Transplanting.....

     Daisy and I are transplanting to a different part of the garden.


     This is causing a lot of autistic differences to surface which means that blogging is not really an option.


     Leave a message at the beep, and normality will be resumed, just as soon as we figure out exactly what normal actually is.
























"BEEP"

Stop it.....that HURTS!

     "Sticks and stones can break my bones,
      But names can never harm me."

     I was taught that, almost religiously at junior school. It didn't matter what somebody said to you or about you, because it's just words. 

     Some decades later, I have a new twist on the rhyme:

     "Sticks and stones can break my bones,
       But words can really bloody hurt me."

     Through no fault of mine - at least as far as I can see - I am the victim of what I can only call a smear campaign. Now I thought that was the exclusive domain of politicians and the like, but no. I have joined the gang! I'm a fully paid-up member. I can see that you are impressed. No? Me neither.

     I do not regard myself as being a terribly good person in the same way that I do not regard myself as being a very bad person. I am just me. With the same feelings and emotions as everyone else.


     Yet, because I have a child who can sometimes talk to me as if I were filth, and who doesn't attend school because I feel it is better for her to be educated in an environment where she isn't filled with disabling anxiety, and who cannot comply with even the smallest demand sometimes; I have been ridiculed and accused of cruelty and even mildly threatened by someone who doesn't even know me!  

     How in the name of God does that work?!


     This person has made outrageous assumptions based on one encounter with Daisy and various conversations with another person with whom we are mutually acquainted.


     I am not about to "name and shame", not my style. Nor am I going to call this other person names, not because I don't want to, but because I have a bad back and find it impossible to stoop to such a pathetic level as theirs.


     Why do the ignorant people of this world feel that it is their right to try and destroy other people's lives? I have done this person.....no wait, I can't keep calling them "this person", we are in a flower bed....Hmm....irritating unwanted unwelcome plant.....thistle? nettle? BINDWEED!


     I have done Bindweed no harm that I know of. Yet it has systematically dripped poison into the Head Gardener's ear and spread malicious lies about me to all and sundry. People I might actually meet. People who now have Bindweed's opinion of me in their heads which may in time cause conflict as I am NOT the person Bindweed has made me out to be, which should be obvious within the first minutes of meeting me! Which shows Bindweed to be a trouble-maker and me just a normal everyday person. I'm not a saint, I'm not a demon from the pit either. I'm just me. I am not trying to be something I am not. I am just trying to be.


     If it weren't so damaging, I would be flattered. Bindweed's feelings towards me are so strong, they have to try and destroy everything I hold dear. That's a powerful emotion. Utterly negative and totally wrong, admittedly but still powerful.


     As any gardener knows, unwanted pests are not always easy to get rid of. Especially pests that don't know when to curl up and die.

     I am trying to get through to Daisy that it isn't OK to hurt people's feelings. Working with her to understand that the things that she says might have an effect on someone elses' feelings. In good and bad ways. Bad things you say hurt people. Inside. Where you can't see it. I do this because Daisy doesn't have the ability to "hold her tongue". Indeed, if I told her to do that, she would. Literally. I have to do this because Daisy is autistic. She doesn't have the understanding built in to her brain. It needs to be lodged there and she needs to be reminded that it's there. Things that NT people take for granted are not a "given" to those of us dealing with autism. 


     I have often been told that having an autistic child is "a gift from God". I have issues with the whole God thing, as people know, but if God is giving out gifts I would have to say that the real gift is being NT. Knowing when to speak and when to shut the hell up, understanding when someone is hurt or happy because it shows in their face and body language, realising that words hurt. THAT is a "gift from God", yet it is taken for granted and abused by every single one of us on a daily basis. Without a thought for the consequences. Or, worse, to deliberately cause a set of consequences that will damage someone else. Daisy simply doesn't understand consequences, if you put a scenario to her she usually cannot comprehend it. Even a simple one will cause puzzlement at best and deep distress at worst. But us NT people, those of us who belong to the "normal" club, we hold that power in our hands and hearts and we misuse it every day. We have the ability to "hold our tongue" and we do not. 

     Give me a black and white ultra literal autistic person any day.

     "Sticks and stones may break my bones,
       But words should be chosen wisely ."


    

    

 

 

Don't Do That.....Your Child Will Develop Autism!

    I have read 2 articles today regarding "How To Give Your Child Autism". Not only does the content irritate me intensely, but the reports contain no clear facts or real supportive evidence. 


     Article 1 is a "proper" report from (where else) America, which boldly claims that being obese and pregnant causes your child to develop autism.


     If that weren't bad enough; the second thing I read declared that losing weight during pregnancy, because of chronic morning sickness, causes your child to develop autism.


     WHAT??????????


     I don't know whether to laugh or cry.


     Isn't it difficult enough being a parent to an autistic child without being admonished for either being too fat or too ill during pregnancy? The "too fat" I can understand - although not the autism link - but "too ill"???? How on earth did we get to that point???


     I am stunned by the tenuous connection to the morning sickness, it's not as if women elect to spend 9 months being horrendously ill. It's not a life choice. My own mother was desperately ill while pregnant with my older sister, this was at the time when doctors were prescribing Thalidomide to help ease the sickness. I actually have to stop and think about the very narrow escape that they both had. Life for them could have been so very, very different had she been prescribed it, and I probably would not be here as the youngest child of the 2 of us. Incidentally, both myself and my sister are NT.


     Personally, as I cannot speak for anyone else other than from an anecdotal perspective, I suffered not even a bout of the hiccups during my entire pregnancy. Yet my daughter was born with autism. 


     
     The "proper" report regarding obesity just fills me with horror, if I am to be honest. Several friends who have children approximately the same age as Daisy have all dismissed the article as, um, "nonsense" as none of them were horribly overweight or even overweight at all when pregnant with their autistic children. For myself, as someone who has struggled with weight issues for years, I can honestly say that I was certainly not overweight and most probably underweight throughout the whole 9 months. It took me 10 days to get back into the size 6 jeans I was wearing before pregnancy. Not something to be proud of, but it's true. Yet, my daughter was born with autism.


     Here in the UK back in the days before and after Daisy was born, there was a huge scandal brewing. Children were being vaccinated against Measles, Mumps and Rubella, all potentially horrible diseases which I whole-heartedly agree MUST be wiped out and vaccination IS the right way to do this. HOWEVER, I do not agree that a very small child should be subjected to the almost continuous rounds of vaccines containing Diptheria, polio, whooping cough, mumps, measles, rubella and any others that I have probably missed. How is such a tiny system supposed to cope with all these horrors? Surely there is a better way to keep these awful diseases (any one of which has the potential to kill you) away? Sadly, I do not know the answer to this, and I will always advocate vaccination, but does it really have to be in such a short time frame?


     Anyway, back to the scandal. A doctor here in the UK was claiming that the Measles, Mumps, Rubella vaccine (MMR) was causing autism and bowel problems in the children who had received the vaccine. This eventually gained massive news coverage to the point where the then Prime Minister and his wife were questioned as to whether they had had their baby son vaccinated with the MMR. They refused to answer, claiming that it was a personal matter and not for the public domain, which added more fuel to the fire as most people speculated that they hadn't vaccinated him. I made a measured decision to *protect* Daisy from autism and had her vaccinated against measles, mumps and rubella individually and at a price as the NHS would not offer any other form of vaccine other than MMR. My GP was very cross with me, and tried to both bully and emotionally blackmail me into giving her the MMR. It failed. I wasn't prepared to *give* my baby autism. The doctor who started the scandal has since been utterly discredited. Yet, my daughter was born with autism.


     I cannot help but hope that this blame mentality will eventually stop. I deeply dislike the use of the word "develop" in the articles I read. It makes me  smile though when you consider that autism is a developmental disorder. How does a developmental disorder develop? Maybe the "doctors" should study that! 


     I can fully understand why a parent of a newly diagnosed child would want to blame something, but I can't help thinking of all those overweight mothers who believe that because they are fat their child will be autistic. Or those mothers (like my own) who spent 9 months feeling so ill and are now waiting for their child to "develop" autism. So very unfair.


     It is my personal belief that autism is caused by a gene. It just hasn't been identified fully yet. There is a reason that Asperger's runs in families after all......


     I do not believe that I was chosen by God to be the parent of an autistic child.


     I was not too fat when pregnant.


     I did not have chronic morning sickness.


     I do not believe that MMR vaccinations cause autism.


     My pregnancy was completely normal.


     Daisy's birth weight was fine.


     Labour with Daisy was uneventful and there was NO medicinal intervention or assistance.


     Yet, my daughter was born with autism.


     Daisy is autistic because she is genetically programmed to be. 


     BOTTOM LINE!! 


     Nobody wants their child to be programmed to be different, but they are. 


     People have GOT to stop blaming the nearest thing to hand and start channelling that energy into positive articles and research. Then, maybe society and the media will start to accept autistic people and the fact that they are different, and begin to build a future where autistic people are allowed to be autistic people and autism itself is not the bogeyman!








     


     

Write On....

WOW!!!
It has been the longest time, hasn't it?


Now, keep it under your hats...but the reason? Bloggers Block! I tried so many times to sit in front of the laptop but every time I tried to write, it just wasn't happening. Write went wrong, you could say...


So, anyway, I left it until I knew I would be able to write with a degree of positivity and actually finish what I'd started! Now I feel I can.....


Let's get on with it then.....


First news: I received in the post this week some brilliant little cards. About the size of a business card they are issued by the NAS (National Autistic Society) and are designed to help autistic folk who find themselves in a situation they are unable to deal with. It's easier to just tell you what the card says.......


"This person has autism
> Autism is a lifelong disability that affects social and communication skills
> People with autism may behave in unpredictable ways as a result of their difficulty in understanding language and social situations
> People with autism are likely to be extremely anxious in unfamiliar situations
> Please help by being understanding, patient and tolerant."


Isn't that great?? I have been struggling for ages to write a succinct description of autism and have never managed to get it below an A5 size...so this is just grand! Daisy is much taken with them too, and insists on carrying one with her every time we leave the house. I was expecting trouble but she surprises me (yet again) with her attitude to autism.


Talking of attitude to autism (not a bad link considering it wasn't planned!) Daisy, the Head Gardener and I have been chatting a bit about her PDA and how it affects her life and the impact that it has on us. Currently, she is more, not in denial as such, but wishes she didn't have it. She blames all her negative behaviour on her autism too, which is virtually everything in her eyes, because she feels that everything she does has a negative impact on everything/everyone else. Obviously this is completely untrue, but sometimes is it tricky to find a positive in all the negatives. She is not a savant but she is very good with numbers and her visual memory is outstanding. That's not just me being all "mommy" about it either, she totally understands the logic behind numbers. Numbers don't change; 2+2 will always equal 4 and there is order and sequence to numbers that appeals to her. Already I can see the day when I will no longer be able to teach her maths, as it was always my weakest subject back in school, so I will have to find a tutor! Never thought I would have to say that, and while it sort of disappoints me that I can't fulfil the role, it delights me even more that my Daisy is that bright!


Literature is much more difficult. To set the tone, I bought some English books to use at home school. She took one look at the cover and this was how the conversation went:
Me:       Look, I bought some English books to use in home school
D:         What do I want those for?
Me:       Well, to help you learn English....
D:          (interrupting) But I am already English! I know how to speak English, what do I  need a book about it for?? 


Hmm.....a good and very logical point and a typical example of a NT person (me in this case) NOT thinking before they speak! It has rather scuppered my attempts to get her to understand even the basics of sentence formation and punctuation as she feels she doesn't need to know it. To a degree she is right, I mean everybody seems to text talk (which I hate with a passion I cannot convey) and it will only get worse be used more often and more widely, but I still feel that at least a basic understanding should be in place. Sadly, words for Daisy are deeply unpredictable. Individual letters have sounds that disappear and change when grouped with other letters, making spelling a nightmare for her! She has a good reading level, and has always been able to put meaning to the words when reading aloud and she understands the words she reads, but write them? No way! Even a simple 4 letter words leaves her struggling as she cannot grasp the order of letters and gets very frustrated. Even her brilliant visual memory lets her down as even with the word written in front of her, it takes far longer for her to remember it and she gets very cross with it all.


Despite all this, I remember a time when she wouldn't even pick up a pencil to try, so even though it is a very long road we are progressing in the *write* direction, just with teeny tiny steps.


There....I have written a fairly coherent blog for, I realise with a degree of shock, the first time this year! Good job I do this for fun and not a wage....I'd be in Cardboard City by now!


Goodnight! 

.....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................