This should probably be 3 seperate posts!

I have been hit with a head cold over the bank holiday weekend, which has meant I’ve not been able to write on here.

Dinky also had the head cold, however she is not as able to tell me what is going on for her, Friday she laid on the sofa ALL day, this is very unlike her, Saturday she didn’t want to go to her SN group because the SN group leader wasn’t going to be there, so wouldn’t get ready. In the end she decided to go, but it was too late, by the time she had changed her mind it had already started and by the time we would have got there, the session would have been nearly over. Of course, I got the blame!

My dad came over bank holiday Monday and Dinky was not happy! It is my birthday today, however my dad asked to have my birthday early as to give me my present and a card. Dinky agreed to it, but was whiny and challenging the whole day. My dad NEVER helps matters, when she hit him, he grabbed her arm, looked quite scary and hissed at her. I told him to leave it! She was my daughter.

Yesterday- I went to the local special school for an autism awareness day. The event organiser (the local autism parent support group- not the charity-chair person), had organised a crèche and got Dinky a place within the crèche! Obviously they were more than used to children with varying special needs, although they generally deal with the 11-18 year olds, and were happy to take her on for the day.

So there I was at 9:30 with Dinky waiting for a lovely mum in the group to give us a lift there, blowing my nose every 5-10 minutes and Dinky was spinning. I so badly wanted to cancel! However, I knew that the childcare had been arranged so I could go, and I had been to work feeling worse, so I decided to brave it.

Dinky played her new favourite song ‘let it go’ from frozen on the way there. She was fine, until a lady she didn’t know was talking to the mum who had given us the lift. Then it went from bad to worse as we then had to queue up and there was a probably 2-3 year old child in front of us, there was no sign for the crèche that I could see and Dinky was rapidly devolving into meltdown. She was screaming that she wasn’t going in, it was for babies, and that she wasn’t staying. I managed to get her to come back into the lobby, and then she went off on one again, was hiding under the counter and refusing to move, by this point she had very little language and was more like a toddler.

One of the other mums I know from the parent support group, who had a daughter at the same infant that first had dinky (and another that still goes there), came over to offer chocolate to see if that would entice her to the crèche. Then the autism behaviour specialist booked to do parental 1:1s came to lend a hand. She got the staff to set up the sensory room and we managed calmly and softly to get Dinky to go in there. I sat with her as she had the bubble tube, the fibre optic curtain and something else going. There was a touchy feely material cover to the bench, and we were feeling it. Dinky got all the plastic balls out of the case and spread them all over the sensory room. It didn’t take much longer before she had calmed down. She had 2:1 at this point, and they were very good at calming her and getting her settled in. Then I left her.

I went to sign up to the behaviour 1:1s but it was full, in getting Dinky settled I missed out on the sessions. Or I thought I had, the organiser saw me and asked how it was going having heard about Dinky’s little meltdown. I told her I left Dinky happy with 2 staff happy to play with her, I asked if it was the only workshop, she said yes, but put my name down anyway.

I went in, and spoke to SALT who said that Dinky would get more support in special school. I spoke to the rather overenthusiastic, and a bit full on, but lovely manager of a sensory art scheme. I found some other people to talk to and then was told that the behaviour specialist had agreed to add me to the end. I was sitting outside waiting, and one of the people who was watching Dinky dashed past and asked if she ever slept, I said no! She said ‘she is rather energetic isn’t she!’ which made me laugh! Then I saw dinky through the door and then through the classroom window, in the gardens running about!

The Autism behaviour specialist was really good! She said that she knew about PDA, and that as it is not in the manuals Dinky would probably get a diagnosis of ASD with PDA presentation. She said “I couldn’t give you any strategies as I would have to observe her first, most children with PDA can use autism strategies, they just need to be tweaked to the individual, PDA is interesting like that, you never know which bits will need to be added, taken away, or tweaked as they are so variable” She said I should try and get funding
from the social worker.

It was refreshing not to be given the spiel and the rubbish.

I had a beautiful ploughman’s lunch IN PEACE! Bliss!

Apparently Dinky was doing really well in there running around with the two ladies.

So I hung out with a few other parents, and talked to someone regarding direct payments, and sat down, in peace! I went to see how Dinky was getting on as someone wanted a child to play with some toys they had out. Dinky wasn’t happy, as her iPad didn’t have enough 3G signal (really old iPad) to go on Netflix. I had turned up at a bad moment. She did calm down, the two ladies were asking questions about how she is, how she sleeps, how I do it with little to no support, especially with her out of school. I told them the truth, how else was I supposed to do it? I just do.
The head of the secondary aged children came and spoke to me, he had been spending some time with Dinky, but she didn’t seem to like him very much. He asked me what her diagnosis is. I told him she only has a provisional diagnosis at the moment but is says PDA, but also says PDA with sensory issues, hyperactivity and dyspraxia. He laughed, rubbed the back of his neck and said “Definitely see why they say hyperactivity!” and let out an audible puff off air. He said he was tired just watching her!

Then he said that he didn’t know if this school was right for her. He asked if I had looked at independent schools which could offer perhaps 2:1.

I hadn’t even got as far as thinking she would need 1:1 in special school!  

He said that she was bright and yet she was falling behind, she needs such an individualised curriculum. Even in special school the idea is to group children together, yet Dinky needs to be able to dip in and out of a group of children and not feel pressured to do as they are doing. He also agreed that EBD wouldn’t be good for her as she would pick up on the behaviours of the other children.

He said she needs such a niche placement, yet is unsure if such thing exists. 

My head cold wooliness meant I didn’t get a chance to ask him more in depth questions. My head was ringing. What if this ISNT the right placement for Dinky? What If I am pushing for the wrong thing? What do I do now?

I went back to the hall for a bit as the two ladies said they were having fun, yet would need a day off to recover from Dinky!

When it was almost time to go I went to transition her out. The ladies were brilliant with her. Dinky was mixing ‘potions’ like on her 2DS smurfs game. She was mixing sand with bubble mix and different types of liquid soaps. They brought me one out that she had made earlier and it smelt lovely, they didn’t know how she could get such random things to smell so nice, but it was true, it was a lovely unique soft smell.

She was really enjoying the sand and the tunnels. The ladies were really good at helping me get her ready to leave, they even came out to the car with us. Dinky asked if she could go to school there! Then AMAZINGLY she gave one of the ladies a hug. They seemed besotted with her (which is far too easy as she is awesome!). When we got home there was no challenging behaviour (not until bedtime). She changed her how I feel today to ‘content’. It was wonderful. I was so pleased that she had such a positive experience after the fight to get her in there.


Then there is today.
Dinky started the day by saying it was my birthday, but I already had a birthday. She still gave me a hug, but she dragged me out of bed at 6am. She was running around, hanging off things, watching tv upside down and messing about with the dog, who enjoyed it.

we took Sky for a walk, and Dinky was loving running about with her. I got a call from the special school, Dinky’s jumper was still in the sensory room, and the lady was bringing it after school. Dinky had given her our address!

On the way home she asked how old I was. I said 28.. in the best sultan voice from Aladdin she said “28 and still haven’t found a man to love you”. I couldn’t help laughing! She is so funny!

Dinky asked to go to the SN clubhouse, which we did. I asked her if we should go to the chip shop we used to go to after getting Sky a treat from the pet shop there. She said yes. However it was a different story once we were there. She wanted fish, even though I know she wouldn’t eat it. I also didn’t have enough cash for fish and they didn’t take cards. Meltdown.
She wouldn’t move from the shop because I think she believes that if she moves from the place, the thing she wants will not happen, and if she stays there is more chance of it happening. So I have been very careful not to give in as it could get trickier as she gets older. I gave her the choices she refused. She ended up coming with me to the co-op where we got a cheese straw, yogurt and apple slices. She told the cashier “I ruined mummy’s birthday” and burst into tears. I felt so bad for her. I told her she hadn’t ruined my birthday, but it would be great if we could go to the SN clubhouse, have a good time and then leave nicely as we had to be back for the lady. Dinky had lots of fun in the clubhouse. She was cooking plastic food (and she wouldn’t allow it to be different from the shapes they were), and dishing it up to me and the 3 dolls that were set up as a tea party by the staff. I took some pictures as Dinky hasn’t done a tea party since she was 3! All of a sudden the baby doll cried and dinky’s face was a picture, so I clicked  and got it! Bless her it was hilarious! she left the room and refused to go back in! Then we went into the sensory room, and then the soft play room. I was building big towers and she was jumping off a block into them! It was great fun!

She didn’t leave as nicely as I had hoped, but we made the bus! She was not happy with the strangers on the bus again but did well, however lashed out at me when we got off the bus.
The rest of my birthday has been a non event. I didn’t expect it to be any different if I am honest. My dad phoning and treating me like a 5 year old didn’t help matters!
I am going to finish this, treat myself to a vodka and pineapple drink watch greys anatomy and go to bed, hoping that the illness and birthday control issues are behind us!

I am looking forward to Autism’s got talent on Saturday though!


3 thoughts on “This should probably be 3 seperate posts!

  1. Pingback: Newsletter 12th May | Spectrum Bloggers Network

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