Category Archives: PDA

Still Taboo

I try to stay positive and light hearted for you guys, I really do but sometimes reality sucks. Only day three back at school after half term and this is just part of the aftermath of his school refusal. Somehow, alone I managed to get him into the taxi (still in his pyjamas as he’s past the age of me being able to physically force clothing onto him, with his clothes and shoes in a bag) only for his taxi to return less than five minutes later as he’s attacking his escort and it’s ‘unsafe’ for them to continue! Nobody in ‘authority’ seems to care about whether it’s safe for me or Whirlwind while they all continue to pass the buck about who can or will provide services and support. I’m sorry if I offend anyone but on days like this I really can’t ‘see the positives of autism’, today I hate autism and what it’s doing to me and Whirlwind.

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I’ve written in more depth previously about the abuse some autism/PDA parents suffer at the hands of their child, The New Taboo , and about the tragedies that can, and do occur when those who should be helping don’t, There But For The Grace Of God and Another Statistic to the New Taboo but authorities still refuse to accept that this is happening, all over the world to hundreds, if not thousands, of parents right at this very minute.

UPDATE 20/2/15
Knowing that Whirlwind’s violent outbursts are predominantly triggered by “fight or flight” and that his preferred response is “flight” I was determined that I would not be pressured (either by school, taxi or bystanders) to force the issue today. The result was that the second I opened the door to take him to the taxi he bolted! Trying to follow him or ‘drag’ him back only leads to “fight” taking over so I tried persuasion and lowering demands, whilst we didn’t get a violent meltdown neither did I manage to get him into the taxi! So, another day of school refusal from him and another day of house arrest for me!

Backhanded Praise

Every parent of an autistic child has, at least once, been on the receiving end of judgemental comments and I think, over time, we all develop a thick skin and some choice responses to those. They don’t hurt any less but we don’t waste time crying over them anymore. No, the comments that bring us to our knees are the sweet, well-meaning ones, the ones from family and friends who are trying to understand, help and support us but just don’t quite ‘get’ it! Those compliments that, to us, just don’t feel like compliments but more like a reminder that we live a different type of reality to them.

“I don’t know how you cope, I could never do what you do” – really, like there’s an option? What do you expect me to do, send him back for a refund??? We cope because we have to, there’s very little help or support out there for autism families as the “criteria” state they aren’t disabled “enough”. So, we soldier on and we cope and do you know what, if you had a child like mine you’d do exactly the same – we weren’t created/born any differently to you, we haven’t had any special training, there is no “How To Be An Exceptional Parent” book that is only given out to the parents of Special Needs children – we’ve muddled through, made mistakes, learnt through trial and error and accepted a ‘new normal’ for our lives.

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“It must be so hard, you’re doing an amazing job” – my answer to number 1 also applies here but I’d also add a “No shit, Sherlock” to it – yes it’s hard, we’ve had to completely change our expectations and our view of normal but until you pointed out how hard it must be I’d almost been able to forget that my life isn’t the same as yours! See, that’s what I mean about our ‘new normal’ – it IS normal to us, we don’t think about the fact that nine times out of ten we’re only reasonably functioning human beings thanks to caffeine…..lots and lots of caffeine, we’ve forgotten what it’s like to fall asleep before midnight and wake barely two hours later – it’s amazing how little sleep your body can become accustomed to, it’s become second nature to only leave the house during school hours (school being the only ‘respite’ most of us get).

“It’s great that he can speak” – yes, I get your point but there’s a difference between your version of verbal and ours. He has a vast vocabulary – hell, at four he could explain in great detail about how Doctor Who’s regenerations worked and the name “Raxacoricofallapitorious” rolled off his tongue like your four year old saying “Teletubbies” but hold a reciprocal conversation? Tell me what he’s done at school? Explain how he’s feeling? Then no, in those important ways he’s NOT verbal and have you ever tried watching a film with a child who has to pick apart, examine and question EVERY SINGLE SCENE? Let’s just say cinema visits are now a no-no unless gags are made socially acceptable!

Trust me there are loads more I could bore you with but it’s half-term here and I’ve been summoned for a conversation about Minecraft – this won’t be an actual conversation as you’d recognise it though, it will consist of Whirlwind repeating the names of the Pokemon in his world and listing the attributes and powers of each one, variety may be added with little snippets about when Dan TDM, Stampy or GMob played a similar world – aren’t you just a teeny bit jealous of my exciting life? No? Not just a little bit? Oh, ok then – catch you later Amazons xx

I Wish I Could Shoot The Messenger Sometimes

Very much a ‘shoot the messenger’ day today. All change Monday for the Whirlwind’s temporary education – yep, still no meaningful movement on a permanent school place for him, they even put forward the suggestion that they re-approach the Junior School that’s attached to the Infant’s he was excluded from!!!

So, their bright idea (due to the inability of staff members to be reliable or communicate changes effectively) is that The Whirlwind attend the Pupil Referal Unit he was at before Christmas BUT for the whole day instead of just afternoons.

Oooookaaaaay, let me just run that by The Whirlwind:

“Honey, you know you keep saying you want to be back in a school and be there all day, with lunch and everything? I’ve got some great news for you!” (Mentally however this conversation should have gone “you know you want to be nice and settled in a PROPER school, with consistent teachers and proper lessons? Sorry kiddo it’s STILL not happening but….”)

“On Monday instead of going to the Children’s Centre, then coming home …”
(On Monday, instead of going to the Children’s Centre and your second tutor not turning up to do her hour session, then coming home and kicking off about the afternoon session at the PRU so much that the taxi driver refuses to let you in the car – mind you, that’s even if I manage to get you in your shoes and out the door without you making a run for it!….)

“…you’ll be able to go to the PRU first thing in the morning, yes you’ll still have C (tutor number 1 who never let’s you down) but then you’re going to have a nice, new tutor for the rest of the morning”
(Instead of trying to wrangle you into the taxi at 1pm I now get to do it at 8.30am, aren’t I lucky? Oh, and by the way, the OTHER tutor who’s never let you down is being reassigned elsewhere so you’ll have to get used to ANOTHER new person – how lucky you’ve already had sooooo much practise of that this term?)

“Then you can have lunch at the PRU”
(no honey I’m sorry I don’t know what the lunch arrangements are yet, no I know they don’t have a playground but hopefully they’ll take you on the park down the road, no I’m sorry I’m not sure who or what the ACTUAL lunchtime supervision will be)

“And then in the afternoon you can be back in the classroom with your friends from before Christmas”
(Then we’ll torture you some more by putting you in the environment you haven’t been able to face going back to for the past six weeks!)

Hmmmm, and I wasn’t prepared for the physical response I received from him? I’m left currently trying to decide whether I’ve got a migraine or concussion!!!

My New Year’s Resolution

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My New Year’s Resolution is to stop putting pressure on and accept ‘good enough’ from both The Whirlwind AND from myself! Can I ask all other #ASD / #PDA individuals and parents to make this their resolution too? Why do we always expect perfection from ourselves, please remember we are only human and good enough is GOOD ENOUGH xxx

Who Knew I Still Had Dignity To Lose?

Come on ladies, you all know that with each birth we lose a little shred of our dignity – midwives prodding and poking, student nurses and doctors traipsing in and out and the whole time we are reclined there, legs akimbo with everything on show! So having done that twice I’d already lost a fair bit of dignity before The Whirlwind decided I didn’t actually NEED any and decided to take away whatever remained.
So far I’ve had my knickers flashed to all and sundry at more family gatherings than I can mention (I eventually got wise to this and only wear trousers now), the whole staff of the local supermarket (and it’s a Tesco Extra, so that’s a lot of staff!) have seen my entire collection of bras at one time or another, I’ve had private bodily functions broadcast at the top of his voice on crowded buses and I’m now extremely careful what I say about other people within his earshot as I can guarantee he’ll remember the one and only time I was less than complimentary about them and decide that they REALLY need to know about it! After all of that I honestly figured that NOTHING else could EVER embarrass me…..oh boy, was I wrong??

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Tonight The Whirlwind’s tutor popped round to deliver a copy of his report for the LEA and being the kind-hearted, generous soul that I am I made him a coffee while I perused said report, next thing I know The Whirlwind has tsunamied into the room and yanked my top up to my chin …… I didn’t know what to say, the tutor didn’t know where to look and I felt one tiny, hidden, forgotten, last shred of dignity tear free and sadly wave goodbye as it trudged out of my life, never to be seen again…….I suppose I should at least be thankful it was a clean, well-fitting bra he was flashed with and not the sad, misshapen thing I put on when everything else is in the wash!
So, goodbye tiny shred of dignity, I will miss you!

I need a 36 hour day, 10 day week

I’m sadly aware that I’m ‘past due’ with a new blog post but as things seem to be picking up pace as regards finding a school placement for The Whirlwind, an increase in anxieties and meltdowns from The Whirlwind and the all important prep for the Doctor Who 50th anniversary on Saturday (an event of ultimate importance in this household!) there just aren’t enough hours in the day!

I have several ideas for blog posts humming around in my head but in the meantime if you’d like to keep up to date with the more mundane musings and shenanigans of the Amazon and The Whirlwind you could always follow us at http://www.dayre.me/AutismAmazon where I am trialling a new system of micro-blogging! But don’t worry I will be back soon with some more in-depth posts as soon as time allows xx

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Branded Unteachable

As you may be aware my son is 8 years old and has a firm diagnosis of Autistic Spectrum Disorder and various professionals have also mentioned dyslexia and PDA as probable issues as well, however we have to wait for assessments on these. Today another label appears to have been added to my son ……. UNTEACHABLE.

According to the LEA transition team he is “difficult to engage”, “…insists on staying ‘in character'”, “needs to be in control” and has “absconded on several occasions”. I nodded sagely through this whilst my inner voice screamed “WTF, you know all this from his diagnosis and school records, he isn’t any different to how he was before the summer break, YOU are supposed to know how to help him with these issues not tell me the unit may no longer be the right setting for him!” The LEA representative couldn’t advise on ANY maintained schools, mainstream or special, that could meet his statement end needs as they’d already turned him down for an emergency placement, however she did say a letter would be sent to all LEA special schools asking if they can meet his needs now, how they can offer a permanent place when they couldn’t on a temporary basis two months ago is a magic trick I’m dying to see.

However, I still had a glimmer of hope. Although one of the Independent special schools couldn’t ‘meet his needs’ (a euphemism for not wanting him) I was still waiting to hear back from a second one, this one had spoken knowledgeably about ASD and PDA, when I explained about his behaviours they said they couldn’t see it being a problem for them, surely they will come to our rescue and then it’s just a case of getting the LEA to agree funding.

On returning from the meeting I’m thrilled to find an email from the Independent school I’ve pinned all my remaining hopes on so you can imagine the shock as I read on……..

“Currently our primary centre would find it difficult to support R due to the challenging behaviours that he can display. We are not a school that is trained to deal with high levels of behaviour and we don’t restrain our young people which may make it difficult for us to support and control Robert when he is in a high state of arousal.”

So, there you have it, my son is (unofficially) unteachable. Where we go from here I honestly don’t know. What I DO know is that this Amazon may be down but I’m NOT out, I will take a day or so to regroup and research then I will come up with a new plan of action. In the meantime I will remind myself that my son is oblivious to the fact that the education system wants to write him off at only 8 years old and that, as long as I have faith in him, he will remain oblivious.

Humbled

Wow, I knew I wasn’t the only person struggling with a child with behavioural problems and I knew that one or two on my friends list might relate to what I was saying in “The New Taboo” but over 300 views in 24 hours, from all corners of the world – I am humbled that a piece I wrote while recovering from another onslaught and feeling pretty low about it all could have touched so many people.

Welcome new friends, pull up a chair (hit the follow button, like me on FB or follow me on Twitter) and join me in the revolution to break The New Taboo and make Child-on-Parent abuse understood and to make the powers that be accept that IT IS REAL, IT IS NOT THE PARENTS FAULT and THEY MUST HELP before it is too late.

The New Taboo

You may have seen me at Parents Evening or in the supermarket and noted the long sleeve tops in the middle of summer, your gaze has lingered questioningly on the heavy make-up on the suspiciously puffy eyes, you may have even thought about quietly slipping me the business card to a support group for victims of domestic violence.

The litany of injuries to date includes several broken toes, a broken finger, a broken nose, constant fresh bite marks and bruises to both arms, bald patches where he has torn my hair out, black eye, gouges to the face, constant fresh bruising to both legs and back and several teeth either loose or knocked out. Add to this 3 pairs of broken spectacles, several plates and mugs smashed, a smashed phone, holes in internal doors and several larger items of furniture damaged beyond repair.

BUT here’s the secret – I’d confide in you if it was my partner inflicting these injuries on me, it’s no longer taboo to speak up about that, no my secret is much worse, my secret is still taboo. In a way I am the victim of domestic violence but the difference is that I can’t just walk away ……… The perpetrator is my own son. My son has just turned 8 and was diagnosed with Autistic Spectrum Disorder when he was 6.

You see, behaviourally, my son is trapped in the Terrible Twos. At two it’s easy to put them for a time out, at 8 you can’t get near them without risking severe injury. The professionals are aware of these incidents, it was the violent behaviours that led my GP (after several years of my asking for help, it was only when she witnessed a meltdown for herself) to refer him for assessment. In his paperwork I have a letter from Clinical Psychology and the very first line reads “…I hope you made it home ok” following an appointment that was cut short after 10 minutes due to a meltdown, he is currently excluded from school as a health and safety risk and yet nobody wants to help. There are no services in the UK (and probably the rest of the world) for parents who are at risk from their children, even social services will only look at whether you are likely to snap under the pressure and harm your child – if they think you might your child is then classed as ‘at risk’ from you when, in fact, the opposite is true.

Don’t for one second think this is rare, at one time people believed domestic violence didn’t exist but it was just that it was taboo to talk about, victims suffered in silence. It’s time we break THIS taboo. It’s time to start shouting. It’s time for society to stop turning a blind eye. It’s time for proper advice and support it’s time for those of us living this to stand up and admit I AM A VICTIM OF CHILD-ON-PARENT ABUSE AND I AM NOT TO BLAME