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.

Oh....didn't expect that.

Today was meant to be a day of beginnings.....a day that might just have meant that Daisy and I would start to get the help that we both need.

It didn't quite turn out like that.

I guess life never does, does it?

Just when you think that it's all going swimmingly suddenly there's a triangular shape approaching...and it aint a jolly prankster in a wet suit with a fakey fin strapped to his back.....

So....today was meant to be the day when 2 social workers were due to visit. 2.30pm to be precise. That was the arrangement made between me and them. Not the result of a malicious anonymous call but the result of 2 interviews with CAMHS at my instigation as I will now fairly freely admit that we need help with some of Daisy's more.......interesting and painful behaviours.

I admit to being very apprehensive about the meeting....previous writings have explained this, but I sought advice as to how to handle the meeting and felt that after 4 hours sleep that I was as ready as I was ever going to be.

2.30pm loomed....2.31.....2.32......2.33.....skip to 2.37 when my mobile phone beeps....it's a message from one of the social workers telling me that she is outside my house, knocking on the door but I am not home.

Well, you see the thing is Your Honour.....I WAS at home. I was standing in my kitchen at the window watching my bloke walk off up the path at 2.30.....my kitchen window is next to the front door. It is impossible NOT to see anyone coming. Yes, I know what you're thinking....I was distracted by the sight of aforementioned bloke and, yes, I agree that watching bloke is infinately preferable to waiting for social workers BUT they would have had to cross my line of vision. They didn't. I have no idea where they went....but they never came here. Nor did I receive any contact from them after the message was left.

Is this what you get when you ask for help? I am beginning to suspect that abusing my child is much more a meatier thing for them to handle than me asking for their help. Let's face it, they couldn't have got here any quicker last time. This time, they couldn't even find their way.....

Well, sorry, but abuse is out of the question...although ironically it's the abuse that I receive that is a major part of asking for the help in the first place. Funny? I almost smiled. But not quite.

So.....yet again I feel left high and dry. Not abandoned.....not quite. Not yet.

It's all about trust....

Trust is a very dangerous thing.

How's that for an opener????
Not bad, if I say so myself.

But, for me, it's true.

I have the most annoying tendancy to trust completely and utterly at the drop of a hat. Always have, regardless of the problems it has caused me and will probably continue to cause me. It's a design flaw that I see in myself and even more obviously in Daisy. She is so innocently trusting....like a lamb although hopefully not to the slaughter. She sees only the good in people and has never uttered a cynical comment in her life.

I wrote the above text 10 days ago. I never got round to finishing it....but now I find myself in a situation that almost demands that I carry on and see where I end up.

So.....let's talk about trust. Trust is important to me, I don't believe that trust should be earned. I believe that in order to move through life you should trust first and have it broken later! Probably a wonky way of looking at it, but that is me. Can't change that. Oh, yes, my trust in others is constantly challenged, but I feel that it is better to shake something that is already firmly there than disturb the foundations of a new and wobbly building.

Today my trust in someone was rattled to it's very soul.  As usual my absolute trust is in ruins. I don't know if I can rebuild it, I guess it isn't up to me, it is up to the other person to want to show me that they can be trusted. From the ruins of trust can come greater understanding of how a person works, but the ruins can never be completely replaced...it will never be good as new, no matter how hard you look for all the pieces there is always a bit missing. It may have gone under the sofa or behind the fridge or just be dust in the air,,,but it is missing. Gone. Forever. It is the element of doubt, that broken trust always leaves behind. So maybe my absolute trust is wrong. Too naive...too simplistic....too childlike.....dare I say it; too autistic?

I expect my trust to be poked every now and again, I think it's healthy and keeps things moving and stops people from stagnating. But this is hard to take, broken trust equals hurt and hurt, well,  it hurts. It's really rather odd, now that I sit here at silly o'clock in the morning, trying (badly) to analyse all this, I am not so bothered about the trust as I am about the hurt. The rawness of the feeling, the way the hurt makes me want to hurt right back at those who have made me feel this way. It inevitably makes me think of Daisy. Her need to cause hurt to those who have impeded her progress, her desperate need to lash out and cause pain....it isn't so far removed from how I feel now. The cause is different, but the feelings are the same.

So where does this leave me? Apart from surrounded by trust-dust? Well, it leaves me with a burning desire to protect Daisy from absolute trust, to try and instill in her that people can't always BE trusted, that the element of doubt should be there already. Not be the missing piece of broken trust after the thing has shattered into a thousand pieces. Maybe I am wrong to think this way, maybe I am just still too hurt, but I know how fragile Daisy's emotions are and I know that she wouldn't be able to cope with it any better than I am and I am meant to be the grown-up!

I ran once again to my "Amazing People", and once again I was not turned away. Thank you to one very special (and curvy!) lady....you know who you are, for the advice and strength that you passed on to me. You are an inspiration to me.

Case Closed

The very nice Social Worker who came to our house late last week has just called and told me that the case is CLOSED!

I am completely innocent of all allegations laid at my door and the person who tried to interfere with my life has been shown to be a spiteful and immature individual.

I have nothing further to say on the matter.

Thank you to all my friends and family who stood behind me. I appreciate your support.

Sleep? So over-rated, Dahlink!

Well, yet again the sun has made it over the hoirzon and I have been awake to see it.

It was nice, don't misunderstand me and I always feel mildly relieved that it has actually put the effort in to appear, but we are fast becoming best friends which is not something that I had intended. I don't mind waking up with the sun....sleeping in bed and having the sun play on the wall and the duvet or something....but this way it looks like I'm waiting for it.....like a parent waiting for an errant child to return home from a night out...."and what time do you call this? I've been waiting up all night for you! The Moon and I were getting worried, you could have called"....you get the idea.

The reason for this new and exciting relationship with the sun is my new-found insomnia. Another new best friend that I didn't realise I had room for in my life. It's true what they say....you can never have too many friends, but not all of them are the right kind of friends. Insomnia for a start is not good for me, we stay up all night and party, but it's all so one-sided, if we don't do it the insomniac way then we don't do it at all. I want to sleep, I need to sleep but I am nagged into wakefulness by insomnia whispering in my ear and sending random thoughts round and round in my head until beautiful, wonderful sleep evades me. Again.

So, while I wander round the house nattering on the phone to fellow sleep-pattern-disturbed individuals I set myself to wondering how long I can continue to function in my current condition. I am seriously sleep-deprived.  What is the first thing to be affected? Does my body try to compensate for the much needed sleep in some other way? Am I dangerous?

To be honest, the first thing I notice is that, oddly, I am hyper-active am I running on adrenaline? Well, I can't be...I take adrenaline-suppressing drugs as I react adversely to my own adrenaline. It's bit like being drunk, only alcohol-free.A cheap date, you might say! I have a tendency to ramble incoherently, although people who know me well, tell me I do that anyway, so maybe I am just more aware of it now. My nicotine intake has dramatically increased, maybe because there are more hours in my day or maybe because I am using it to keep on going.

But, by far the strangest thing for me, is that I am much less "stressy", I don't snap at Daisy and the cat over daft little things and I hear myself being much more tolerant of things I would usually get all over-heated about.
Daisy tells me that she likes this relaxed Mummy, I'm more fun and she can get away with stuff that a well-slept me would revolt over.

So it seems that I will continue, albeit unwillingly, with my programme of some weird kind of top secret military training where guys have been awake since the Second World War and spend a lot of time out-staring farmyard livestock. It seems to be good for me  and therefore Daisy too, although in a bad way!


 

It happened; it passed; move on!

I am feeling retrospective today.
I think it's always a good idea to at least glance over the shoulder and see what happened in the last 7 days and glean the good stuff out of it and get rid of the rubbish.

Firstly, I am amazed that I am still actually here. A three-day Autistic melt-down is not something I ever expected to experience and, although it probably goes without saying, never want to experience again. But, it isn't all about me, is it? I was on the receiving end, but what about Daisy? I find it very difficult to try and spend time inside her head, although I do try, but to feel so anxious and scared and frustrated and angry for three whole days? I mean, how does that even happen? I know what the trigger was, but I find it impossible to understand why it triggered in the first place. I cannot dwell on the "Three Days Of Hell", it happened, it has passed and somehow we came out the other side.
I cannot analyse or discuss it with Daisy as she cannot remember very much of those three days so we live by the Golden Rule that "it happened; it passed; move on".

I am suffering the wrath of an ex-partner.....I have been reported to Social Services, I am being sued and various internet allegations made against me are being investigated by the proper authorities. I have sought legal advice and know my position up on the battlements. Battlements are better than cannon fodder, right? So, to my bitter ex-partner I would strongly advise you follow the Golden Rule "it happened; it passed; move on".

My retrospection has also made me realise something about myself that I really didn't know before. I am made of stronger stuff than I knew. I am not cowed by autism, I am not beaten and broken by craven, cowardly people who attack me from a distance. I am still standing and stronger than ever. What is even better is that I am not alone. I have the love and support of my "Amazing People". For the first time in my life I realise that there is strength in support. I always viewed turning to others for help as a weakness. A sign of defeat; of being incapable or unable to cope. That I would be seen as a lesser person, somehow feeling that I was only living up to others expectations. But, that isn't so. I now realise that love and support is a two-way street, that I can give it AND receive it in equal measures.

So...without our 3 day meltdown, I would never have learned this about me. Were I to have a child that isn't autistic I would not have grown as a person. So, once again I find myself at the Autism Altar, giving thanks and lighting a candle for my amazing, incredible beautiful Daisy.

A Brief Encounter!

Well...the Social worker came....

.....and then he left again!

I confess to feeling a wee gloat approaching as I happily played my "ace".

My "ace" is a collection of till receipts all dated Tuesday 24 August 2010, which is when the anonymous caller made the call.

I had, the previous day, received a text message from my Prime Suspect informing me that they would contact Social Services should I not return to them a certain item of property that they already had. Tricky one, that! I can't return something that I have already returned. I'm good...but that even defeats me!

So, Tuesday arrives...the call is made....disturbing screaming and shouting coming from my house.

Well....I was 215 miles away at the time the call was made. My till receipts prove this. Maybe the cat had some mates round? The toys were having a party? You know how excitable Barbie can be when she gets going! Whatever...it sure wasn't us!

So.....I play my ace, and although people have to be spoken to...the dentist and her paed for example, you could see that his heart wasn't in it. Especially when I showed him the text message. I keep everything, me. Just in case. Can't be too careful I always find. So that's it. All that unease...all that fear and emotion-wrestling for nothing. As I knew it would be.

I could no more hurt Daisy than I could fly to the moon with just a swan feather shoved up my ar......well, you see where I'm going with this!

All back the way it should be.


I feel sorry for the person who tried to hurt us. Alone, I am strong, but when I have to stand up for my Daisy I am bolstered by the love of a mother for her child, and that will never be weakened. Not by a spurious false allegation not even by death itself. You don't stand a chance against me Anonymous Caller....attack me all you like...well, you have already haven't you?....but don't ever, ever try and get between me and my Daisy because you will always fail.

An interesting encounter?

I received, just the other day, a note through my door.

A hand-written note with a short message and a phone number that will have an impact on my life for a long time.

No, not a marriage proposal from a shy secret admirer....nor a mystery benefactor offering me help and advice.

No......it is a note from Social Services. They have received an anonymous report suggesting that in some way my Daisy is being harmed. By me.

The emotions I went through are too varied to mention. Fear, anger, shock, surprise and finally realisation. I KNOW who carried out this craven act, can't prove it, but that doesn't matter. I know.

So now, thanks to them, I have to prove myself to be a good parent to my child. My beautiful Daisy whom I love and cherish above everything else. I couldn't hurt her if I HAD to....never mind anything else.


I do, however have an ace up my sleeve that may well flatten this allegation and send it to the bin where it deserves to be. Clearly, I cannot mention it here, but it gets me thinking.....why should I have to justify my life with my own child just because some coward chooses to make my life difficult. They hide behind the "anonymous caller" shield and yet I, the innocent party, am left in the full glare of the spotlight. The suspicion, the questions, the blame all gets piled up at my door and the malicious person gets away with it. Is that fair? I appreciate that child welfare is paramount, but an unfounded allegation can cause such heart-ache and feelings of betrayal and where is the recompense? I don't mean financially but emotionally. The strain on me over the last 24 hours has been extra-ordinary. I am innocent and not only know it, but can prove it. Yet, the spectre of a social worker visiting my house and checking me out has caused me to not even bother to try to sleep as I know I won't be able to. The stigma of a social worker is hard to take. Social workers walk in and take over and make excessive demands and you must be a rubbish parent if you have one.

But that is not true in every case. There are over-zealous ones and really incompetent ones...just like every other profession. There are also ones who are considerate and thoughtful and actually damn good at their job.

So I will bite back the distaste and the associated stigma and meet this guy on MY terms. I invited him to my house and I will treat him with the respect that a person doing a difficult job deserves. He is, after all, only doing what is right and fair and just. He has yet to meet the amazing Daisy and read her diagnosis and see her in action.

So, if a cowardly act brings another good, decent and honest person to my door,one; who actually may be able to help me with Daisy's socialisation skills, then I thank you for your craven act as you have actually done me a huge favour. Oh, I know who you are and I know that this is just another spiteful act towards me, but you have underestimated me.

Paying Tribute to Amazing People.

After the emotion-sapping last couple of days, I would like to pay tribute to some very special people.

No, not the professional people who haven't a clue most of the time how to deal with us, but the people I spend a lot of time with....My fellow FaceBookers and more importantly my fellow MouseHunters. Yes...you know who you are!

This will probably sound certifiable to anyone reading this who doesn't ever use FaceBook, but I can honestly say that without some people, I would most certainly have not been able to stand up this morning and have the bravery to face another day.

Most of the people on the list below I have not yet met. I would like to ammend that someday. But for now I am grateful that as soon as I hit the "enter" button I know that there will be a reply or a comment and I know that I am not alone.

So, for various reasons beit because you make me laugh, find me funny, have an inkling what it is like to be me, support me with kind words or just talk to me about MouseHunt in the wee small English hours I would like to say the World's Biggest Thank You. Were it not for you....my life would be darker and colder and a whole heap less fun. And have a lot less mice in it!

First names only (to protect the guilty!):

John W H....MaryKate...Phil...Kathy C...Subie...Ladyship...Lozzie...Melissa Q...Melissa M...Elizabeth...Richard...Donna...Ruth P...Andy...and the 2 Marks!

This is for you....please share nicely as it is the only one!

This is Hell....

I am in Hell.


.....Well, my own personal Hell at any rate.
I always thought that Hell would be, oh I don't know....other people's holiday snaps of Brentford or their childs' first smile, which I admit is cute for the first 9 times but is wearing after 85 oh-so-similar-snaps.


Well...I stand corrected. My own personal Hell is my 8 year-olds autism.
The kind of Hell that makes me ROAR at her because she is hitting and hurting and pushing me...the kind of Hell that makes me feel so utterly helpless in the face of an autistic rage....the kind of Hell that finds me wanting to get utterly drunk and return to bad and painful habits that I thought I was recovered from....the kind of Hell that makes me want to curl up under the duvet and never return....the kind of Hell when I look into my beautiful daughters' face and see nothing but pure hatred....the kind of Hell, the WORST kind of Hell, where I can see the one person I love most in the entire world is suffering and I cannot find the right thing to do.

I am not a Godly person....although I admire others' faith, I cannot subscribe to it. I am envious of it, but realise that I am not the kind of person who can believe in an ethereal being who may just be a figment of some fevered imagination.  I need hard proof.

I do not believe for one moment that I was "blessed" by God. I wasn't "chosen" to be Daisy's mother because I am in some vague and smoke-and-mirrors-way the best person for the job. I am Daisy's mother because I gave birth to her. I remember it well! I wasn't picked from billions of people to be the best she can have....I was randomly selected by genetics and given this amazing, crazy beautiful person to look after to the best of my ability.

I currently feel a complete and utter failure. I cannot give her the things she needs, because I don't know what they are.....I cannot even help prevent the meltdowns as I can no longer predict them. She attacked my 75 year old mother yesterday, because I turned off the TV. I have turned off the TV a gazillion times, but this once she goes into full-scale meltdown. She has also attacked me while I was driving the car which was really quite scary....probably don't need to add that bit!

If only I could get her to not be physically abusive.....I can bear being called horrible names, I don't care if the house is trashed, it's all material stuff that means little or nothing at the end of the day, but being bitten and scratched until you bruise and bleed HURTS! I know that it's purely a reactive action to my preventing her from some action or another, but it hurts.....more mentally than physically although it's enough to make me cry with pain.

I am, of course, trying to get help from the "right" people....I have an "emergency" appointment in, erm, 2 weeks with CAMHS but have already been advised by the referring GP that they won't be of much help to us. If not CAMHS - the people "trained" to help me -  then who? I am terrified that this is my life now. My whole life and very being orbiting the planet Autism...drawn in unable to leave. Ever. Stuck there, going round in circles until one of us dies.


I am not being selfish.....I don't want anything other than a little piece of OUR lives that can't be labelled as Hell.

Right now.....we don't have that, and I simply don't know how to make it happen.

PAWS for thought...

Well....Workshop 1 all complete with the wonderful ladies at Dogs for the Disabled!

Lots of questions asked and tons of thought provocation....

So far, I have decided that the dog in question would be male. I really expected a girly dog...a dogette, but no, it appears that with the breed I am looking at a boy dog is the order of the day. Well, the cat won't be out-numbered now then!

Daisy is, as expected, terribly excited about the whole thing and I have implemeted loads of rules for her to follow....nothing major, but simple things like not leaving toys on the floor...puppies chew. Everything and anything. 

Close the lid on the loo. A Dobermann I had the honour of sharing a flat with regularly drank from the bowl of the loo whenever she could. Yuck!

All 'can't-live-without-toys' must live in the conservatory. Puppy is banned from there, allowing the dog-reluctant cat a safe haven!

If we manage to get the puppy we want, then he is currently a 1 week old Golden Retriever living in Portsmouth. He is from a litter of 10 and 5 of his litter-mates are already booked. Now, I know a bit about dogs having worked with them for years, but there is no way I am putting a hefty deposit down on a 7 day old puppy. He comes from pretty good stock...quite a few Show Champions in his pedigree and both his parents have good hip scores, but that doesn't mean that my puppy is going to have the attributes we need. I need to see him running around, inter-acting with the world around him...puppies a week old don't do very much at all.

So I leave it all up to fate. If I am destined to get this particular little chap, then he will still be available in a couple of weeks when I can go and see him. If not, then I was never meant to have him. Simples!

Now we just have to choose a name we both like!

An Open Letter to all those people in Kwik Fit earlier today.

Dear People

I would like to send you all a big "thank you" for completely ignoring my Daisy when she got bored. Not one of you glared at me when she started to hit me...not a flicker from any body when she started crawling under the seats and got utterly filthy...not even a "tut" when we started to play "floor tennis" and made a noise that might have distracted you all from your text messaging, working on your lap top or talking on your phone.

Yes....you were all so busy wrapped up in your own lives that you utterly failed to see mine. Not one of you would probably be able to say what either I or Daisy were wearing or even what hair colour we have. What use would you be in a police identification parade or a witness statement? Are you so absorbed in your little bits of technology that you can't sit and chat or just relax? How can you be so insular? If the waiting area had contained people from my mothers' generation it would have been lively and chatty and gossipy...you people who are all from my generation didn't even want to make eye contact with one another. There is nothing wrong with acknowledging anothers' presence and you set a terrible example to Daisy. How can I possibly teach her social skills when you, the people she needs to observe and learn from, are shutting out everything around you and focussing on a silly little piece of plastic coated technology?

I am ashamed of you, people.

Tiny PAWS.....

Well, there I was, sifting through the Yahoo emails when I found one from the amazing charity Dogs for the Disabled.

Would I be interested in maybe attending a three day course (spread over three months) to try and work out if we should have a dog and what dog would be the most sensible for us?

Would I????

Are you kidding?

I replied straight away! There are so many provisos though, on my having a dog in the house that it might transpire that after the first day it's a big fat no-no...but at least I can say that I tried.

Sadly, it won't be a *proper* assistance dog, inasmuch as we can't take it everywhere like you can a fully trained dog, but I will be helped and guided throughout by the DftD as to which breed might suit as well as the more practical things such as training and behaviour management.

In my head there is already a beautiful, calm Golden Retreiver bitch exuding a soothing atmosphere where ever she cares to tread....The reality would be so different!

The first session will be in July so I wait to hear if I have been accepted...

Well...there's turn up for the books!

I finally emailed Mr Lee's office as I was bored with waiting for a reply and LO AND BEHOLD Mr Lee will be attending!

Wish he'd been courteous enough to tell me without having to ask again....

Still....something is always better than nothing.

Talking of nothing....that is exactly what we received in today's "Emergency Budget". I appreciate that we are in financial dire straights but how is a person who lives in poverty....not necessarily me by the way...supposed to survive when the price of everything will be increased yet there will be no extra money coming in? 

I am much more interested in how the Government is going to implement the new changes to the DLA scheme. Yes...as I have said before, it needs reform...that form is a killer, but to subject all claims new and old to a medical assessment seems, to me, utterly undoable! (Yup, that is a word!)

It took a group of professionals 2 days to assess Daisy  before a diagnosis was reached, so how can (presumably) 1 person reach the same conclusion in what will have to be a considerable shorter length of time?  I have lost hair, sleep and a few marbles trying to get the Dept. of Works and Pensions to understand that Autism is for life....not just childhood, yet are they now plotting to make a really difficult experience for carers even more stressful and uncertain? I am currently resting on the dubious laurels of Daisy's autism being recognised as *not improving in the foreseeable future*, how long will I be able to rely on this now seemingly precarious perch? 

Surely a person with a dianosis of a life-long developmental disorder would be exempt? What about those with a condition like MS? They can experience periods of remission, how would it affect them?

At least nothing will happen until 2013, so I have 3 years to find out, complain, blog about how nobody can even be bothered to reply, complain, blog, etc etc etc.

Still Waiting.....6 Days and counting.

Well...here I am in familiar territory....

...Waiting for my local MP to shift into gear and reply to another EDCM request.
After the last request for him to make a promise to do something should he be elected I doubt very much if he'll do anything this time either, after all, this latest request actually involves putting in some effort.....

I would like to apologise for sounding bitter and frustrated. I would like to, but I can't. I AM bitter and frustrated at being ignored by the very people who I helped employ....

This is the pertinent section of the email sent to me by the EDCM.

Take Action!

Every Disabled Child Matters (EDCM) is launching a new briefing: 'Disabled children: an agenda for the new Government' on 6th July at an event at the House of Lords.   Email your MP and ask them to attend! 

It only takes a couple of minutes to take the action and the event is a fantastic opportunity for your MP to hear from disabled young people and their families about their experiences, and for MPs to find out about EDCM's recommendations for the new Government. 

I immediately sent a request to Mr Phillip Lee. I received a reply from his secretary:

 

 Thank you for your email to Dr. Lee regarding the Every Disabled Child Matters campaign.

I shall ensure Dr. Lee is made aware of your concerns and replies soonest.

Kind regards,

I appreciate that MPs are probably very busy what with the summer recess coming up, but that is what they have staff for! it's known as delegation....sigh


What does it take to get this person on my side??????

Answers on a postcard please....the winner gets a week on my coffee table!
No....it might not be much of a prize, but at least I'll have answered you.

I'd make a lousy MP then, wouldn't I?

No. Moaning doesn't help.

I got a reply from someone in Maria Miller's office.

It was the most long-winded non-reply to my questions that I have had yet! Sadly, I do not need an email explaining to me the criteria for a pre-school child needing a Blue Badge. My Daisy is 8. I said this in my opening paragraph.  Nor do I need an email explaining how DLA and the Motability aspect work. I ALREADY KNOW!! I appreciate that higher rate DLA and Motability is for those with severely restricted mobility....but, as I explained in MY email, we are housebound without my car. My car works. It works fine. If I lost my car (through no fault of my own) we would be housebound. How much more restricted is there? I don't want to change my car, I don't need to, I just want the "safety net" of Motability IF I need it. Having it there cost nothing to anyone, but it gives me the peace of mind that no amount of money can buy.

I am really rather annoyed about it, and I'm not going to shut up and go away and go away until I get somewhere with this. Stay tuned.....!

A bit of moaning might help?

I have emailed the Minister for Works and Pensions (Maria Miller MP) regarding the "rules" concerning Blue Badges and DLA.

I have made no secret of my dislike of this form and look forward to the new Government reforming it in the near future. Please make it soon, for all those poor people who still have to suffer it!

I have asked that carers of children like my Daisy be considered for a higher rate of DLA as although their mobility isn't restricted they pose a massive risk to themselves and others by their "super-mobility". My Daisy is (like many autistic childen) extremely sensitive to noise and will "bolt" when she is scared by an unexpected noise. This is bad enough in a store where maybe the anti-theft detector alarm will sound but a car alarm or even a car engine turning over outside the store will cause Daisy to "bolt" in a blind panic REGARDLESS of what danger she might be running into. Any car accident caused by this behaviour will never be the fault of the driver, but what consolation is that? To anyone?

Our only mode of transport is my car. Buses and trains are completely out of the question, they are unsafe, loud, unpredictable and involve waiting. Autistic children don't tolerate waiting very well at all. I have felt for a long time now, that we should automatically be eligible for a Blue Badge. Not just Daisy, but ALL the people who suffer from any condition that causes them to be a clear danger to themselves and others. I have a letter of recommendation from a specialist paediatrician supporting my claim, yet the department that deals with our DLA claim didn't seem to take it into account and I don't suppose for one moment that the department that deals with Blue Badge applications will either.

A higher rate of DLA (well, the right component at least) would automatically qualify Daisy for a Blue Badge and the Motability scheme. Both things we need. I am lucky enough to own a car that is only 3 years old and should give me many more years of service and reliability, but what if something beyond my control happens to it and it is written off? My insurance would not cover the cost of a new car and I can hardly down-grade for a cheaper model....I drive a Ford KA!

So....simply put we need the safety and security that a Blue Badge would offer in dangerous places and the knowledge that SHOULD I need a new car I can get one I can't begin to explain how difficult life would be for both of us if we had no car. It would be walking distance or nowhere. We wouldn't even be able to go to the supermarket....

I'm not a benefit-grabbing single parent out for everything I can get. I am simply trying to give my daughter the security that I feel she deserves....If I could find employment that allows me to earn enough to support us and take into consideration our circumstances then I would grab it with both hands.

I have already received an acknowledgement email from Maria Miller's office....
Looking good, 'cause that's more than I ever got from my local MP!

Not a priority, apparently.

I home educate Daisy.

It isn't easy; it isn't something I undertook lightly and it isn't something that anyone can prepare you for. However, given our circumstances.....I had no choice.

When I removed Daisy from maistream school in 2009, I took the right advice and "de-registered" her. This tells the Education Authority that I intend to educate her outside of mainstream education. I was supposed to meet with the local Truant Officer....Ooops, sorry....Education Welfare Officer but that never happened. We played a great game of "Text Tennis" but never actually met.....

Then we moved house.

Apparently we  are supposed to repeat the procedure all over again. Didn't know that, I assumed (ok, I know; my first mistake!) that one EA talks to another EA. They don't. So, I contact the EWO (which always makes me think of ChewBacca from Star Wars!) by phone, well actually I didn't initially as I called the office and she was out, but I left my name, address and number and was told I'd get some stuff in the post.
Two weeks later.....I called back as I hadn't heard anything (technically at this point I'm breaking the law by not registering Daisy with a local school) and was told that "no, we don't send anything out to you, you have to write to us with your daughter's name and date of birth and any contact names from your previous EA". So the person who answered the phone couldn't tell me this?? It's a dedicated phone number. So, I chat to the EWO and she says that her "inbox is very full" and that Daisy "isn't a priority".

WHY THE HELL NOT?????
Did I tell her that Daisy is autistic? No.
Should it make a difference? No.

Should any parent be told that their child isn't a priority? Of course not! She's a priority to me! I'm a parent, it comes with the territory for Pete's Sake!

I'm sure that the EWO's are busy. I fully accept that, but this one needs to learn to think before she speaks! I don't want to be told that my child is at the bottom of a very large pile.

I have written my letter, and casually mentioned that Daisy is autistic......I wonder if that will speed things up at all.....I await her reply with interest.

Every Disabled Child Doesn't Always Matter....

A few weeks ago I (and many others) were approached by the Every Disabled Child Matters organisation to email our prospective parliamentary candidates to ask them, should their party win the up-coming election, to sign an EDM supprting disabled children and their families:

   "In the lead up to the next General Election, I will be watching with interest to

see the commitments that you make for the political term ahead.

As a supporter of the Every Disabled Child Matters (EDCM) campaign, I ask that
one of the areas that you focus on in your time as an MP is meeting local
disabled children and their families and finding out about the services they
use. I also ask for you to raise any areas of concern in Parliament.

I therefore invite you to sign EDCM’s Constituency Pledge. This is a series of
five commitments that you are signing up to undertake if you are elected as my
local MP. The Constituency Pledge asks you to:

1. Meet with disabled children, young people and their families to discuss key issues of concern to them

2. Raise these issues of concern, and promote rights and resources, for disabled
children, young people and families from my constituency in Parliament

3. Visit local services for disabled children and their families on a regular
basis

4. Support measures to transform services for disabled children and their
families, such as the Aiming High for Disabled Children (AHDC) programme in
England

5. Find out how funding is being used in my constituency to improve services for
disabled children, young people and their families


If you agree, you can find out more information and download a copy of the EDCM
Constituency Pledge at www.edcm.org.uk/constituencypledgeppcs


Please sign it and send a copy through to EDCM either by post: Every Disabled
Child Matters, c/o National Children's Bureau, 8 Wakley Street, London EC1V 7QE,

email: info@edcm.org.uk, or by fax: 020 7843 6313.

Please could you reply to let me know if you will be signing the EDCM
Constituency Pledge.

Yours sincerely"

I received a very positive response from my Labour Candidate (John Piasecki) who readily agreed to sign the EDCM Pledge.
I received this from my Conservative Candidate:

" Thank you for your email.

My party's position on the issue you raise is as follows:

Whilst we share many of the objectives of the EDCM campaign, and are determined to build on this agenda, we need to be clear that due to the appalling state of the public finances, some of the specific pledges will need to be carefully assessed in a wider review of the public finances should we be fortunate enough to win the general election. We will not make unfunded commitments which we then might not be able to deliver. It is unfair to falsely raise the expectations of disabled children and their families.

Whilst we are not in a position to sign the Constituency Pledge, I thought it would be helpful to assure you that making life easier for disabled children and their families will be a priority for a future Conservative Government. That is why we have set out a range of positive policies which will aim to make a real difference to the lives of families with disabled children. These include:

increasing the number of health visitors;

simplifying the assessment process for accessing services;

making it easier for parents to access respite care;

looking carefully at ensuring that Local Authorities accurately assess children’s eligibility for Special Educational Needs statements; and

putting more power and control into the hands of parents and young disabled people themselves so that they can ensure that they receive the right care and support to best suit their needs.

The Conservative Party will continue to meet with EDCM on a regular basis and work constructively with them in the future to improve the lives of disabled children and their families.

Best wishes
Phillip Lee

I am still awating a reply from the LibDem representative!

To say that I am unimpressed with the response from the Conservative chappie is an understatement. I have always voted "blue" in the past.....that may well change.

Young, Autistic and Stagestruck on Channel 4.

I looked forward to this programme SO much. At last...a much needed vault into the spotlight to show those "tutters" and blatant disbelievers EXACTLY what we have to go through on a day-to-day basis.

I have to say, it started well. The beautiful little girl called Mollie was having a bit of a melt-down and tearing round the garden in the way that PDA children do. Fantastic, I thought....this could be Daisy. Let's see how her mum deals with it.....no wait.....let's cut to another child displaying autistic behaviours, OK....I get that, all autistic people are different just like NT people.....now let's cut to Ben.....a fantastic kid who was far more intelligent than the person behind the camera who asked him some, frankly, idiot questions.

After that, it just got worse. Much worse. We we introduced to 2 directors from the Lyric Theatre who had never worked with Autistic people before. This showed. Much. They were deeply patronising and immediately set up a "them and us" sitation.

I was deeply annoyed to see that Mollie was allowed to take herself off and hide under a curtain. The camera kept returning to Mollie and showing her peeping out from under the curtain. The only point of this exercise was to make her look cute. I simply cannot see any other reason. Let's get this utterly clear: PDA ISN'T CUTE. It's nasty and pervasive. Not cute. Ever. If  Daisy displayed that behaviour it would be because she was stressed to the hilt. You can't put a PDA child (I can't speak about PDA adults as I don't have one yet!) in a room full of unpredictable strangers and not get a reaction. A big, big part of PDA is their deep anxiety caused by not knowing what is going to happen next and their inability to predict what might happen. This is why Daisy is a complete control freak...if she is in control then she knows EXACTLY what is coming next. It would have been impossible for Mollie to be in control. Hence the safety of the curtain.

We were told that there was a team of specialised carers on hand at all times. Certainly didn't see any sign of them in Mollie's case. Where were they? Why were they not on camera? How much more enlightening for the audience to see just how much effort would have gone into helping Mollie. Maybe it just doesn't make good TV....

For the first time in my life I complained about a TV programme.

I will be watching again, though. If only in the hope that it will get better. There will never be any justification in causing an Autistic person undue stress though. 

Political Animal

Well...if you look at the 3 "leading men" in the forthcoming election the only animal that springs immediately to mind is a small bewildered rodent! I mean....honestly! I have no doubt that their mothers love them very much and their wives are very supportive and they are all awfully nice chaps, but run the country? Oh, please! We need someone with "balls", and I don't think we have one!

Anyway, the reason for the political theme, is that the Tory party have "promised" (hmm, we all know what that means) to "simplify the benefits" system and change the Satan-Devised DLA form. Yep. This is a good thing, as I have said before I defy anyone not to want to swallow a handful of Prozac after filling out what must be one of the more confusing and depressing forms ever devised! BUT....it still isn't enough! Why must we fill out the forms every year anyway? It took 5 years and 7 forms for the DLA peeps to understand that Autism doesn't go away and that Daisy will be Autistic until the day she dies! If we get a diagnosis from a professional (and we must) and it is quite clear that the disability is lifelong, why must we continue to drag our emotions over broken glass every time, just so we can improve our children's lives? OK, if the situation changes then re-assess us. I would happily tell the DLA that Daisy no longer needs the level of care her condition currently demands, but it aint gonna happen anytime soon! She is becoming more of a threat and a danger the older she gets....

Why does it take an election to get MPs to promise to clean my bathtub with their own toothbrush if only I'd vote for them? Why do they only want to know what we want when they might get elected? People have been campaigning for YEARS to get changes to the benefits system, but only now (with an election a matter of weeks away) do they start to listen. It's not as if we weren't shouting loudly enough before either! It's not about money...that's another post entirely!...it's about simplification and disabled people being able to take care and take part in their own future.

Oh....the teapot is calling! may just have to indulge in a jaffa cake too!

Lawks! Where does the time go?

Well, we went off to the dentist again on Monday. I can't believe that it has come along so quickly!

Again...it was amazing! This time - despite declaring on the way there that she was going to "hide behind that cupboard again" - Daisy was outstanding! We had a guided tour of the surgery from admin to x-ray (see what I did there?!) and it was very interesting and enjoyable! Daisy answered questions (crikey! that's a HUGE step forward!) and even asked a few herself! It just goes to show that when my autistic daughter (I can't speak for all autistic children, obviously) is treated the right way, she is just brilliant!

Next time, she is going to learn how to make the chair go up and down and what all the instruments are for!

Well, that was the good news. Now for the bad! Daisy has been very very angry lately. She constantly flies off the handle for the smallest of reasons sometimes, and is sooo aggressive, violent and abusive. Part of it is that she isn't allowed to do something or what she wants to do is either impossible or totally impractical but she doesn't see that, and explodes. Big time. There is no reasoning with her, as that makes her worse, so she just has to be ignored. Which is very hard. If she was having an anxiety meltdown then I could hug her and give the attention and reassurance that she craves....but this? No way...get too close and she will strike out, it's only been pure luck that she hasn't hurt me so far. One day she will...and then what? The only way to avoid her violence and aggression at not getting her own way is to give in all the time, and that simply isn't possible. Sometimes it's too dangerous or it's a punishment or it just isn't possible (as in, I can't afford a Mongolian pony and it won't fit in the garden!).

She has injured me in the past, but that is different somehow....then it's always because I'm preventing her from "bolting" and I'm keeping her safe. I can understand her frustration at that, she simply doesn't see the danger. Meltdowns from sheer temper is something new. I see a trip to CAHMS looming........Sigh.

On a Mission

Well, I've finally got around to something I have been meaning to do for ages.

I am off on a journey (around the houses, I strongly suspect!) to discover if I can get the "rules" of DLA changed. Quite possibly it would be easier to scale Everest in flip-flops but, I can but try!

The reasons are quite simple.

Daisy is "recognised" as being Autistic by the folks at the DLA office. We/she were assessed again via that Devil-sent form which is enough to have me reaching for the Prozac and it was decided (quite rightly too) that Daisy is always going to be disabled and will not improve so we no longer have to fill in the form on an annual basis.

That was a bit of a painful moment, I have to admit. I mean I know it already, but it still stung

Anyways, with slightly thicker carapace than when I started, I asked why we weren't eligible for the higher rate of  mobility as Daisy is a danger to herself and others and we NEED a blue badge. She is a "bolter" and will go in any direction on impulse and will also try to push me into the paths of moving cars if she is in melt-down and I need to get her to safety.

The answer I got was because she doesn't have RESTRICTED mobility we don't qualify. I understand this, but I don't accept it. Her uber-mobility makes her more of a danger to herself and others than anyone with restricted mobility. She is akin to a small frightened animal and will run anywhere she can to get away from whatever it is that has spooked her. She is very nervy around cars as they tend to start their engines (well, at least the drivers do!) and she doesn't know when it's going to happen.

The people who work for the DLA department, can't help me as they only follow the rules and don't make them. So, here starteth my quest.......Let's see what I can achieve for autistic children and autism awareness. Wish me luck.....I'm going in!

Oooh.....done it now!

Yes.
I did it.
I finally grabbed both my courage and the moment and told Daisy that The Yellow One is no longer welcome in our house.
SpongeBob is banned!
What kind of an evil mother am I?!

Well, for the benefit of the tape:
I am tired of the continuous references to you-know-who.
I am tired of the repeated efforts to relive entire episodes of that programme....complete with voices.
I am very tired of the echolalia associated with Square Bob. It is NEVER as bad as when he has infiltrated our living room.
I have had quite enough of being spoken to like I am the stoopid one (aka Patrick) and not the pink cartoon character.
If I have to go looking for my spatula one more time because she has made off with it to grill "Krabby Patties" with I swear they will have to send round those very nice and sympathetic people in the white coats!

So....I told her.
"No more" I said. "SpongeBob is banned. Your attitude sucks."
Possibly the last comment was a bit out of order, but it worked. No hissy fit, no begging (I was dreading that!) no nothing.
Frankly, I'm a bit worried now!
It's never been this easy before......

D Day

That's "Dentist Day" to the uninitiated.
Not, as you previously thought, Thursday.
It started early....about a fortnight earlier to be more precise, so that I could really saturate Daisy with references to D Day. We had to change the appointment time to 9am so that we could be first in with no waiting around. Daisy doesn't "do" waiting. Oh, and then we had to check that the dentist was female, as otherwise it would have been a HUGE waste of time for everyone.
D Day arrived and began at a very Daisy-Unfriendly 7.15am. I was waiting for being thoroughly told-off for disturbing her beauty sleep but was pleasantly surprised by her need to listen to the alarm clock going "beepity beep beep beep". My interest in the noise wore off far earlier than hers, but at least she was awake and happy......sitting on the sofa watching.....yep. The Square Yellow One.
After the usual minefield that is getting dressed we ended up at the dentist EARLY!!
At this point I have to say that the dentist was FABULOUS!!!!!! She didn't mind that Daisy spent the whole 30 minute appointment in the waiting area. She wasn't fazed that Daisy squeaks and barks and growls and tries to bite if she is stressed.  She was interested in PDA and understood it straight away and didn't look at me as if I was the one who was barking....!
OK...so she never got to see Daisy's teeth, but it's all about trust. Daisy will get there, this dentist knows the difference between goats and sheep!
Roll on our next appointment!

Oh.....like THAT is it??

OK.....I am mildly aware that the world outside is having a few financial problems. I'm not completely out of touch. Well, actually that's not strictly true as I was out of touch earlier today as my ISP, in their wisdom, decided to suspend my services. Despite the fact that I was.......yeah, IN CREDIT!!! Argh. I said. Then I said some more 4 letter words. Then I called them, only to be told that the payment I made was charged to my account and not taken off it! Blimey, that's a new one. So the end result is that I get my services reconnected and I get a free upgrade. Apparently this makes my pooter go faster. Time will tell. The up-side of this is that we also "lost" the cable channels on the TV. The entire morning was a Sponge Bob-free zone. Words do not exisit to convey the extreme dislike that I have of  the yellow fellow. It is rarely funny, never educational and frequently just purile. Why on earth does Nick Toons persist on showing the Yellow One all day every day through the half-term holidays? What about the kids who DON'T like the Yellow One? What about the poor parents who have to listen to him? Hell, WHAT ABOUT ME?????!!!!! Bad enough that he has taken over the TV, but Daisy runs the length of the house, rock-pooling net raised above her head, "buzzing" and catching jelly-fish! She hasn't named the net "Ole Reliable" yet.......

Well...this is it. My first blog. I'm a blog virgin!



OK...Now I've calmed down I guess some introduction is required? Well, for the benefit of the hard of thinking, this blog is about Daisy. She's Autistic. The clue is in the title. It is something I find myself HAVING to say on a regular basis to those people who assume that Daisy and I are some kind of free entertainment, and that's it's perfectly acceptable to stare and point and laugh at us when poor Daisy is having a melt-down and I am getting beaten-up. Maybe I should take a hat out with us and pass it round the crowd? All donations to the National Autistic Society!



Daisy is now 8 years old and was diagnosed with PDA/Autism when she was almost 5. Oh, never heard of PDA? OK...neither had I. It's Pathological Demand Avoidance syndrome and it does exactly what it says on the tin. Daisy would rather die than comply. Not because she won't but because she can't. It just looks like won't. So she appears to be a total spoilt brat, but in fact is simply a very anxious frightened little girl who is desperately struggling with the world around her.



She is educated full time at home, by yours truely. I can honestly say that removing her from school was the best thing I could have done for her as she was becoming ill and would have had a breakdown. She has made great progress in the year since she left school and can read and write with enthusiasm which was sadly lacking when she was at school!



Well, the excitement has quite worn me out AND it's Daisy's bathtime....so TTFN!