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.