“Living a Locked-In Life”

locked in.jpg The nearest I can liken it to, is what it must be like for a woman in a relationship where she is controlled, bullied and restricted by her partner.  Even though you know it’s because of a condition, PDA, it doesn’t make it any less unbearable.  And there’s not just one, we have two PDAers.

In the last year I have had to buy a safe to lock all knives and scissors into.  I have had to move my belongings that were placed in other parts of the house, into my bedroom and keep the door locked at all times.  Call me shallow, but my possessions do matter to me.  They are the only thing I can focus on, because I’m prevented from having a social life.  Property destruction is par for the course with PDA, at least when control is lost in a meltdown.  I’ve had to buy a lockable chest to keep all important documents in, when one of them went for the paperwork intending to trash it.

So the walls have closed in.  When I go out, you would think I had committed the worst crime ever.  These aren’t social events mind you, they are appointments.  And I keep appointments to the minimum (which includes my healthcare) just to avoid this situation.  Because when I return, I will most of the time be greeted by a duo of screaming, yelling, complaining and blaming.  How dare I go out.  How dare I abandon them.  For some reason even though I have told them in advance, apparently I never did.  Even though their dad is there, that’s not me.  And it can only be me.

I am under total control.  The consequences for stepping outside of what I am “allowed” to do, are verbal attack and sometimes worse.  It can be endless and enduring too.  So if I am tired from an appointment, I will already be not feeling strong enough to deal with this reception.

There is of course also the dumping of educational problems daily, again, it can only be on me.  It’s another method of control, an attempt to push me into making everything go away.

I sometimes wonder what it’s doing to my brain.  Apparently emotional trauma does change the brain.  And I’m not weak.  I have fire in my belly.  I’d have probably crumbled quite some time ago did I not have some strength of character.  But when it’s your children, where are the options?  There is no-one to ‘hand this over’ to.  The situation with PDA is so abominable, with a postcode lottery of recognition and shocking ignorance among clinicians, there is little hope of CAMHS stepping up any time soon.

So it’s an endless cycle of emotional overreactions and railing against the world, but directing it all at one person.  I don’t want to be that person.  I don’t even know if there is a therapy that works for PDA.  What I do know, is that if clinicians don’t understand the driving force of PDA and how the PDA child sees the world, they will have almost zero hope of engaging them, to help them.  That suits CAMHS of course, one more statistic off their list.  Would be too much hard work to train clinicians.  Easier to deny PDA exists at all.  Easier to say “Well if the child won’t engage.”

So while I’m clawing at the walls to get out of this locked-in existence, the authorities continue their political game regarding PDA.  See no evil, hear no evil, speak no evil eh.

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“Quietly Seething PDA ~ In The Bedroom Hiding Away”

angry girl #6.jpg It’s the school holidays.  The calm after the storm.  Also the calm before the storm.  It’s not so much the meltdowns right now, there is the odd one of course.  But the violence is gone, for now.  I know what’s coming though.  A new term brings with it a massive increase in anxiety and an inability to deal with it at source, a retention that brews like volcanic lava bubbling away, awaiting a release at the first opportunity.  At home.  During this ‘break in the hostilities’, there are still nonetheless, signs of what we are building up to.

Hiding away in her bedroom, interaction on her own terms, at her own times.  In the moments she does emerge, I dread a conversation, because I know it won’t just be a conversation.  There is a simmering, seething, blob of awareness inside her, that she has to face up to life and expectations.  She doesn’t want to.  This means that when she converses with me, it’s not relaxed, it’s antagonistic and oppositional.

She will seek a confrontation, by making an issue out of something that’s not an issue.  Almost like she wants to gain an opportunity to let out some of the lava.  But why not punch her pillow instead.  Why not go for a jog.  Whereas before I was treading on eggshells, in fear of a massive explosion, now I am having to defend the status quo as best I can.  Maintain some form of parental authority and boundaries.

There is often a pattern.  Repetitive questioning for which no answer will suffice.  So each answer I give, generates a “But…x, y, z” as if to place obstacles to the answer I gave and if I answer the ‘but’, there is always another one and another.  Until she can try to goad a confrontation.  I have to know the answer that is required and if I don’t give it, a rant will ensue.  Or it will be simply because she was told to do something, get washed and dressed, or go up to bed.  Even on the days that she complies, it will not be without complaint and angst.

I feel like I can’t even laugh with her any more.  It’s silly stuff we used to laugh at, the bizarreness of life and peoples’ quirks mostly.  But how can you laugh with someone that has destroyed your trust in them, your trust in the world?  Someone who could hurt you and target you.  Someone whose anxiety was that great, that in their explosions they blamed you and simply didn’t care about how much they harmed you, their anxiety took precedence.

I never did get that saying…

hurt

She seems content to be in her bedroom.  Hiding away from the world.  Refusing all suggestions to contact schoolfriends to go out.  In her own safe little bubble.  So much so that leaving this nest for a short while, can generate such a fraught communication style.  So I know.  I know it’s there.  I know we are treading water until the holidays finish.  Snarky, snappy, disrespectful, rude and oppositional holidays.

It’s because, in the words of the gas pump attendant at the end of Terminator

~ “There’s a storm coming in…”

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The Dark Side of PDA (When the Balance has Gone)

Dark Side Everyone has a good and a bad side, a light and a dark. Mostly people suppress their most negative traits, maybe letting little bits leak out here or there.  The odd white lie, the pretending you didn’t see someone to avoid them, exaggerating something to look better.  People try to be socially acceptable and likeable.  What do you do, when your child’s neurology, along with the deal life has dealt them by the time they reach teenaged years, means that eventually the only visible facets of them are the negative?

It used to be that it was all about extremes.  The laughs were really funny, the anxiety was really chronic and the meltdowns, really bad (although less of them in those days).  You remember times you laughed at stuff together.  You were proud of their achievements and you were behind them every step of the way.  But then they morphed into a much darker version of themselves, until it got to the point you don’t know who they are any more.  And every interaction with them has become something you actively dread, they feel like an alien, a changeling and the extremes are all on the dark side now.

Yesterday there was another episode.  I’ve lost count of how many or how frequent now.  They all blur into one.  One long, torturous, aggressive meltdown.  I recently listened to a podcast in which it was described that PDA children can in fact develop personality disorders alongside their PDA.  I wonder whether this has happened.  All logic and reality seems to have been lost and so many of the descriptions fit.  I feel like I am in a living nightmare that I can’t wake up from.

I know why it’s happened.  The demands of life became too much for her.  She’s not ready for any of it.  She can’t cope with life.  I can do scared, I can do upset.  Those can be comforted and reassured.  It’s the viciousness I can’t do.  The controlling and manipulation that’s too much.  Someone pleading for help tugs at the heart strings.  Someone assailing you with torrents of vile words, lies, bullying and physical attacks, doesn’t.  Whoever is doing it, the effects are the same.  And it shows no signs of letting up.

Call me human.  Call me a failure.  I want to run away and save myself.

I tried for so long.  I tried so hard.  But the system broke me and my own child worked against me, by putting it all on me to solve and pouring every negative thing onto me, all in the four walls of our home.  Made me realise the futility of it all.  Life is life, you can’t change the world for your child.  They have to accept it as it is.  You can’t fix someone so broken from living a normal life, some people can’t be helped, for whatever reason.  And to try – and when it’s your child you do try – you eventually end up broken yourself.  The pain of realising that as a parent, your best efforts to help your child and make it all better like they asked you to, were not enough, make you feel even more broken.

PDA feels like the worst torture that can be inflicted, both on the family and the individual with it.  It’s like everything you try gets you nowhere, every suggestion someone makes, you’ve already been there and got the t-shirt.  So you realise there is nothing.  Every time I think she needs to be an in-patient, I remember that she would go into absolute masking mode in front of professionals to avoid it, they’d probably think I was demented for even suggesting it.  Even if she went, I know they wouldn’t understand PDA and I just think of her traumatised by it, and I can’t do it.

If someone had ever said to me years ago, that I would be thinking of walking away at some point, I would have strenuously refuted it and told them I would die first.  Everyone has their limits though.  They say you have to be kind to yourself, to love yourself.  Of course parenting is about putting your children first, they don’t ask to be brought into the world.  But this is ‘extreme parenting’.  And when you realise that to break your child’s obsession with you, to push them to find new ways of coping, because they have made you part of the problem…well, saving yourself doesn’t seem so selfish.

The alternative, is that I see my life stretching before me, a probably reduced lifespan from the immense stress, in inertia from emotional distress and basically giving up totally on myself.  The effect of this on my already precarious physical health, is that I can see me relying on a wheelchair in a few years’ time.  Who would want a parent like that.  A shadow of their former self.  A person so subdued and shattered that they have no spark left.  Someone unable to find joy in life.  I remember that I have worth too, that I deserve better.  Isn’t there a child inside us all?  Why does being an adult mean you have to endure such pain without any solution to it?

~ When your child is on the dark side, you reach for the light.  You hope with everything you have, that your child will find their own light, you don’t let them drag you both down into the pit.

reaching_for_the_light_by_shyrd

 

“Pathological Pain”

land of pain.jpg  There’s the pain of seeing your children seemingly unable to behave differently, when that behaviour is intolerable and you see no escape.  Anxiety-driven, suffering, struggling to cope behaviours.  Then there is the pain of not being believed about what they are going through and when you finally are, instead, being blamed for it.  Because those same children who release it all at home, where they know they are loved, will sit inert and compliant at school where they are afraid and overwhelmed.  The pain of looking through documents about your family and seeing lie, after lie, after lie, written about you, and misrepresentations and denials about your children.

Refrigerator mother is here alive and kicking, it never went anywhere.  It’s just got replacement  labels now.  ‘Emotional harm’, ‘fabricated illness’.  Struggling PDA children blame too.  Mum is the most obvious target, because mum is the one they spend most time around and they know mum loves them, no matter what they say or do.  They are in such anxiety and their need for absolute control so great, that they lash out.  So when you’re getting it in the neck from all angles, what else is there, but pain?

You try to do what everyone wants, you try to explain to professionals what your children’s needs are, but they don’t want to hear it.  They don’t understand the autistic spectrum and expect autistic children to do everything typical children do, and to do it in the same way.  So you have to be anxious or exaggerating, or fabricating when those things are difficult and your children don’t know how to speak up for themselves.  You’re not advocating for your children, you’re speaking for them and you’re lying.  You must have mental ill-health and be projecting that onto your children.  It’s all you.  You asked for resources and you are a pain in the ass.

You try to be as flexible as possible with your PDA children, to reduce demands on them, you don’t ask for anything.  (Not even appreciation or gratitude).  But you certainly didn’t ask for blame.  Yet you get it by the shovel full.  Along with knives being brandished at you, punches rained on you, your possessions broken and endless verbal abuse.  Anything they find hard, it’s you that suffers for it.  They refuse solutions and all offers of help with self-managing their anxiety.  It’s easier just to release it onto mum.  Learning self-help techniques is a demand you see, an expectation.

Miss Yourself

Day-by-day, the abyss yawns wider.  You lose your identity more and more until you are just ‘mum’, a fixture, a possession.  A disrespected possession.  Like a battered old shoe that gets kicked out of the way.  You aren’t depressed.  You are just stuck in a hell-hole that you can’t really call life.  It’s an existence.  Barely.  It’s amazing how you in fact aren’t depressed.  Many are.  It must be the numbness that you immerse yourself in, to get through.  It’ll come out one day.  Like a torrent.

Scream it off the top of a mountain.  Like ‘the men who stare at goats‘.  It’s the only way.  ‘The woman who screams off mountains’.  Until then, I’ll be screaming inside the walls of my mind.

“Parents are the Enemy”

Wisdom Authority  Didn’t you know it?  Of course you are.  The moment you become an adult you are responsible for everything and deserving of almost nothing.  The moment you become a parent, you are viewed with suspicion, you are a potential failure, a potential abuser, bound to be far less than the perfect you are expected to be, by professionals.  Professionals, who follow deliberately worded Government directives, that have an ulterior motive (financial of course).   An experienced ex-social worker knows this:

“Charles Pragnell, a former social worker who is now an international adviser on child protection cases, believes that the Government has good reason to avoid an inquiry. “The health, education and social services have diverted children and their families into the child protection system,” he says, “blaming the parents for causing harm to their children to avoid providing them with services.

“Why do we not, in Britain, have similar legislation to the Irish Republic, where false accusations of abuse are a criminal offence? More than 85 per cent of reports of child abuse are subsequently found to have no substantive basis and have been made for largely mistaken, mischievous, malicious or monetary reasons.” (source)

I just input a search term.  “harm to parents from using government services” and guess what came up? A long list of links to information about safeguarding children.  That says it all.  Children are important, they must be safe and well-cared for.  Just think though, the second they turn eighteen they will be deemed of much less worth (their status as weaponry will have sunk to zero) – and if they are a parent, the enemy.  Children are being used to keep parents in their place.  And adults are no less important than children, a human being, is a human being.

Parent blaming is widespread.  UK law says the child comes first, whilst entirely ignoring that the child is part of a family unit and not existing standalone, not an island.  Attack the parent and you attack the child too.  Deflect the parent who is seeking help for their child and you fail the child in more ways than one.  But they don’t care, because it’s all deliberate.

There are virtually no sources of help for parents being abused by their children.  Autistic children, especially those with pathological demand avoidance, can be incredibly violent in meltdowns, which can be frequent.  But where do you turn for help when you have experienced the parent-blame attitude from professionals already?  The risks are high that they will be of the opinion that the child is behaving like that for a reason and the reason is your fault.  Especially as the claims are that special needs children are more at risk of abuse.  Although I do question how many of the research figures, were actually from falsely accused families.  It’s a claim that suits the Government’s agenda.

Yvonne Newbold, special needs parent, has written a blog post about the violence of such children.  Yvonne says:

“Sometimes, instead of helping a family, telling a trusted professional and asking for help can make an already very difficult situation far worse. Sometimes, because a professional hasn’t had any training and can’t be expected to understand the root causes or to know just how very common this behaviour is in children, they jump to the wrong conclusions and blame the parents for their child’s violence. Sometimes, there are so many misunderstandings and wrongful accusations that the children, or their brothers and sisters, are removed from their parent’s care altogether.”

With autism families being targeted so frequently for false allegations, parents are therefore usually forced to suffer in silence.  (Also handy for services as they get to avoid spending on those families.)

And if you have already drawn the ire of the LA for seeking resources for your child, if they have already been blaming you, wouldn’t they just love to find an excuse to go to town.  Another blogger explains the harm to autism parents here:

“I feel broken. As hard as it has been being a mother of the children I have, that job has been made so very much harder by the government’s systems. From the first day you reach out for help with your child, it’s like a highly judgmental never-sleeping set of eyes enter your life. They first assess whether the child’s problems are all your fault as a faulty parent…”

Couldn’t have said it better myself.

My health has sunk so low that I feel twice my age.  I suffer such fatigue that I am unable to keep active and have gained weight, all I want to do is sleep.  I seem to catch every bug going and take ages to recover.  I appear to have lost a third of my hair and look so careworn and washed-out, I’d feel sorry for me if I saw me.  It’s in my mind daily, that I need to leave my family (who I love) to escape the hell and save myself, before I go entirely under.  I know there are many autism parents out there in this situation.  Just know, that you are not alone, even though you may feel incredibly so.  And to anyone thinking “what a pity party”…

Judge not, that ye be not judged ~ Matthew 7:1- 3

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