The Green Mile

An adage at Wiltshire Towers has always been "when you're going through hell, keep going." 

It's served as a timely reminder that however empty the barrel is, there's still more you can scrape to keep going.  It's a reminder that bad times are transitory.  It reminds me that I can get through anything, even the shocking revelation that I can agree with a Tory.

It has founded our philosophy that Wiltshire's don't quit.  It has reminded us to keep banging away at things, even when they should be let be.  It has inspired me, damnit.  It has inspired me never to give up on these wee babies of mine; never to give up on myself; to always believe that things can be achieved, that I have the resources to keep getting things done, regardless of whether I feel I can keep going it has made me continue.

It also serves to remind me that sometimes, no matter how hard I try to get things done, it's time to give up and move on, to look elsewhere to achieve that which needs to be done. 

This year, The Boy has become a changed character. He used to love going to school; he used to achieve.  He had the odd moment of bad behaviour, rarely at home.  He enjoyed activities, and although he didn't have any friends per se, he was liked and appreciated by others.

This has escalated so that now a day does not pass without a phone call from school to tell me he has performed some wrong doing.  Whilst this is something to be expected if he is hitting someone, the school itself has defined which aggressive behaviour deserves to be reported to me (apparently, it is worse for him to hit an adult than a child).  They phone me if he calls a teacher cheeky.  They phone me if he tells them he needs to be left alone.  They phone me for imagined insolences.  They tell me that I am to define to him which people he can stay away from if he dislikes them (again, that I must define between an adult and a child).  They tell me how to punish him and that I must do what they say.

I haven't had a single day with him at this blasted school this year where I haven't felt like crying. I hate forcing him to school in the morning, bribing him to get ready, and make no mistake it is a process of asking, pleading, shouting to get him out of the door every morning.  I hate the playground duty with the Sewing Circle; the gossip, the bullshit. 

It is like dragging the wrongly convicted man to the electric chair, forcing him along the green mile to the destination of torture; school.

He is upset. I am upset.  My ability to support the Victorian pseudo authoritarian regime put in place by the head, or at least pretend to, is exhausted.  I just can't anymore, and I can't see why he should either.  I can't understand why I have forced him through this for so long.

It all became clear when we sat down to write a list of pros and cons of school.  His "for" list consisted of the blue jumper and tie he wears as uniform, and that was it.  He could think of nothing else positive to say about it.  That, my friends, is the wake up call I had needed.

Yesterday, I spent the time contacting and visiting schools for him.  Monday will be the same procedure, as will Tuesday, Wednesday etc until I have found something that works for him, and I will find something. 

I'm not prepared to give up on the little sod; never have done, never will do.  I am, however, prepared to swap one definite hell for a potential hell, one that might help him, or at the very least do him no harm. 

It just took a plummet to the mud at the bottom of hell that prevented me from moving at all; a stop that gave me time to see clearly, look around and see what was really going on, to be able to decide to keep chugging through; but towards the happy space this time.

a

Fine

Wiltshire Towers is in limbo.  Lid had her "special" CDC yesterday.  The one where I had hoped that the paedeatrician would laugh at me, tell me I am an over anxious mother and that of course she wasn't autistic, it was merely my imagination.  The knowledge deep within me that yes, she is autistic and always has been, had been stamped down.  We waited for the verdict.

The paedeatrician spent an hour questioning me about her "developmental milestones", whilst Lid endured two hours of tests to see how she was developing.  The staff congratulated her with every mistake she made, cheered her on regardless of her success.  I could see how many things she "couldn't" do, and my heart was sinking.

There was nothing left but for it to be provisionally confirmed. Lid is autistic.  The doctor was jolly and upbeat, congratulating me on how well she has learnt to do things.  Inside, I hated myself a little more.

It will now be a long uphill struggle to get that diagnosis made formally. It will be hard to get help for her.  It will be more fighting, more shouting, more crying.

The fact remains that there is nothing to do here but suck it up and crack on. 

I joke that at least this means I won't have any grandchildren, as everyone knows how I much I hate midgets, that I won't have to worry about their furture boyfriends or girlfriends.  We will chuckle as to how we won't have to fork out money to buy presents for them to go to birthday parties, when the fact remains that they are actually asked to very few. 

We will ignore that it hurts to see them isolated and unable to interact with others.  We will pretend that I don't cry when I think about how lonely they are, how lonely I know The Boy is because he has told me.  We don't kick the professionals who tell us that actually, the kids don't realise that they're different, so it doesn't "bother" them.

We will accept that they won't have the "normal" childhood experiences of their peers, and we will pretend that it doesn't matter, that it is fine.  We will pretend that not being able to have a "normal" child is not cutting at my heart like the sharpest knife, that it doesn't make me fucking angry that I am such a shit parent that I have failed them in being able to supply them with the simplest task of decent DNA.

We will pretend that everything is peachy, everything is well, and I will not be awake at horrible hours worrying for them, for both now and the future.  We will pretend that, when they are asleep, I don't hold them and cry in to their hair at what I perceive to be the unfairness that it is they and not other children who are autistic.

We will be quiet and we will be still.  When you ask me if I am ok, I will say that I am fine.  When you are not looking, I will stare off to the middle distance, and try to think about nothing.  I will take pride in achievements that they get that you think are not important, because for them it was harder and took longer. I will love them, and I will be proud of them. I will continue because that is how it has to be, and I will be the one that has to explain again and again that no, it won't get better, no, they cannot help it, no, I do not need your input.

I will cry, I will scream, not for the diagnosis, not for me, but for the loss of the dreams.

It is not the diagnosis that causes the pain, it is the death of the dreams.  And it is they; the hopes and aspirations that I had for her, that I had for him, the ones that need to be amended, the ones that can now realistically never have though should they have them for themselves they will attain them; that the loss of can never, ever be fine.

Glass houses

Some of you will be aware of the recent sad death of an 11 year old autistic boy in Barking.  His death was caused by the ingestion of a caustic liquid, believed to be bleach. He is said to have had visible injuries.

His mother, who has been arrested on suspicion of his murder, was believed to have drunk the same liquid, but was released from hospital without treatment.

There was a younger sibling to the deceased, who was said to have neither ingested the liquid nor to have had any visible injuries.

It is a terribly sad story.

What I write here is clearly neither a political nor a legal blog.  If it were, I doubt that those of you who read it would, as there are a great many excellently assembled blogs that fill that need.  It is, in essence, merely a very subjective opinion page, nothing more and nothing less, and thus what follows should be regarded as that; an opinion.

At present, we do not know the facts to the case, other than a young man who was severely disabled by autism died from ingesting bleach.  There is no evidence, only suspicion, that his mother gave him the bleach.  I would be surprised if his mother could have "made" him drink the liquid if he were in a mind not to.  Certainly my five year old autistic son has knocked me to my feet when I have attempted to give him the less posionous but equally foul tasting fish oil that he takes each day to help homepathically calm his behavioural problems.

The injuries that he sustained may well have been caused by his mother, but they may well also have been caused by what would be his own incredible strength as he threw himself about.  My own children, both of whom have varyring degress of behavioural issues, are incredibly violent at times, and can lash out so hard that they injure themselves.  I have no way of proving that I don't hurt them other than my word, and were the injuries they sustained to be examined properly, it would be found that some of them are self inflicted through their self harm bouts.

For me, the most shocking aspect of this case is that it is not the first time that such a sad situation has occured. 

What I shan't entertain, not even for a moment, is some sad, snidey opine that such a desperate situation only arises when the parent of the child is doing it alone.  Trust me, single parents are tougher than paired ones, because we have to be.

What I find unfathomable is that we, as a society, have failed another parent and their child.  We are not talking about women who have committed what can only be described as evil, a pre meditated, tortuitous death played out upon their young for their own sick amusement.  Rather we are looking at women living in a desperate situation, where little or no help or support is available, and that help often only springs up when the situation is hellishly near a tragic conclusion.  Even then, as these cases show, it is not always timely.

Don't think, not even for a moment, that those of us with disabled children wish that we didn't have them.  We don't.  On the whole, on a good day, on an average day, we are happy and joyous with our lot.

Consider then a day when your depression has hit you hard.  Consider a day when you have been pummeled constantly; your child has done nothing but hum loudly all day; they have shaken a rattle all day; they have picked at their until they hands are a scabby mess of blood; they have hit their head on a wooden floor until they are bruised and dazed despite your trying to stop them, and all you want is for a moment of normality, a short time when you can be you and your child be "normal".

Consider a society where getting help for your child is ridiculously difficult, where they will be allowed to drown at mainstream school, where getting a statement is ludicrously troublesome, where accessing specialist services takes time, sometimes money, where getting a speech and language therapist appointment is one of the hardest things you can do, where you have to beg for help with your child's violence, where the finger is always pointing at you, where you are ultimately responsible and the baby that you had, the baby you still see when you look at your child, has nothing like the life you had hoped for them, or that you had hoped for you.

Whilst I can't condone the act, I can't and won't condemn the women who did it, because the desperation that they feel is at such a level that you should all wish you never experience it.  

I have no more to say on it, but I would ask that you don't judge the woman accused, as she is as much a victim as her son, and remember the proverb you were told as youngsters about those in glass houses not throwing stones.

I can imagine

When I am told by someone that they "can imagine" what it is like to have autistic children, the temptation to scream at them is one that I have learnt to quell.  It has taken time and practice, and a great deal of internal monologuing, but it has been achieved.  I have been completely unable to quell the sarcasm though, and really why would I? Often it is the only thing that gets me and many other parents in my position through the day.  Humour darker than the six month winter at the South Pole, dollops of coffee and citalopram are literally my only connecting threads to sanity.  Whilst I will generally reply "hmmm" whilst smiling, occassionally I will let rip. On such occassions, people will enquire if there is "something wrong", and I will tell them.  A condensed version, but I will tell them.  Next, I will start to cry as it feels treacherous to admit that actually, the fact that my kids have autism is the problem, if not every day, then on this day.  Then they back away very slowly, looking slightly concerned for their safety, as I burst into tears.

I suppose, to save my having to cry again, I would like to offer this.

If you see a parent struggling with a child, whether neurotypical, not neurotypical, able bodied or not obviously so, please do the parent a favour.  Shut up.  Say absolutely nothing.  Offer the parent a grin and a raise of the eyebrows, and that expression should convey "fuck me you're handling that well."  Then, piss off.  Leave them be.  If they want help, they'll ask.  If they want to include you, which basically we only do because we are embarrassed and for some bizarre reason want you to think that our kid's behaviour doesn't  reflect on us, respond.  You will be able to tell when we are doing this, and all that is required on your part is a wry smile and an acknowledgement,

When people enquire how I am, I don't say.  Mainly it is because I possibly am the definition of fucked up beyond all recognition, because I don't want to be seen as a victim, and I am fearful that everything will tumble out rather than today's issue, but also because you will say "I can imagine."  The fact is - you can't.

You have no concept of my story, just as I have no concept of yours.  I wouldn't dream of patronising you by saying "oh, I can imagine how hard it is to decide if you're going to buy an ipad."  I couldn't.  Even if I wanted one I couldn't fucking afford it, so why dither on it.  I can't imagine what it is like to have disposable cash to spend on myself, let alone that much disposable cash.  I know how it was when I did have disposable income, but it is so long ago I have forgotten. 

So, here is the thing.  When you ask me if I am ok, and I start to tell you, listen.  Please don't foist your unwelcome platitude of "I can imagine" on me.  It isn't welcome.  I don't want it.  Offer me a shit joke.  Give me a nice smile.  Mush my hair up like you would a kids'.    Buy me a beer.  If I don't want to tell you, be cool about it.

Understand that, when autism is the "problem", I have a very hard time saying that out loud as it feels like a betrayal, and that hurts me very much.  Understand that I will need to give you a long qualifying statement about how great the kids are, and in between if you listen, you will hear how my heart breaks at the wanky shit the kids have to go through; how each rejection of them physically hurts; how being punched in the face by the people you love the most makes you die a little inside; but that you always have to keep on going, through tiredness, past fear, over exhaustion.

When you send your child off to school, you entrust the most precious objet d'art to them.  You expect that you will receive said artefact back in a similar, if not improved, condition.  When you are instead handed back a piss sodden tent that some mental has embroidered the names of the poor unfortunates who have been Rohypnoled into knobbing them, you get a bit bewildered.  It doesn't make sense.  Then you go through the procedure of cleaning and restoring that art every night, every morning, every weekend and holiday, only for it to be destroyed every school day.  You hand them your beautifully made bed in the morning, with its Egyptian cotton matching bedsheets, and get a grotty sweat riddled, fag laden, vodka stained piece of vileness at the 3.15.

When people say to me "I can imagine", I sometimes can respond with "actually, you can't." 

What I want to say, what I want to scream is that, actually, when you are bringing up kids by yourself, it is hard.  When you do that with little or no support from your family (and you choose friends that can't or won't help), it is even harder.  Have ME, it just got a little bit more difficult.  Add in a dubious past for the parent, filled with various unpleasantness that they are fighting to overcome so their own kids don't go through it, you've not increased your chances of getting it right.  Pour in a good helping of needing to be good at what you do, but not being capable, the odds start to stack.  Give your kids a disability, and make it so that that is accompanied behavioural issues that provokes from them the sort of violence that you cannot get your head round, that makes you scared of your own children - whamo.  You can't imagine.  Neither could you try to.

So please - don't.  Just don't.

Logic

One of things that is utterly delightful about having someone with autism in your life is their logic.  Regardless of the bad aspects that you encounter, and there are a few, the logic can undoubtedly make up for it.

Here are some of The Boy's recent decents.

On being told to wash his hands after using the toilet;

"I don't need to wash them, I cleaned them after I went to the toilet this morning." (It was 7pm at night).

Whilst, in an attempt to force him into practicing his fine motor skills (which are typically slower in developing in autistic children), I produce a book about John Lassiter, Pixar animator and one of The Boy's personal heroes, in an effort to get him to practice holding  a pencil in a tripod grip to do some drawing;

"I won't need to learn to do this, because John Lassiter has people that draw for him.  And they use computers anyway."

After a request that he sits down and practices his handwriting has been refused, and I use a grown up he likes who is a journalist as an example of someone who had to learn to have neat writing so that he could do his job (followed by a piercing gaze in my direction);

"No he didn't, he uses his iphone, and I bet when he hasn't got that, he uses a laptop like I do.  Or he gets his Mum to do it"

.

In the midst of a negotiation about bedtime, where he is adament that he does not need to go to bed;

"I don't need to go to bed.  I went to sleep yesterday, so I don't need to today.  Anyway, it's boring and I want to eat sweets."

On being told the he most certainly will not be eating any sweets and that he will, instead, be going to bed;

"But Daddy's eating sweets.  And he's not gone to bed. Why is he eating sweets and watching telly when I have to go to bed? Nanna said he's a baby too, and I'm a big boy, so why is he up and I'm not?"

After hearing that a grown up friend is coming to see him that he has never met before, he tells me, dismissively, when it is enquired whether it is okay if she can come;

"Well, yeah, but only if she has big boobies.  And not if she's going to be all girlie and silly, like Lid."

After being told, in depth, about god and heaven etc by a well meaning parent at school;

"Don't be silly, that doesn't make any sense at all."

On enquiry as to whether he had had any lines put through his good behaviour stamps at school (he receives a stamp each time he behaves well at school, which will be crossed out if he shows bad behaviour, like spitting or kicking, hitting et al);

"I didn't get any lines put through my stamps today, I was a really good boy wasn't I Mummy? Can I have a prize?"

After Mummy dishes out a prize, it transpires that whilst he didn't get any lines put through his stamps, he didn't actually get any stamps at all because he was so poorly behaved that day.  On further enquiry, where he is asked if he got any stamps at school, he replies, without batting an eyelid;

"I didn't get any lines at school today Mummy."

Then eats his dinner and starts humming.

After a discussion as to why we mustn't hit as it isn't kind and it hurts, and a reminder that we must use gentle hands at all times, he declares;

"What about if I hit people gently? Like this?"

(a resounding thwack around the noggin follows).

After being reminded to be careful whilst walking in the snow, and that he should be careful as he gallops off like a gazelle in the Serengheti, I am advised with a heavy dollop of sarcasm;

"Why would I fall over? I'm ice skating, not walking."

After calling his name six times, I ask him, very loudly, if he can hear me;

"Of course I can hear you Mummy. I'm not deaf. I'm just ignoring you because I don't want to speak to you."

Should. Have got. A cat.