This morning when Dinky was going to school I was going to host the social workers.
Dinky really struggled this morning, she was happy to go to school, but very anxious and deliberately went as slow as possible, but by happy coincidence we were up at 5am- so it wasn’t a problem!
She went in the car ok.
I tidied up ready for the social workers. Dinky’s social worker had to bring a friend, because parent carer needs assessments and personal budgets are not normally in the remit of the referrals and assessments team. So we had someone from the child disability team come out and do the forms with us.
They came in and sat on the sofa and pulled out a booklet… She handed me an identical copy. It was the same format at other ‘star’ maps I have completed- the family star and the recovery star. There are sections with 4 statements and I have to pick which statement fits the situation. These were child disability forms, so there were a couple of questions that weren’t relevant.
I think they both realised after a couple of questions that I was right, that the severity of a persons autistic spectrum condition is not linked to their verbal or intellectual ability, but the severity of the symptoms of which the condition was diagnosed.
They realised just how difficult it was for both of us dealing with the PDA. Obviously Dinky struggles with the condition, my role is slightly easier than hers, but I have to try and manage her environment in order to keep her on an even keel.
As it turns out Dinky has a very high level of need and due to my PTSD, they agreed I need more help to meet her needs and mine. They are going to try and get me on a team teach course so that I can learn how to restrain Dinky properly, for her safety and mine. They said they can’t promise when it will be done but that they will do their best.
They left a booklet on personal budgets and other information.
I still had a couple of hours while Dinky was at school, so I managed to do some bits that I needed to do.
I waited at 4pm and saw the car pull up. I ran down to open the door, but Dinky was sat in the car still. The 1:1 said that she hadn’t spoken all the way home. She had no grin and no bounce. Dinky doesn’t do tired, so it wasn’t that, she also didn’t look tired, she looked like she had shut down.
I got her inside and asked her what she had done at school. She said ‘I don’t remember’. She asked for Disney infinity on, and that was all I got out of her.
Her link book said that she was ‘happy’ to do assessments in maths and speech. However I’m not sure that is true, considering they later went on to say that during the speech assessment Dinky fell off a ball and bashed her head on a cabinet. It probably stopped the assessment, and part of me wonders why the hell she was on a ball during a speech assessment and why they did carry on when she did? To me it screams avoidant/anxious behaviour. She need not have hurt herself to get out of it.
Poor kid has been in the wars as she also hurt herself in the gym, cutting her chin.
She was completely engaged in her game, I had to give her visuals to pick dinner, I had to put her in her new wheels kicking and screaming to walk the dog.
I left her be, but had nothing out of her for 2 hours.
Bedtime was interesting, but her minion onesie was dry, so before she went to bed I got her dressed and she said “Me minion”. That was It, that was all she said to me. This is so unlike Dinky. Dinky doesn’t do shut outs, Dinky does full blown riots. Neither is good for her, but obviously shut downs are less destructive and painful.
When anything is the opposite of what it should be, it is cause for concern. I’m going to check on Dinky before I go to bed even though the nurse said she was fine.
I knew this would be tough for Dinky, she is starting all over again, in a place she doesn’t know. I was so relieved that yesterday went so well, I wasn’t prepared for today. I am dreading how things will go tomorrow.