I win one… Wait for everything else!

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I don’t think I am impatient, I just think I find it hard to wait for answers. I can wait for most things, but anything to do with Dinky and it drives me mad!

So I shall start with the win!

A few days ago I wrote everything is a fight when your child has PDA , in which I explained about the local autism services turning Dinky down and my response to it…

Well. Today I got this email

Dear Dinky’s mum

I have received an email from county council team who have confirmed that we can support Dinky with a diagnosis of PDA/ or report demonstrating that she has provisional diagnosis. I will also make sure our children’s team are aware of this so you don’t get conflicting information in the future.

We will aim to offer either 1:1 or group support as soon as we are able but as I explained in my previous email we have a large waiting list currently for the xxxx area.

I hope this answers the queries you have raised. If you however wish to discuss this further I will be at our office tomorrow on xxxx xxx xxxx and they will transfer you through.

Best wishes

WIN!!!

Although to be fair, I don’t think that they had much of a choice given that they already had a child with no diagnosis, and a child with PDA already accessing their support services.
To me it feels like a win. If I left it, dinky might not have ever received services and other children with PDA may have been turned away by the two people I spoke to! So yes. I am claiming that one!

Unfortunately, everything else remains the same.
I have to wait. I hate the not knowing, I hate having to second guess where the next battle lies and what it will be regarding. It made me think about the educational psychologist who said “why do you seem like you are gearing up for a fight? The LEA are not your enemy”
That is not what it feels like. I have had the integrated services manager say that ‘there are concerns over parenting’, and the LEA have already offered another child a place at the special school while dinky and I are left hanging. I sit here wondering whether I will have to appeal the statement and whether or not all the special school places would have gone by the time it gets to tribunal. I am ready to fight, but I don’t know how much of a fight I have to put up and to whom.
I am yet to get a definite appointment for Dinky’s assessment or her specialist SALT assessments, and need them to be done ASAP.
STILL, I ask for some respite during the week, but everyone’s answer, especially social care, is to just send her back to THAT school. Which I have already said to all that have mentioned it… OVER MY DEAD BODY!… And I mean it!!!

I am exhausted, Dinky has found the new dog and then my dad’s unpredictability over the long Easter weekend a bit unsettling, she is also waiting for the new SN clubhouse (in our town) opening party on Saturday. She is really looking forward to it, but she is also very anxious.
Dinky really has been hyper and repeating lots of phrases from TV.

I have had a couple of phone calls yesterday, at the time I was rather irritated by Dinky’s behaviour, there are very few rules in this house, one of those is to behave while I am on the phone. However the person on the other end kept laughing at what I was saying.. Which is hardly surprising looking back

“Should you really be sniffing and licking the dog?”
“Dogs don’t like tight hugs”
“We don’t need the lights on in the middle of the day”
“I can’t work out your sign language”
“Your cup is under the table next to the bat cave”

After I put the phone down dinky calmed down, actually after a really long walk and run around with Sky (our nearly 7 month old puppy), she actually fell asleep on the sofa… Albeit for just 20 minutes, but that would NEVER have happened when she was at school!

My sideline battle is getting people to understand PDA. I am getting rather sick of people (even in the autism community- even in my little local autism family), wondering why Dinky can’t stick it out in mainstream and because she ‘seems bright’ she shouldn’t be going to the local special school anyway.
They just do not understand the unique challenges that Dinky a tons of children and adults like her face. They see it as a ‘mild autism’, it just so happened that the brilliant Jane Sherwin author of understandingPDA.com has written some brilliant information cards found here .
Which I have shared.
I also made one with the charts on

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(Although I forgot to put on what the abbreviations stand for- PDA – pathological demand avoidance. ASD – Autism Spectrum Disorder. CP- conduct problems- such as ODD ect.)

I wanted to make the point that actually PDA scores as having more difficulties in some aspects of social communication than your typical ASDs.
More so I wanted to prove after the autism charity turned us down that people understood PDA IS an autism spectrum condition.

So now I await my next fight…..

I’m just wondering where it will come from….

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One thought on “I win one… Wait for everything else!

  1. I so understand what you are saying DM. We don’t fit in with the neurotypicals and the autism community can, in my experience, be even more judgmental because they only understand their own experience of Autism. Because of that they think that they understand Molls and therefore think that my strategies and methods are wrong. It is so frustrating and quite frankly I am sick of having to constantly explain and justify why I do things the way that I do. Hopefully, one day, it will become an easier path to walk for all of us xxxx

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