This weekend dinky has been on the verge of multiple meltdowns. It is thoroughly exhausting stopping the battle before they arise and trying to avert ones that seem to have no real origin other than Dinky’s need to release her pent up frustration and anxiety. After her trip on Saturday with her SN group to horrible science she was on edge. My last post mentions that I spoke to the group leader on Saturday night, she had organised a charity event I was invited along to (and went to, if only to get the Family link worker off my back about not socialising enough myself). The reason we had got onto the topic of how she was after group, was because she had been very challenging for the rest of Saturday, up until bed time.
However it truly is difficult to say too much as she was not much less challenging after school on Friday. Yesterday Dinky was on edge and whinging over small things which normally would be manageable. “my feet are burning” is back as is ” I’m too tired to go to bed” which I never understood. She seems much more bothered by light and noises, more often than not now we are waling to school with ear defenders. It is as if her sensory issues are getting worse.
Today she rode her scooter to school and found it difficult to let me have it and go in. She punched me a few times, but eventually we got her to let me have the scooter and she was taken to her classroom.
I must admit today I have found myself picking up on bits of conversation that didn’t seem important at the time, however now I see that it is significant to me.
I am normally, a private person. Even this blog is done in secrecy. Only a handful of people know my identity, and even less know me in person. My past is very much something I do not like to bandy about, which most people understand.
When our CAF was put into place questions are asked and I can not lie. So I had to reveal my PTSD and then I get asked “from what?” Sometimes people/professionals are rather dense as they believe only soldiers get PTSD. Pretty much the same professionals who believe that Autism is a boys condition. Only at the TAC did I get a copy of the CAF. Apart from some minor details being slightly wrong, there are about 3 places where my past is typed up. Not in any detail, but it is there. Copies of the CAF were handed to the school, the family link worker and Parent Partnership. The group leader was a few minutes late, but she told me on Saturday that she also received a copy.
I do not know when it became relevant to have these bits of paper with ‘mother abused in childhood’ on. Or ‘mother suffers from PTSD due to childhood experiences’. I am not best pleased. Especially as the group leader has no need whatsoever to know that. Maybe the lead professional, as it gives her an idea of what we face as a family, but no-one else needs to know. I don’t know how it will be taken by the school who already made me feel I might have turned into my mother. Maybe I am a bit fragile at the moment with everything that is going on? I know I have about done as much socialising as I can handle recently and need a break from it. Not that I purposely go out to stop socialising, but I feel a compulsion to shut down at the moment with the amount of stress and pressure I am under. I do realise that I put a large amount of that pressure on myself, for Dinky’s sake, but it is not something I can stop doing. I cant stop fighting for Dinky. Maybe the integrated services lady is right and I am running myself into the ground. However I didn’t hear an alternative to me fighting to get dinky what she needs. It was not as if she was fighting in her corner at the TAC. in fact she seemed very neutral.
I am rambling.
Sometimes it feels like the battle to get what is needed becomes bogged down by unnecessary paperwork exercises and childish finger pointing before anyone actually decides to look at the root cause of the issues.
I think it is going to get to the point where I will have to make signs for meetings like the TAC saying ‘Dinky fits PDA- you all agree she is on the spectrum… do something about it!’ Although I think that might be too logical for them.