Our PDA Story – A Small Step in the Right Direction

2 Sep

Today I am filled with emotions. A whole smorgasbord of emotions.

But I guess if I had to pick two – I’d choose excitement and NERVES. Lots of NERVES.

For today I received some news.

Today I received confirmation from an Autism Centre that my eldest boy has been ACCEPTED for assessment.

How the hell did this come about?

Let’s rewind.

Since I first had my lightbulb moment many months ago, I have been silently but steadfastly working towards a diagnosis for my son.

It started with a visit to the GP, who sent me to the Health Visitor, who sent me to the school nurse, who tried to send me on parenting classes. I spoke to the SENCO at school, who wouldn’t support a referral because my son is apparently totally fine at school (I want to swear here but am refraining), I spoke to a local council helpline, I spoke to a local Autism charity, who sent me back to the school, who sent me back to the GP.

Are you following?

Feeling abandoned by the authorities, I joined an online PDA Support Group and ordered several recommended books.

Then I read a fantastic post by a wonderful blogger whose daughter had been diagnosed with PDA. I contacted him via Twitter and asked for his tips on achieving a diagnosis. He not only provided me with a recommendation of a specialist centre, he also listened to my story, and told me about his own long journey.

Armed with new information and the unfaltering support of my family, I contacted the centre and began a process of private self referral.

But a privately funded referral did not guarantee my son would be accepted. I had to provide sufficient evidence to satisfy their clinical team that he was appropriate for assessment.

Since I have been wholly dismissed by the NHS since my son was 2, I had no previous clinical opinions or notes to support my case, so it was just little old me, articulating in a detailed and evidenced manner, why I believed he was suitable.

And after 4 weeks of waiting, the clinicians agree, and very soon I will receive an actual date for a full diagnostic assessment of my boy.

Armed with this information, I approached the school, who have finally agreed to meet me and have perhaps, just perhaps accepted that I might be onto something and I certainly am not going to go away.

After 6 years of feeling incompetent, crazy, alone and despairing, I now feel tantalisingly close to an answer.

And in the meantime, I have found some new wonderful allies. Fellow PDA parents who just “get me” and my boy. Having suffered the same frustration for so long, they are masters of this condition, experts on their children, fountains of knowledge.

So today, for the first time, we take a step. A small step in the right direction.

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