It has been a trying last few days.
Sunday I went out all day and Dinky was not happy with me leaving her with my dad. He still doesn’t GET Dinky. He nods in all the right places but as I have said previously I doubt he will believe anything until it is in black and white.
Sunday was good though, I don’t know how much we have raised but it seems we have raised a fair bit. The Pub was good too! (YAY… finally managed a night out!)
Well, as much as I enjoyed myself, I was woken by Dinky screaming at my dad and him trying to wrestle her away from my bedroom door. Not exactly the best way to wake up! So bleary eyed, I sort my dad out, as he had inadvertently set her off by saying something the day before he wasn’t sticking to. So AGAIN I explain that he is a muppet. I calm Dinky down to a point, but we didn’t manage t go out for the day as she was in 15 year old mode. Anything she couldn’t control, like the fly, or the time, or the fact that we cant rewind live TV, and she was off slamming doors, screaming telling me she was going to kill me. Charming… cheers dinky! She was also bouncing off the walls, so much so she was seriously giving me a headache. So my dad decided to take her out…
He said he’d take her on her bike… Nope she wanted the scooter.
He said they will go after 3pm… Nope Dinky wanted to go out at 1pm.
He said wear her usual trainers… Nope she wanted the new, school trainers.
He said put the helmet on… Nope, she didn’t want to.
When I finally managed to her to agree to wear her usual trainers she began seriously kicking off. My dad said ‘Well you are not going then!’ She kicked off even more…
Finally I put her trainers on for her, and at 3.40pm they go on the bike… 4.15pm they are back.
We have dinner and then she goes in the bath. Soaked my entire bathroom and used the whole half bottle of Elmo bath wash! She had also got out of the bath got some toilet paper and had wet it to throw on the ceiling!
At 6.30pm I got her to take her melatonin and that was that!
Today Dinky went to her group to the farm. On the way there she was saying she had no energy and couldn’t walk. She was talking non stop. I asked why her mouth was still going if she had run out of energy and her response was… “Mouths don’t runned out of emergy!” No, obviously not! I had already had to explain what ‘being a handful’ meant, why the sun and the moon were both up, why ducks and swans swim in our pond together, why she doesn’t go to the school right next to our house, why she cant phone granddad to tell him that she was going to the farm, and so on and so forth….
So she was off and instead of sitting on my backside for a few hours I had to come back, clean the kitchen, put all the toys she HASNT lined up away, dusted the living room, removed the toilet roll paste from the ceiling, cleaned out and fed the guineas and then let the FLW (Family Link Worker) in.
Now she seems nice enough, but I would be lying if after spending time with the local autism group, and trying to get some respite in, if I have to explain PDA to anyone else I think my head will explode!
Also I am very close to banging my head against the wall if anyone else says we need a diagnosis to move forward!
The whole meeting was of me trying to tell her that her ideas wont work and she is wrong about a number of things.
No you DO NOT need a diagnosis for DLA
No sticker charts DO NOT work for Dinky
No you don’t need a diagnosis to join a support group
No you don’t need a diagnosis to join the special needs group or special needs swimming- DLA is the gateway
No you don’t need a diagnosis for our counties Short breaks service, but getting anywhere takes time
Ye I have done visual timetables
Yes I have done now and next
Yes I have read magic 1,2,3 and watched supernanny, and joined parenting groups… parenting Dinky IS NOT like parenting a NT child
PDA strategies work
Just because YOU haven’t heard of it DOESNT mean it doesn’t exist.
Just because we get to school on time DOESNT mean it isn’t a battle EVERY morning… we just start 3 HOURS earlier than most people
Being in a hostel for 11 months is NOT a cause for a child spinning for half hour when they get home from school, to line up toys, not know how to keep friends, hide or make excuses for simple things and have a speech and language delay of longer than the homelessness!
Yes I have found all this out for myself because I was referred to FLW services 6 months ago and this is the first visit, and the CAF has been open since January… yet we have only had one (extremely low turnout) TAC meeting and didn’t include anyone other than people who have only met her 2 or 3 times and not for that long!
I went over the paed appointment and then the phone call and paperwork from the clinical director of paediatrics for our trust.
So she is coming back just under a week after Dinky gone back to school for some more patronising ideas, to fill out a star thing, and to (not so subtly) judge my parenting. Sounds like a hoot!
I almost wet myself laughing hen she said that the idea of her being involved is ‘early intervention’… I told her she is 6 months late for early, but if she had any bright ideas, then intervention is welcome!
I am not taking any more crap.. I don’t want to hear all the talk… I want action!
By this tie next year I hope to get dinky a diagnosis, for her to have a statement and for her to be better supported in school!
Next week… the gloves are on!