Words change, but some people don't

I was fortunate enough to be brought up by my grandparents. It gave me an appreciation and understanding of ways of life other than what may be accepted by members of my peer group as "the norm". 

Nan was a very solid, sensible woman; practical, hard nosed, desperately proud, quick to temper, prone to sulks at times. She was funny, rude, informative and kind. She could destroy you with a look but was the one who would sit stroking my hair and calming me during one of my many childhood night terrors.

Grandad was a quiet man with a quick wit. He liked a drink and to socialise, performed magic tricks; an expert storyteller with an ability to convey and capture you in a chronicle like no other. He worked nights and we were often needed to be quiet during the day so he could sleep, but he ensured that he spent time with us three children, sharing something special and unique with each of us.

They were people of their time. Nan maintained she was racist but to me this seemed akin to most people's assertion that they are C of E; something that she had been brought up to believe but showed no empirical evidence of.  Grandad was fond of getting an attack of what he called "The Sillies", but worked tirelessly as a union shop steward at Ford's.

Words were words in our house.  There were no banned words, simply words that were used and words that were not used.  Surprisingly to anyone who knows me now, I was late to swearing as I did not hear it at home.

I recall coming home one day from school, having heard a word in the playground, to ask what it meant. Nan turned ashen and Grandad was summoned from his bed to speak with me.

We walked around the garden, and Grandad told me about when he came to England, aged 16, during the war. He was spat on, refused entry to places, beaten up several times and these were the lighter aspects that he could tell to a 7 year old. When Nan and he married, her family refused to accept the match. He told me about their early lives together.

In later years, Nan became increasingly immobile. She had horrendous leg ulcers for which she endured many years of painful operations, and as she refused amputation, she needed a wheelchair to get around. As times had changed so had attitudes towards the Irish, although an Irish accent then equated to an association with the IRA in much the same way as a turban indicates membership to Al Qaeda today for some members of the community.  He was addressed and she was ignored, the assumption being that she had in some way lost the ability to talk because she had lost the ability to walk.

Both experienced name calling based on an assumption of what and who they were, having been judged based on other's expectations of what they could achieve.  Perhaps they always stayed quiet and accepted it; perhaps they challenged it; certainly they did not "get over it".

Regardless of how the meaning of a word may evolve or change, the intention behind its use does not always move at the same speed.  People may change but not all people do.

After that chat in the garden with Grandad, I have never repeated the word I asked him about that day and can still only refer to it as "the 'p' word".  He told me that to use words that pick up on other's differences, either as a weapon, a percieved defence or as a casual shorthand was not what he expected from me.  I will not disappoint him in this expectation as I believe it to be true.

Fast forward to now.  I have been subjected to other's "hilarious" casual use of words that have been used against my son, and on challenging them have been told I am over reacting.  Language matures and the meaning of a word may advance, but the intention behind how it is used and received may not.  It cannot be for anyone to challenge another's reaction to a word, because they do not know their life experience behind it.

When I read or hear words that I consider to be archaic anachronisms, it surprises me rather than shocks me.  It makes me feel shame and pity; shame that the person using the word is so ignorant, and pity that they are living in a world where they think it is acceptable to demean others by casual reference to their colour, sexuality or disability before they criticise anyone who addresses them on it.

It's just not something that we should consider to be acceptable if we claim to be civilised and educated. Is it, Ricky?

Fat

A phonecall from the school.  The Boy was in the head teacher's office, having punched one of his colleagues in the face. Can I come in to discuss what has happened?

Of course, says I, hoping this isn't the start of another reaction to a change at school that I have, yet again, not been advised of and will thus spend several weeks of being used as his human punch bag until I can get to the bottom of what the issue is.

To school I toddle, and am shown straight through to the head teacher. The Boy is sat outside, swinging his legs and with his head bowed, picking at an invisible to my eye speck on his trousers. He won't look at me, he won't look up at me. He does not respond when I say his name. He is clearly struggling to contain himself.

It transpires that he has punched some of his fellow inmates during a lunch time scuffle, and continued to shout at said compadres and attempting to kick at then as he was pulled off.  I ask if it has been establised what led to this incident; I am told "nothing". I am told that he "jumped on and started to attack and pummel" these children with no possible provocation.

I take several deep breaths and launch, once again, in a detailed speech about how autism doesn't work like that; how everything is a result of stimuli, how sometimes his reactions are delayed to earlier wrongs, and how morality has no place in examining what has occured.  I ask if they have a STAR form filled in for him in relation to the incident, already knowing the answer is no.

I think, surely at this point, they've heard this from me so many times, in so many variations, that they muct be expecting it. You'd think that they would at least investigate what I say to them; what I "claim" to the case, merely to save me saying this to them every time I am called in for one of his minor disability related misdemeanors.  Sometimes, the constant explanations that I need to give, what seems like total logic to me, appears to pass them by completely and I start to hear my voice wander off elsewhere, trying to find where the teacher's comprehension facilities are and why their brains can't process such easy, evident information.

I ask that The Boy be called in. He shuffles in, eyes down. He is picking at a nail, the side of his thumb is gently bleeding from the pressure he is applying to ease his stress.  He looks at me; a mixture of defiance, annoyance and a face that just screams out "this isn't fair."

It is a face I know well on The Boy, and one that does not need to be questioned. Ever.  He has acted in a way he believes tobe absolutely right, and now we will need to find out what the reasons were that he did.

He sits down. The head teacher starts to speak. The Boy looks directly at me. He speaks quietly, and over the head's voice.

"They called Lid fat Mum, and they made her cry. They wouldn't stop. I told them to leave her alone, and I asked the grown ups, but they didn't. And Lid was crying and she was really sad. So I stopped them."

The head teacher starts to say that, even if this is the case, it is not right of him to react like this, and tells The Boy that I agree with her. She waits for me to confirm that she is right on this supposition.

I ignore her. I hug him and thank him for being a good big brother.  I tell him that I wish that I had a brother like him, and I really, genuinely do. My heart swells with pride. I want to rush up to these bullies and shout "ha!" in their faces. I want to put The Boy up on my shoulders, carry him through town shouting "this is my son! I made him in my tummy you know!"  But most of all, I want to see my daughter and make sure she is ok.

As it is nearing the end of the school day, she is brought to me, still slightly sniffy, still very upset. She starts to cry when she tells me that these stupid, ignorant idiots have called her fat. I know that she is delicate in a way that people miss, and I know this because she is me.

We cuddle and chat. I tell her that of course she isn't fat. She is strong and tall and extremely cool. I tell her that she is the most beautiful girl in the world.  "And the prettiest" pipes up her brother. I tell her that she is more than just beautiful, she is kind and gentle and funny and clever; that these are the things that are important; these are the qualities that the bullies in the playground do not possess; the same ones that she and her brother have in gargantuan quantities. 

The head attempts to intervene about a suitable "punishment" for The Boy. I ask how will the children be punished for their verbal abuse of my daughter? I am told it will be "investigated". I already know that this means nothing will be done.

Her voice persists, saying that The Boy will have to miss break times for a week, and may need to be internally excluded.

I sigh heavily. At times like these I struggle to keep my tendency to swear when those around me are being idiotic under control, although my control assisted inordinately by having children in the room. I look at her. I tell her, very slowly, in my best cross voice, that maybe she should be examining how the lunchtime assistants are supervising their charges. A little less time for them to gossip, a little more time for them to attend to the chidlren around them.

I tell her that I can't help but be proud of The Boy, because although hitting isn't right, defending someone younger and smaller than you always is, especially when it's your sister.  I tell her that I won't condemn him for being the sort of brother that all girls, but especially Lid, deserve, and that I can only heap praise and thanks on him for stepping in where I could not and her staff would not.

We leave at this point. Nothing will be achieved by continuing the conversation. I hold on to The Boy and Lid's hands, and we skip outside in to the sunshine.

"You'd think Head Teacher would understand more" says The Boy "because she really is fat."

"Yes" says Lid "and she has goopy droopy boobies."

*Sigh* I can see a lecture about not calling people namesa coming on...

Advice

Someone that I know via Twitter, of whom I am rather fond, recently asked for people to give their one piece of advice, their "rule for life" if you will, to assist her in a project.

I thought quite hard about it. I started to worry that I don't have any at all.  When I'd finished breathing into a paper bag, I came to the more realistic conclusion that I don't have just one.

So here, in no particular order, are my set of life ethics. Vaguely. These are, of course, subject to change as I decide to break them or remember something else that was much, much better. Dammit.

Rules aren't there to be broken, but sometimes they need to be shaped to fit.
This was one of the biggies for me. I follow rules. Always. I'm the Richie Cunningham of rule breaking (apart from not being ginger. Or American. Or fictional); I just don't.  The arrival of children, specifically autistic children means that I will bend rules if need be, mostly because I know to pick my battles. 

Pick your battles.
If only the ConDems could follow this piece of advice, but on a literal rather than a metaphorical level. Perhaps if they had had a Nan like mine, a woman who was hard enough to roll her own tampons, they would do. They'd certainly know not to fuck with a disabled lady in her 70s, or any disabled person for that matter. It's something Norman Tebbit learned after just one encounter with her.  Again, this has had more resonance since I had children. You know what? If you chose not to eat your tea, that's up to you. Just don't come bitching at me half an hour after you weren't hungry demanding cake only to start bitching when I point you in the direction of your crusty arsed tea because you know I will let you scream your small person head off.

Manners apply to everyone.
This is an unbendable rule. I'm looking at you, elderly lady who thinks that she can push to the front of the queue when my kids have been waiting patiently and correctly for the bus for twenty minutes.  Yes, I will point it out to you. Not only that, I will march you to the back of the line if need be.  You'll be the first to complain when they end up mugging you in 10 years time for your pension because I didn't teach them manners, and you know it.

There's no such thing as failing.
You don't fail. You just perfect on the journey.

You get there when you get there.
See above. Sometimes fear keeps you back. Sometimes circumstance procrastinates for you. Sometimes other people steam ahead in their lovely, shiny lives seemingly oblivious whilst you sit there gnawing at your knuckles unable to fathom how you fucked up. Fact is; you didn't. You didn't fuck up. You learned. You grew. You took that knowledge on to perfection. To re-iterate above; there's no such thing as failing, because you get there when you get there.

There's gold all around; you just have to remember to see it.
You look at it and see a pile of shit. I look at it and see something I can use in my garden to grow my vegetables. You see a dollop of rubbish in the shit. I look at the shit and see gold, even though it's only a Caramac wrapper. A while ago, a person I love recorded me the Dr Who theme on a stylophone that I sent him. It made me smile so widely that it kept me going for a good few days afterwards.  Through all the shit, though all the trauma, there's a Caramac wrapper or the Dr Who theme being played on a stylophone, and it's all for you.

Not being the special one is hard.
Maybe you don't have super powers. Maybe you aren't a whiz at calculus. Possibly you can't sight read music. You know, you may not even have the great novel unwritten inside of you.  Doesn't matter because you know what?

I'm going to love you anyway, and there's absolutely nothing you can do about it.
To me, you're special. To me, you're perfect. You can reel off a million reasons why you think you're not and I'll rebut everyone. Twice. The fact is, I love you, and there's absolutely nothing you can do about it. Ha!

A Bad Case of The Fucks

The Boy has a new stim. Well, I say it's a stim, but it's more a new behaviour.  Or rather a revisited behaviour that has come back stronger this time. Parents of autistic kids will know how *that* rolls.

Thanks to the intrepid help of a group of lads he played with at school and encouraged him to swear, he has a bad case of the Fucks. Everything is "fucking stupid".  Dinner is met with the enquiry of "What is this fucking shit, Mummy?" When I annoy him, he requests that I go "fuck my face." Or, in the midst of a crowded cafe, an expression of distaste in his meal will result in his proclaiming (loudly) "fuck fuck fuck fuck fuck fuck!"  Gizmo is "a fucking excellent cat."  He is absolutely correct, for indeed she is a fucking excellent cat, but there are better ways to express this.

To some degree, I am heartened that he is using the word (for the most part) contextually, but I am unsure otherwise how to deal with it. It's not the worst thing in the world, but it somehow seems as invasive and deliberate as his spitting stim. When your 6 year old unleashes a torrent of swearing at you that lasts for an hour, it is hard to know how to respond to it.

It is not like the baby who builds a tower, and upon its collapse mutters "shit" to the hilarity of its parents.  This is a six year old boy who has been taught swearing with malice, by a group of his peers, for their entertainment.  The Boy has been "banned" from playing with these children.  They continue to play together and he faces long drawn out lunchtimes, where he is effectively alone.

I have been in to the school several times about it, continue to go in and raise issues, but to a degree I am helpless.  I've approached the parent of one of the children who was bullying him about trying to work out playdates for them to work through things rather than leaving them to fester as his teacher appears to have.

The very worst thing about it of course is that the children who were swearing have now moved on.  They have their (same) group of friends, and he is merely floating.

It will be a slow process, as ever, and an annoying one. The fact remains though, when you think about it, it''s just not fucking fair, is it?

Valentine

I am laying in bed with my young man of choice, and we are discussing our respective day.

I have been trotting about doing what I describe as "Mum stuff." 

He has been hard at work, stuck at a desk for the best part of his waking day.  He is having the roughest of times at present. Weekdays are no longer pleasant or full of promise.  He dreads them to such a degree he has vomited from the fear of what unknown pressures he may have to endure that day.  Every day presents a new challenge, often seemingly insurmountable, yet he continues to try his best.

His ability to cope with his daily environment has been disintergrating since new year.  He is being bullied, and it is effecting his ability He knows things are wrong and there's nothing he can do.  He's spoken to someone at "the office" about it; his superior if you will. Nothing has been done; the bullies have been told to leave him alone, and he spends his lunch hours alone; often lonely, certainly confused, whilst they continue to associate together.

The quiet way he says all this; his description of how sad it makes him breaks my heart.  I am torn between the furious anger that makes me want to kick these bullies in the legs, the sadness that someone I love more than anything is in pain, and the knowledge that I cannot protect him.

I tell him that I love him. I hold him tight, and tell him he is my best friend and that that will never change.  He drifts off slowly, but as he is dozing, he turns to me.

"Mum, thank you for my heart cake today. I will always be your valentine you know."  With that, he drifts off, and I cling to the only man I will ever really love; my beautiful autistic son.

Astronaughty

We are traipsing around the Science Museum, attempting to see the exhibitions.  The Boy and I have spoken of this trip for some time; we are both excited.  We have invited along the ostracised grandparents who made us homeless some years back.  He is concerned by their presence, but accepts that it means that he will have my attention as they will fuss over his sister.

We meet and proceed to the museum.  The Boy is polite but quiet; he is incapable of hatred for he is too kind and placid a soul, but you can feel his distrust of them as he clings tightly to my side, even reaching for the odd hug of reassurance and receiving a kiss on the forehead without wiping it off in disgust.

We walk into the museum, and already The Boy is entranced. He is careful to look around, and wants to plan a route.  We see, on the lower floor, the start of an exhibition on movement.  Lid demands we go to the Psychoanalysis exhibition, as there are stairs and she wants to climb them.  The Boy, resignedly, agrees.

Lid becomes obsessed with the many flights of stairs, and is determined to use them, though only to walk upwards.  Any attempt to halt her upwards motion is met with those meltdowns familiar to those with autistic children.  She has been disturbed in her endeavour, and seemingly must continue to climb the stairs for fear of some unknown and unrevealed consequence.

The Boy is being endearingly patient of his younger sibling.  He reminds her, gently, that there are things to see.  He guides her, kindly, to things he thinks she will enjoy.  He anticipates her meltdowns; senses what may set her off in the way that I do for them both.  He takes turns and helps her.  He sacrifices what he wants to see to keep her happy.  He holds her hand, carries the pink cat she has been presented with by the grandparent interlopers; he makes it talk to her to persuade her to move from the walkways that she inevitably decides to lie down and scream in.  He guides her up the stairs, offers to carry the impossibly heavy rucksack containing the kit needed to transport them around almost seamlessly; the ear protectors, the magazines, the favourite toys, the stim facilitators, the favourite snacks so that I can carry his sister to make her journey easier.

Eventually, we arrive at the lower floors.  We start by going through the "Who Am I?" exhibition.  They marvel at the sights, and The Boy asks why there isn't anything there about children like him and his sister?  He looks at the "Am I Normal" signs and chuckles; "I don't want to be like everyone else Mummy, so if that's normal (indicating an NT child who is kicking his mother) I'm pleased I'm autistic."

We move onwards, and marvel at the trains and automobiles.  The Boy is full of open mouthed wonder; he reads the notes provided, fills in where the information is lacking.  We wander through, towards the highly anticipated space area.

We glide on, using the items on display, marveling at the rockets.  We come to an exhibition demonstrating an astronaut, and what vehicles and tools are used when on the moon.

"Would you like be an astronaut?" I ask him, knowing that, really, even if he wanted to, he possibly won't be one.

He looks at me with his big blues, and flashes me his giant beaming smile.  "I already am, Mummy."

He's right, of course, the clever swine.  The whole idiocy that we neurotypicals allow ourselves to operate within; that the musuem itself deigns that it is able to comment on what is and isn't "normal" about a human being; he is, in essence, a kind alien within a hostile environment, exploring a world that doesn't make sense.  I think of how far he has come, and at this point Lid begins what feels like her 700th meltdown of the day.  The despair I used to feel at them is gone; I remember when The Boy was like that.  He has made me feel anything is possible.

"What about Lid? Will she be an astronaut?" I ask him.  He looks shocked. "Oh no, Mummy, but Lid will always be astronaughty!"

He ruffles her hair, grabs her hand, and we head off back into unexplored territory.

Fine

It is a Friday in July.  It has been yet another rough week in an academic year of rough days. 

The Boy has commited an act seen as so heinous by the school, his autism provoking him into reacting in a way that a neurotypical child would not, that the result is he has been put under internal exclusion.  This means that he is excluded from his class, instead being placed within another at his school.  He is to sit at the desk, in silence and on his own, completing the work he has been given.  He is not allowed to speak to the other children in this class, nor they to he.

His behaviour at home is collapsing. He is almost consistently violent. He screams and shouts.  He does not listen.  He reacts violently to the slightest provocation, even when you do not consider your actions to be provoking (an offer of an apple juice has been met that morning with a headbutt so violent my nose is still bleeding).

There are meetings; there are phonecalls.  I am at the school daily.  I try to talk to the teachers.  I try to get my son help.

My son is lost and I do not know how to get him back, but I want him back. I will accept this imposter, I will love him, but I want my boy back.

I am physically exhausted, I am mentally spent.  I wonder if it is my parenting that has made this change.  In private moments, I admit to myself in hushed tones that I do not like my son right now.  I wonder if it would be better for all concerned if I disappeared.  I consider whether it would be okay for me to die.

I cannot listen to classical music anymore without being drenched in sorrow and anger; enraged by the futility of life.  It hurts to hear it, so I stop.

I am asked how things are and respond, in a montone, that they are "fine." Everything is utterly, utterly "fine."  I appear to be in control, but I can't remember the last time I slept for more than an hour in 24.  I can't remember the last time I felt comfortable in my own thoughts.  I can't recall a time when I did not flinch in horror at the phone ringing, expecting there to be another conversation where I am told that he has been poorly behaved at school, and I am left at home, powerless, deflated, feeling judged and unable to do anything apart from apologise for my son's disability.

I try to make myself go out once a month, but I don't really feel like it.  I make myself go.  I try to be like everyone else, but I'm not.  I'm hoping that someone else will put me out of my misery as I am too frightened; too obliged to continue living; too scared of losing control.

I drink too much at times, but only on these monthly nights out.  I act like a bit of an arse, because I don't know how I am supposed to be acting.  Is it acceptable to be unhappy? Is it acceptable to just be locked into your own misery?  I'm not sure anymore.

I've stopped being me. I've stopped living in my body.  I'm floating above it, watching myself go throught the motions.  I'm living my life like one of the social stories I draw for The Boy and Lid; get up, wash, smile, get kids up, get them clean and dressed, feed them, laugh, smile, pretend.  Repeat to fade.

I ask my GP for help.  I ask for a referral for counselling.  I know that things are really bad for me, and I know that there's a chance that my pessimistic optimism isn't going to get me out this time.  I am planning.  I am thinking, thinking far too much about things that I wish I could file away because they hurt too much.

The counsellor does not turn up for our first appointment.  She does not call me.  I smile and congratulate myself for being so ridculously shit and unloveable that even someone who is paid to care about me doesn't.

Things get worse.  There is not enough chocolate to cover them.

Still, I tell everyone that I am fine.  "Yeah, great!" I say, when asked how The Boy is, how I am, how Lid is.  I cannot say aloud that sometimes I feel crushed, suffocated.  That the responsibilty of my situation seems unending.  That I am still trying to be responsible for everyone I know, even those that I know by the slightest association.  I want to ask someone to look after me.  I need to be looked after, and I am ready to admit this, but I fear I will be laughed at.  Even if I wasn't laughed at, who would look after me?

This continues.  I am frightened.  I attempt just dis-connecting myself from my body entirely, ignoring my thoughts in an effort to continue.  I fill my days with activity.  I work more nights.  I stop writing because I just can't anymore.

The Boy's behaviour worsens.  Lid becomes more challenging.  I paint the house.

In all, it lasted for over a year.  June 2009 until August 2010.  That entire period constitutes nothing more than a lost weekend to me.  I have forgotten more than I remember of it.  I am unconvinced that this will not happen again, as it has happened before.

During this period, I have metaphorically lost my Boy, my Lid and myself.  I have misplaced our direction.  I have lied to people who care for me.  I have covered up and pretended.

Slowly things have resolved and become clearer.  My head is less fuzzy.  I am close to being me again.  I can listen to classical music without feeling sad.  Life's still hard; nothing is perfect but I like it.  I like me.  And when I say things are "fine", it feels like they are.

Every Disabled Child Matters Too.

Last week, Ofsted released into the wild “A Statement is Not Enough”, a new report addressing whether the needs of SEN pupils are being met. It transpires that, in their view, they’re not.


The report has found that there are many children who have been diagnosed as having a special educational need that they do not have, as many as 25%. It states that teachers are failing to teach everyone in their classes. It is also stated that some of the more “behaviourally challenged” pupils are being labelled as having SENs when the reality is that the teaching staff cannot or will not, amend their teaching to include everyone within their classroom.

Let’s start by considering the furore that was caused by Panorama’s report that only 18 teachers have been struck off in 40 years whilst there were at least 17,000 struggling teachers, it would appear that there is some weight behind the results. If there are so many incompetent teachers being hidden within the system, it appears plausible that children are labelled as challenging by staff who simply cannot meet the needs.

If you look further, a different story appears. Over the years, the number of statements issued for children in schools has dropped dramatically. Many parents do not know, for instance, that if their child has a disability but not a statement, the Disability Discrimination Act 1995 (as amended by Special Educational Needs and Disability Act 2001), demands that their child must still be catered for as if they do have a statement. The school must make reasonable provisions to include a disabled child within a mainstream environment, regardless of whether they have the vital statement or not.

The School Action and School Action Plus schemes were introduced in January 2002, to assist with Labour’s movement towards providing inclusive (or mainstream) education for those with special educational needs. Whilst applauded at the time, the problem is the swing towards accusations of statements being applied too widely. Ofsted’s report states that “as many as half of all pupils identified for School Action would not be identified as having special educational needs if schools focused on improving teaching and learning for all, with individual goals for improvement.” (most likely believed to be encompassed by the Individual Education Plan).

The suggestion is that, as children with a statement, or those without who are covered by the School Action Plus plan receive funding to assist their education (pro rata for primary schools based on two or more pupils being covered by it, and per child for secondary schools), educational establishments are wrongly labelling children as having special educational needs to access additional monies. The very real danger is that, as a knee jerk reaction to this, funding will be scaled back even further, making statements harder to put into place, and reducing the support children with disabilities receive.

What seems to have been ignored by the mainstream press is Ofsted’s assertion that provision for disabled children’s education is weak. What concerns me, as the parent of two autistic children within mainstream schooling environments, neither of whom have a statement and yet whom we struggle to get one for the elder of the two whose behaviour is profoundly autistic is; what happens when the money runs out?

The Surest of Starts

This afternoon, my daughter and I are going to a Mum and Toddler group to do some messy play. Like many other children her age, she goes to Nursery, sometimes to a place at childcare. She sees a health visitor, and has access to a speech and language therapist. She has access to a wide range of courses, groups and activities. She likes nothing better than to watch Peppa Pig whilst scoffing a huge packet of bacon crisps, and making snuffling oinking noises. We can access all of these services through our local Sure Start centre and we are concerned, as is the figurehead of the centres Miss Peppa Pig herself and a number of children's charities, about their future.


There is current debate as to whether the Sure Start scheme is reaching those who need the service most in its current form. Therein lays the problem; who “deserves” to have access to services? What price to deliver “fair chances... to everyone... [so they may]... realise their potential”? What will happen to those who need these services because there is poor provision elsewhere in the community?

The Government has stated that the “universal service” offered by the centres means that poorer families can “miss out”, but this assumes that everyone within a defined area has the same socio-economic background.

An area may be seen as “wealthy”, but it does not follow that all of its residents are. Our local Sure Start centre have been told that only centres where it is deemed the services are “needed” will be kept open; areas that are seen as socially and economically deprived.

Who is to say though, that just because an area is deprived there won’t be richer families residing within it? Or that there won’t be poorer families living in areas that are purportedly socially and economically rich? Will those “sharp elbowed middle classes” of Cameron’s need to display their NHS Tax Credit Exemption Certificate to gain entry? Will poorer families need to display their milk tokens? It is increasingly clear that the millionaire members of the Government have little, if any, idea as to what constitutes membership to the middle or working classes.

There is no recognition that the class that a person “belongs to” will not preclude their child from having learning difficulties. Disability does not respect class. Wing’s study of same, which examined autism diagnosis rates against social class holds true; there is no qualifier where disability is concerned, but those with more knowledge will seek more help. There is no acknowledgment that, if your child has delayed development, you will need help regardless of the area or class you belong to.

The same commitment shown last year to a universal Sure Start has become “targeted support” under the coalition government. A suggestion that schools no longer be a universal service would be met with outrage; what will have targeted support next? Will Academies diverge from their initial purpose, only existing in the more affluent demographics?

“Targeted support” ignores the EPPE 3-11 project that showed children benefit from being in environments where there is a mix of social demographic; where the confident speakers help the less confident ones in developing speech, and where communities can be formed by children mixing with each other. It ignores stigmatising families based on their use of a facility. It ignores issues of pride, issues of reason and issues of fact.

As a parent, I will feel this more keenly than someone who does not have children. The daughter that I mentioned above is a lovely wee cow, who also happens to be my lovely wee autistic cow. Her diagnosis was started by the health visitor at our Sure Start centre, as we did not have an assigned one due to cut backs by our local authority. The speech and language therapist at the centre has helped us to develop exercises and games to develop her speech, as local services had a huge waiting list. She has seen a play worker to help her develop her play skills so she can integrate better with her peers.

With “targeted support”, she may not have had the chance of early intervention based purely on where we were living. Every child deserves the chance to be the best they can; and if the incumbent government takes nothing else on board from their predecessors, let them at least keep the ethos that every child matters.

Glee

Football is a relatively new interest for The Boy, but it is becoming a passionate one.  We have passed the lucky dip performed by my male friends to see "who he would support" held whilst I was pregnant with him, which saw the poor swine encased in a Charlton Athletic babygrow (oh, thank you so much Uncle Jason). 

He has now made a decision as to the team for him, and it is West Ham. Suggestions that I nudged him in that direction by pointing out that they have blue on their kit are entirely, er, true.  We will ignore the fact that I did the patented Wiltshire Chocolate Dance (TM) on receiving this news, and sadly I can neither confirm nor deny that I danced up to Himself shouting "in your face!" before letting fly what can only be described as an "interesting" smell from my bottom regions.

Needless to say, The Boy has chosen (and he is well aware that West Ham lose a lot, which is one of the reasons I hoped he would choose them, though as we all know, West Ham picks you rather than the other way around), and he has chosen well. 

The tricky part of not being skilled at football whilst expecting himself to be the best player that walked the earth is one that needs to addressed. Still, he has a passion, he loves the team, he appreaciates that they do not always win but that they always try (though doubtless there will be those amongst us who would dispute that whilst attamepting to ram their season tickets up Gold and Sullivan's posteriors).  We have attended one of those small people football classes only to find that many of the parents don't see it as a way of introducing their children to something they love but as a way of showcasing their Mini Pele.

Last Wednesday, The Boy proudly presented me with two forms for after school clubs.


The first was for Football Club which, if you've managed to read this far, you'll know is a much coveted activity by The Boy, who would like to (if possible) exchange his current primary school for Football School.

The second was for Singing Club.

I has assumed that he would want to go to Football Club, but he delighted me by telling me he wanted to go to Singing Club, because "Paul (the football teacher) takes football too seriously so it isn't fun anymore. Anyway, I like singing. And there'll be lots of girls at singing, so it'll be better."
 
I was ridculously happy, esepcially as there is are studies showing that children with autism can benefit greatly from singing and playing musical instruments.  I duly signed him up for Singing Club. 
 
When I went to collect him yesterday, I was told that there was a problem, and that he may not be able to continue at the club. 
 
My heart sank as I expected to be told that he had had some sort of meltdown or display of aggressive behaviour related to his autism.  This was not his case.
 
His heinous act had been to not sing all the songs and to look out of the window.  Once I had finished laughing in her face, I merely raised my eyebrows and walked away.
 
Clearly it was a mistake on my part.  I had thought that this was a club where participants joined because they love music and enjoy singing. I am obviously incorrect.
 
Which one of us is going to tell her that these are a group of primary school children and not "Glee : The New Generation"?

Top Gear

Fellow parents of ASD children will know about all encompassing obsessions.

This can be in the form of a physical tic, inanimate objects, ordering, television programmes, films and many, many others.

The Boy's obsessions have always revolved around a programme, expanding to toys, books, magazines, related paraphenalia etc.  This has been a relief, if an expensive one, as it means that we have a starting point to teach him things, something to draw him in and encourage him to learn.  Oh, the hours I have spent cobbling together Bob the Builder maths and Thomas the Tank Engine literacy lessons, but still.

Currently, Top Gear is the name of the game, and The Boy has decided that he is Clarkson.

Yes, that's right; The Boy has decided that he is Jeremy Clarkson, who is possibly the very anti-Mummy.  On the plus side, Lid is Hammond, Daddy is James and Mummy, rather superbly, gets to be The Stig.  We'll ignore that I can't drive; we'll focus on the fact The Boy has clearly observed that I can push that buggy of Lid's faster than the fastest bastard and piggy back the fuck out of Jenson Button (or Benjamin Button for that matter).

Today, we are taking a leisurely Mummy and The Boy stroll, before setting off to take a DLR tour.

As we make a change and start to trot towards a canal, The Boy spies a car.

"Mummy, Mummy look! It's the Bugatti Vera!"

"Do you mean the Bugatti Veyron, son?"

"Yeah, yeah, look Mummy, look!"

He gesticulates wildly at a silver car making a slow turn in the road.

"Er, that's a Ford Fiesta son."

One imagines his knowledge of car types may take a little effort and encouragement...

Happy

When I was pregnant with The Boy, I was often asked if I knew what I was having.  To start with, I replied that I would be happy either way.  I would then be told that "it wouldn't matter so long as they had ten fingers and ten toes", to which I always replied that that didn't concern me; so long as they were happy, I would be happy. 

The ability to be other people's perception of "normal" was not a wish I had for my baby.  I wanted them to be happy; have a happy childhood, enjoy the things around them, feel safe and loved throughout, as these were not things I felt as a child myself.  I wanted things to be different for my child.  I wanted things to be better.  I felt sure that this was something I could attain.

It didn't start off great.  I already put him in the same fatherless family as I was born into when he was six months old.  Still, it wouldn't be awful.  I reasoned that I could rely on my family, who all duly, er, disappeared.

No matter, things would be well.  I could work around the troublesome sitiuation we were in, and I would suceed, for the sake both of our happiness.

Life continued, difficulties arose, but always and throughout, The Boy was happy.  His smile lit up my heart.  In my blackest hours, of which there were many, the mere fact that he existed made me believe that there was good in an otherwise dark and lonely world. 

He never gave up on me.  He always believed that I could make things better for him, for us.  When my faith in us as a team slipped, his didn't.   It never has and I doubt that it ever will.

There have been inordinate lows; his hospitalisation at 18 months when the little shit tried to die on me and leave me on my own in this shitty world springs to mind; my being told when he was 2 and a half that he would never speak and that I should "consider my options"; and enormous highs; the day that he spoke again after a year of silence; when he castigates me for trying to quit when, as we all know, Wiltshire's don't quit; when he casually tells me he loves me; his obvious joy when he does something brilliant and he sees the pride on my face.

My belief in My Boy has never been shaken. Sometimes I do not believe that the actions he takes are those of my child, are those of My Boy; yet I know that often the action performed is not his choice - it is autism's choice.  It is not his reaction, it is autism's reaction.  The pain that it inflicts on him, the awkwardness that he feels when he knows he mustn't hit others when he is angry but must instead talk about it to find a resolution, his inability to do this despite how hard he tries is utterly heartbreaking. 

I don't resent that he is autistic.  I have said many times and I re-iterate that were it not for him I would have self destructed years ago.  I do resent the effect that the autism itself has on him.  How, as it has become more "noticeable" and obvious that he is different to some of his peers, parents hold back their children, the invitations to parties do not extend to him, he is glared at for behaviour that he cannot help.

I resent and I despise how it makes My Boy sad, how it robs him of his happiness, and how he isolates himself from others because he is now so used to rejection that he figures he may just as well act upon the impulses autism provides.

I resent that I think that he doesn't deserve it, because you know, he doesn't deserve it.

I resent how his mainstream school have dug their heels in over statementing, and yet threatened me repeatedly that they will exclude him from school, enforcing illegal exclusions on him that I facilitated in his Reception year, how they have refused to get involved to help him, how the "blame" for the actions caused by his autism has been placed upon me, and how, when they purport that changes they have railed against have improved his behaviour by 70% last week have meant that his behaviour is increasingly disintegrating this week.

I resent that I didn't over rule him and insist he went to a school that I thought more trustworthy, had a better OFSTED (although admittedly it is in a "worse" area), and was rumoured to have better experience with SEN children.

I hate myself for thinking that his instant happiness was more important that his ongoing happiness; that I didn't sacrifice the continuity of children who could tolerate him when he was less obviously "weird" and different when he entered Recepton at 4 who now find him unbearable at 6.

I wish that I had thought it through more, and decided against the school next to his old nursery, where he still receives some after school care, to give continuity of grown ups the group that has let him down the most.

I wish for him to be happy.  I want for The Boy to be happy.  I need for My Boy to happy. 

It is finding the way and taking the action that is most appropriate, knowing the damage a wrong decision could inflict today, the sadness it may cause, will provide him with a future that is full of the good stuff.  A future where he will attain all that I have ever wanted for him; happiness.

World Autism Day

Today, 2nd April 2010, is World Autism Awareness Day.

To celebrate, those who love someone with autism will be wearing something blue.

If you've read this blog and vaguely enjoyed any part of it, please join me in celebrating my children's disability by wearing something blue, taking a picture of yourself then posting it as a comment. 

That would be smashing. Thank you for reading.

All at Wiltshire Towers.

Cake

Today, The Boy is going on a school trip to The Bethnal Green Museum of Childhood.  Whilst it is not his first school trip, it is the first one he has made without me as his personal co-hort.  I am horribly nervous for him.

Despite my insistence that I wanted to accompany the group, I have been politely turned down. There are, I am told, enough grown ups going that my presence is not required.  This includes the awful Miss Poo, whom The Boy now associates with all things related to punishment at school, so you can imagine the affect that's going to have on his behaviour.

Instead, I will spend my time today pacing nervously, and hoping that The Boy can cope. 

In preparation for this school trip, we visited the museum during half term.  Although he initially enjoyed it, his interest waned.  There is a higher proportion of "things behind glass" than one would hope for at a museum that must see its audience as children, the areas for designated play aren't very large, and the acoustics are awful. 

He found it so loud that, on the arrival of Auntie Hazel an hour or so after we had been inside, he looked at her, and seeing how distressed she was by the obvious volume and crowding said "it's really loud in there.  Shall we go and get some cake instead?"

Today then, whilst I pace and worry; whilst I castigate myself for not just taking the trip to the museum under my own steam to make sure he is ok (for fear that I am not letting him go into the world his own way);  I will hope that there will be someone sensible enough to spot and intervene before he gets agitated, help him when it gets too noisy; who will look him, see his discomfort and offer to bring him for cake instead.

Lid-isms

Thusday was a tough day with Lid.  She was particularly sensitive, and the walk that takes 15 minutes from Nursery to home took just over three hours due to her consistent tantrums and screaming.  By the time we got home, we needed to leave again to collect her brother, which saw another set of screaming ensue. 

Although these incidents are lessening, they're not uncommon, and they weigh heavily on me.  It makes me believe that I am a terrible parent I think I am, that she hates me, that I can't get anything right and neither will I ever be able to.  I feel terrible that the children are saddled with me as a parent, and I wish I could understand what they needed with more ease.

The mood rolled through to the evening, where everything was terrible, and she screamed and screamed despite everything I and her brother (who has a much better understanding than me) tried to do to help.  After a day like that, I was relieved that the next day was a Friday, if only so that we could escape from each other for a few hours in the morning.

Friday rolls round and once The Boy has been dropped off at school, Lid and I make the short walk to her Nursery.  Outside we play and as a result we are often surrounded by small children whose parents are more interested in talking to each other.

As I drop her off and we have our farewell kiss and cuddle, I am taken to one side and asked if I can stay for a bit.  The benefit of working nights because you are, to all intents and purposes, practically unemployable anywhere else means that I can easily accomodate any such short notice request.

I am passed a folder with some drawings and paintings she has done, and her learning journal.  Whilst her group continue with their "Meet and Greet" session (the class is split into four smaller groups, and each is led by a member of teaching staff in an activity), I look at her journal.

Inside are photos of my bonkers Lid, being bonkers.  She is playing and concentrating hard.  She is laughing and pretending.  She is playing group games.  She is dancing with her friends.  She is fearless.  She is learning.

She is doing things that I have taught her at home, things that we have done, things that her brother has shown her.  I am told that she is a good reader, that she knows the phonic sounds and can recognise the names of her peers.  I grin broadly, because I know The Boy taught her that.

There is a picture of her building up bricks and blowing them down to the ground, pretending that she is the Big Bad Wolf.  I laugh, because this is a story that we "did" at home, following themes and acting it out.

She is riding a scooter, which she pretends she can't do in the garden at home, unless she is out there "alone" with The Boy, who has painstakingly shown her how to ride it, by dragging it along by the handles, walking behind her whilst she does it herself, making sure she is balancing, making sure she is ok.

There is a painting.  It is an elephant covered in poo, and when I say that that is what it is to her teacher, I receive an odd look. When I ask Lid, she tells me, quite clearly that yes, it is an elephant and yes that is his poo. "He rolled in it" she says, and off she goes to play with her friends whilst shaking her head that I am so very silly.

I am told that she looks after her peers, is caring and kind, and that she takes time with others.  She "grasses" if she sees someone be mean to her brother over the fence in his "big school". She's been known to try to climb over to help him.  She's definitely thrown the odd item at the head of perpetrators of unkindness. 

She is gentle, sweet, and all the things that she is outside of school.  In short, she is utterly fabulous.

As I make to leave, I am told that, every day, her teacher and an assistant share a "Lid-ism".  I smile, because I know what she means by that, as will any of you have a smaller person that you hang out with.  I think of the elephant painting, the one where he has rolled in his own poo, and grin. 

I trot out to say goodbye to her, and she confidently tells me she will see me later, as she is a bit busy playing at the moment.  I am worried I am embarrassing her in front of her friends, so I think I will wave and leave her to it. 

"Mummy!" she shrieks.   I come back, and she grabs me for a cuddle and a kiss, saying that she will see me later.  She then asks, in a moment that throws me slightly off guard, if I can guess how much she loves me.  This is something I say to both kids at home, and ask them if it is a little or a lot.

I smile at her, expecting a "moment".  She grins, picks her nose, wipes it on me and says "I love you a snot!"  We both pig snort with laughter.

A classic Lid-ism if ever there was one.

OK

Himself and I are talking in the kitchen.  It has been an emotional few days; I have had a number of lumps removed following a cancer scare and am in a fair bit of denial, Lid has just had her provisional autism diagnosis made, and I have run out of mentalism tablets.

Himself is finding Lid's diagnosis easy to accept.  She is still, to his mind, a pain in the arse, she is now merely an autistic pain in the arse.  He cannot understand why I am upset by it, he has no idea why it is bothering me as we "knew" that she was autistic when we went for the appointment.

My attempts to explain to him that it is the loss of hope that is killing me; that before it was said aloud by a paedeatrician it was merely a supposition, a theory as to why she behaves like she does are met with baffled looks.  I tell him I blame myself for ruining my kids' lives, because what other explanation can there be?  Both share my DNA and not paternal DNA, so it must be my fault that they are like this, that they are autistic and, because of that, I have stopped them from having the lives they might have had if they weren't.

I say that I have seen how The Boy has suffered, and he has suffered, make no mistake, from his diagnosis, and the idea that his sister will also go through it is unbearable.

In a very quiet voice, Himself tells me I am being a dollop.  He reminds me, very sternly, that of course it isn't my fault, that there is no proof of a genetic link "causing" autism, and that some children just are.  He says that actually, I have done an amazing job with our children, that if I weren't their Mum they really would have suffered.  He tells me that he admires that I don't give up, that if they have gotten anything from me it is this, that I have given them the "Wiltshire's Don't Quit" spirit.  He tells me that it will all be ok.

I am cross with him for being so nice, and I am cross at myself for being affected by what he says.  I drag my sleeve under my nose, because I want him to understand that, I want him to plumb the depths that he outwardly refuses to.  I want him to be me.

"And what" I ask, "if it isn't ok?"

There is a palpable silence, during which he looks at me, holds my hand and tells me in a most un-Himself manner "Why wouldn't it be ok?  Of course it'll be ok.  It'll be better than ok, because you're their Mum. Wiltshire's don't quit, do they? Dollop."

My hair is ruffled.  I am dragging my sleeve across my face to mop up the various parts of it that are leaking.

OK? It better be.

Feline Groovy

From the day I was born until four years ago, I had always had cats.  As a child that was plural, as a teenager onwards, singular.

You'll naturally be surprised to hear that all my cats were quite odd chaps and chapettes.

There was Puzzle, who purred like a buzzsaw, liked to perch on your head, had a definite look of the "fuck off" to her which she liked to direct at all and sundry, and acted as an efficient (if extremely violent) guard cat. 

There was Puss, who had an unfeasibly long "show name", liked to drape himself around your neck like a furry scarf, enjoyed being dressed up in clothing whilst being pushed round by a demonic toddler in a pram (*coughs* clearly, I have no idea where Lid gets that sort of behaviour from), would sleep cuddling you and spent his twilight years stealing meat from various inaccessible places which he carried away clenched between both his teeth.

Then there was Burra, or Bod as she became affectionately known (due to her disproportionately large cranium, which no doubt housed her plans to take over the planet).  She was a tabby, rescued from a pet shop along with her brother and sisters, a pet shop that we went on to get closed down due to the appalling conditions they kept their animals in. 

After Puss I did not want another cat, and these kittens that were residing at my house were only doing so until I could find them homes.  I had no desire to have another, especially one that wouldn't sit near anyone, disliked being cuddled, distrusted humans, and took no nonsense from anyone that came across her path, be that human, canine, or toddler. She was the smallest, the youngest, the weakest and the most temperamental.

It would be ludicrous for me to pretend that it was anything other than love at first sight on my part.

The Furry Boo was a much adored part of my life.  She came with me when I went to University, when I moved out of home, when I changed address.  She wasn't a family cat that I pretended I had ownership of.  She was very much "my" cat (or rather I was very much her human), for whom considerations had to be made before any plan was crystalised.

She was mean. She hated people. She sometimes crept up and slept on my stomach, purring steadily as she did so, and the first day she let me tickle her ears and cuddle her was when she was two years old.

We travelled around the country together, visiting friends, with her carry box accumulating stickers of the places we visited.  When I went home from college, or visited overnight from a different home, she came with me.

She was glorious.  She was bonkers.  She was clearly Aspergers.

When I had The Boy, it was the first time she had been left alone overnight, and she was utterly disgusted with me for leaving her.  As I climbed up the stairs to the flat, she came to the door and her mews chastised me; "and where do you think you've been? I've been up all night worrying you know.  Well, okay, let's have a sit down and a cuddle and you can tell me how wonderful I am."

We walked through to the living room, whilst my mum carried The Boy in his car seat.  I sat on the sofa, Bod jumped on my lap.  I started to tickle her ears as she spotted The Boy.

She swished her tail in my face, jumped up from my lap and went to look at him.  The face she presented me with quite clearly expressed her annoyance, and in the angry meow she yowled in my direction, I could clearly hear her accusation; "What. The fuck. Is that? I said I wanted a dog."

For the next six weeks, whenever The Boy was brought into a room, she left it.  Bod was displeased with this new fur-less thing that made strange noises and took up my attention.  She would look sniffily down on us from on top of the wardrobe every night.  In short, had she been larger, she would have eaten us.

Then, I had a very long day.  New babies can be tiring.  When you are flying solo and literally have no clue what you are doing, when you are operating on sheer terror and caffeine, when no one appears to be offering you kindness, just critical opinion after critical opinion, you are worn down.

The Boy had taken to that wailing, brain melting screech throughout the day.  His biological father was due to visit him that evening, and would either be very late or not turn up at all as was his wont.  I could not foresee a way that I could get through this day, or the days like this that I knew would follow, and I suppose I didn't want to. 

I walked to the bathroom and sat on the toilet and sobbed.  Not just for the lousy living conditions, and the lousy ex partner situation, but also for myself.  I perched out the window, having a fag, trying to calm down.  Bod entered, and fixed me with one of her hard stares.  She glared at me, and walked out again.  In the other room, The Boy had stopped crying.

I remembered hearing stories of cats sitting on babies' faces, and had dismissed it as nonsense.  His silence made me query if I had been correct. I went into the living room, and found The Boy blithely trying to hold on to Bod's tail in that blind, unseeing way of the small baby, whilst she purred and moved around him.  When she saw me, she admonished me with a filthy look of "well, he was crying you know."  Bod elicited his first high pitched squeal of delight, and he afforded her that, as she afforded him a fondness that she bestowed on very few humans, every time he saw her.  Hers was the first name he learnt to say, despite my constant "Where's Mummy? What's Mummy doing?".  She would sit near him at night when he was afraid, we would all sleep in the same bed together (just don't tell the NCT), and she would run to him when he came into a room.

When Bod stopped being there, he refused to go into the house, and cried outside for thirty minutes. He knew she wasn't there anymore, and as a result he told me, quite firmly, that there would not be another cat for us.

Time has passed, and we are moving through a period where The Boy was terrified of animals.  He is open to the idea of a cat, and his sister desperately wants one, possibly so that she can team up with it and create a super breed of furry humans that will do her evil bidding, steal sausages for her, look disdainfully at others etc.

I suspect we shall find one for us, one with a leg missing, or its ear torn, or one with chronic flatulence which would fit smoothly and fluidly into Wiltshire Towers.  Four years on, although she is still missed and remains irreplaceable the rancid, fetid, purring mad wee furry tart, it is time to start feline groovy again.

Trying

Today, in an effort to build bridges with The Boy (whom I have spent the last few months arguing with more and more), it was decreed that we would have some Mummy and The Boy time.

After much debate, it was decided that we would go swimming at our local pool, which fantastically offers free swimming for those with special needs and their families on Sundays.

It is agreed that just Mummy and The Boy will attend.  The build up has been ongoing for several days, including buying a swimming costume (blue, Victorian-esque with a large orange octopus on the front), purchasing swimming goggles (blue, naturally), sorting out a swimming bag (obviously, a blue one) and practicing our swimming moves at every opportunity (in the bath, on the floor, in the mirror, in the street).

The Boy is extremely excited about going swimming.  It is his first time, and it will open up a world of possibilities for us both.

I am worried about how he will react - will it be too noisy, will he get upset about the water or if he gets splashed, will he like getting his head wet, will he get angry and aggressive, will I have to spend my time apologising to other parents like I so often do when we are out? 

I am so worked up that I let my mind wander and become narcissistic, suddenly seized with terror that people I am not about to have sex with will see me in a state of undress, in only a swimming costume, the first time I will have been in such clothing in two decades.  I am also reminded of how terrible a swimmer I am - my mother, never having been confident in the water, has passed on a distrust to all of us, but the lack of ability is all my own. 

I am determined not to pass on the fear, I am determined that it will not matter whether he likes it or not, but that we will try, because that is how we do things at Wiltshire Towers - we try.  If he does not like it, we will leave, if he does we will stay.

We prepare at home, putting our costumes on under our clothes.  He is dancing with joy, he is so happy to be going swimming.  On the walk to the swimming pool, he is telling me how he will put his face under the water, that he will swim for miles and that he is really excited.  I am excited for him, but worried that it will not be what he thinks it will be, that he will be disheartened if he cannot do it, that he will not want to come again and this will be another door closed of things we can do that "normal" families do.

We arrive at the pool, and we race to the changing rooms.  He is ready quickly, and we walk through to the pool.  He is giggling with happiness, and cannot wait to swim.  The special needs swimming instructor kits him out with arm bands, finds him some floats, and encourages him to play.  I attempt (and fail) nonchalence, hovering near by when I should be keeping my distance, impeded in my desire to rush to him when he stumbles by the sensation of walking through treacle.

An incident occurs - he splashes another child with water.  I think I should tell him off and am told not to worry, it isn't a problem.  All the parents here have children who are special, so they understand.  I don't have to launch into a big explanation of The Boy's autism. 

I can, bar the fear of The Boy drowning, relax a little, not feel self conscious, and just enjoy being with my son with a group of people who are not judging us.  It is freeing.  It feels marvelous. 

Watching my boy laughing, playing, interacting, being silly causes my eyes to get wet, and it is more than the chlorine that is causing them to water.  My grin is getting wider and wider. 

He tells me he has never been happier.  He tells me that he loves swimming, that he wants to come again.  He tells me that he will come here, then he will learn to swim, and then he will scuba dive.  He shows me how he will scuba dive, and in the process learns that he cannot breathe under water.  It causes his mother concern, but he is ok, coughing and spluttering, and tells me that he is just trying.  The he fixes me with his blue eyes and tells me, quite sternly, that we must never, ever give up trying.  Then he tells me that I was the one that told him that, that he believes me, and that he will never stop trying because Wiltshire's keep trying.

Bloody chlorine...

Me! Me! Look at Meeeeeeeeeeeeeeee!

Today, we had a meeting at The Boy's school. It was to discuss his worsening physical aggression, his now solemn refusal to do any work whatsoever at school, and was under the heading of a Team Around The Child meeting (which is where all the relevant professionals gather to give input and advocacy for the disabled child).

The violence is a matter that has been brought up several times over the last few months, and has seen us (Himself and I) trailing back and forth, writing letters of complaint, making telephone calls in order to get some resolution for him.

I am going to write about this properly at some point, because I really need to get out of my system the sheer incompetence that we are constantly encountering, the refusal of the school to assist, their ability to pass the buck quite spectacularly, and their inability to just admit that they do not want my son there anymore and assist us in placing him into a more agreeable learning environment for him.

I just need, at this point, to be extremely spiteful about one of the school's representatives, a woman who is employed to be well versed in the educational needs of special children.

As such, one assumes that she would have, at least, a minimal understanding of the conditions of the children she is paid to assist. As those of us with children on the spectrum know, it is one hell of a condition to get diagnosed and get assistance with, due to its tells.  It is a varied condition, affecting each child with it in a completely different way, and no two children are the same.

The only people that usually have a good handle on it are the people the autistic person spends the most time with; teachers, parents, siblings.  Thus it is always an excellent idea to accept input from parents, as they serve as the best advocates for their child.

Therefore, if a parent suggests a way that they believe will work, a way that they have tested at home, one would assume that said suggestions would be welcomed and taken on board.  If that is the assumption, one would be oh so very, very wrong.

Apparently, in the teaching profression just as in real life, there are those who have to be the centre of attention, who everyone has to look at, and who have to claim success and victory in areas where there is none.

For example, try explaining to someone who, as I said above, is the employed to co ordinate the needs of those children with special edcuational needs (let's say they had some sort of job title to that effect), what the theory of mind is in relation to an autistic child.

Let's then say that said person, who is clearly hypothetical and, were they to exist which they clearly don't, wasn't even at the meeting (which possibly didn't even happen), decided that they were the authority on your son, and knew more than you, your son's step dad (who has been brought up by him), a teacher from a specialist autism advisary service and The Boy's teacher.

You explain what your son understands about emotions (from years of you doing work using The Transporters, looking at photos, doing social stories).  You try to explain that he has always recognised when he is sad because he has been hit, that he understands that other people can be made sad by someone else hitting them, but that he has no concept of him ever causing another person to be sad by hitting them as he enjoys the action of hitting them and therefore assumes that they must also.  You explain this in deviated forms several times.  Then the representative from the advisary service that specialises in your son's disability explains the same thing, and your son's teacher has also said the same thing, said special needs co-ordinator states that your child does understand that what they have done is wrong because they dislike having to go to their room as part of their punishment, and declare that emotional literacy classes that they put in place (which were actually suggested and arranged by yourself) have taught him same, you need to make a choice.

Do you explain again that he doesn't understand that his actions affect other people's emotions? Do you explain again that his upset is caused by his perception of punishment (having a sticker taken away from his chart) and not his action?

Or do you, as his teacher did, just tell the SENCo that his upset is because he doesn't like the SENCo?

Would you then, as a parent, having endured a boorish pompous imbecile blustering on incessantly for several hours about how any and all acheivements that your son has made are down to her (disregarding that she has "known" him for three months, and has committed a cacophony of incompetencies that should have seen her dismissed from her post for same), and that all failures are down to your inability to parent and youre son's teacher's inability to teach, would you or rather could you, let that be?

Or would you embark upon a monologue of five minutes whereby you made it extremely clear to everyone gathered at the meeting that your child despises said SENCo? Would you embellish it to such a degree that everyone else present at the meeting sniggered childishly behind their hands, as the SENCo turned increasingly red and became increasingly frustrated that you refuse to stop?

I would adore to be able to tell you that I resisted the urge, but here is the one place I tell the absolute truth.

I was fairly unstoppable. I called her incompetent several times during the meeting.  I pulled her up on her mistakes, and the extremely bad way she has handled my son's case, and her refusal to accept any responsibility, and her inability to accept that it wasn't about her, it was about The Boy.

When I collected The Boy that, I explained to him that, from now on, he should associate bad behaviour with having to go and see the SENCo.  If he wanted to not see her (or Mrs Poo as we are currently not correcting him in calling her), he needed to ensure that he gets all of his stamps, and absolutely no lines.  Because a line didn't just signify bad behaviour, it meant having to go and see Mrs Poo.

Who wants to place bets as to how much more successful this is going to be?

I'll chuck a £20 on it...

It may be time

Following a meeting at The Boy's school today, the consensus has finally been reached that it "may be time" to look at bring in the behavioural referral team, and placing The Boy at another educational institution.

It has been admitted that he is not learning anything as he refuses to do so.

His violence is ever escalating, his temper is worsening, my bruises are getting bigger.  He is attacking and threatening adults as well as children.  Teaching staff and support staff alike are afraid of him.  He is now at a point where none of the other children will play or associate with him, as his mood swings are so violent and unpredictable.

It has been vocalised that "mainstream school may no longer be appropriate for him."

The thing is, whilst I am happy for him to go to a "special school", and in many ways, this has been what we have wanted for a very long time, he is not.  The very real problem is that it is not something that he wants, and therein lies the issue.  He adores having friends, but now he has very few, if any.

He is so isolated, so alone, so frightened, and I have no idea how to satiate that.  I used to have the key to get to him, but he's changed all the locks and now none of us know how to reach him anymore. 

I'm not ready to quit, and I never will be, but tell me; how do we deal with this? Anyone? Please?