The post diagnosis anticlimax

So it has been just over 3 weeks since dinky was diagnosed.
Her diagnostic report had 5 diagnosis on it…. I only went for one!

It is a surreal feeling.

I posted a couple of days after saying I didn’t feel any different. I do now.

Although I will admit it has been quite an anticlimax.
I spent tons of time researching autism, trying to find where Dinky fit on the spectrum. When I was told about PDA I had my lightbulb moment. But no one had heard of PDA. I had to learn everything about PDA and how it came about, I had to research autism and Aspergers to find out for myself how PDA fits in.
Disaster after disaster followed by fight after fight with education, health and social care. Brick wall after brick wall.
Stupid comment after stupid comment by muppets… My favourite being ‘we can ‘fix’ her’!
When I found a paediatrician who understood PDA, I still had to gather evidence, fight the school, and try to get her diagnostic appointment.
I had to make mental notes of autistic/PDA behaviour.
Everything had been a battle that some professionals who saw what I saw couldn’t understand how defensive I was as to them it was plain as day.
Medical practitioners were then almost falling over themselves to say that yes, dinky had PDA and was autistic. Didn’t make it easier with the school or the local autism charity who still wouldn’t do anything without the piece of paper.
A malicious call into social services from the school which thankfully backfired on them and actually got us some support… After a fight.
Out of school and granted a statement of SEN fighting and battling to get the amendments without the diagnosis. Fight fight fight, chase chase chase, argue the point over and over again that PDA is NOT a behavioural issue and is in fact autism.
Then came the diagnostic appointment… She has autistic spectrum disorder- Pathological demand avoidance.

Ok. I knew that was coming, I have fought for it.

“I think you should consider medicating”… That I wasn’t expecting.

The diagnostic letter and the OT report, I wasn’t expecting.

Now I go out and I still make mental notes of autistic behaviour and just realise that I don’t need to anymore, I don’t have to fight that battle anymore, but nothing has changed. I wasn’t expecting things to miraculously change, but I have just realised what an anti climax it is to realise that yes Dinky has her list of diagnoses from the CDC, but I’m still at full throttle… It is like walking up the stairs and thinking there is an extra step but there isn’t.

I’m still fighting on other fronts, but now they HAVE to listen because Dinky has what has been classed as ‘complex developmental difficulties’ and BESD and parenting have now been well and truly discounted. All health paperwork says we need lots of emotional and practical support.

This is when it hits me that this is it. Things are not going to change, dinky has a life long disability which will affect the rest of her life!

Just as predicted though Dinky hasn’t GROWN need since her diagnosis! She hasn’t suddenly become a child with ASD-PDA, significant attention-hyperactivity- impulsivity and concentration difficulties, sensory integration difficulties and sleep difficulties. (They listed ASD and PDA as two separate conditions but we all know better!)

I’m tired and I hope this makes sense… But it is now hitting me regarding the whole diagnosis, which I didn’t think it would.

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3 thoughts on “The post diagnosis anticlimax

  1. When the fighting for diangosis is over the reality of your situation can hit home like a lightening bolt. Your mind is so focused in learning, fighting, debating and articulating your point that it takes up all of your brains capacity. The when its over you’ve got the diagnosis but the realisation is that although it helps others to view her differently the reality of your daily life is still the same and more poiniently it always will be. This stage will pass though and having a child with PDA and their daily battles simply become the norm in time and you just accept that this is how things are. You have fought and won and you are a fabulously strong, dedicated and intelligent mum. I believe your place in the world when the dust settles and Dinky is in school is within the world of PDA. Perhaps advocating for, writing letters and offereing phone support to other parents. This may give you the job satisfaction that it gives me. Obviously you need to be settled and the right place with Dinky first and then you will map out a new life within this new world for you too.

    • I don’t feel like I won… I fought for something I never wanted… Why would anyone do that? Lol … Only kidding, Dinky needed an advocate… I didn’t have anything better to do.

      I hope to help other parents. Like you say I need to give special school a shot first and then hope to all that good that it works!

      Thanks again for your support through the whole process. X

      • A victory that our child will have a life long disability isn’t something that is desirable but a victory ensuring that their needs will always be met and understood is and that is what you have singlehandedly achieved for Dinky. You have fought and you have won the battle that will secure her future and ensure that she is helped to be the very best that she can be xxxx

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