Easter Bunnies and Ranting

Sad BunnyWell, I knew what to expect so I shouldn’t have been surprised should I.  A special occasion has often become memorable for all the wrong reasons.  It’s the Easter holidays of course.  The first day drew nearer whilst my sense of dread grew exponentially.  I was terrified.  I was right to be terrified.

Being with two teens with PDA for a fortnight without a break is not your normal holiday.  A major problem being that the younger one has a really bullying and harassing form of questioning behaviour, that you simply aren’t allowed to escape from.  You start answering in good faith, but see quickly that it’s not about the questions, or even the answers, it’s about control.  So you end up hemmed in somewhere in the house, by a barrage of ranting which often escalates to screaming.  Most of the time, nothing you can do will resolve it, it goes full circle sometimes, back to the answer you gave in the first place.  Always, your answers will add fuel to the fire and bring remonstrations, complaints, accusations and often, wrath.

Children with any ASD are often emotionally immature for their age, those with PDA can also tend to fantasise a lot.  So when one of them wrote the “Easter Bunny” a note, after Easter and left it amidst a (very messy) pile of papers, so the “Easter Bunny” couldn’t have seen it even if he did make extra visits to people after the event, I then had to face ranted questions as to what this meant, why, “oh so the Easter Bunny doesn’t care about me”…ad infinitum.  Every little thing is a huge drama.  The sense of being on eggshells all-pervasive.  I’m now regretting ever having played along with the Easter Bunny (the Tooth Fairy caused big issues too) because they believe in it, but it’s so much harder to keep the dream alive, with highly analytical and critical young persons!  What was done to make things special, has turned into a nightmare.

I have suggested outings during the holiday, but they have been “too boring”.  I wonder if it’s the lack of control element, really.  Indoors, it’s controllable.  But I am trapped indoors with the very challenging behaviours as a result.  Every time there is a lull, I have on the tip of my tongue, “OK, where would you like to go then?” but then another episode starts and I end up feeling fear and massive reticence about going anywhere.  Not to mention feeling physically unwell from the episodes.  Because there have been very public meltdowns before.  I have had to stand there being thumped and screamed at by my very large child with people agog on more than one occasion.  It’s too humiliating.  It’s often too hard to try without back-up.

So right now, I am counting down the days until the end of the holidays.  School will see a witty and calm child.  I get the dark side.  And nobody would probably believe me, if I told them.  Except other parents in the same boat.  Imagine, contemplating a holiday, in a hotel room with that level and volume of behaviour with other holiday makers alongside having to endure it.  So my holiday, is school hours, when I have some brief respite.  Such as it is.  Spent so exhausted and playing catch up, it’s really a temporary ‘break in hostilities’ – just enough to keep me alive.


wailing woman


“Post-Traumatic Parent”

PTSD It hit me today, that not only am I existing in survival mode, running on empty, but I am also living day-to-day with buried PTSD.

Suffering what’s called ‘parent abuse’ for such a long-time, with no way out, when some of the episodes are so extreme that you almost go into shock, seems to be an occupational hazard with PDA.

One of the PDAers will make active efforts randomly, to drive home expressions of anger.

“I hate you”.

“I have no respect for you”.

And deny affection, that is nonetheless demonstrated with gusto to people in school (peers and staff alike) and will come home and not only tell of this affection to others, but demonstrate it – whilst fiercely denying it to us, her parents.  And knowing how much we want that affection and are so disappointed not to receive it.  It eats away at you.

Of course, it’s the ‘Jekyll and Hyde’ of PDA.  It’s also a method of control.


Irrational blame is another thing.  Any little thing will be plucked out of the air to start a tirade of why “it’s your fault”.  Constantly.  Daily.  You don’t realise until you look back, the effect it’s had on you.  You apply logic in your responses at the time, you know it’s not true, but the hurt is no less.  In retrospect, you realise how it has soaked into your psyche, that you are unappreciated, constantly at fault, wrong, viewed as not worthy of affection, from someone you love.  That’s damaging enough.

The periods of violence are traumatic though.  When it’s not seriously and potentially life-threatening (intended or not) violence, it’s low-level aggression that makes you feel like a daily punchbag.  Someone to crap on.  There to take out the whole of the world’s ills on.  You don’t suffer low self-esteem, or you think you deserve it in any way, it’s not that.  But the pain of having all of this done to you is no less anyway.  When your flesh and blood, that you carried in your body, brought into the world and raised with all the care possible, could do this to you, is gargantuan in proportions of pain.  When you love someone, it’s almost impossible to disconnect and say “it’s the condition”.

So today, I acknowledged, again, that what these PDAers put me through, in the past and continue to, coupled with the highly detrimental experiences I’ve been subjected to in obtaining their support, have given me post traumatic stress.

When people are tortured, they are in a situation from which there is no escape, something causing them pain, distress, trauma, harm of some sort.  How is this any different?

If a parent did this to their child, just the verbal stuff, they would be accused of emotional harm to their child.  Never mind the physical stuff.  But as a parent, you are expected to just treat it like water off a duck’s back.  Apparently parents don’t have feelings.  It feels like we don’t have rights either.  Considering in reality that children are legally liable for crimes from ten years old, how does that work?  Many autistic adults are put in prison for crimes they may have diminished responsibility for, so it doesn’t add up does it.  You’re a parent, take it on the chin no matter how bad it is for you.

I don’t see a solution either.  This is why PDA is the most extreme form of ASD, behaviour-wise.  This is why it’s so urgent that there is recognition everywhere about PDA.  Professionals working with children and families need to know what parents of children with PDA go through and how to help them.

wounded soul

“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.


“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.

deaf ears.jpg

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…


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…”

storm coming.jpg