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!!!

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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

Doctor Who – Timelord or Autistic?

Well, we have the 50th Anniversary Special behind us and the Christmas Special is only days away so what else could I possibly write this weekend? The Whirlwind had been awaiting the Anniversary episode with bated breath ever since John Hurt made his appearance at the end of The Name of the Doctor and the excitement is now building for the Christmas Special. The past few months has seen a whirl of Doctor Who related programmes, activities and lots and lots of Doctor Who Lego building!!!

Having taken in so much Doctor Who knowledge by osmosis over the past few years I started to ponder the similarities between the various regenerations of the Doctor and those of autistic individuals and to ask myself why IS The Doctor such a huge obsession with autistic children (and adults)?  Maybe they see a kindred spirit…….

The First Doctor played by William Hartnell

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The ‘grandfatherly’ incarnation and our first encounter with The Doctor shows the ultimate absconder – stealing a Tardis so he could escape an environment where he felt trapped and constricted. Hmmm, reminds me of The Whirlwind!

He was abrasive, patronising, and cantankerous towards his human travelling companions and this could be down to the social interaction difficulties that are such a large part of autism which can lead them to come across as rude or abrasive.

One quirk of the First Doctor was his tendency to become occasionally tongue-tied and stumble over words

The Second Doctor played by Patrick Troughton

In his first story, the Second Doctor referred to his predecessor in the third person as if he were a completely different person – again something that can be associated with autism.

The Second Doctor has been nicknamed the “Cosmic Hobo”, impish and unconcerned with how others view his appearance as long as he’s comfy. He was also mercurial in his moods and endearingly childlike.

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This Doctor is associated with the catchphrases (echolalia anyone?) “Oh my giddy aunt!” and “When I say run, run!”, and is noted for playing the recorder to help him think. In early stories he also demonstrates a fondness for hats and other types of headgear, mainly sporting a distinctive stovepipe hat when outdoors.

The Third Doctor played by Jon Pertwee

The Third Doctor was a suave, dapper, technologically oriented, keen scientist who enjoyed working on gadgets in his TARDIS. In his spare time, he was fond of motoring, his favourite car was a canary-yellow vintage roadster that he nicknamed “Bessie”.

His courageousness could easily turn to waspish indignation, a common catchphrase of his was, “Now listen to me!”, how many times have I heard the Whirlwind say that to me?!?

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This Doctor had a manner of dress that is the most ornate of his various incarnations, favouring frilled shirts; velvet smoking jackets in blue, green, burgundy, red, or black; evening trousers in colours matching those of his smoking jackets; formal boots, riding boots, dress shoes, and Inverness cloaks for his regular outfit; with variations and accessories including bow ties, cravats, and leather gloves. All of these earned the Third Doctor the nickname of “The Dandy Doctor.”

The Fourth Doctor played by Tom Baker

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Baker portrayed the fourth incarnation as a whimsical and sometimes brooding individual whose enormous personal warmth is at times tempered by his capacity for righteous anger, unpredictable in terms of his emotional depth yet slightly more distant and alien than his previous incarnations.

With his eccentric style of dress ( that usually consists of a shirt, waistcoat, cravat, trousers, a frock coat – with pockets containing a seemingly endless array of apparently useless items that would nevertheless suit the Doctor’s purposes when used – a wide-brimmed hat and, most famously, his impractically long, multi-coloured scarf ), speech and fondness for jelly babies and his moments of whimsical charm and offbeat humour he is more aloof and somber than his previous incarnations and could be intensely brooding.

He also has a strong moral code, such as when he faces the dilemma of whether to destroy the Daleks in (Genesis of the Daleks) stating that if he did, he would be no better than the Daleks himself – I’ve found that many verbal and higher functioning autistics, Whirlwind included, have an extremely strong sense of right and wrong.

He often contemplates his outsider status to both humanity and his Gallifreyan heritage, as he seems more inclined toward a solitary existence and yet seems to long for companionship.

When taking charge, he could be considered authoritative to the point of controlling and egocentric, who among us autism parents haven’t heard so-called professionals accuse our children of being controlling?

The Fifth Doctor played by Peter Davison

The Fifth Doctor was far more vulnerable, sensitive, and reserved than his previous incarnations and often reacted to situations rather than initiating them, often displaying a tendency to be indecisive and frequently making decisions by flipping a coin.

He had an excess of nervous energy – tending towards hyperactivity.

He could decipher the ingredients of a drink by smell alone and rosemary made him sneeze – this could easily be attributed to the SPD (Sensory Processing Disorder) or Sensory Sensitivities that are so common among autistics.

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Yet again this incarnation displayed his own little quirks when it came to dress, on his left lapel this Doctor wore a celery stalk.

The Sixth Doctor played by Colin Baker

Again brightly coloured, mismatched clothes that he loved regardless of any social norms that may dictate them to be inappropriate and a brash and overbearing personality set him apart from all his previous incarnations,

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Following his regeneration he initially considered going into a hermit-like existence which would parallel the autistics need or desire to be alone rather than coping with the pressures that society puts on them.

The Sixth Doctor was unpredictable, with mood swings, manic behaviour, bombastic outbursts and glib, unflappable wit. His personality also displayed occasionally fatalistic overtones – always expecting the worst to happen, constantly wondering ‘what if this goes wrong..’

The Seventh Doctor played by Sylvester McCoy

This Doctor was very fond of rambling, idiosyncratic speeches that would mix literature, ordinary places and even food and drink with the deeper and weightier concerns on his mind. He was empathetic and somewhat melancholic at times but placed great burdens upon himself, much like the burden to be ‘perfect’ that many autistics place on themselves.

Again the Doctor’s outfit displays a quirkiness and mis-matched quality although it is more subdued than previous incarnations.

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Fiddle toys??? The Doctor carried all sorts of random items in his pockets and enjoyed using his hat, umbrella and the TARDIS key, amongst other items, as physical props much like the fiddle toys and myriad of, in our view useless objects but in their view, essential treasures that our autistic children hoard.

This Doctor also displays strange and ‘alien’ characteristics playing with the perception of his senses, as he listens to cheese, could this refer to Synesthesia that has recently been linked to autism?

The Eighth Doctor played by Paul McGann

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Although up until recently he was only The Doctor in the TV movie, this incarnation displayed a wide-eyed, child-like enthusiasm alongside an excess of energy – flitting randomly from one topic to the next and with an eye to fashion that doesn’t necessarily match that of his peers.

The Ninth Doctor played by Christopher Eccleston

At the start of his tenure this Doctor doesn’t want or need friends, feeling life is easier if he’s alone and doing his own thing but a reluctant friendship with Rose grows into an enduring and deep relationship, echoing the struggle that exists for autistic individuals when making friends and also the way that once those friendships have been forged the friendships are often deeper and more enduring than the friendships that exist between neuro-typicals.

He avoids thinking about his past because “there’s some pain there” – and his only concern regarding the future is that “it’s there” much in the same way that an autistic lives mainly ‘in the moment’ with difficulty understanding, or caring, about the concepts of past and future.
Personality wise, this Doctor is often confrontational and inflexible and his clothing, which is the most ‘normal’ of all the incarnations gives the impression that he strides through the universe wearing a dark leather jacket saying “Don’t touch me”.

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The Tenth Doctor played by David Tennant

The Tenth Doctor has a tendency to babble, mixing apparent nonsense with vital information and sometimes acting erratically. He is prone to making comments that to others might seem rude. He has a tendency to use technobabble to describe scientific concepts before substituting it with a simpler, analogous explanation, such as his description of non-linear temporal physics as “a big ball of wibbly wobbly, timey wimey stuff” – in the way The Whirlwind will use ‘made up’ words and phrases to explain things when he cannot come up with the words he needs.

This incarnation also has a strong sense of justice which makes him quick to anger when he feels it is violated, he also rapidly switches moods, from mania to anger to nonchalance.

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Another recurring theme in the Tenth Doctor’s stories is his intense loneliness, a feeling that although he’s in the centre of things he is still on the sidelines watching it all happen.

He also exhibits a remarkable sense of taste, again similar to the Fifth Doctor and SPD – able to identify the blood type of a blood sample or the presence of mistletoe oil just by licking

This Doctor also echoes certain phrases on various occasions, such as “Brilliant!”, “oh yes!” (used in an exuberant fashion, often when he has successfully done something), “I’m sorry, I’m so sorry”, and the French command “Allons-y” (“Let’s go”). The latter also shows the random thinking and rambling mind of the Doctor as he goes on to say that he would love to meet someone named Alonso so he could say “Allons-y, Alonso!” and again when he quotes the song “Circle of Life” from Disney’s The Lion King during a confrontation with the Sycorax leader.

The Eleventh Doctor played by Matt Smith

He is at times childlike, and yet can also become grumpy and solitary, refusing to interact with others. He attempts to be cool (including enthusiastic dancing) and . He even shows ignorance of adult activities such as sharing a bed, providing bunk beds in the TARDIS for the married Ponds purely because they are ‘cool’, and drinking wine before spitting it back into the glass after trying it.

Although the Doctor puts on a façade of cheerful arrogance, he secretly believes himself to be a bad person and often displays self-loathing for the things he has done throughout his life, as seen in the episode Amy’s Choice when he determined that the Dream Lord was a version of himself by surmising that there was only one person that hated him as much as the Dream Lord did.

Again we see a quirky, individualistic dress sense with a special affection for bow ties, often proclaiming “Bow ties are cool” progressing to include a love for fezzes, “I wear a fez now, fezzes are cool.”

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Like his other regenerations this Doctor can see the small details but struggles to see the ‘big picture’ relying on his companions to help him put the pieces together.

So, in summary, we have an almost child-like at heart individual who although deeply loved by those around him feels like an outsider, a very unique dress sense preferring comfort over social norms, the ultimate absconder, a man who always speaks his mind and a few glimpses of synesthesia, echolalia and SPD. Ladies and gentleman I think you’ll all agree

    THE DOCTOR IS AUTISTIC.

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!

Another Statistic to the New Taboo

Another statistic, Susan Dunne, 56, who shared her home with 19 year old autistic son Patrick, lived in the rural heart of North Kerry, Ireland and was found dead in her home.

Autism Activist found dead

Whilst there is very little information currently released the fact that her son’s age and the matching age of the suspect arrested are the same the report appears to hint at a meltdown too far ending in the most terrible of ways. I hope I am proved wrong but anyone who has read The New Taboo will know that this is one of my big worries for The Whirlwind. A child who has violent meltdowns can grow into an adult with no concept of the damage they can do. If my worst fears around this tragic death are proved right I can only hope that the courts are lenient and understanding with Patrick, that it leads to more people admitting that they are victims of parent abuse and that this new taboo is taken seriously at last.

UPDATE: whilst writing this post it has been announced that the man arrested was Patrick Dunne, how I wish my initial suspicions had been proved wrong.

Son Charged Over Death

UPDATE: Further details released.

Let Battle Commence

Loyal readers will already know the struggle I’ve been having with the Local Education Authority (LEA), for new visitors “hello, pull up a chair and take a look at Branded Unteachable , Life In Limbo and Communicating About Mis-Communication

So, just as I thought things were reaching a conclusion – we’ve found the perfect school for The Whirlwind, they are confident they can meet his needs AND they have a place for him – the LEA decide to move the goal posts! Based on 6 weeks in a Pupil Referal Unit they now feel he can go back into mainstream school!!!

This is the letter I’ve posted to them in response (I’ve changed names to protect the guilty!):

“Further to my telephone conversation with xxxxx, this morning I would like to formalise my response to your decision not to approach HG School with regards to an educational placement for The Whirlwind.

Firstly I would like to point out that basing this decision on the apparent ‘progress’ he’s made at the Pupil Referal Unit is absurd – he has only been at the unit for approximately 6 weeks and during this time a marked regression in his behaviour has been noted by myself, his morning tutors and his key worker. There have been several occasions where his meltdowns have been so severe I have been forced to cancel his afternoon at the PRU as it would have been impossible for me to physically get him into the taxi (even if the taxi driver had agreed to transport him in that condition!). In addition, I cannot see how the fact he appears to be managing in a classroom with only 8 pupils (including The Whirlwind) and 3/4 staff, part time and with no lunchtime or playtime to contend with could possibly lead you to believe that he will manage in a mainstream school (with or without an Enhanced Resource Unit). As was clearly shown at yyyyy School (in your own departments’ words and those of Autism Outreach, one of the very best schools the LEA has when it comes to being Autism Friendly) it takes a while for The Whirlwind to feel comfortable enough to ‘let go’ within school but it DOES happen eventually and if you insist on placing him in a mainstream school it is only a matter of time before we are dealing with another exclusion and all this stress again, not to mention the damage to his confidence, self-esteem, education and anxieties that this will cause.

In September you contacted DH and AW (both Independent/out of county placements) who BOTH indicated they could not meet The Whirlwind’s needs, as was stated to me at the time you rarely (if ever) contact these schools and usually only for your most complex and difficult to place students, as a last resort. If these schools could not meet his complex needs why do you now believe you have suitable provision that CAN meet his needs?

Since being refused by DH and AW, and due to the LEA not having an appropriate school for him, The Whirlwind has been on your ’emergency list’ that is sent to every mainstream and special school that the LEA maintains, the idea being that if a school can meet his needs and has a place they are supposed to contact you with regards to him being placed there, in addition I told xxxxxxx in September that I would be happy to consider any schools that the LEA felt could meet his needs – the LEA has failed to put forward ANY schools for me to consider. In all this time NO school has come forward to say they can take him so how can you state we have alternatives to HG?

During the meeting at PRU on dd/mm/yy zzzzzz suggested PL and BD as possible placements. The response I received from BD is that they already have two extra students above their capacity in the ERU and could not possibly place another student in a unit that is already over capacity, the response from PL is that their unit is also two students over capacity with two students in their mainstream school who SHOULD be in the ERU that they are unable to place in there and both schools stated that they also have waiting lists for the ERUs. It was suggested by zzzzzz and the head of the PRU that I consider looking at ‘smaller’ primary schools, however all the primary schools I have researched (online and/or by telephone) have class sizes around the 30 pupil mark – as previously stated The Whirlwind will not be able to cope in a class this size and we will end up back in this position again but with TWO exclusions on his record. I have rung around most of the LEA maintained schools with ERUs and they have ALL stated that the ERUs are completely full, in some cases they already have children in their mainstream classes that should be in the ERU and they ALL have waiting lists for the ERU. If you attempt to ‘shoehorn’ him into an ERU that is already over full it is going to be detrimental to the education of The Whirlwind and to the other students. All these schools with ERUs have mainstream classes of approximately 30 students, as previously stated he will not cope with such large classes.

The Statement of Educational Need dated dd/mm/yy states “The Whirlwind can find the school environment overwhelming”, “he finds many situations anxiety provoking, or frustrating and once in this heightened state finds it extremely difficult to de-escalate”, “crowded and noisy places appear to distress him a great deal” – how can he be expected to manage a mainstream classroom?

The SEN also states “The Whirlwind’s outbursts have increased in intensity and frequency…..physically attacking pupils and adults” and “He has hurt children, staff and his mum during his physical outbursts” – his presence in a mainstream class will not only be detrimental to his OWN emotional and physical well being it will be detrimental to other students and staff and place them at risk of harm if his meltdowns are not dealt with appropriately.

In Part 3A of the SEN item 1.3 states “To develop his sense of security and well-being in school so that his identified anxiety is reduced” – placing him in a mainstream classroom will have the opposite effect!

Finally in Part 4 of the SEN it is stated ” Education Otherwise than at school for pupils with complex needs not currently attending school, leading to integration into an appropriate school” you quite clearly state here that he has complex needs, nothing has changed so much since dd/mm/yy that he no longer has those complex needs, so why do you now believe that any of the schools that were unable to meet his needs in mm are suddenly able to meet his needs in mm?

I would ask that you consider the above points, some of which you may not have been made aware of, and reconsider your decision not to approach HG. I must also insist that within 10 working days of this email you supply me with a copy of The Whirlwind’s statement with either a named school OR the type of provision you intend for his placement to enable me to begin the tribunal process if I feel it necessary. As you are aware The Whirlwind will have no educational provision after the Christmas Holiday so time is of the essence.

Sincerely”

Ok, let battle commence…….I’ll keep you posted!

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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Impromptu Autism Awareness Demonstration…..coming soon to any crowded place near you!!!

Just a quickie folks but it struck me this at the dentist this afternoon how far I’ve come, mentally and emotionally, in just four months.

The Whirlwind was on form in the waiting room, running up and downstairs, singing opera to the other patients, hiding and crawling under sofas, being a werewolf and attempting to abscond all interspersed with the kicking, hair pulling and punching mum routine. The old me would’ve been frantically apologising whilst struggling to contain this writhing, seething mass of teeth, feet and fists whilst only managing to cause him further anxiety and an escalation in the behaviour. The new me kept a smile on her face and a calm soothing voice whilst simultaneously keeping everyone safe and The Whirlwind reasonably contained and ignoring ‘those stares’.

I also took the opportunity to raise a smile AND awareness in the waiting room by announcing to all, as we corralled The Whirlwind into the dentist’s room, “It’s ok folks, I’m not charging for today’s autism awareness demonstration!” I’m pleased to say that the majority of the other patients did indeed give me a smile at this!

If you find yourself in a similar position try it, they’re staring anyway so it’s not like you’ll suddenly BECOME the centre of attention – you already are, so go with it and use it as a way to educate others about these invisible disabilities, maybe then one day we WON’T be the centre of attention when our child melts down in public!