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Saturday, 30 October 2010

Short Fuse

I have often been told that I am in possession of a very short fuse. My answer? "Hey, I'm five foot tall, everything about me is short". Joking aside (yes, it was a joke) I guess I have to agree that I am a volatile person, someone said I was volcanic, but I prefer to be thought of as a spitfire....quick to verbally fight back. I don't bear grudges and I don't sulk.Oh, and usually, once my fire has been spat? I instantly regret it. That stupid little voice in my head tells me that "I shouldn't have said that" which is fine, but why didn't the stupid little voice pipe up a second earlier and say "please don't say that"? Be a lot less trouble all round! Before you say it, I'm already, I can't think before I speak, my mouth is hot-wired to my emotions!

The point of all this?
Well, apart from the instant regret bit, I could easily have been writing about Daisy. She is fiesty, stroppy and spits fire jus' like her momma! People say "oh, well, she's a redhead", not sure what I am meant to do with that nugget! Redheads are genetically programmed to be mouthy? So if she was blonde it would be different? Oh, no hang on....I'm more blonde than red, and I'm as mouthy as hell! it nature? Or nurture? Thinking about myself again, I see women in my family (particularly from the paternal side) who are strong and fiesty and stand up for themselves. That's nature. I have inherited this...have I passed it on to the next generation?

But, regrettably, Daisy has witnessed me spitting fire at various people in the last 8 years, so has she learned that it's the way to go? Have I nurtured this in her?

This could be problematic. Daisy has the ASD-ism of saying whatever she wants. She lacks the ability to understand that telling someone they are fat probably isn't a terribly good idea. She sees it: she says it. She means no malice, she just doesn't see that she shouldn't say it. Add that to the short fuse, and we have the potential for disaster! She doesn't have the stupid little voice to hold her back. She doesn't have the social skills to know that sometimes things should just be said inside our heads.  I am fully aware that some things are best left unsaid, but when I'm spitting fire? It's every man for himself, as several readers of this blog know only too well!

So how do I impart this rather important skill to Daisy? Must I try and change me to accommodate ASD? I am not sure I can do that. I'm not sure I can fight nature. I'm not sure I want to. Social stories are an answer, but not THE answer. Maybe, I should step back and see what happens?  There is nothing wrong with being a strong personality, although nobody wants over-bearing!

I think it is a question of watch this space.

Friday, 29 October 2010

Oh, not Hallowe'en again!'s nearly Hallowe'en....2 days to go. I know this because Daisy has been counting down the days all week. Every morning, as soon as she wakes up she tells me in a very excited voice that it's this many days to  Hallowe'en. I'm thrilled that she is actually managing to keep count of something....but why does it have to be Hallowe'en???? Why can't it be our Home Ed trip out next week? Or something I can get enthusiastic about?

See, the thing is...I don't "do" Hallowe'en. I am from a generation that didn't "Trick or Treat", that was something they did in the US, but not here.

Call me a rude name here if you will, but I struggle with the whole concept of "Trick or Treat". I spend 364 days of the year telling Daisy "don't talk to strangers" and "don't take sweets from people you don't know" and yet, on October 31st, after a year of me pecking her head over "stranger danger", I am expected to allow her to knock on peoples' doors and demand goodies with menaces. Sorry, but I don't get that.

I know it's different in the US and it's much more "partyfied" but here...frankly it's not. Here it's bigger kids banging on the door and grabbing as many e-number stuffed sweeties as their greedy little paws can get! They expect to get something, not because they are malicious little buggers who are plotting to break all the windows on my car, but just because they feel it is their right.

Well, this year I will not be dishing out expensive sweeties that the little tikes will eat them selves silly and then be sick over. I have a plan......

This year...tomorrow in fact, we will be baking cookies. Bat shaped, hat shaped, pumpkin shaped anything you like shaped. No rushing to the shops to buy sweeties at ridiculous prices. Just good ole fashioned home bakin'. I look forward to seeing how many of the sugar-rush induced little darlings show their disappointment!

Oh, and for the record, I will be taking her to ours neighbours houses, the neighbours we know well. Yes she will be costumed. As a cat. As will I. As I have been informed only seconds ago: "every cat needs a witch, mummy".

Sunday, 17 October 2010

Nocturnal Activities

I am constantly being told that Daisy needs to socialise.

Yep. I agree with this. Well, in theory anyway. In practise it is just a little trickier.

For example...we went to a play-park. We had the place to ourselves and Daisy was happily playing and I wasn't really paying attention to the noises she was making, just enjoying watching her play and run around to let off some steam.

A family of about 4 kids joined us with their mother, and it was then that I started paying attention. I always do. I get very protective of her and nearly-worry about others being mean to her.

Daisy reverted to being an animal. I knew she would, it's anxiety and fear of the unpredictable but they don't know that. All they saw was this odd kid who to their eyes was pretending to be a dog. Except that she took it to the nth degree and even sat on her haunches and panted. Not good. They took the pi.......they ridiculed her. Laughed at her. Noticed she was "different" and used that against her. Upset her.

She didn't understand their comments or their attitude towards her. She constantly asked me why those children were nasty to her, told me how they weren't her friends and that she never wanted to see them again. With added tears. She simply doesn't understand. No matter how hard I try or how many times I say it, she just doesn't understand. Other children see her differences and are mean to her. She has been verbally abused, pushed over, name it, other people's kids have done it.

So....this is socialising??? Well, you can poke it! I've had enough of dragging my crying daughter away from other people's mean kids. I have had enough of trying to explain to plainly ignorant parents that my daughter isn't a freak, she is autistic. She is a human being with thoughts and feelings just like them. Only hers are far more magnified.

So, now we go out at night! We have become moths and night owls. Dwellers of twilight.....lawks I sound like  one of those endless vampire series on TV! But we have. I feel I have been left with no choice due to other people and their total ignorance.

Thing is...the nocturnal trips are working. We've been out twice now, which I admit isn't a huge amount, but to see her is just remarkable. She stays nearer to me....she will always go on ahead, like the scouting party, but she stays safe. I don't have to drag her kicking and screaming back to the car  (I always thought that the phrase "kicking and screaming" was just a collection of words but no, it really does happen). She is generally calmer and is nice to be around.

Yes, I agree that this is far from ideal. She should be mixing with her peers. But when her peers are mean to her? What then? I don't want to advertise that she is autistic and have them treat her like a leper, but if I don't then they treat her like a freak! Rock and Hard Place.

So, I will continue to take her to the beach at night time, visit the play park when only the toddlers are about, 'cause they love her and she is good with smaller children, and visit zoos and museums when there are as few people about as possible. She is happier then. She deserves that peace of mind.

We cannot avoid places where her peers will be, and nor should we, but I am no longer going to go out of my way to enforce some kind of socialising regime....I will do what I think is right for Daisy, and if CAMHS and Social Workers don't like that, then tough! They can offer alternatives like a placement in a Special Needs Unit for Autistic children so that she CAN mix with her peers without being made to feel like a freak, but until then.....we do this MY way!

Tuesday, 12 October 2010

There's a dog in the room

Today is a day of forward-looking.

I have spent too much time just lately emotionally knackered by things that I can't alter. I got to the point where I would just sit. And cry. And be utterly useless to all and sundry.

Winston Churchill likened depression (for that is what I have been suffering) to a black dog. Probably a Labrador, to my mind! I can relate to that analogy.

BUT.....with the assistance of bloke, I have gathered my skirts and heaved my aching soul back into a vaguely upright position and am back.

I have no choice but to be back. Daisy needs me. I need me. So here I am, peeping over the parapet to see who I should allow into the castle and who gets the barrel of burning oil tipped over them.

Short list for the oil so far:
Social Workers for failing to do what CAMHS and I requested.

Behavioural Specialist for failing to do anything at all!

See, the thing with Daisy is that she reverts and regresses. Always has. She becomes an animal. Usually (and here's a very tenuous link) a dog. She barks, whines, yelps and whimpers. Oh, and she bites. Hard.

Now, given that information alone, you'd think that a BS (no, I can't be bothered to write it out again!) would be interested in helping me. Us. But, no. Not a chance. I got a letter yesterday from the BS telling me that she was leaving it in the hands of the Social Worker. The same SW who completely failed to find my very easy to find house. The SW who was calling my mobile whilst knocking at my door, only it wasn't MY door.

I have an 8 year old child who is diagnosed with autism/PDA/etc and she is violent, abusive, aggressive and thinks she's a Dalmatian. Just explain to me which part of that statement is not interesting to a BS???

Why am I forced to ask for help, only to be told that I can't have it? Why, must I fight for things? Is there a huge demand on the BS's time and energy? Is she not a dog-lover? How, and this is the most important one, can she assess our situation on ONE line on a form filled out by CAMHS and decide that we aren't helpable. Helpable. I have said it twice, so now it is officially a new word. I am beaten and kicked and bitten and scratched and verbally abused by MY CHILD and yet she doesn't need help? Well, I bloody well do!

As Daisy ages, so do I.
As Daisy gets stronger, I get weaker.
She is going to be taller than me.
She is going to physically hurt me badly enough to end up at A and E.
What on earth do I tell them?

I walked into a door? I fell down the stairs? All those lines that battered women use?

Or do I tell them that my child did this to me?
There is a very high percentage of PDA people who are in secure units...some for this very reason. Society, it seems does not know how to deal with a PDA person, so true to form, they are locked away. We used to do this to unmarried pregnant women, and epileptics and anyone else that society in general couldn't deal with. I thought that the Dickensian approach had died out, but it is still alive and kicking. Where is the compassion? The violence is caused by fear and anxiety and frustration. It's not malicious, it's not even remembered after the event. It's lashing out. It's not a reason to be institutionalised. Yet, I feel that I am being left to travel down that road, as my concerns and requests are being not ignored, but are being allowed to go unheeded.

Tomorrow, I need to make some phone calls.

Friday, 1 October 2010


The Collins English Dictionary defines insecure as:

                       "anxious or afraid; not confident or certain" fitting to a PDA child like Daisy. A perfect description of her perspective on the world.

     I am a very insecure perceived wrong word or action, and off I go down the slippery slope, bumping into jealousy and crashing into mistrust and running headlong into accusation before we all land in a heap of ashamed. But that is NOT the same kind of insecurity that Daisy suffers from. I feel quite, well, ashamed of my petty insecurities when I hold them up for inspection next to hers. They are paltry and inconsequential and really quite pathetic and all stem from damaged trust.

     Hers, on the other hand are real and massive and stem from an inability to understand how the world around her actually works. She is anxious and afraid of almost everything. Me? I get paranoid when the mobile phone doesn't go beep when I think it should. Hardly the same thing at all, is it? insecurities may hold the key to understanding hers much more than I ever have before. By examining very recent personal feelings (ouch!) I have an inkling of what it must be like for her. That awful sinking feeling, the heart racing a bit too much in a not-very-nice way, the dread and the need to know but without having to ask. It's all there, only in Daisy's case it is horribly magnified.

     I have always tried to forewarn Daisy of upcoming events, but they have to be timed right or she gets hopelessly over-excited and and worries and talks endlessly about it....for DAYS if I get the timing seriously wrong. I have made what I now know to be a huge error in assuming that it's part excitement part apprehension, it isn't; it's out and out fear. Total fear of the unknown and the unpredictable.

     My beautiful, funny crazy Daisy, I owe you a massive apology. I am so sorry that it has taken me so long to actually get inside your head and understand it just a bit. By looking at MY feelings I can finally understand yours. Please forgive me, baby, and rest assured that now I have this understanding I am never letting it go. You mean the absolute world to me and you deserve the best from me.