Saturday, 25 January 2014

MPs and Press Release

Duck came home in a reasonable mood. We had a small tantrum over the teacher telling her off. I don't know what happened, Duck tells me one thing but I know she doesn't tell the truth and I know teacher will have a totally different take on it. However, what I do know to be truthful is that the teacher was really shouting at Duck. I don't mean that she was REALLY shouting at Duck, but another of Ducks sensitivity issues is noise related. So in Ducks mind, a stern voice as a telling off feels like being shouted at. Ducks take on it is that the teacher really yelled at her. I am as confident as I can be that there was nothing more to the telling off than you would expect for any child. But Duck doesn't see things the way you, or I do. Nor the way her teacher does. She spent the evening complaining of a headache because of 'being shouted at' but wouldn't take any medicine because it was apparently lumpy. She didn't eat well, although she did better than yesterday. She drank a chocolate milk, the whole carton, for lunch, which is 200 calories. She has another 900-1000 in the evening, so for Duck, that's quite a good days eating although she still need to increase it somewhat.
Tomorrow morning, behaviour support are going to be at school in the morning to observe the separation issues. Normally she has a PPA cover teacher on Thursday mornings, whom she prefers to her normal teacher so I was concerned she would go in better. I told her because of the inset day, her PPA teacher would not be with them and she would have her normal teacher. This totally frustrated her because of the 'shouting' today. Tomorrow is meant to be her 'day off from the teacher'. I don't like winding Duck up and setting her up to fail, she has enough anxiety in her life, however, sometimes these things have to be done.
I managed to get Duck bathed this evening. She also did her teeth for the first time since Monday. She said she finds it easier to do in the evening when she doesn't have the anxiety of school bothering her as badly. So I agreed evening only would be ok. I doubt it will be this easy for the rest of the week.
Duck needed help getting ready for bed, as usual. She had complained of being tired, but still finds it hard to settle. She was really restless and kept saying she didn't want to go to school tomorrow. For once I was pleased. Her medicine didn't help much today. I wanted to watch Waterloo Road but was stuck settling Duck down instead. Looking forward to my 3 hours off tomorrow afternoon. I can watch it then!
I told senco today that CAMHS, (childrens mental health services) have referred Duck for a full ADOS autism assessment, to ASSC, autistic support for schools, to Occupational Therapy for sensory issues and a psychotherapist for full detail. Senco seemed surprised they are doing so much. Last time I spoke to senco, they were reluctantly referring for the ADOS only. She asked if something had happened to change things.  I explained it may well be because the MP has got involved. Lets face it, I have been fighting for 9 years for Duck, I have been fobbed off before and I am not being fobbed off again. I think CAMHS have realised that and decided to do things properly. I also have a meeting coming soon with the school and other professionals. I am not expecting them to be blaming poor parenting. They really don't want to try! Its been said if there is an issue with your first child, the parent gets blamed for lack of knowledge, if its your second or third, the parent is blamed for not giving them enough time and if you have 1 of 15 kids who has behavioural problems, the parent is blamed as 'this one is the one you didn't want'.  Seems first case is to blame the parent.  I have to admit, I have had issues where I have blamed parents for childrens poor behaviour, however, in both instances I was proved right.

I got an email a few days ago from the Autism Daily News. They are running some articles on PDA and want to run my story and was I interested? Needless to say I said yes. I sent her all my blogs, plus some in depth work I had left at CAMHS at my last appointment. I told her to make what she wanted of it all. Gulp! I didn't hear back from her so I had assumed she wasn't running it, however, this evening, I got a message asking for a couple more details and telling me it was almost ready. Excited or nervous?? Lets face a very scary thought here...I could be wrong.

Whilst Ducks behaviour fits PDA really well, I still hold a niggling doubt that I may be wrong, and then I will look a fool. I doubt I would really ever believe anyone who told me she was not autistic/PDA. I have known it for so long and gone along with her ways that it seems normal behaviour most of the time. My close friends and family can see PDA in her too. Friends who are not so close don't see it at all. All they see is a child who can behave perfectly well half the time and the other half of the time behaves like a spoilt brat. They cant see the anxiety building in her that causes the brattish behaviour. They cant understand how she can flip into a tantrum over something so small. They don't 'get it'. They don't understand her. They don't get why she finds it so hard to say 'hello' or 'goodbye'. They don't understand why she is still unable to make small talk. A 'how are you' gets the response 'fine'.  Not because she is fine, but because that's what you say, isn't it?

I am starting to feel out of my depth. My next few months are going to be a line up of meetings and assessments and interviews and accusations and courses. My head is a blur and I am feeling the pressure. Must remember in it all;

Philippians 4:13 'I can do all things through Christ who strengthens me.'

The other thing I need to focus on is the petition. We are fighting to get PDA recognised within the NHS throughout the UK. Currently its a postcode lottery and this needs changing.
I started the petition in December because I was frustrated with being told PDA doesn't exist.  I have recently spoken to a manager at our local CAMHS who has confirmed its 'An emerging condition'. Wow, a big change in a short space of time. Its emerging alright, its going to explode within the NHS. The PDA army are all fighting. Please help and fight with us. Sign and share the petition. We need over 10000 signatures to get our case looked at and 100000 to get to parliament. We have a long, long way to go to hit our target. We have lots of press releases coming out, the Mirror are involved with some people, the Autism press whom I am in contact with and we have an online PDA awareness day coming in February.  This year, PDA will make its name. Please help us. The link is below.

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