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Sunday, 20 February 2011

Throw Another Shrimp On The Barbie!


My Daisy has gone multi-lingual and is now fluent in Australian!

How did this transformation occur?

Well, it was something to do with a cartoon on TV that I was happily zoning out of (bad mommy!) I was happily catching mice (MouseHunt, a fantastic game from HitGrab on FaceBook...go try it. Not NOW, in a minute when you've got to the bottom. There'll be a reminder in case you forget!) when Daisy starts "boinging" across the room.

"Look Mummy" she yells gleefully down my ear "I'm a kangaroo!"
"But you haven't got a pouch" said I, half-deaf and clearly suffering from some temporary brain injury.
"Yes I have" says she, stretching the waistband of her leggings to near breaking point. "Look"
"Oh, yes. So you have!"
Seconds later she boings back grinning in the way that only kangaroo-girl can, and happily announces:
"Look Mummy, I've got a joey!"
For a split second I was scared to look, the elastic on those leggings really does stretch a long way, and I couldn't see the cat anywhere, but I braced myself and yes......there really WAS a joey down the front of her leggings.

So...picture the 9 year old kangaroo daughter, boinging up and down the living room, complete with joey, bombarding me with questions:
"What do Australians eat, Mummy?"
Boinging stops....then starts again.
"What else do they eat? When they can't get kangaroo?"
"English children"
"Mummmmmmmeeeeeeee! They don't eat people! What do they wear on their heads? Do they wear cowboy hats?"
"They wear hats with corks tied to the brim to keep the flies away"
"Oh, I saw that in Bob The Builder. What else do they eat in Australia?"
"Erm....seafood. Shrimps" My knowledge of Aussie gastronomy is sadly lacking.
"Oh, I love seafood. The dog likes to eat the eyes, but I just like the body"
"Oh, that's good then. No waste......"
"What pets do they have? Do they have pet dogs? Oh, yes! Dingoes, they have dingoes in Australia. We MUST have an Australia Day. We will have a barbecue and hire a sculptor and he will make a copy of that big rock, the biggest rock in the world in the middle of Australia...what's it called again?"
"Yes, then he can make a copy of joey and make it so that water comes out of it's mouth. Won't that be fun?"
"Erm, yes but where..."
"You must ask all your Australian FaceBook friends to come to our house"
"Isn't it rather a long way?"
"Oh, that's OK, they won't mind. They'll like it here and we have lots of space, and we can have a barbecue, and we will have a sculpture of Ul...Ula...Ullerooo, and joey and his mom will be here and it will be just like home for them. They can play mousehunt on your computer and sleep in your room at night, which is really our day so we have to be quiet in the day because they will be asleep and they will have to be quiet in the night because we will be asleep. Oh, look, Garfield is on now......"
"Oh. Erm...OK then."

Apart from the occasional "G'day" it has gone scarily quiet on the Antipodean front....I think I preferred it when she was a dog. Except that kangaroos don't bark. That is a Good Thing. epic game to drive you nuts, delivered to you from HitGrab via it and you could catch this:
or this:

Worth it for the artwork alone!

Friday, 18 February 2011

What IS this stuff falling from the sky?


On closer inspection I see's bullshit.

Sorry to use a Naughty Word, but sometimes you've gotta call a spade a spade.
And believe me, this stuff is falling by the spadeful.

For the benefit of anyone who doesn't already know......and where the hell have you been, might I ask?! beautiful daughter aka Daisy is autistic. With whistles and bells on. When she was diagnosed I was handed a sheet of paper with a list of characteristics on it. I mistakenly assumed that I was reading about Daisy's condition, it was only when the Paed. made a comment that I realised that I was reading about my daughter. She ticks every single box....and then some that aren't even on the list! She has Pathological Demand Avoidance Syndrome (a shade on the Autistic Spectrum). She has sensory issues. She suffers from Separation Anxiety.  She also presents many characteristics of MCDD (Multiple Complex Developmental Disorder) but her autism overlaps and hides it in a clinical setting. I am not too bothered by this...we have enough labels attached to us already, who needs another one?

So, it is clear then, that Daisy isn't quite NT (Neuro-logically Typical)?
But, and this is the important bit, her disabilities are hidden.

If you saw a photograph of Daisy you wouldn't know she was different.

If you saw Daisy happy and playing, you would think she was just another 9 year old.

If you saw Daisy kick and bite and scratch and verbally abuse me, what would you think? That she is disabled?
Or just spoilt and naughty?

If you saw Daisy weep with frustration, what would you think?
That she is disabled?
Or just a brat who can't get her own way?

If you saw Daisy run into the path of a car, what would you think?
That she is disabled?
Or just the thoughtless child of a careless mother?

If you saw Daisy in a wheelchair, what would you think?
That she is disabled.

It's so easy to label children as "naughty" or "wilful" but how many of those "spoilt brats" having a tantrum in the supermarket are actually autistic children suffering from anxiety levels we can only wonder at? The answer to that question lies with the person (funnily enough, quite often the mother) with the child. Watch her. Listen to her. She will not lose her cool; she knows it's pointless. She will not take any notice of you; for her (at that moment) you are not there, she is focusing on her child and it's awe-inspiring anxiety. She will not attempt to argue with her child; she knows that cannot help either the situation or the child. She will simply be the whipping boy of her child's terrifying anxiety and will take everything her child throws at her until the moment has passed. Then she will simply carry on as though nothing has happened. If she does any or all of these things, then try and catch her eye; smile at her, wink at her, nod your head at her, run impulsively to the flower stall and buy her the biggest bunch of flowers in the store but please, do something! Don't assume anything, just let her know that you think she's amazing and tolerant and kind and loving and everything that she might doubt she is. Because she is doing an incredibly hard and thankless job simply because she loves someone enough.

The life of a full-time carer is tough. We are paid a pittance and save this country millions and millions of pounds every single year. Yet, there are plans afoot to make it even harder to raise a disabled child.

Our glorious leaders (at the time of writing I can blame David Cameron) have decided it is time to reform the benefits system in "this green and pleasant land" of ours. The universally detested DLA application form is to be scrapped and replaced by....and I never thought I'd say this...something worse!  Not a form this time, but a face-to-face assessment. Anyone who has even the remotest connection with an ASD person knows that this is NOT going to work. Period.
One of the key ingredients in the ASD mix is "poor social skills" an "inability to interact". Yet we are expected to push forward our ASD people and hold them up for inspection.
Are you disabled enough, ASD person? You don't look it.
You can speak, ASD person.
You have no problems with mobility, ASD person.
You can read and write, ASD person.
You can dress yourself and go to the loo, ASD person.
You seem normal enough to me, ASD person.
Now go away and let me deal with someone who really needs my help.

But what about the disabling anxiety?
The no understanding of cause and effect?
The fact that ASD people can be a danger to themselves and others?
The fact that being able to walk doesn't make you safe when you don't understand that you can't walk in the road.
What about the fact that you are housebound if you don't have a car because public transport is unsafe for some ASD people.
The crippling fear of being anxious about everything?

Hidden disabilities are just as cruel and painful as visible ones, but by their very nature it is very hard to assess them. Especially with an ASD person. Many ASD people put on an "act" to appear normal for a period of time, but it is always unsustainable and always results in a massive melt-down, usually when the ASD person is at home or with a person that they feel utterly comfortable with.

This face-to-face assessment will damage so many ASD people and their families.

Daisy and I were granted "indefinite DLA" last year as it was finally recognised that autism is for life. Looks like I am going to have to fight that fight again.....

This reform is wrong for US, for anyone who cares for an ASD person. It is one-sided and oblivious to the needs of the very people it is supposedly designed to help.

This bullshit needs to be re-directed to my rose bushes, at least there it will do some good.

Tuesday, 15 February 2011

Around We Go Again.

Daisy and I appear to have inadvertently and most unwillingly joined the Social Services Carousel.

Yes, we have another visit from a Social Worker tomorrow.

Yes, not my fault again.

Yes, they have been informed that Daisy is at risk.

Is this sounding familiar?

Yes. Me too.

This time though, it isn't due to a craven act of spitefulness (that IS a real word, right?)
It's due to an Act of Supreme Stupidity and a chain of events that I could neither predict nor control.

The fault lies NOT with me, but with 2 supposedly grown men who should know better, and My Lady Alcohol who had a very intense effect of one of the aforementioned grown men, hereafter referred to as Dick 1 and Dick 2.

Had I been able to predict that Dick 1 would call Dick 2 and that Dick 2 would antagonise Dick 1 and spin him a yarn of pure unaldulterated fabrication, I would have been able to intervene.

Had I been able to intervene, then I would have been spared the inconvenience of having a wrecked kitchen and the frankly tiresome chore of having to clean up broken china, plants, glass etc etc etc

Had I been spared the annoyance of having my kitchen broken, I would never have needed to call the police.

Had I known how my day was going to pan out, I would probably have just stayed under the duvet.

Oh, to be able to predict the future......

So, because I called the police, I am now subject to another investigation into whether Daisy is at risk.

Was Daisy scared? 
Not especially, no. Because I made it so that she wasn't.
Was Daisy worried about the police?
No. She WAS a bit worried that they didn't want the jaffa cakes she was offering on a plate though. She thought they must be hungry.
Was I concerned about our safety?
I did call the police......just in case. Pissed-up people do the strangest things.

So, the police came and removed Dick 1 from my house. NOT arrested. Removed. I answered all their questions and was completely calm throughout the whole incident. I was not injured and neither was Daisy. I never felt that Daisy was at risk at any stage. Me, possibly, but not Daisy.

Yes, it's right that Daisy should be safe in her own home. We all should. But it's me going through the mill again, not Dick 2 and most certainly NOT Dick 1. Yet it isn't my doing. But I have to be subjected to yet another investigation while the instigators dance around the countryside with no thought or concern for the consequences of their actions. How is this right?

I couldn't know what Dick 1 was going to do.
I had no idea that Dick 2 would do as he did.

I would never, could never put Daisy in a situation like that. But I didn't make it or cause it. I just have to live with the fall out.

How is this fair?

I'm not wallowing in self-pity, really I'm not, but I'm not sleeping. I'm not eating. I'm angry and feel utterly betrayed by someone who is supposed to care about me. Makes you wonder how he treats people he doesn't have feelings for...

Both Dick 1 and Dick 2 have apologised. Big deal. That makes it OK then.

All back to normal.

Well, actually, no.

This is not my normal. it will never be my normal.

Stressed, depressed, betrayed, gut-wrenchingly hurt and so angry I could burst is not my normal.

I want.....reparation. Not revenge, but "sorry" doesn't even come close to sorting this out. Initially, I was calm and controlled and not forgiving, but much more understanding. As time passes, instead of letting it go, it is festering and can only get worse as there is no outlet for it. I can't take it out on Dick 1 and Dick 2 because they don't care. If they did, they would have offered their support for tomorrow. I may not have accepted, but they could have damn well offered. But no. They had their little tiff, my stuff gets broken, the police get called and it's all over for them. For me it's just the beginning. I have to pick up the pieces, quite literally, and prove my beautiful Daisy is safe with me.

I know, that tomorrow will be OK. I know it because the alternative is just too dreadful to contemplate....