Flinch

I have a bad history with the significant men in my life.  My father was a violent paedophile, who physically and emotionally abused me.  A number of ex partners have been physically, sexually and emotionally violent to me. 

As a result, if a male raises his voice at me, I will shrink slightly into myself.  I have been on long boozy nights with male friends, lads that I have known since primary school, and should they, in the midst of over animated conversation, raise their hand to enforce what they are saying, I will flinch.  It isn't noticeable unless you know that I do it, but it happens.  Every time.

I had never met a male that I felt completely comfortable with when clothed.  Make it a naked party and it's fine - I seperate sex and love so completely that whilst doing the former the latter never even occurs to me, and nor has it ever done.

It is slightly bizarre that a naked party led to the arrival of the one male that I trust and love above all over, the person who taught me what love actually means, that unconditional love was real and existed - The Boy.

The Boy is a lovely, funny, sunny ray of bonkers.  He is clever.  He is kind.  He is decent.  He can look at a person, ascertain that they need help and give it to them.

He also suffers, as do we, from extreme mood swings.  They can make it very hard to like him as much as I'd like to at times, as part of The Boy's autism experience is extreme violence. 

He hits, kicks, spits, headbutts, sometimes relentlessly.  During the holidays and the time around it, when they were off from illness, or because of snow, it felt like he was constantly beating me up. Mostly because he was.  Lid also has violent tantrums, and these are progressively worsening as she gets older.

There are times when the pair of them kick the living shit out of me.  They are strong children, phenomenally so.  At any time, I have numerous bruises.  I have had my nose broken, black eyes, broken fingers, chunks gouged or bitten out of me, have been spat at constantly for hours.  Whilst it isn't an everyday event, it isn't and neither has it ever been an occassional occurence.

As he grows older, the incidences of violence are happening with more frequency and force.  It mutates into other forms - he now shouts almost constantly, he spits regularly, and the hitting has graduated into full on punches to the face - he has broken my glasses in the past.

I love him.  I can't imagine anything that would stop me from doing so, despite the beatings.  But I have noticed that now, when he comes near me, I flinch.  This is something I had always hoped wouldn't happen.  I know that I am, silently, scared of him.  I am frightened of him.  I don't always like him as much as I want to.  I want to like him as much as I can, but the behaviour can preclude that.

I have been, as of late, attacked with increasing frequency and ferocity.  When he finally goes to bed, I am slightly relieved.  I know that he doesn't actually sleep until 1am, and until then I will be called upstairs to reassure him that he is safe, to receive extra slaps and to generally calm him down as much as I can.  By the time he is finally asleep, I may get a few hours before Lid wakes up, when she will start her tantrums within the hour.  Her brother will join her and join in the hitting, by 7am.

I am exhausted.  I am depleted.  I have refused a job working with autistic children, not because I don't think I could do it, but because it presents me with a possible future for both children that I do not wish to contemplate.  I cannot believe that their future will include heavy medication to regulate their behaviour to a level that society expects.  I do not wish to contemplate putting them into assisted living programmes.  The fact that it is a possibility for the future horrifies me.  What makes it so much worse is that I can see that this may be a probability for The Boy, whilst it remains only a possibility for Lid.

I know he is young.  Tomorrow is a different day, a new beginning, and he may have a great day where there is no hitting, no spitting, no shouting, no kicking.  Lid may have no tantrums at all.  We may all wake up in a fluffy wonderland, where Labour is actually left wing, the BNP is merely a French bank, and I fart out fairy cakes. 

In the meantime, I will continue haranguing the professionals, turning up on their doorstep, writing them emails, phoning them, in the hope to get help for the midgets.

When you ask me how things are, I will fall silent.  I will distract you with something else.  I will play up the good parts, even if the good part lasted ten minutes in the course of a week.  I will tell you that everything is fine.  I will think you are asking out of politeness, and do not require a middle aged woman sobbing, clinging to you and begging you for help that you cannot give whilst you look on puzzled and wishing you hadn't asked.

Just know that things aren't fine for me, not even slightly, and the reason I don't discuss it is because I can't.  I can't even think this stuff without flinching.

Anniversary

The Boy and I had an argument yesterday.

Post his recent sticker and certificate triumphs, which resulted in our hot date after school yesterday (which included buying him a pair of boots, having a ride on a Paddington car and eating an ice cream), he was in a shocking humour last night when we arrived home.

He was petulant, moody, argumentative and aggressive. He spent twenty minutes arguing intently with me about why he would not be having a bath that evening - he didn't need one, he wasn't dirty; he had one yesterday; he wanted to go on the computer; I was being a big meanie; he just didn't want to.

Over and over, louder and louder, with my repeating, "best voice" or "number 3 voice, please" to no avail. He refused to listen to me, although he was registering what I said.

I was struggling to contain my anger - I feel a bit despondent this week and I keep forgetting to take the mad tablets, so keeping my cool is a bit harder.

I kept calm, we got through the rest of the day with more insolence - his deciding to run his own bath, brush his teeth and his face with toothpaste, his making and then helping himself to sandwiches and toast, getting dressed in day clothes when it was nighttime, turning on the computer and doing a search on space when I had told him that he was not to use it - and I wrote it off as one of those days when I remembered.

On 24th November, 2006, I was told that for all intents and purposes, I may be best served if I "wrote him off". He would never speak, he would never function, he would always rely on me to do everything for him, and really I may like to consider "my options."

I would just like to say, sincerely, to the people who told me that - fuck you. How fucking dare you piss on my hopes and dreams, before The Boy had even got a diagnosis? Who the fuck are you to write a 2 and a half year old kid off, you talentless, fetid wankers? How can you live with yourself after telling someone that their son wasn't "normal"?

So - and I really do mean this - every time I argue with the little shit, every time he disobeys me and trots off to do his own thing regardless, every time I feel like listing the sod on ebay as he's being a wee arse - and I mean EVERY TIME - I will always remember (eventually) when I was told to forget about him. And I never, ever will.

The only thing I can say to you, whoever you are and whatever your situation is - don't quit. Don't give up. Stop running and face it head on (and trust me, I have wanted to run like the clappers away from this whole parenting thing more times than I will ever say aloud. We will ignore that I run from other things but I am trying really hard to stop doing that).

Giving yourself the power to do that, whether it be facing a challenge you can do nothing about, accepting a fact you don't want to, examining why you act in a certain way, accepting your mental health may not be what you hoped it would be - look it in the eye and take the fucker down fighting.


It may take some time for it to sink in (I cried for 5 days non stop, went to the doctor and started those mad tablets I keep forgetting to take, and then decided that no cunt writes my kids off without me raising one hell of a stink, yet he still wasn't diagnosed as being autistic for another 2 years - that anniversary is this Friday). You may know what you need to do and just not be able to - but when you can, when you're ready, and sometimes even if you're not ready you still need to try - fight the good fight. Never, ever quit until you know you can't go any further. And when you feel like that, just keep on a little bit more.

The Boy - a stubborn little shit just like his Mammy. Happy anniversary.

Days like today

I hate it when you have one of those days where nothing is shining and bright. Everything is dull. Everyone around you appears to have a sparkling time, appears to be coping wonderfully with their life, whilst you struggle to get the kettle on.

On days like these, which run into evening and then nights, I end up thinking. Doing that horrible, tortuous thinking that I'd rather not do.

I've been thinking a lot lately. Mostly about dying. Not in the planned, studious way of when I made failed suicide attempts in the past, but the fact that eventually I will die. And when I die, I will leave two people, hopefully adults by that stage, who are autistic. Who will look after them?

I don't know the future and, like lot of others who are parents of special children, I try not think about it too much, for fear of the damage that it does to both my head and my heart.

It just seems that these thoughts - along with the "did I do something wrong?", "am I doing the best that I can for them?", "what can I do to help them?" thoughts are crowding in and vying for attention at the moment, and despite my attempts to stop them, they just won't abate.

So I spend a lot of nights, after I've finally got both of them to sleep, cogitating over and over as to what I can do, and what I must do, to make things right by them before I die.

Part of the problem is, I suppose, that I have, over the course of the last decade or so, gradually severed most of the ties and friendships that I did have. I have ensured that I develop friendships with very busy people, who will have little time for me. If they can live an inconvenient travelling distance away, so much the better. I can ensure that I don't answer the phone "because of the children". That I have children makes seeing people difficult anyway, as I don't have reliable childcare, and who wants to spend a boring evening at my house, waiting for my kids to go to sleep?

I don't ask for help because I see it as somehow betraying my children. It's not their fault that I'm not up to scratch, not their fault that I'm not good enough for them. I wouldn't want to admit that, on days like today, when Midget 2 has done nothing but scream and bite me, when Midget 1 has cried all the way to school whilst hitting me, when I have had to explain to yet another idiot that actually my daughter is disabled and that is why she acts like that, I feel like I am drowning and all I really want, all I really need, is for a big cuddle that lets me sob and be bloody angry, and furious, and scared. Even typing that feels like a betrayal.

But then - tomorrow, maybe in a few days time - it will be a shining day, and I will wonder why I ever put this to paper. On days like today though, when all the worries are crowding in, and I can't see the present only the future, and I can't remember the brilliant times only the sad times - on days like today, I feel vulnerable, worthless and weak, and I wish for the shining times even more so than usual.

Diagnosis : A New Journey

The Lidster is now three and a half. Her speech is significantly delayed. On the emotional, social and play development scales, she is averaging 18-24 months. Her tantrums have not lessened. She has never had a bath without screaming, despite consistent patience and a variety of ways of approaching the event. She hates her head being touched. She covers her ears and screams at loud, sudden noises. She will screw up her eyes and turn away if something scares her, frequently animation. She will take off all of her clothes as they 'hurt'. She responds very badly to the word 'no'. She seems to have no grasp of right or wrong. She has no time for other children, preferring adult company. She refuses to use the toilet, or the potty, and as such toilet training just isn't happening as my nerves can no longer take it. She is insistent on a very precise way of playing, which includes categorising her toys by shape, size, colour and type.

It is becoming quite, quite clear that she is not just the cow that I had previously thought she was.

Most siblings of autistic children show similar behaviour patterns to their elder brother or sister, until such a time that they are in an environment with a greater level of neurotypical children. When they are around more neurotypical children, it is supposed, their behaviour and development will fall back within (and I use this word painedly) "normal" guidelines.

Lid's introduction to pre-school, on a daily afternoon basis, has not seen an improvement in her behaviour. If anything, it would appear that some of her foibles have become more noticeable, and I am advised that at school nursery she does not make eye contact.

With girls, Autistic Spectrum Disorders are particularly difficult to diagnose due to their superior ability to mimic "caring" roles. This is to such a degree that often, those on the more highly functioning end of the spectrum, may not be diagnosed at all.

Now, after much nagging on my part, (not having a health visitor hasn't helped, nor has the fact that my previous health visitor was convinced that I was 'imagining it') she is scheduled to start the rounds of speech and language therapy, educational psychologists, and SENCO assessments.

Why it has taken so long for us to get to here I do not know. It is a cause of great anxiety on my part that she has had to suffer my lack of understanding for the time I was convinced that she was merely naughty. I am unable to forgive myself for the impact that the delay in achieving diagnosis may have done to her, especially for my lack of patience, more so when compared to the almost unending patience I display with her elder, already diagnosed, brother.

So - here we are on a brand new journey. I am, I think, accepting that she will be diagnosed as being on the spectrum, but then it has been a slow realisation, helped by research. It is, as always, others that find it so hard to accept. I hope that I am up to the job of protecting and helping her, and ensuring that she is now my autistic little cow rather than my naughty little cow. Wish us luck.