“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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“I Didn’t Want to be Right”

sadly correct Well, I did try to be proactive.  I tried to get medication prescribed for her before the SHTF.  Of course nobody listened.  It was all tick-box tardiness and inflexibility.  So college starts, after a torturous time getting her to even choose one and we’re back to the same behaviours, as I predicted.  Not full-blown violent meltdowns – yet.  But harassing, repetitive questioning, controlling my answers and blowing-up about every little thing.  “Little chats” are basically dumping sessions.  Endless complaints and pushing me relentlessly to agree that the college is awful and that she shouldn’t be going.

I’d love to brush it off, truly I would.  But I am already exhausted and suppressing trauma from her previous extreme behaviours.  I am apparently a worker of wonders, holder of the magic wand, devoid of my own feelings and able to stomach anything at all unflinchingly, like an android.  From the first day of term, the reactions started.  It’s the wrong course, the wrong college, people are weird, the work is boring/wrong/irrelevant, take your pick.  The complaints are mostly really small things, which makes it all the more frustrating.  Of course PDAers do make excuses.  They also attempt manipulation.  So accompanying the complaints, I am being fed a steady diet of tears, yelling, harassing and exaggeration, so that I will see that the college is awful and say “Never mind, you can just stay at home.”  I can see where this is all going.  That’s what she said she wanted before she even chose a college.  And now the blame has started, because things are getting ramped up.

Despite us telling her we just wanted her to be happy and it was her choice, she insisted we give our parental opinion at the time of choosing a college.  So we said which one we thought was better for her, but that it was ultimately her choice.  Now it’s a case of, “You wouldn’t let me go to the other college!”  I know when she falsely accuses and lies, that it’s not true, but it doesn’t hurt any the less to be blamed and accused.  I have to keep reminding myself, that despite being a teenager, in many ways she’s like a much younger child.

I’m trying to stop her dropping-out of the course, but the signs are all there.  I’ve told her she would be bringing her difficulties to wherever else she went and that running away isn’t the answer.  I know it’s falling on deaf ears however.

Really, I blame the system.  The system wouldn’t help us.  The system would rather wait until people are in crisis before it listens.  Parents try to throw their child a life-jacket.  But the system would rather wait until they’ve gone under and then mount a search and rescue to retrieve them.  Life-jackets are simpler and cheaper.  But the professionals have ears as deaf as our daughter when we try to encourage her to work through her issues.

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It appears the system doesn’t like parents knowing their children, being able to foresee difficulties based on expertise in their own child.  The system wants to stick it’s fingers in it’s ears and go “la, la, la, la!”  I didn’t want to be correct, I so wanted to be wrong.

And we are still fighting to get the medication we requested many weeks ago, with everyone concerned knowing she has extreme anxiety and is at high risk of refusing to attend college!

“Obstructions in the Face of Your Best Efforts”

obstruction Some days, it gets kind of overwhelming.  Like when you are trying to proactively find solutions for your PDA child and face more obstructions.  I haven’t recovered from term-time still.  The devastation from the levels of violence and harassment have been squashed down, just to get through the days.  So much calmer in the holidays, but the holidays are almost ended.  She will have to go to college and it will all start again.

There was a professional recommendation for a particular medication that a GP can prescribe, for her anxiety.  So off we trot to the GP, a feat in itself since the last visit there, there were full-on meltdowns and ranting.  Our GP, for some reason, won’t play ball.  Rather than see, that here before her is an autism family that has been through hell and wants to avoid more hell, it’s about her own “discomfort” as she hasn’t prescribed that particular medication before.  She wants to have it done through CAMHS, even though that is not necessary.

Daughter won’t go back to CAMHS.  To be fair, I don’t blame her.  They were useless.  But also I do understand that her PDA made her pretty impossible to engage.  GP wants to place a huge barrier in the way.  Even with daughter telling her she doesn’t want to go to CAMHS, GP won’t budge.  A referral back to the place daughter doesn’t want to go, just to get someone else’s name with the responsibility attached to it.  And also that would mean going through a lengthy process which would take months anyway, we don’t have months.  It’s not about our child’s best interests, it’s about her making sure her own arse is covered.  This is a medication that GPs are perfectly able to prescribe and has been used in babies.  So now we are stuck.

The one thing left I had to hang on to, the potential solution, was this.  And now it’s gone.  Only three weeks left until start of term and we have it all to face all over again.  Perhaps if the GP had to live a little while in my shoes, she would be more helpful.

So there are days, when you just sob.  Because you have faced yet one more barrier and this was your last hope.  Despite daughter being presently calmer, everything I have felt is still just below the surface and when you are beating your head against a wall, in frustration at people not listening, even the strongest façade crumbles and emotions take over.  It’s futility of it all.  It’s like every way you turn…

computer says no

Parental expertise is not respected, professionals are completely tick-box for the most part, unwilling to be flexible to make things work for autism families.  Nobody cares about autistics.  Except those of us in the autism community, or those profiting from it in some way.

You know what’s funny?  I Googled ‘unhelpful GP’ and clicked Google’s images.  A little way down the page was a graphic about Asperger’s syndrome.  I think that says it all don’t you?

“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