Yesterday was a great day!
Since the age of 2, when both of our kids started pre-school, we knew that our son was different. We suspected autism but we couldn’t get anyone to take notice. The pre-school were amazing and did observations but, the general opinion was that it was too early to tell as the exhibited behaviours could be down to his age.
When they went to Infants, the information seemed to disappear/didn’t get passed on…… We were told that they didn’t want to label children but, by the way, your son is naughty!!!
The same happened when going to Junior school. No one wanted to listen. Behaviour at home was getting worse then year 5 happened! I eventually broke down in front of his teacher who mentioned the Home Link Support Worker. This was the best thing that could have happened. She observed our son whilst out in the playground and said those magic words: He’s autistic! Why magic? Because, all of a sudden, someone confirmed what we already knew.
Diagnosis
Then started the long hard struggle of getting a diagnosis. We received his Autism Spectrum Disorder (ASD) diagnosis in May 2017. Naively, we thought this would sort all our problems. We were so relieved that we ignored the little pieces that didn’t quite fit.
That was a mistake that came back and smacked us in the face when a series of events lead to he becoming a school refuser. This then led to a disastrous transition to Senior school. He managed 7 days at the start of the first term and then started refusing. The school were great, putting in all sorts of ASD provisions including a dramatically reduced timetable. But, it didn’t work. In the November, his Clinical Psychologist signed him off as medically unfit.
Pathological Demand Avoidance
You know all those little pieces that didn’t fit? They came out of hiding with a vengeance. They said “WE ARE HERE”!
To be honest, I’m not sure how I heard about Pathological Demand Avoidance (PDA) but, the minute I heard it, everything made sense!
Then started a whole new set of problems. Surrey does not recognise PDA. CAMHS cannot diagnose it. I did my research and spoke to his psychologist and was relieved when she agreed with me. I started using very different techniques and….you know what…..they worked!
Ok so now what? It has already been agreed that he will need a specialist school. Do you know how limited Surrey is with its specialist schools? Its rubbish!! Our son requires a school that specialises in ASD. But, it also needs to specialise in PDA. If they use ASD techniques, it wont work. Senior school proved that. In order to get what he needs, we need it on his EHCP. But Surrey don’t recognise it!
You may be asking why this article is called Great News. Well, I booked myself onto a PDA course. During that conversation, the phrase “ASD with Demand Avoidance Traits” was mentioned. This, Surrey will recognise. We now have a report from his psychologist that states this. That’s why yesterday was a Great Day. I have spent weeks researching, making calls and contacts and, finally, we have got somewhere.
Is this the end of our journey? Definitely not. It’s only just beginning. The Local Authority need to agree and include it in the EHCP as it is critical if we want a successful reintegration into an appropriate educational provision.
We’ve found the provision that we want but, at the moment, they will not entertain the idea. And so starts a whole new battle.
I feel better now that I’ve written this. I’ve just been to Lidls and almost had a panic attack. I’ve never come so close, as I did today, to leaving the trolley and running out of a shop. I think the stress and pressure of the last few weeks caught up with me. The antidepressants clearly are not working. Writing this has got it out of my head. There is now room for the next stage of the battle. Has it made enough room? I really don’t know. But, I’m a mother and I will carry on fighting for my child as that is what we do.
Why not let me know about the coping strategies you use? I’d love to hear. Maybe they would help me too…….
Keep on fighting
Lyn
