Yesterday we went out for my dad’s birthday treat. I asked him for months what he wanted for his birthday in the end he picked a day out. Which would be fine, if he didn’t induce meltdowns! So I was apprehensive and asked him if he was 100% sure he didn’t want an ‘I O U one arsenal football shirt when it comes out’? Apparently not… Great.
It wasn’t long before I was right to be apprehensive, we hadn’t even entered London and I was already hissing “just leave her be”.
We went to the arsenal shop and she just was not happy, my dad had told her to put her ear defenders on for the tube and instantly she refused, meaning she had all that sensory input which never made sense before a few months ago, but now I understand a bit more, and it was unleashed on the way to there.
She was still fragile… Cue dad, while I was trying to pay for his gift Dinky is in a clothing stand screaming, I turn back round and dad is trying to carry her out of the shop because he is embarrassed, so she punches him a few times… Once I’m done, I see Dinky has gone back to the clothing stand and is trying to self regulate which is brilliant, but my dad is still barking orders, I calm Dinky a bit, but she has decided she won’t talk to him and I have to carry her because her legs don’t work and I am bossy.
By the time we get back on the tube to go to the aquarium, Dinky has calmed a little and had her iPad out.
We went down to mc Donald’s, only to find they were shut for 1 day, typically on the one day we decide to go down there! Another physical meltdown and refusal to walk.
Once I’d calmed Dinky down we decided to go for hot dogs and ice cream.
I had a voicemail. I listened to it, it was the social worker.
Now, I know what I said in the other post about her, but seeing as we can’t change social worker, it would be stupid to the highest level to turn down support when offered, especially from social services as generally they are bloody useless in this area. So I am giving her one more chance.
She said they have (yet again) changed their minds about how they are going to provide the support for the next 12 weeks. I’m not even sure of how it works as I called her outside the aquarium, and I can’t concentrate with so much noise. The gist of it is that it is a p card, like a debit card that they will pay in the allowance weekly. She is going to meet us at the special needs club house and explain it in more detail. At least that way Dinky will be in the sandpit and therefore she won’t be overly fussed by us having a conversation.
This doesn’t mean I have forgiven her for not listening! I will have the diagnosis letter and some leaflets on PDA and autism for her to read before she sees us again, the emphasis will be on her knowing I know best where dinky is concerned unless the SW is sufficiently trained in ASD-PDA to be able to state otherwise!
Dad and Dinky enjoyed the aquarium. Dinky had a few issues with a class of children screeching and shouting for what seemed to be no good reason, as fish are not THAT exciting!
Dinky showed my dad all her favourite bits, as we have been to the aquarium quite a few times. She wasn’t happy that we didn’t do the London eye or park that we usually do, but I had explained to her leading up to yesterday that we were not going to be doing that, and that next time I will make sure she has her normal trip. I think she found it a bit easier as it wasn’t the usual trip with me, as her grandad was there.
I was supposed to be going out and celebrating my PDA victory having the diagnosis for Dinky and therefore one less battle now!
My dad was going to have dinky, but by the time we got back she had just had enough. My dad didn’t help and set her off again with so many direct demands.
Meltdown ensued, dinky kicked my dad right in the face after he tried to grab hold of her. He lost his temper and growled at her.
I couldn’t go out then. Dinky wouldn’t get ready for bed, let alone go up to her room.
I had also been a little annoyed and no longer in the mood to go.
So we watched England lose at home. Which was horrible, but expected. Luis Suarez was just too much for the England defence.
Today, well, today has been one of ‘those’ days.
Dinky didn’t wake me until 5.30am, but by the state of my living room, she had been up for a while before that!
She told me that our dog had chewed through her lead… Great!
Just another thing added to the list of broken or chewed things this week…
So we got ready and went to town. Dinky has not been wearing her wrist reins lately, as she point blank refuses to put them on,and even if I wrestle to get them on, she just takes them off.
In town dinky needed to have her photo taken for her bus pass and was not happy. So I took her to the toy shop to have a look around. We then went to go get a few things I needed and dinky started kicking up a stink. She said she needed the toilet and would wet herself if we didn’t leave. So I dropped everything and we left. She then refused to walk and when she did she wasn’t looking where she was going and was bumping into people.
One of the things that came out of the occupational therapy appointment a few months back was Dinky being under responsive to touch at times. I know better than to give her any demands and even talking to her in this state is not even worth it, although my sheer frustration and sleep deprivation meant that I unfortunately, wasn’t able to stop myself telling her I wasn’t too impressed about not being able to just get the things I needed. Which obviously didn’t help matters, but didn’t make them worse as she wasn’t listening and couldn’t say what I said… Off into Dinky’s world- which brings me back to the under responsive touch, at this point I had to almost push her to get her to go in the right direction as talking or normal touch wouldn’t register.
She went to the toilet and then refused to wash her hands as the water was too hot.
When we went through the gardens dinky was still not listening, and wasn’t looking where she was going, she almost took out 2 elderly people and I had to literally give her a shove in one direction and again in the other, she then stopped right in front of me and to stop myself tripping over her, I had to shove her again, annoyed and frustrated I said it doesn’t help if she stops right in front of me.
Then someone got my attention.
He said “excuse me, I don’t mean to tell you how to raise your kid… BUT…. You shouldn’t be pushing your kid around like that, if social services see that, they will take the kid away.”
Dinky had started to walk off, so out of ear shot I told him to fuck off and keep his nose out!
He kept on about how it isn’t nice and that I should let her walk on her own. Sure Dinky doesn’t look autistic but she had a hat on saying ‘Auty not naughty”. I said I was guiding her as she wasn’t looking where she was going and I’m sure she would have done more damage to the elderly ladies than I did by giving her a gentle push out of the way.
Looking back I can see it may be considered a bit heavy handed, but Dinky is not a typical child. If I had said ‘look out’ or ‘watch where you are going’ Dinky would have just got more annoyed, looked at the floor or around her, and still have taken them out!
He said “everyone is watching how you are treating that child”
Dinky then piped up “shut up! Leave mummy ALONE!”
I shouted (not my best moment) “I’m guiding my autistic daughter… I hope that’s ok with you!” (Even now I’m cringing!)
Dinky then said “mummy helps me” which melted me and calmed me almost instantly.
As I walked off with her (and she was now back to paying attention to walking) I heard someone say to him “that child’s hat says auty not naughty, which means she is autistic”.
I then took dinky to the bus stop and we got the bus home. I couldn’t help it. I cried. I know I didn’t handle the situation well, and I have been trying to get support, it is coming, but it has taken so long.
Dinky then fell asleep on the bus! My child who rarely sleeps at night fell asleep on the bus!!!
Dinky was bouncing around at home and then we went for a dog walk with another mum from the local autism group. We set the world to rights, and then went to an active club for children with disabilities.
I did say to them that she has PDA, but they didn’t understand it, not even the bit where I said “please don’t give her direct demands”
So they blew a whistle near her and told her to line up. Yes, blooming marvellous! I then had to try and calm her down as she was destroying the circuit they had set up. She found somewhere to hide, but it was part of the circuit and she was in the way. Someone gave her MORE direct instructions, so she got physical and I had to remove her. I was then punched and slapped by Dinky as I had to hold onto her. I managed to calm her down and she played with my phone for a bit, while the others did the circuit. Once the demand and expectation to join in had gone, she actually joined in. She got a bit much at times, but she enjoyed it. Leaving was difficult, but we did.
All in all it has been a difficult two days and dinky has tried really hard, but it has just been too much…
Football tomorrow. I can see it being fun…. Or not.