Today I took dinky to a special needs soft play afternoon. There I bumped into one of the governors of dinky’s old school who used to help out in dinky’s class.
Her daughter has just been diagnosed with Aspergers.
We were both talking about the diagnostic process for our area. She asked which consultant will be seeing dinky and when I told her she said that was great as people seem to be raving about him on the local autism support group.
It is very difficult to decide what you say to people about PDA. Out of the people I have told, both of them, I got two different responses.
One was, “well I did tell you for months she was autistic, see. Yes this fits!”
The other “ok, so autism spectrum then, I have a friend whose son is non verbal” the next time she comes over she has all these leaflets and stuff for the local support group that this governor was talking about.
The reasons I haven’t joined as of yet are simple enough really.
Dinky has no diagnosis.
I do know someone (acquaintance), that has a severely autistic son.
I can’t just join up with an ASD that might not even be recognised in my area, with out a diagnosis. I have found through the PDA group that some parents of children with more typical presentations of ASD can actually be quite dismissive and are almost as bad as parents of NT (neuro typical) children.
I decide that seeing as she has been in a classroom environment with Dinky that I would mention PDA. I was pleasantly surprised, it was very amusing in all reality. Apparently dinky was viewed as more hyperactive, maybe ADHD by school. But when I mentioned ASD she said that it could be an anxiety hyper. Also that demand avoidance would seem to fit dinky to a tee!
We discussed the whole ‘finding out your child might be on the spectrum thing’ and even as a governor of the school she can’t get the school to put into place the same sort of thing they put into place today at school for dinky, which is the ‘now & next’ cards.
Even though the head teacher seems to suffer from short term memory loss or split personality, and the senco can be rather work shy. They have actually come up with something that may make a difference in school, and hopefully at home too.
We discussed the school and the fact that the old senco while being absolutely lovely, and really knows how to de escalate meltdowns in young children, she has no idea about the female presentation of ASD’s.
She said I should join the group as she is admin and they have lots of members that do not have a diagnosis yet. She knows the girl I mentioned with the severely autistic son and said that she shouldn’t have an issue as dinky has, after all, been referred to the autism spectrum clinic within the child development centre.
So I agreed to join and my request is pending.
We discussed the start of school and the governor said it was the natural progression. Parents find a way of coping with their child and as long as there isn’t major difficulties, it isn’t noticed until school. Where they are treated like the other 29 NT children and then lose the ability to cope as mum isn’t there to shield from the parts that we instinctively know they find harder. It starts with the child being ok at school and a nightmare at home as the anxiety builds throughout the day and then as soon as you step off the school premises al hell breaks loose.
Yes that has been my experience too. The difference between them is that her child continues to do this, although is obviously more socially impaired. Dinky has only had 4 meltdowns in a year at school, the other times she is ‘challenging’ or ‘difficult’ have been extreme demand avoidance, but not reaching meltdown. No, that she still saves for me as soon as we leave the classroom. Or if I’m lucky she manages to last until we step foot in the door.
It made me realise how alone I am in all of this as dinky’s mum. My dad is FINALLY on board, and handled the meltdown in the cab very well indeed. But this is not his baby. His heart doesn’t break at the sound of her distress and then shatter into smaller pieces when he realises that there is absolutely nothing he an do to help her. She doesn’t want hugs, she doesn’t want anything except for the overwhelming feelings to die down. On the way down comes the Torrid of nasty names and hurtful untrue comments designed to incapacitate. He just shrugs it off. It cuts through me like the end of a fight on mortal combat, where everything freezes and the announcer says “finish him” in a menacing and forceful tone, the winning character then performs a move to reduce the loser to dust.
That is what it feels like to me.
The worst part… It is only going to get worse!
Natural progression from the pathological demand avoidance- an autistic spectrum disorder blog, the governor and the PDA group, dictates that without the right intervention (and even sometimes with it), it is just going to get worse for a time. Although it seems it gets better in a window before teen hormones kick in. Then there are two battles- that of a hormone filled teenager- and PDA. I must admit I have enough time to bury my head in the sand until closer to the time to worry about her teen years, at 5 she is not a baby, but she is still small. My dinky. (Which I was horrified that she didn’t want to be called anymore, but luckily she changed her mind… Phew! Lol)
Until tomorrow when the plan is to decorate her bedroom!