Finally getting somewhere

There is one thing that I have not written about on my blog before and that is my concern over Elizabeths behaviour. She has always been an independent, demanding, strong-willed and controlling child but we never really thought any more about it. She never had any social issues so I pushed all my concerns to the back of my mind and then of course her health took priority when she was diagnosed with leukaemia.  With the introduction of Steroids, her behaviour became more obvious or at least we started to pay more attention to it instead of ignore it. We had a reason for her mood swings and we let it go.

When the steroids became less frequent we realised that her mood swings were no longer dependent on the drugs and actually we started to notice more behavioural issues. We found our own ways to deal with it most of the time but every now and then she would become out of control. Friends and Family made more and more comments about her behaviour and I started to feel like a failure as a parent. I couldn’t control my daughter and I started to wonder if it was something we had done. Had I spoilt her too much? Had we given in too often?

One day I was catching up with facebook when I read a post by another blogger called Stephs two girls. I have met Steph a few times but as is the way I didn’t read her blog that often. What caught my eye was a post about a disorder called PDA or Pathological Demand Avoidance. The more I read the more I came to realise that it was describing Elizabeth.

I bought a book from Amazon, I read all the websites I could find and I finally felt that I had the answer. I made an appointment to see the SENCO specialist at Elizabeths school but she dismissed my concerns. Elizabeth was a model student and she didn’t flag up on their special autistic spectrum questionnaire. This is actually fairly consistent with PDA and when I mentioned it to the SENCO she didn’t even know what it was. 

I left feeling downhearted but the more time went on the more I decided I would have to approach things in a different way so I went to the doctors to get a referral to the local mental health team. He didn’t want to refer us, he tried to make me feel as though I had no idea what I was on about as though I just used the internet to diagnose my child with something without there actually being anything wrong. Well, I have been there and done that in the past and I was right then so I refused to leave his room until he agreed to refer her. She was sat right there next to me telling him about her emotions being out of control, explaining to him how hard it is for her to do things I ask and he still wanted to say no! 

Things have moved on and I finally have a date for an appointment in a few weeks but in the mean time I have had a meeting with the school counsellor who wants to support Elizabeth. She asked me for some background information on her and the more I spoke the more I saw in her face understanding. As the meeting drew to a close she said that she sounds just like something she had read in a recent journal. She sounds like she has PDA. Finally I feel validated, finally someone who not only knows the signs and symptoms of PDA but who recognises that Elizabeth fits that diagnosis so well. 

I feel like this is only the start of our journey but I feel like we are finally getting somewhere! 

I am not pushing for a diagnosis but if we can find ways for her to cope with her emotions and find strategies to make it easier to cope with her meltdowns then that is all that matters!