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Wednesday, 15 December 2010

Some People Are Never Satisfied!

We have been spending "quality time" with the BST (Behavioural Specialist Team) just lately....a getting to know you kind of thing.

This is good, it relaxes Daisy and lulls me into a false sense of security. For the BST has a plan up their collective sleeve.


It is becoming increasingly clear to me that the BST want Daisy to return to full-time mainstream education. I understand why they want this, as they are thinking of Daisy and her socialising with other children of her own age, but they don't seem to appreciate that Daisy's peer group are a real problem for us.

I have been trying to put into words exactly what PDA is, and I rediscovered this:

It's a lot to read, I'll admit....but this is Daisy and it's very hard to find all the right information in the same place at the same time.

I also found this:

Now...if you have got this far down the page, I am wondering if the same thoughts went through your head as they did through mine.....

....."where the Hell is the school that is prepared to do this for ONE CHILD?"

Daisy is impossible to teach in blocks of 30 minutes, sitting at a table with a group of other children, all focusing on teacher or whiteboard...she cannot physically do this. She fidgets, she wriggles, she is highly disruptive to any other child who is NT (Neuro-logically Typical, i.e. non-autistic) and she has to focus on something else in order to absorb the information that you actually want her to take in. Teaching Daisy is very much like talking to yourself. She has relatively good eye contact (except when she's PDA-ing) if you ask her to look because she needs to see to understand, but otherwise? Only if she wants to. If you try and *make* her then you've *lost* her. She'll just PDA because she can't not. Daisy is not like any other SEN (Special Educational Needs) child. We have come into contact with a few professionals who have taught autistic children, and PDA is yet another colour on the Autistic Spectrum, yet the teaching methods for Autistic and AS children are a pole apart from the methods required for a PDA child. They are also, I think, quite disruptive for the rest of the class. The only way to get Daisy engaged is to go almost completely over the top. Be loud, be funny, be the most interesting thing in the room and above prepared to get it totally wrong sometimes!  There are days when it is impossible to teach Daisy anything yet there are others when she needs to know everything NOW! Her inconsistency is her most consistent feature!

Apart from her time in Year One, when she absolutely blossomed under the tutelage of Miss C and Mrs R, her time at school was a complete and utter disaster. She was a wreck and I wasn't much better. I am not prepared to go back to that, for either of our sakes.

So the BST team, can help me with the biting, scratching, kicking and verbal abuse...but mainstream school is not an option. Sorry.

Thursday, 2 December 2010



The Behaviour Specialist came yesterday and we had a very productive meeting.

She didn't know what PDA was, but it didn't matter! She merely asked what behaviours Daisy presents.

So I told her!

She said that regarding the abuse I suffer "we can certainly change that. Make it stop."

I almost hugged her. Three life-changing words, that I wanted to hear, but felt that I never would.

I don't expect a whole new Daisy to emerge from this, because it's ME that will be doing all the hard work. Actually, I don't see it as work...I see it as more of a new challenge and a real opportunity to change things for the better.

I have been invited to join a 10-week course all about behaviour management and get the chance to meet other parents who also suffer abuse from their children. I expect a lot of laughs, a lot of nodding at each other as we realise that we really do have an awful lot in common and, yes, a few tears. It is incredibly difficult to admit even to yourself that your child does not operate in the way that you might have initially expected, and for the parents who have only just received a diagnosis it can be quite devastating. To declare it to a room full of strangers, especially for the first time, can be really emotional as you declare to the world in general that your child has a life-long pervasive disability. It is admitting it to yourself, acknowledging that your life as a parent is never going to be the one you had anticipated.

I read somewhere that a parent likened it to all her friends who had children of a similar age going off to live in Paris, but this particular parent ended up in Holland. Still a nice palce, but not the destination they had in mind. They wanted to be in Paris, but had to learn to appreciate everything Holland had to offer instead and forget about Paris.

For a long time I wanted Paris.....I got Siberia instead! But yeah....Holland is great, although the analogy should have said Nepal as we have so many mountains to climb! Hell, anyone can have Paris!

So, the next step in our journey is to visit the place where the course is held. S (the behaviour specialist) suggested I bring Daisy with me when the course begins as they have a creche there and Daisy would enjoy spending time with the Small Ones as they are completely non-judgmental and love to join in her games.

We go for a recce on Wednesday next week to see S again and get the low-down on where Daisy will be for a few hours every week for 10 weeks!

I am looking forward to it.
More importantly, so is she.

Wednesday, 1 December 2010

Help. (Part 2) 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................