“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?

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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…”

storm coming.jpg