So......today is the day that a member of the Behaviour Support Team is due to visit.
Finally after such a long time this could be "it".
Oh, I am such an optimist. I know exactly how the meeting will go.
Just like this:
Me: Daisy has PDA
BS: Oh, what is PDA?, I've never heard of that
Me: Well..........enters into explanation of PDA again and gets really really frustrated that *professionals* don't do any kind of research before they meet us, even though they are aware of Daisy's condition because it's in her notes.
Doubtless I will be handed (again) a huge wodge of paper containing all the contact names and numbers of various local organisations regarding autism. Because I don't have those three times before already!
Why, when you pluck up the courage to ask for help - something I find incredibly hard to do - does it always backfire? I am doing my level best to help Daisy, but I cannot do it alone. I need people with skills in behaviour management, anger management and autism, but it isn't forthcoming. Even when we went to CAMHS I was appointed to see a specialist ADHD nurse. What use is that? ADHD isn't autism, Daisy doesn't have ADHD, Do they see a series of letters and just assume that PDA and ADHD are somehow connected because they share 2 of the same letters?
You know that there is no hope when you say to a *professional* someone that Daisy has Pathological Demand Avoidance Syndrome and they say "what's that?" and grin. It's the grin that gets me, like my daughter's disability is funny? I wish it was! I wish I could laugh about it. I wish Daisy could laugh about it. But, honestly, which bit of Pathological Demand Avoidance don't they get? It does what it says on the tin, for Pete's sake!
So, I sit and wait and nurture the tiny sparks of hope and optimism that this time it will be different. That I will be talking to someone who can make a difference to our lives. Just a small one....I don't expect miracles just a tiny chink of light in the dark.
Fingers are crossed................
Gluten Free Buford, Georgia
4 months ago