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!