Alternate reality

Questions…. Questions… And more questions… but no answers.

I have said a few times to a few professionals that it feels like I have whisked to an alternate reality. I mean, 1 year ago I was none the wiser, being asked “can I have a word” by the old class teacher, dinky had started play therapy and everything was going to be fixed.
I went looking for answers when they put her on the SEN register, I got an answer, but one that came with far more questions.

They say children don’t come with a manual. Well, that just sucks, because I could really use one right about now.
There is a rough guide… It is called understanding PDA in children.
But it doesn’t have all the answers I am looking for. It doesn’t have those tailor made to Dinky answers. Even PDA is not a complete answer as she may not get a diagnosis… Then what?

Where do you draw the line?
When do you decide between
A) she is just a fussy eater, and she must try new foods
And
B) it is part of her condition, I can try her with new foods, but if she only wants to eat certain things at certain meal times, then it’s ok.

Or between

A) tantrum that should be punished
And
B) meltdown out of her control

Or

A) she shouldn’t have the ear defenders on with the Hoover watching the bits whizz round with the hot air bowing in her face
And
B) how can I meet these needs better

Does this pretty much happen at diagnosis, or do people commit properly beforehand?

I’m pretty much committed. I find it really difficult to justify why I do certain things or allow certain things when Dinky hasn’t got a diagnosis. I know the need is there, but there is always more than one possible explanation for a behaviour.
She fits the criteria for PDA. When do I say.. “I don’t care, I’m treating her as if she does have a diagnosis and you can jog on if you don’t like it!”

I mean I try the indirect demands and am getting much much better at gauging her levels and got some good de escalation techniques going. This is just adapted parenting. It reduces the meltdowns and extreme negative behaviours.
The questions are about the small things. The things that don’t really hurt anyone outside of us, but that for typical children would be a no-no, or something to be tackled.

I don’t know what I’m getting at.

It is just hard knowing, but not knowing.

Having people say Dinky is almost certainly autistic, or has PDA, and then having another side of people saying she is just naughty, or I should change X, Y or Z… Or those that talk behind my back about how I parent Dinky and what should wait until post diagnosis… IF she gets one.

It would be nice to be able to say firmly… She has PDA… that is why I am doing what I am doing.
Realistically it is none of their business what I do with her, but the professionals do not agree, those that make me out to be a nut job, would say treat her like a typical kid until we have the outcome of her assessments… That’s great… They don’t have to live with her, and once they are no longer involved with her she is not their responsibility, however she is my responsibility, and I have to do what is right for Dinky….

I just wish I knew what that was.

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2 thoughts on “Alternate reality

  1. I think you do ‘know’ but it’s not the same as knowing with official backing and professional diagnosis. I think it’s really hard to fly in the face of conventional wisdom without it. I think the muppets get inside our heads, no matter how hard we try to fend them off. The battle is from all sides and it’s not surprising to feel ambushed and overwhelmed by multiple attacks, at
    once. You will get there. You are getting there. But it’s never as easy or
    as fast as we’d like! xx

    • Thanks Colleen,
      You are right I do know what is best for her… I just have to make everyone else see what I see.
      It is a battle, one you know all too well. I’m still flitting between backing down a little and full out warrior mum.
      Like you say… It is a battle on all sides… I just have this one small gap of people keeping me on track saying… Push, fight, she has ASD/PDA don’t give up… And without them, it is hard to know where we would be at… You Colleen are one of those that remind me where the fight is… Thank you x

      (I hope the school are still entertaining PDA and using strategies for J)

      X

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