2016

School holidays.

Over the last few years, we have learnt that holidays can be a blissful break from the normal daily tussles.

Life during term time tends to be difficult, regularly seeing PDA boy (and the rest of the family) reaching breaking point.

Holidays, with a bit of planning and hard work, can see PDA boy relaxing in a way he just can't when he's at school.

I know we are lucky in this respect, I know that holiday time for some families is dreadful, loss of the familiar routine can mean these weeks are a nightmare.

For us, holidays follow a pattern.
We have a few days of absolute screaming chaos and non-stop meltdowns, as the boy adjusts to being free.
This is followed by a period of relative calm. At least, it looks like calm compared to other times.
The last few days of a holiday, we're back to chaos as he prepares himself for going back to school.

Just to be clear, I'm not talking about holidays where we go anywhere, these are rare and tend to be more difficult to cope with. When we do go away, we like to go to Center Parcs, it's familiar, which suits us all, the older children can go off and do their own thing, for PDA boy there is time to bike, space to run and explore, and we have found a quiet, dimly lit area in the swimming pool that we usually have to ourselves, and we are only there a few days, so he can easily see there's a time limit that he can manage.

The time I'm talking about here is simply time off school, spent at home.

We are able to reduce demands to a bare minimum, in fact, the last few days the only demands have been to brush teeth in the morning and at night.

PDA boy is relaxed, if he wants to play on his Xbox, he plays on his Xbox, if he wants to watch a film, that's what he does. He eats when he's hungry, he drinks when he's thirsty.

He has been running, he has made YouTube videos, he has been cooking al fresco (boiling eggs in a tin can, skewering sausages onto sticks and holding them over a campfire), he has been cuddling his lovely cat, Bobby, the recipient of all his affection!

Bedtime is still strictly under our terms though, as we still need sleep!

Living like this works for PDA boy, but it does come with its own challenges.

We have four children, all with different needs to be met.

This means that holiday time for me is a hectic mess of planning, refereeing sibling squabbles, and grabbing any moment I can to have some peace and a cup of tea.

When it comes to socialising, we try to limit how much we do, as too much means we all end up burnt out and fractious.

In a week, we tend to stick to one or two social events. These can be difficult, as PDA boy adjusts to demand filled time when he has been given the freedom to be his own master, so meltdowns before and after are to be expected, even though he is keen to do these things.

Take today. PDA boy has a friend visiting (I intend to write a post about friendships, so I won't go into detail here). Until his friend arrived, PDA boy was shrieking for no reason, needed to be supervised 100% as he was "playing" too roughly with his little brother, throwing things, all because of the anticipation of someone coming.

Now his friend is here, he is fine, they have been to the park to play, this afternoon they might do some gaming, all is quiet, I am able to sit and write peacefully.

This evening, all hell will let loose. We will be armed with distractions, games, walks, anything that sees us through the evening until bedtime. In all likelihood he will have a meltdown that we will not be able to prevent.

Tomorrow he will be more agitated and we will need to work hard to allow him control at a level that will let him calm down again.

Holidays are a time when we feel we are getting somewhere and can see improvements in behaviour, unlike school time when more often than not, we are firefighting, constantly parenting a stressed out, anxious child.

In terms of parenting, holidays are more difficult and intense, PDA boy is very demanding, but it is good to see him happy and flourishing.