Friday, 27 January 2017

I don't think PDA is as rare as we're told.

I'll start with a disclaimer. I'm not an expert, not in the qualifications sense anyway. I have read widely around the subject of autism and PDA, and I have spent much of the last couple of years hearing very similar stories to our own with alarming regularity.

This has got me thinking, and I have a theory about this. It may be rubbish, you have been warned! This will almost certainly be disjointed and waffly as I have a helpful PDA boy around at all times now, so I'm grabbing brief moments to rant write.

To recap briefly on our experiences:

PDA boy became increasingly unmanageable and violent when he was six. Whilst the headteacher at school was lovely, PDA boy's teacher was dreadful. She was one of those, sadly not uncommon, teachers who doesn't really believe in autism unless it is obvious, she believes all students should sit smartly giving full eye contact, even those poor pupils who find eye contact uncomfortable, yet when a child will give eye contact, this means they are definitely not autistic. Because PDA boy also masked this was seen simply as a parenting problem, he was fine in school therefore the problem lay with us and only us. Even with a detailed hourly diary implemented by PDA boy's OT (occupational therapist) which pinpointed exactly how events during the school day were leading to very difficult behaviour at home, school were still in denial about his needs.

This pattern has been repeated at every school PDA boy has attended. There are a few notable people who have been amazing, but on the whole, the many people who have worked with him have been able to run with their own rigid views about autism being obvious and children being naughty little so-and-sos.

Unfortunately, the way that assessment processes in many areas work, relying on schools giving accurate details and having a knowledge of autism that, to be frank, even many experts do not possess, means that for so many children who mask or do not show the most well known signs of autism, they are likely to go unsupported and undiagnosed, with unfair assumptions made about them (weird, manipulative, naughty) and their parents (weak, useless, pandering).

There is also the issue that for many children who don't mask, they may not be showing the expected behaviours, perhaps eye contact is not a problem, they may be eloquent and be able to mix ok with others, so even when concerning behaviour is shown, lashing out, frequent outbursts of anger, rudeness, or like a child I know, being unable to take part in work that doesn't interest her, hiding when overwhelmed, and these are all seen as wilful, disruptive behaviours, rather than spotting that their conduct indicates a root in something other than naughtiness or a desire to disrupt lessons.

So many signs go unrecognised as potential autism, and are dismissed by people who simply do not have the qualifications or experience to do so.

Plenty of parents have the experience of schools filling in important questionnaires incorrectly which obstructs the diagnosis process, but they have limited chance of overturning this; the common assumption is that parents lie, teachers don't.

During PDA boy's assessment his ADOS results and our DISCO interview (both where he scored over the threshold for ASD) were both ignored in favour of school observations. We know he showed signs in school as the NHS psychologist had spotted them and told us, even if she did then leave them out of the final report. We know he showed signs in school because parent volunteers, in to read with children, would warn me of impending meltdown as they could spot the telltale signs of blank, still face and redness under his eyes. If they could spot it and they were only in school for brief periods of time, it has led me to believe that some teachers (most in our experience) simply do not want to engage with any suggestion that a child may not simply be naughty, so deny everything, and because they are the experts in children, their opinion holds more value.

I live in a rural area, lots of green fields and countryside, generally a lovely, quiet area. Within a six mile radius there are three small schools each with between sixty and a hundred pupils, possibly 240 children in these schools in total.
I'm a bit of a hermit, I tend to keep myself to myself, I don't gossip, so I'm not best placed to hear about children having difficulties in school, yet in this small area I personally know five children who are having the same difficulties as PDA boy did in primary, having spoken to their parents, they appear to tick boxes for PDA and either mask exceptionally well or present atypically. Again, my disclaimer, I am not an expert, there may well be other explanations for these childrens' behaviour, but it strikes me as interesting that in my tiny world I know five children who are displaying behavioural problems in line with PDA, and each and every one is receiving no support in school, and when the parents approach school, the issues are dismissed, ignored, denied. Just like they were for us.

So my theory, in a nutshell, is that there are more children with PDA than are known about, and because children with PDA often do not present as typically autistic, they are far more likely to fly under the radar. When teachers are relying on their limited, outdated autism knowledge, which often focuses on common ASD myths (eye contact, no friends, "look" different), this will mean more children go unidentified. Add this also to a system which values the opinion of such teachers over that of parents who live with the child and often have to manage the fallout following their child's day at school, you can see why so many parents find the assessment process traumatic and unhelpful.

For a child to receive a diagnosis of PDA several things need to happen:

Parents need to know about it in order to understand that this may be what is causing their child's difficulties.
Teachers need to accept that autism is not always obvious to them.
Support workers need to recognise the signs of PDA, either from observations or from telltale traits when the child is discussed with parents.
Referrals must be made to the correct place, somewhere that will recognise and diagnose either PDA or ASD with demand avoidance.
When all of the above fails, as it is more than likely to, we then rely on parents being able to find the money to go private, or to be able to persuade their GP to refer them out of area with CCG funding (which is only likely to happen in the most extreme cases).
It's quite easy to see how so many children and their families cannot access adequate information, understanding and support, and it is obvious to me that in many cases this process cannot be followed, due to lack of knowledge and poor judgement.

When PDA is declared a rare form of autism, it is going by the small number of children who actually reach the point of diagnosis.
When people with PDA are well known to be sociable on a surface level, and are often able to mask to a high degree, it stands to reason that current diagnosis rates are probably much lower than they should be.

So what could be done?

First and foremost, autism training needs to be vastly improved. Ideally involving autistic people, who better to advise on all matters autism than those who personally know the struggles and pitfalls intimately! We also need a better understanding that autism does not always mean the most extreme traits all of the time, which I have noticed in training sessions, even when delivered by support workers with a lot of experience, which leads me to believe that generalised ASD advice can be counterproductive. Far more useful to aim to support individuals, working with parents to learn how best to support the individual in question, although in a school unwilling to support a child using well known ASD strategies, a personal approach may be beyond them.

We desperately need to drop the horrible assumption that parents are being dishonest, or aiming for some sort of gain, financial or otherwise, instead of parents seeing differences in their child and desperately trying to help them.

I don't think teachers should be given such a big a role in the diagnostic process beyond facilitating observations and taking on board more appropriate strategies. An autism diagnosis is a medical process, there is no place in proceedings for individuals whose knowledge is often steered by personal opinion rather than fact.

There must be more acceptance about PDA. We are at a point in the country where confusion is rife. Some areas are beginning to accept and diagnose PDA, in other areas PDA is flatly denied. In my area, CDC is beginning to accept PDA, CAMHS is in denial, so even if a child does receive the correct diagnosis, obtaining any meaningful support can be impossible. Unfortunately, when it comes to ASD and co-occurring mental health issues, there is too much leeway for unhelpful personal judgement to obstruct timely intervention.

I don't think PDA is rare, but I think we are still a long way off a point where there is the expertise to reliably identify it, and a long way off there being adequate understanding in the early stages of the diagnosis process.

Sunday, 22 January 2017

Decision made; Home education here we come.....

A few months ago I attended a talk about PDA by Dr Hilary Dyer (an educational psychologist who specialises in PDA).

During her talk the question of education cropped up, how to help children with PDA cope with school. Alongside her advice and suggestions of strategies to use, she spoke about home education, and how this may be the best way to educate our children.

At the time I remember sitting feeling a cold sweat of horror. No way. Absolutely no way could I willingly keep PDA boy at home all the time. I know I don't exactly come across as Caring Mother #1 here, but this is how I felt. PDA boy is very lively. If he has an idea, he has to do it now, right now, no waiting and careful planning for him! Having to wait brings about frustration and certain meltdown. To say he keeps us on our toes is an understatement. We are very different in character.

I don't have an impulsive bone in my body. I like to have things planned, spontenaiety is scary. I also tend towards very low energy levels. This has brought about high levels of guilt on my part. If I had more energy, if I could be more spontaneous, I could take him out of school which, even back then, my gut was telling me would be the best thing for him.

We limped on through school, he had a promising start at secondary, although in hindsight he was doing exactly what we predicted he would do; mask perfectly for a few weeks, the cracks would then start to show, then he'd crumble. If he'd received adequate support from the start he may have lasted longer, but as it is, lack of support meant the cracks started to show by the end of the first term, earlier than we predicted, the crumbling started halfway through Christmas term. Once cracked, it's very difficult to piece things together again in the same setting, where he is reluctant to do anything that marks him out as different and anxiety levels are too high for him to see any way to improve the situation.

The decision to home educate was initially a slow burning one. There hasn't really been a desire to remove PDA boy from school, but at the same time there's been an unshakable feeling that this would be the best thing for him.

PDA boy is the sort of boy who could be academic, but only if he is self-motivated to do so. His motivations do not lie in maths, or IT, or art. He is a born bushcraft boy, obsessed with survival and all things grim. This did not stand him in good stead at school. He had no interest in the subjects taughht and could not cope with the constant stream of demands, and because he masks and appears fine, expectations for him were high. When he struggled I still got the impression that teachers felt he wasn't trying hard enough, when the effort it took for him to be there in the first place was immense.

The last few months, since late October, have been difficult with no let up, he has been stressed and angry which means meltdowns, lots of them. It has meant less time for our other children, who also have needs to be met, less time for our animals, the dogs have had cursory attention and minimal walks. My husband and I take it in turns to be on duty, one of us tries (and invariably fails) to be positive and parent the PDA way, whilst the other has a temporary collapse, trying desperately to decompress until it's time to be in charge again. How PDA boy must have been feeling in this time is beyond me, the poor boy must have been feeling dreadful. Suicidal behaviour has been on the rise, he swears non-stop, he needs a lot of effort to keep him occupied and we need to stay off the subject of school, because a mere mention means meltdown or sobbing.

None of us can sustain this. Every single one of us in the family is exhausted.

The catalyst to make the decision happened very quickly. In the scheme of things PDA boy has not been school refusing for long, but in this time we have noted a couple of things:

1. He can't cope with the pressure of knowing he has to go back to school at some point. This means he cannot wind down at all.

2. There are no strategies that we can think of that will be suitable. All strategies rely on some compliance, but due to high anxiety, compliance with strategies that may mark him out as different are impossible for him to do.

In short, we could not find any way to get him back to school and to stay there.

The best plan seemed to be to accept that he was to be at home and put a plan in place so we can all cope, rather than winging it and hoping that he would return at some point.

We are expecting mixed reactions from people we know. Over the last few years we have learnt that for someone whose only contact with PDA is a boy who masks expertly, it is difficult to grasp how severe things can be. We have tried to explain, but it is beyond the understanding of those whose children largely respond to normal parenting techniques, and their responses always go down the route of us not trying hard enough, being too soft, and whilst this can be hurtful, I do get how difficult it is to fathom something you have no comprehension of.

My parents are being very supportive and have offered to have PDA boy once a week, which is fantastic and will allow me some time to be silent, peaceful and still.

Our hopes in deregistering PDA are that he will finally be able to relax a bit. We are hopeful that the constant need to be active will calm, and that anxiety levels will fall. This should mean that life for everyone in the family is easier. We will be focusing on reintroducing the incredible 5 point scale, something that dropped off when things became so difficult we were constantly firefighting. We will be introducing sensory play, and helping PDA boy learn strategies to help himself regulate his moods better. We will be joining local groups, and we will be doing bushcraft, lots and lots of bushcraft. In fact, as I write, he is up at the field with his dad and brother, building a fire to cook a whole trout which he gutted earlier. I can foresee many Al fresco meals in our near future!

We know this isn't going to be easy. Easy would be to have him spending his days at school and coming home to relax, have his tea and have some family time, but as apparently this is not an option that works for him, we have to do things differently in a way that will hopefully work for him. I am concerned about how this will work out, but home schooling is a far more inviting prospect than continuing to push him in a way that is making him angry, anxious and suicidal.

Saturday, 21 January 2017

School Refusal.

Wikipedia's definition of school refusal goes as follows:

School refusal is the refusal to attend school due to emotional distress. School refusal differs from truancy in that children with school refusal feel anxiety or fear towards school, whereas truant children generally have no feelings of fear towards school, often feeling angry or bored with it instead.

In schools' quest to perfect their attendance records, I think they have lost sight of this.

The name "school refusal" is perhaps an unfortunate one and does conjure up images of defiant brats taking full advantage of their weak, ineffectual parents, and, heaven forbid, should there be two (or more) refusers in the same family, this is surely definite proof of naughty child vs. crap parents, but in reality this couldn't be further from the truth.

For my boys, (PDA boy and his older brother), refusal meant sheer terror of going into school. Neither had any choice in this dread, it wasn't a deliberate ploy to have a lazy day in bed, as so many people assume is the case, it was (and is) a manifestation of very high anxiety levels.

School refusal is very common when PDA is involved, and we are starting to wonder what the future is for PDA boy in school, as there are now no strategies that we can suggest, because all rely on him co-operating and doing things that he fears will mark him out as different, so all the difficulties he has with school have no solution that we can see at this moment in time, which is resulting in school refusal. There are little individual issues that we could deal with, he has received warnings for slapping a teacher’s hand away when they touched his head, probably as an affectionate gesture, not realising that this is very uncomfortable for PDA boy, but as this is only a tiny part of the much bigger picture, it would be a waste of our energies to focus too much on this. Being in school itself for him and many other children is extremely stressful, whatever the root cause. So far we are lucky, school are being largely understanding, I think the official diagnosis helps matters, as our experience with his undiagnosed brother was slightly different.

Our older son had a chequered school history, bullied from age 8, his start at secondary was difficult, he was targeted by one boy who brought him to the point of breakdown two months into the first term, we removed him from school, allowed him a few weeks to recover before starting at a different school. At this point we had no suspicions of any special needs, and no understanding of school refusal beyond him being stubborn and making poor choices (which we now regret as we have a better grasp of what was going on). School refusal was an occasional event, regular enough to bring attention to his attendance, but to start with not enough for flags to be raised.
In year ten this escalated to regular refusals, and more extreme behaviour at home. As so often happens, without a diagnosis there was very little support to be found, and when attendance started dropping dramatically, we were given what appeared to be veiled threats about being taken to court, about having to make more effort to get him into school. This on top of the immense stress of trying to get him in was very unhelpful and meant that the anxiety over school's reaction and requests to ensure he was in was prioritised over doing whatever we could to help our son (something else we regret). Eventually we realised that none of us could sustain this level of mental strain, so we deregistered him from school.

School refusal can be a symptom of many other things, bullying, anxiety, depression, bereavement, so many things it would be impossible to generalise about it, it is a very individual thing.

For us, and probably many others, the worst part of school refusal is the uncertainty and unpredictability we face when it comes to managing it.
We were keen to meet PDA boy’s school’s education welfare officer (EWO) when we first realised this was likely to be an ongoing issue. We went armed with printouts and individual information, ready to share as much as we could so we could show that we wanted to work with her and school to find strategies that would help the boy to overcome his fear and access an education.
The EWO gave every sign that she didn't want to be there, that she was disinterested in anything that might help our son. Her words of wisdom included "Just get him in!" And "Well, you chose the school, if you don't like it he doesn't have to be here!" which left my husband and I feeling helpless, misunderstood, unsupported and wary of any future involvement we may have with her.

Like so many incidents involving education and special needs show us, there is often a complete lack of understanding from those in a position of authority which puts families at risk of unfair assumptions and worse. Parents are taken to court and fined for their child's low attendance, which is grossly unfair. These children are not naughty truants (or more accurately; children who for whatever reason are disengaged with a system that isn't supporting them adequately either), they cannot be punished into submission, and neither can their parents. Punishments and pressure are not the answer when it comes to anxiety related school refusal.

Assumptions that we are being weak are unhelpful and wrong. When PDA boy cannot go to school, I get the impression that others are picturing the following scenario:

PDA boy: I can't be bothered to go in today.
Me: OK darling, you stay in bed and I'll bring you a hot chocolate. Anything else I can do to pander to your every whim, my dearest darling child, who I cannot bear to discipline?

The presumptions that others make are wrong. The scenario is far more likely to look like him being unable to get out of bed, sobbing uncontrollably, having violent meltdowns and hyperventilating.

Trying to force him in would result in us being attacked, and supposing we did manage to get him out of bed and dressed, what next? How do we get him on the bus? Or into the car? How do we peel him out of the car and take him into school itself? From experience we have found that this is impossible, and from the point of view of a distressed child, very wrong. Authorities quite rightly take a dim view on children being manhandled, which would certainly be necessary in order to comply with the EWO's "just get him in" wishes.

I don't know how this situation can be solved, but I suspect that for these children more understanding and less pressure would be more helpful. Understanding that their non-attendance is not a deliberate choice, and that their fear is very, very real. Understanding that pressure is more likely to have the opposite effect and push the child further and further away from being able to attend school.

If an adult was in this state about going into their workplace they would have options, they could leave and go somewhere more suited to them, they could be signed off sick by their GP to allow them to recover and be in a better place to make a decision. For our children, there just aren't the options available. School is seen as something that has to be done, not all parents are able to home educate, Drs are limited with how much they can do to help as CAMHS is the go-to organisation for our children, except they often don't accept referrals unless the child is self-harming or attempting suicide, and many referrals take months to be responded to, so us parents are having to learn on our feet, be our childrens' therapists at the same time as taking the flack from all and sundry assuming we're not being forceful enough.

In the meantime, it's important for us to continue logging the reasons why PDA boy cannot attend, the strategies offered and the boy's reasons for being unable to try them. We email school with details of his absence, as its important to have a paper trail and be able to prove that we are working with school in order rectify this little problem. We also leave a note for our GP so PDA boy's medical records are up to date and what measures we are taking, and speak to her regularly. Luckily she understands the issue, having taken it upon herself to learn about PDA and its various ways of manifesting itself. Once again we are very grateful to have the GP that we have.

Like I said, we don't know what the future holds for PDA boy and his secondary school career. I suspect home schooling, more specifically unschooling, is on the horizon, but whatever we do, we will do whatever we can to give PDA boy the opportunities he needs to reach his full potential.

Tuesday, 17 January 2017

A low point, and more thoughts about masking.

PDA boy is unable to go into school again today. Whilst this is only day three of refusal this term, I am very worried about it and how we fix this.

PDA boy finds it very difficult to pinpoint what it is about school. Things are fine with friends. He hates most teachers, because they tell him off all the time - mostly because he's talking too much (avoidance tactic of choice), and he seems to have little understanding or control over this. This morning we had an angry moment about the corridors at school, but got no further with this particular train of thought.

I have noticed there is a little bit of improvement regarding self-advocacy. With two people he is able to be quite honest about how he feels about school (hates it) and that he'd rather not be there. However, this small amount of honesty has somewhat backfired as these two people now expect everything that PDA boy speaks to be entirely truthful, when it's not. Masking is still taking over most of the time.

When PDA boy is in meetings, he has a habit of latching onto what people are saying and keenly agreeing with them, so in the last meeting, when someone talked about low energy levels and how tired he must feel, he agreed, when in reality low energy levels are rarely a problem, in fact it's the opposite which is the issue. Whenever PDA boy feels anything, an emotion, or he has a need (he's too hot, he's hungry) he will outwardly show too much energy, he will be positively hyperactive, although he does try to contain this in school, I highly suspect that this explains the frequent chatting, rudeness and giddiness. PDA boy also went on to agree to use a visual aid to help share how he's feeling with a specific person, once home the first thing he said to me was that he wouldn't be doing it - having appeared eager to try it.

My position is difficult in this. In the past I have been quick to share feedback, but this approach was steering me towards trouble, because he will only be honest with his safe people (me and my husband), and revert to masking like a pro with others, this reinforces others' opinions that we are the problem.

PDA boy will give every impression that a new strategy will work, and that he is keen, no, excited to try it, not because he is, but because he is astute enough to know that this is what people want to hear, much like answering "fine" when asked how you are (although I rather stuffed that up this morning and sobbed at a poor woman I barely know. And I blew a snot bubble which in certain situations I'd have been quite proud of, but this morning it just added to the "oh god, what am I doing!"). PDA boy also knows that realistically, there's not very much that can be done. Just being in school is difficult, any intervention will be the equivalent of putting a tiny plaster on a gaping wound, and is unlikely to solve the problem, being PDA, the issues are a little more complex than a need for routine, which is something school can offer. Every lesson is difficult because PDA boy is being told what to do, this is school, this is to be expected, and managing the situation in a mainstream school is looking increasingly complicated and unlikely.

And here's where my low point comes into play.
My gut instinct tells me that PDA boy should be home educated. He would thrive with days spent doing bush craft, making fires, whittling sticks, shifting pig poo from one place to another, using his energy in ways that make him feel fulfilled and calmer.

But.....I don't think I can do it. PDA boy is an extrovert. He likes being with people, likes being busy. I am an introvert, a low-energy introvert, the strain of the last few years have meant I need regular periods of time alone in silence in order to manage the rest of life.
Whilst my needs do not trump PDA boy's, I do need to take into account my own needs, because I will need to be able to keep up with him at his extrovert, high-energy pace. This makes me feel more guilty than I can say. I know how much I am letting him down by persevering with school, by hoping that things work out.

It is an area I will think about though, see if I can come up with some solutions that might work for the family, but in the meantime managing the anxious outbursts means that very little else is done in the PDA household, the need for constant supervision is all-encompassing, and my already shaky mental health is threatening to erupt in more of an earthquake than a tremor, and balancing everyone's needs has become a near-impossible task, so something needs to change.

Monday, 16 January 2017

Attendance Awards.

I have received a text from school, and I'm seething. And most probably over-reacting! Please expect high levels of sarcasm.

Attendance awards, a prize draw for all those children who are lucky enough not to be ill, whose attendance records aren't marred by whichever weakness has overcome their ability to present themselves in school each and every day.

Children are being rewarded for something which is outside of their control. How does this teach our children anything? If anything it proves that schools are wanting high attendance at all costs, nothing matters more than your child being in school.

Would it not be more productive to introduce an award that will motivate children? Something they could actually achieve and feel good about themselves? Something that is fair across the board and accessible to all students?

The prizes this year are vouchers. Last year children battled to stay healthy to win a kindle (a reading type, not a tablet type, so actually the children weren't too bothered to win it, but still, it's the principal!).

Amongst the scivers, sorry, students who didn't attain greatness, ahem, have acceptable attendance, that should read, are children who carelessly succumbed to the nasty cold doing the rounds before Christmas (I had it between Christmas and new year and barely surfaced for the week!), the tummy bug that felled many of the weaklings, sorry, students, the poor unfortunates daft enough to choose to be chronically ill.

No matter what their attitude in school, contribution to peers, effort given, if you're ill, you don't qualify.

Am I alone in believing this to be utterly ridiculous? What next? Reward children for being the correct body shape? Right hair colour? For having blue eyes? They're largely down to luck and genetics too after all, so why not?

This year PDA boy will miss out as his anxiety has meant approximately fifteen days off school so far. Despite our government's assurances that mental health in this country's young population will be taken seriously, it is still viewed as the child opting out or being pandered to when they are too unwell to be in school for anything other than physical reasons. Due to the nature of his disability (that's right, a disability, he is in no way choosing to be so anxious that he can barely function), school refusal is something that can be avoided when careful support is put into place, taking into account the complex nature of PDA coupled with the masking, which despite outward appearances does NOT mean that he is coping. Sadly though, because support is largely based on apparent needs, PDA boy was allowed to get to the point where school refusal was unavoidable.

This term there's been an apprehensive, wobbly return to school for PDA boy. The announcement of attendance awards has increased the anxiety, and added to his low opinion of himself. He doesn't perform well academically due to anxiety. His behaviour isn't fantastic, due to autism, anxiety and sensory issues. His homework....well the least said about that the better! And now he can add attendance to the list of things he feels he is failing at.
There are many areas where he does shine though, he can be very kind and thoughtful, particularly to his neurodiverse peers, he is good at sports, he is funny.
There are so many decent human qualities that can be focused on amd awarded for all students, ones that can be worked towards by anyone in the school, ones that are attainable to all children, no matter how unacademic, non-sporty and unhealthy they are, ones that would encourage people to be nicer to each other and care for each other, encouraging worthy attributes.

I would like to add to this, having read some feedback, that indeed this is not a lash-out at my children's school, attendance awards are commonplace now. More and more pressure is put on schools by the government, asking the impossible of teachers who in turn, reluctantly, must ask the same of their students. I haven't met one teacher who is happy about the developing situation within education, or who feels that the government are making the right choices, but ultimately it is our children who will suffer the most, who are suffering record levels of mental illness. Attendance awards are another sign of priorities gone wrong.

Friday, 13 January 2017

Go and get a job.....

Possibly a defensive post this, you have been warned!

We are permanently pennyless. We manage to do a lot with what we have, and we try to give our children happy times and we keep quite a few pets, who are all (with the exception of Sooty the cat who leaves home and only returns to vomit copiously in awkward places) very therapeutic and calming, in a household that needs all the calming it can get!

My budgeting skills are on a par with my ballet skills (non-existent), so there is often a frought period throughout each month when I have inevitably cocked up and not recorded how much I've spent on food; pig, human or otherwise, thus buggering up my husband's careful notes on how much we (and by we I mean I) have spent each month.

Holidays are rare, nights out never happen, the amount of planning and forethought necessary for anything outside of normal day to day living mean that it's easier to stay at home. It's also cheaper.

There are many times that I wish we had more money. Could afford a bigger house. And more pigs Could buy new clothes and shoes without worrying about adding to the credit card bill, and the obvious answer is that I get a job.

Since PDA boy was born, over eleven years ago, I have been at home. Having a third child was the tipping point where money I earned < cost of childcare

The obvious solution was for me to stop work and take care of the children. I managed to make a little money once PDA boy started going to a local playgroup, but nothing full time.

The plan was that when all the children were at school, I would would find a term-time job.

This never materialised.

We had the problem of school refusal from our oldest, bullying which necessitated meetings in school hours, six weeks of him being at home to recover and start at a different school, bus refusal (more school drop offs and pick ups), more school refusal and after five years of exhausting battles, home education.

Also during this time there were difficult times with PDA boy, lots of meetings (school hours again), assessments (school hours), involvement with support workers (yep, you guessed it, school hours!), referrals to CAMHS (school hours), school meetings arranged to work around everyone's schedule but mine, because as parent and carer of the boy, my presence at these occasions was unnecessary.

During the last year or so we also add the youngest child's difficulties in school, the crippling anxiety, the lack of care from those in denial about how awful he felt, the worry as he stopped eating and made himself ill, the worry as he repeated the same phrase to us over and over from 3.15pm to past 10pm every single night for over a month.

Add into that a daughter discovering the joys of being a teenager, whilst this has never been a problem as such, added to the fiery mêlée meant less time to deal with this and understandably more resentment all round.

My prospect of earning any money was constantly pushed down the list of priorities. Don't get me wrong, I wasn't disappointed by this. I think managing everything and working as well would probably have pushed me to total breakdown, as opposed to the steady decline in mental health, but generally managing to hold it together for the last few years.

To others though, outside this situation, "Go and get a job" seems like the easiest thing to do. No money? Get a job!

Where will I find a job that allows me time off for each and every appointment I need to attend? Appointments that go way beyond the occasional GP appointment and visits to the dentist twice a year.

Where will I find a job flexible enough for me to have the regular mornings sitting by the phone waiting for the GP to ring so I can update her that PDA boy has yet again been too anxious to go to school, keen for there to be a reliable record of his anxiety.

Where will I find a job that will allow me two and a half weeks off before Christmas because PDA boy is school refusing and is in such a state he has to be supervised constantly and cannot be left alone.

I admit there are times when I look at my life and see that to others (not all others, but some definitely) I will be considered a scrounger, living off her husband's lower than average wage. Then reality hits, and I realise that, for now, there is no other way. We are lucky to be able to keep our pigs who bring us so much joy and give purpose to our days, probably more so to us than luxuries that other families enjoy, and on the whole we are very grateful for what we have.

I have plans which I hope will lead to flexible, self-employment, but until these plans can be fully carried out, no, I won't be going back to work, because this isn't an option that will work for me or my family.