.....additional

     After spending a fabulous day together yesterday having a "girly shop-fest", exploring our new surroundings and finishing up in a Victorian Tea Room eating toasted crumpets....


.....Daisy ventured out in to the Back Street.


     Less than 5 minutes later, she returned sobbing as they had all immediately started calling her horrible names and telling her they were not her friends.


     In Daisy's own words:


     "This was the best day ever, and now it's turned into the worst."


     I have no more to say.

Back in the Saddle....

     OK.....it's been a while since my last blog.


     I'd love to report that things in the garden are rosy, but I cannot tell a lie.


     it isn't. It's really quite awful.


     The backstreet politics run along seemingly unabated. Maybe this is just how NT kids are. I don't know. Maybe I am some kind of expectation freak who is constantly astonished by the behaviour of NT kids, but I was one for a while, and I don't remember anyone being on the receiving end of such wildly fluctuating behaviour. Bullying, yes, because someone was fat or black or Chinese or wore glasses but it was dished out and taken (although it was painful at the time, and I leave it up to you to decide whether Yours Truly is fat, black, Chinese or Four Eyes) and then dismissed. There was always someone else to mock or ridicule and the fat, black, Chinese and short-sighted were left alone in favour of the next new victim.


     I KNOW kids are fickle and shallow, as previously noted I was one myself once, but to me....and I really am trying to NOT be an "autistic mom" here....it seems hugely over the top. One minute they are all clambering over the garden gate to get Daisy out of the house to play, and the next she is running home sobbing because they have all turned against her for reasons she cannot comprehend. To be fair (or possibly unfair, it's all about your view point) I don't understand it either! Only on Sunday, she ran home sobbing because some boy or another had brought up the Biting Incident (again), and demanded to know why she had 
bitten Teasel. Again. Daisy was distraught and then, to add to it, her toys (which she insists on taking out with her) were thrown all over the place causing her even more distress. See, they aren't toys to her. They exist in her reality as real, alive creatures. They feel. They speak. They live, and they can die.


     As I have said in a previous post, Teasel's mother didn't run to our house breathing fire and retribution. She did nothing. At least as far as I can see. She never banned Teasel from playing with Daisy, and Daisy and Teasel get along fine. At least they do, just as long as one of the others doesn't "fall out" with Daisy. Then they all turn against her and even she doesn't know why.


     How do I deal with this??? I am at a bit of a loss. The Head Gardener and I both advise her that she needs to be assertive and just tell the troublemaker of the day to mind their own business. (Teasel has been apologised to and he doesn't appear to have a problem with it, so why should anyone else?) 


     Daisy cannot do this, incidentally. She doesn't have the courage or the confidence to stand up for herself. I cannot fight this battle for her, as it wouldn't happen if I were there, I cannot intervene at the time. I can only support her and hug her when she cries like it hurts real bad.....


     


     


     

Being Autistic Can Really Suck.....

     There's trouble in the flower garden.....


     Daisy and I recently transplanted ourselves to a new location and a new start. After all the problems at the beginning of this year, I simply couldn't stay where I was; the thorns were too troublesome and the memories and constant reminders of the past....well, I didn't want to be constantly reminded.


     So, we discussed it and we both agreed that transplanting was a good idea. I knew it would be tough on Daisy but I felt that it would be tougher if we had stayed where we were.


     So we up-rooted ourselves and travelled. It was tough, and we wilted a bit and wondered if we were really doing the right thing, but the dye was cast and we both rose to the challenge.


     If I had been asked "how's everything going?" on Monday of this week, I would have smiled and said that it was all going perfectly, our new life was going exactly in the direction we both wanted and although there will always be challenges with an Autistic child, they aren't new or different or anything we haven't faced before.....


     If you had asked me on Tuesday, however, I would not have smiled because it has, in the space of 24 hours, gone a bit runny.


     Daisy has made friends with the local children. She went for tea at theirs, we fed them at ours.....just like it should be. Just like NT children. My Daisy was doing NT stuff with NT kids.....happy me! Happy Daisy. She was even relaxed enough to tell them (and parents of her choice) that "I have Autism". How, I thought to myself can it get any better. The children and the parents seemed to accept her and told me how nice she is.....


     How quickly the seeds of unwanted plants have spread to my Garden of Eden.  I find to my horror that the local children are now, seemingly, going out of their way to mercilessly bully my poor little Daisy.


     Her crime? Well, I admit she was kind of wrong, in that she bit a boy younger than her. He and an older boy, for reasons unknown to me, were pinning her down. Unable to get away, she reverted to what she always does when panic-stricken and restrained. She bit. She does it to me every time I have to keep her safe. 


     The moral dilemma that some might see here, is that maybe I should have mentioned that Daisy is violent and aggressive when she feels "cornered", but how the Hell could I have known what would happen? I am also loathe to advertise the bad bits of her Autism as, let's face it, it's going to colour someone else's opinion of her......


     Anyhow....the next day she goes out to play as usual to be confronted with out and out hostility by almost all the local children that she played with. They were rude and mildly aggressive to her and deeply hostile. They used words against her that children should certainly not use against one another.


     This behaviour has continued every day this week. Daisy is now reluctant to go out and play, and when she does pluck up the nerve, she returns in tears...she is unhappy about going out and really needs me with her....not the steps towards independence that I was hoping for.


     It has been witnessed that an older boy seemed to be approaching her with the intention of scaring her....but he was prevented by the arrival of the Head Gardener who intervened merely by his presence. 


     I cannot approach the parents of the children as I do not know them, and Daisy does not know where they live, and although I do believe her, I have to have proof that a particular child is behaving in a hostile/nasty way to her. I don't want to accuse someone of something they haven't done....


     I cannot quite comprehend the severity of the hostility of the children towards Daisy. I know that she shouldn't have bitten, but she shouldn't have been pinned down, and the parent of the bitten child should have come to me (they all know my Daisy; once seen never forgotten and all the children know where she lives!) and discussed it with me. They didn't. 


     Now we have some weird Lord of the Flies thing going on here.....OK, that might be a bit over the top, but the children have seemingly taken the law into their own hands and are meting out their own type of punishment. They actively seek her out to taunt her and tell her to "fuck off". Yet she is not approaching them......


     It is hard to watch her learn this very painful lesson. She (as I) does not think that the punishment fits the crime but is not allowed to offer any kind of reparation. 


     Is this how it is with NT children? Her cuddlies who are real as you or I to her have been taken from her and "hurt", she has "accidently-on-purpose" been run into by a pushbike and her feelings have been severely damaged along with her very fragile self-confidence.


     Well, we are both a bit fed-up with it. If this is what mixing with NT children are like, then I think we need to reconsider who we make friends with.

"Some kind of Syndrome"

Yet again I find myself "tangled up" with the SS.

Ooops, that would be Social Services.....Sorry, I'm sure!

I am becoming an old hand at this.....deeply narked that, yet again, I have to hold my life up for inspection and justify my day-to-day existance to a stranger, but (now) quite used to the unwanted attention enough to see it for what it is.

However, today I hit a new level of irritation with the SS.
See, because I have moved house, i am now dealing with a new SS person. Not a problem in itself, I quite enjoy the change in them as they walk into the house all abrupt and hard-faced and leave smiling and much softer than when they arrived.
The new level was hit quite early on in the whole episode when the SW commented that "it has been suggested that she (Daisy) has some kind of Syndrome".

Erm......
WHAT????????

I am still trying to decide which annoyed me more, the use of the word "suggestion" or the casuality of the phrase "some kind of Syndrome".

She has a proper diagnosis of PDA Syndrome, it's not a "suggestion" from the team of professionals who assessed her over 2 days. I have her written report which contains a full diagnosis and a prognosis which screams that my Daisy will never be able to live independently IN HER ENTIRE LIFE.

It is not "some kind of Syndrome" and to use those words belittles and demeans Daisy, me, the people who work their bums off every day dealing with PDA persons whether they are professionals or parents.

Is it any wonder that me and all the parents of PDA children (be they children or adults) have to shout really loudly to even get people to LOOK in our direction, never mind actually help us.

Why the hell do "professional" bodies share information that has been cleansed? Why bother to share the information if the most important part is missing?

So, I am gonna say it: loud and proud:

MY DAUGHTER HAS A RARE, PERVASIVE AND DEBILITATING FORM OF AUTISM KNOWN AS PATHOLOGICAL DEMAND AVOIDANCE.

I am willing and prepared to share this information with anyone who will stand still long enough for me to say it.....so why can't the people who are *supposed* to have Daisy's best interests at heart doing the same thing?
Isn't the sharing of information what they are all about?
Or doesn't it make for a very interesting case?

So unimpressed.

Throw Another Shrimp On The Barbie!

G'day!

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 scene...my 9 year old kangaroo daughter, boinging up and down the living room, complete with joey, bombarding me with questions:
"What do Australians eat, Mummy?"
"Kangaroo"
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?"
"Uluru"
"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.


MouseHunt.....an epic game to drive you nuts, delivered to you from HitGrab via Facebook....play it and you could catch this:

or this:

Worth it for the artwork alone!

What IS this stuff falling from the sky?

....Ah-Ha!

On closer inspection I see it.....it'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?!.....my 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.

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....

"How Long Does Sorry Really Last?

Is it tattooed upon your heart?"***

Or does it expire once it has entered your ears?

Elton John once sang about "sorry", he claimed that it was the "hardest word", but I beg to differ.

"Sorry" is incredibly easy to say. We say it all the time, and often quite needlessly. It has crept in the English language as an alternative for "pardon", what is wrong with "pardon"? Although a quick delve into "Collins English Dictionary" informs me that "pardon vb (tr)  1 to excuse or forgive (a person) for (an offence, mistake, etc): to pardon someone: to pardon a fault" so do we say "pardon" in forgiveness for the person we didn't quite hear? "Oh, I forgive you for mumbling into your beard, please repeat your self". Actually, "sorry I didn't quite catch that as you were mumbling into your beard, please repeat yourself" fits much more comfortably than "pardon".

Sorry,I think I am beginning to digress....

Begging your pardon, I will return to the word in hand....:"sorry".

It is an apology, a form of condolence and a word suggesting pity.

It is the apology I am interested in.

Daisy doesn't get "sorry". She says it, but I think she has no real idea what it means any more than I understand Quantum Physics. I know the words, but they have no real meaning to me, on the face of it, they are incomprehensible.

Daisy is the same. She will apologise, but 9 times out of 10 she will have to prompted and reminded that what she did was wrong and an apology is necessary. The word is meaningless to her.

When she has a violent and abusive "melt-down", she has absolutely NO idea what has happened and what she has done. If she sees the bruises and scratches, she will ask me how I hurt myself. It's as if she has some kind of mental shutdown or blackout. I no longer expect remorse or regret, they are emotions that are currently alien to her. Emotions can't be learnt, you can learn how to deal with them but you can't acquire them through study or from a book.


I don't even know if I want her to apologise. Is it right to even expect an apology for an act that is committed under the fog of fear and rage and anxiety? She is autistic, I think it comes with the territory. She doesn't operate out of spite, she doesn't understand that either she is just near-terminally frustrated. She doesn't possess the bit that controls, well, self-control. Her emotions are completely uncontrollable. Maybe we can learn together how to corral them into something a little less explosive and a lot less painful, but with a child who is approximately half her true emotional age, it is a struggle! I am currently dealing with a child with an emotional age of 4 and a bit. It's challenging, to say the least. Especially when you know that Daisy is very, very smart and it is easy to forget her emotional age when she is advanced in so many other areas of her development.

But I think "sorry" has become a sticking plaster...a bit of a cop-out. It's almost a non-word. Like "nice" before it, it's in grave danger of becoming a nonentity. it is losing it's meaning. 
For me to say "sorry" I have to have the associated feelings, at least the feelings I personally associate with the word "sorry". I know when I have made a mistake, that I need to apologise, with feeling. I have to feel and the recipient of my apology has to feel it too. I have to apologise and then explain why! Otherwise it's just words. Empty words that mean nothing, and you know you simply just know that you are going to hear "sorry" again for the same set of reasons. With added hurt. If you are truly sorry then why would you go off and do the same thing again? Because you don't care enough about the person you are hurting. Where is the remorse? The regret? How can you do something that you know is going to hurt someone innocent? Because you can simply apply the band aid marked "sorry" and expect everything to just sail on as normal. Because you are selfish and think only of things from your perspective and not anyone that is going to get hurt in the process. But to me, it means nothing if the feelings behind it are not genuine.


Maybe Daisy and me are on the opposite ends of our own spectrum. She doesn't understand the sentiment of "sorry" and I am a sentimental apologist of Olympic standard!


So, to answer the original question.....for me, sorry lasts forever. MY sorries last forever. If I make a mistake and need to apologise then I do, and I am a wreck until I get the "sorry" said and out into the open. If I make the same mistake again, then I am distraught until I can apologise. That is not to say that I beg forgiveness, for I don't. For me, the apology is enough, I have said it and felt it, it fits within the confines of the Golden Rule (it happened; it passed; move on) and that is that.


if anyone ever wants to drive me crazy? Make it so I can't apologise....I'll be a drooling wreck in days!


***More pilfering, this time from Heaton/Rotheray of The Beautiful South with "How Long's A Tear take To Dry?"

Get Out Of My Pigeon Hole!

Every person on this planet has, at sometime in their life, been poked into a pigeon hole.
 
You're a single parent?
Pigeon holed as (depending on your age) "loose" with the added stigma of "scrounger" if you happen to have to scrape a living on state benefits.

You have blonde hair?
You're stupid then, and we can mock you.

You have red hair?
You are clearly some kind of weird retard and we can mock you and be so grateful that we aren't "ginger". (I hate, loathe and detest the word "ginger", by the way!)

My children would *never* behave like that. Why don't you give her a smack?
You are entirely to blame for your child's behaviour, go beat her.


All of the above apply to both Daisy and I.
Along with many, many others.


But it is the last one that has provoked this entry.

How lucky you are not to have "badly-behaved" children. Are they so well-behaved because they live in fear of being beaten? 
Well, I say, LOUD AND PROUD, that I am the lucky one! For I have Daisy. You do not!


If my child was physically disabled you would look at me in a different light. If you looked at me at all, it would probably be with pity tinged with relief. "There but for the Grace of God..." But you look at me with scorn instead, but you know what?? I believe that my Daisy IS physically disabled. Her autism is debilitating. It prevents her doing just as many things in life that a flight of stairs prevents and impedes the progress of a wheelchair user. It renders her physically incapable of doing all sorts of things that other children take for granted. It creates the most excruciating anxiety that mentally cripples her and physically scares her and causes her to engage in "fight or flight". Restrained she will "fight", unrestrained she will run. In exactly the way that a prey animal runs from a predator.


But you look at me, and HAVE to categorize me and Daisy. I am a rubbish mom and she is a brat. Well, good folks....take a second, closer look. I am a mom trying to keep my daughter from debilitating anxiety and she is trying to work with me by focusing on me. It isn't easy and it isn't always successful but if I was that rubbish, why am I constantly reassuring and verbally connecting with Daisy? See? Not only do you see things wrong, but you don't listen either.


I don't regard myself as a bad parent. 


I regard myself as a mommy, dealing with a challenging child. A bright, funny, crazy Daisy.


So don't try and poke me into a hole that I neither fit nor belong in.


And I will try not to categorize you as ignorant.....

School's Out!

Once upon a time there was a beautiful princess.

She lived with her mom and their cat, and every day the princess had to go to school.

At the school was a nasty evil dragon who picked on the princess and made her feel very very sad.

The princess' mom tried to fight the dragon with the armour of reasonable discussion, the sword of understanding and the shield of Autistic Spectrum Disorder. 

The dragon repeatedly failed to listen or understand and so, because dragons are a protected species and therefore you can't kill them, the princess and her mom left the kingdom and lived happily ever after.

Until we met the Behavioural Specialist.

Most definitely NOT a dragon. Or anything evil or nasty. She's very very nice. 


BUT

She has convinced Daisy that school is where she should be. It's all she talks about. I'm convinced she's on some kind of commission rating as she sells it so well!

Daisy is one of those people who wants to fulfil your expectation of them. She is desperate to please...particularly people that she feels are in authority...and tries to say the right things, effectively she says what they want to hear. Then when she can't do it, they question her and make her feel bad about it. Even though she tried her best. So her very fragile self-esteem takes another bashing and I get to pick up the bits. It's not that she is incapable, far from it. She has no real concept of limitations, so in the right hands she could fly. She could do anything, so long as it involves her being the authority figure. Authority figures SET the limits, but if she was in charge? Hell, she could run the world!


But, school and Daisy don't mix.

I don't want to put her through the trauma, but she's now pecking my head over it as the BS has filled her head with schemes and dreams and seems oblivious to Daisy's needs.


One of my Amazing People read a previous blog about Daisy's particular needs and has said that what we need from ANY school is simply not do-able. 


We need a statement, we need full-time 1:1 help and we need it in place before Daisy even arrives at school. This is never going to happen....statementing is hard when the child is in school but when Home Educated? Very nearly but not quite impossible. 1:1 help? full time? Dream. On!


So.....tomorrow I am going to re-double my efforts in making my voice heard. I don't know what the Hell I am meant to do.....chair and megaphone, perhaps??




*********Many many thanks to the team at HitGrab for allowing me to plunder their MouseHunt artwork. 
Mousehunt? It's a game on Facebook.....go play it! You'll love me and it forever!

Dogs

I am in the doldrums.

Maybe I should call the "black dog" Doldrums?

Anyway, whatever, I am in the doldrums.

It's been a really really rubbish week. I'm not going to lie, it has not been pretty, but as I sit here at the end of a horrible week - well, 5 days anyway - I can look back over my shoulder, past the "dog" and sift through the debris. There seems to be an awful lot of it.....

It always starts the same way, I wake up and there's no "dog" in the room. Daisy and me do what we want to do, on Monday it was "Super Mario" on the Wii. We aren't very good because we both collapse into fits of giggles, but we have "the most fun ever", as Daisy puts it! 

Then, that evening after a day of Wii and dancing round my bedroom to "The Beautiful South" it all changes.

One phone call and it all changes.

The "dog" bounds into the room tail wagging and tongue lolling and "whoomph"....down I go.

All because of a damn phone call. 

What makes it worse, is that the reason for the "dog" isn't even MY fault. The person I was on the phone to took a call on a different phone and took it out on me. THEY get a rubbish phone call, and I get to bear the brunt. Enter "Doldrums" stage left.

I know, I know....I shouldn't allow that person to take control of my feelings and emotions, but it's easier said than done, isn't it?

Then the real dog gets into trouble. She's an old dog and a bit lame, but her back leg went dead. Complete paralysis. It was horrible to watch and we tried to help her, but she's an independent hound and doesn't see what's good for her! It seemed to go on for hours and I had the phone number of the vet pre-dialled but happily, this time, it wore off. 

Daisy was....I don't even know what word to use....distraught. Devastated. Terrified that the dog was going to die. Desperate to talk to dog's owner as if somehow that would make it all OK. Bombarding me with questions as to what the vet will do and what will we do with the dog's dead body.  She wouldn't go to sleep as she was so scared of waking up to a dead dog, and when she did finally sleep, she was so restless and ill at ease....it was horrible.

Depressed for 2 days, my daughter roamed the house with no smiles or laughs, just heartsore sighs and tears. Her gorgeous green eyes were pools of sadness and fear. All because of someone else's dog and their reluctance to take responsibility for anything.

Her real name isn't Daisy. I chose that alias for her as she would be a daisy if she were a flower. Tenacious, resilient, petite, beautiful with the happy smiley face that makes everybody feel just a little brighter when they see it.

Except when the situation is beyond my control.
I tried so hard to lighten the mood, even though I was on the floor myself. We always prop each other up, except that this time we were both in the same horrible place at the same time.

The back-lash from the phone call continues on unabated, and the week has got worse culminating in money going missing from my bank account, so I have to cancel my card and wait for the bank to find my missing money. 

BUT.....I am DAMNED if i am going to let someone else upset my daughter any more. I "liked" a FaceBook page which had the title "Hurt me 'cause i can take it, but hurt my child and I will bury you so deep in the woods they will never find you". Well, rest assured I won't be murdering anyone soon, but the sentiment works just fine. I will do all I can to prevent Daisy having a "black dog" of her own, and if that means there have to be changes around the place, then so beit.

This is probably my most disjointed and rambling blog to date, but I type as I think and my thoughts are all over the place.

Thanks for sticking with me thus far, you'll be pleased and relieved to learn that it's over now!

Some People Are Never Satisfied!

We have been spending "quality time" with the BST (Behavioural Specialist Team) just lately....a getting to know you kind of thing.

This is good, it relaxes Daisy and lulls me into a false sense of security. For the BST has a plan up their collective sleeve.

SCHOOL!

It is becoming increasingly clear to me that the BST want Daisy to return to full-time mainstream education. I understand why they want this, as they are thinking of Daisy and her socialising with other children of her own age, but they don't seem to appreciate that Daisy's peer group are a real problem for us.

I have been trying to put into words exactly what PDA is, and I rediscovered this:

http://www.autism.org.uk/about-autism/related-conditions/pda-pathological-demand-avoidance-syndrome.aspx

It's a lot to read, I'll admit....but this is Daisy and it's very hard to find all the right information in the same place at the same time.

I also found this:

http://www.pdacontact.org.uk/noframes/guidelines.shtml

Now...if you have got this far down the page, I am wondering if the same thoughts went through your head as they did through mine.....

....."where the Hell is the school that is prepared to do this for ONE CHILD?"

Daisy is impossible to teach in blocks of 30 minutes, sitting at a table with a group of other children, all focusing on teacher or whiteboard...she cannot physically do this. She fidgets, she wriggles, she is highly disruptive to any other child who is NT (Neuro-logically Typical, i.e. non-autistic) and she has to focus on something else in order to absorb the information that you actually want her to take in. Teaching Daisy is very much like talking to yourself. She has relatively good eye contact (except when she's PDA-ing) if you ask her to look because she needs to see to understand, but otherwise? Only if she wants to. If you try and *make* her then you've *lost* her. She'll just PDA because she can't not. Daisy is not like any other SEN (Special Educational Needs) child. We have come into contact with a few professionals who have taught autistic children, and PDA is yet another colour on the Autistic Spectrum, yet the teaching methods for Autistic and AS children are a pole apart from the methods required for a PDA child. They are also, I think, quite disruptive for the rest of the class. The only way to get Daisy engaged is to go almost completely over the top. Be loud, be funny, be the most interesting thing in the room and above all....be prepared to get it totally wrong sometimes!  There are days when it is impossible to teach Daisy anything yet there are others when she needs to know everything NOW! Her inconsistency is her most consistent feature!

Apart from her time in Year One, when she absolutely blossomed under the tutelage of Miss C and Mrs R, her time at school was a complete and utter disaster. She was a wreck and I wasn't much better. I am not prepared to go back to that, for either of our sakes.

So the BST team, can help me with the biting, scratching, kicking and verbal abuse...but mainstream school is not an option. Sorry.

Results....

Well!

The Behaviour Specialist came yesterday and we had a very productive meeting.

She didn't know what PDA was, but it didn't matter! She merely asked what behaviours Daisy presents.

So I told her!

She said that regarding the abuse I suffer "we can certainly change that. Make it stop."

I almost hugged her. Three life-changing words, that I wanted to hear, but felt that I never would.

I don't expect a whole new Daisy to emerge from this, because it's ME that will be doing all the hard work. Actually, I don't see it as work...I see it as more of a new challenge and a real opportunity to change things for the better.

I have been invited to join a 10-week course all about behaviour management and get the chance to meet other parents who also suffer abuse from their children. I expect a lot of laughs, a lot of nodding at each other as we realise that we really do have an awful lot in common and, yes, a few tears. It is incredibly difficult to admit even to yourself that your child does not operate in the way that you might have initially expected, and for the parents who have only just received a diagnosis it can be quite devastating. To declare it to a room full of strangers, especially for the first time, can be really emotional as you declare to the world in general that your child has a life-long pervasive disability. It is admitting it to yourself, acknowledging that your life as a parent is never going to be the one you had anticipated.

I read somewhere that a parent likened it to all her friends who had children of a similar age going off to live in Paris, but this particular parent ended up in Holland. Still a nice palce, but not the destination they had in mind. They wanted to be in Paris, but had to learn to appreciate everything Holland had to offer instead and forget about Paris.

For a long time I wanted Paris.....I got Siberia instead! But yeah....Holland is great, although the analogy should have said Nepal as we have so many mountains to climb! Hell, anyone can have Paris!

So, the next step in our journey is to visit the place where the course is held. S (the behaviour specialist) suggested I bring Daisy with me when the course begins as they have a creche there and Daisy would enjoy spending time with the Small Ones as they are completely non-judgmental and love to join in her games.

We go for a recce on Wednesday next week to see S again and get the low-down on where Daisy will be for a few hours every week for 10 weeks!

I am looking forward to it.
More importantly, so is she.

Help. (Part 2)

So......today is the day that a member of the Behaviour Support Team is due to visit.

Finally after such a long time this could be "it".

Oh, I am such an optimist. I know exactly how the meeting will go.

Just like this:

Me: Daisy has PDA

BS: Oh, what is PDA?, I've never heard of that

Me: Well..........enters into explanation of PDA again and gets really really frustrated that *professionals* don't do any kind of research before they meet us, even though they are aware of Daisy's condition because it's in her notes.

Doubtless I will be handed (again) a huge wodge of paper containing all the contact names and numbers of various local organisations regarding autism. Because I don't have those three times before already!

Why, when you pluck up the courage to ask for help - something I find incredibly hard to do - does it always backfire? I am doing my level best to help Daisy, but I cannot do it alone. I need people with skills in behaviour management, anger management and autism, but it isn't forthcoming. Even when we went to CAMHS I was appointed to see a specialist ADHD nurse. What use is that? ADHD isn't autism, Daisy doesn't have ADHD, Do they see a series of letters and just assume that PDA and ADHD are somehow connected because they share 2 of the same letters?

You know that there is no hope when you say to a *professional* someone that Daisy has Pathological Demand Avoidance Syndrome and they say "what's that?" and grin. It's the grin that gets me, like my daughter's disability is funny? I wish it was! I wish I could laugh about it. I wish Daisy could laugh about it. But, honestly, which bit of Pathological Demand Avoidance don't they get? It does what it says on the tin, for Pete's sake!

So, I sit and wait and nurture the tiny sparks of hope and optimism that this time it will be different. That I will be talking to someone who can make a difference to our lives. Just a small one....I don't expect miracles just a tiny chink of light in the dark.
Fingers are crossed................

Look How Far We Have Come...

I have been asked by a FaceBook friend about Home Educating.
She has a little boy, and she is exploring the possibility.....it doesn't work for everyone...it depends on your lifestyle, but it works for us. I wasn't aware of how far we have come until my FB chat, but I really do see a marked difference in my little Daisy.

So, for posterity, this is how far we have come......

OK.....on Feb 13th 2009 I removed Daisy from mainstream education.
The reasons?

1)     She was shown how to use the security doors by the Head Teacher. This gave Daisy access to the *outside world* and the very busy main road outside the school.

2)     She was being *forced* to write/use a pencil.

3)     She was, again, being *forced* to join in with team games, predominantly football/soccer, which as we all know is a team game.

4)     Her Autistic needs were being over-ridden and, worse, ignored.

5)     Her behaviour and health were deteriorating. Fast.

There are many other *lesser* reasons, but isn't the 5 listed above 5 too many? As Daisy's mum I am clearly biased, but to me as the parent of an Autistic/PDA child any one of the above reasons is good enough.

Apart from number 1, I repeatedly tried to get the school SENCO to help us. I was repeatedly hitting my head against a brick wall. I had meetings with her, but nothing happened, I threatened to remove Daisy at the beginning of Year 2 but to no avail, I emailed her with a list of concerns as she was impossible to talk to in person and got a note back from her, which basically blamed Daisy for their ineptitude.

So, my responses to the *big 5*?

1)     I witnessed both the Head Teacher showing Daisy how to use the door and her subsequent escape. I removed Daisy from school immediately. There was NO going back knowing she was unsafe. Bad enough that she was regularly sent from her classroom to wander the school, but the knowledge she was able to leave the premises unnoticed was way too much.

2)     Her reaction to any writing implement was heart-breaking. For a little girl who used to love to draw (especially rainbows!) she flatly refused to even colour in a picture from her colouring-in book. We had spent hours together colouring-in with her pencils and crayons and I have a huge collection of her masterpieces. For six months she refused to even go near her pencils and got very anxious when I even suggested we try it.

3)     Autistic/PDA Daisy cannot participate in team games. Daisy has an over-riding need to predict what is going to happen next. Not just the next instant but the next and the next and the next. She is also a control freak. To the nth degree. This does not mix well with team games. Especially football when there are so many other players on the pitch. She gets eaten up with anxiety with just 1 person....two whole teams? She cannot deal with that at all. I was told by (again) the Head Teacher that she *must* join in. I suggested that they give her a bat, a ball and a wall and she'd be fine. They said "no". So, she was anxious and disruptive and they wondered why....

4)    It is well documented that: Daisy needs her own space. A lot of space. Daisy has sensory issues like a lot of Autistic children, she dislikes noise. So forcing her to sit in a loud, busy and crowded lunch-hall with 249 other children is not conducive to a calm happy Daisy. Daisy was being punished for bad behaviour, to this day I don't know what it was, but she was told on a Monday that she would be punished on the following Friday! I defy ANY 7 year old to understand that, but an Autsitic/PDA 7 year old doesn't have a hope in Hell of getting that!

5)     She wasn't eating properly, sleeping at all well, she was violent and abusive at home for very nearly all of the time and really didn't want to go to school and was desperate for me to stay with her. Leaving my sobbing pleading Daisy in a place I didn't feel she was completely safe in, was heart-breaking for me, and I wish I had removed her earlier.

So....1 year and 9 months on?

Well, life is different.
Very different.
Yes, we still have melt-downs...she is Autistic, after all! They have been touched upon in earlier blogs, but not every day. She isn't so frustrated and anxious by everything around her. There are no expectations of her anymore. She isn't *forced* to write or do things that I know will make her anxious. She is happier and muxh more relaxed with life. She draws amazing pictures and loves designing dresses and fantastical vehicles, her imagination is boundless and inspiring. Her writing is never going to be fantastic and her spelling is phonetic and highly logical, but so what? She can write and spell and she wouldn't do that at school. Her ability to read is astonishing. When she left school everything she *read* was pure parrot fashion, now she can read almost anything she sees and gets so delighted when she conquers a new word. Sitting down and reading a book is something she can do, but as a highly mobile person, I don't know if she ever will! She is, and always has been, perpetual motion!

So, my angry, anxious frustrated little girl is now a happier person and the daunting task of providing her with an education is rewarding and so gratifying.
Like I said...it isn't easy and I make mistakes on a daily basis (or at least that's how it feels) but I don't regret it. Not for one second.

If we can get this far in 1 year and 9 months....just think of what we can do in another 12 months. I can't wait to find out!

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 there....no, 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!

So...is 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.

Oh, not Hallowe'en again!

Yes....it'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".

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, ignored...you 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!

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.

Insecurity

The Collins English Dictionary defines insecure as:

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

     I am a very insecure person....one 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?

     BUT....my 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.