Saturday, 25 January 2014

Interesting times

So the end of another week arrives and Duck has been in a lovely mood this evening. She has been drinking her 'food' well and often eating pate on top of her totally soft stuff, so its all in the right direction. I was brave enough to weigh her tonight. She weighs 4 stone 2, which is really good. She has lost no weight since she stopped eating solids over the Christmas holiday. She does look skinny, but not desperately thin. And not the horrid gaunt look I have seen in her before.

My triad of impairments post has been delayed, thanks to todays little episode. And it wasn't from Duck!

I had a call this evening from social services. They have received an anonymous phone call about Duck, stating some rather major issues for concern. Without going into detail, I can see why they are taking an interest. Its a shame most of it is fabricated. Its also a shame that one huge detail that social services have is something that I have only ever told one person. The Muppet! Yep, I told her one thing that I have never discussed before. Its nothing confidential, and its nothing I have done wrong. Its to do with my GP and I have called my GP to discuss it. She agreed that I did the right thing and that the evidence will not stand anywhere. She also told me I have done so much work in trying to get help for Duck and she has all the evidence. She also, (thankfully) saw Duck last Wednesday, and was happy with her weight. Social services were told Duck has been dramatically losing weight amongst other things.

I don't mind social coming in. I called them after Muppets visit and told them they were welcome anytime. I work with children and I totally see the importance of child protection. I/we have nothing that we don't want them to see. I am happy for them to ask whatever questions they feel relevant and I agreed to social contacting my GP, my behaviour analyst and attending the multi professional meeting next week and doing a 1-1 home visit next Friday.  Looks like I have a fun week ahead.

Then, I call my GP! I clarified information with her and find out she is totally supportive and happy to co-operate and back up my case.

Then I call my behaviour analyst. I decided we needed a chat in more depth! She was fab. She went through Ducks behaviours with me (again) she verified everything I describe fits a child on the Autistic Spectrum. Right this second, I am  sweeping PDA to one side......

I have just been told my little Duck fits the Autistic Spectrum based on the details which I gave!

She also arranged a home visit for tomorrow morning. To meet Duck and I properly and to be able to have some good detail ready so when social services call her she can fight my corner. So out of nowhere, she is dropping everything and coming to visit me on a Saturday morning. I cant thank her enough right now.

And so the battle continues I am now fighting Behaviour support because of the original unprofessionalism of the Muppet, fighting the mental health services for the correct diagnosis of Duck, and fighting Social services against allegations of abuse. Never a dull moment in our house.

Sadly, my situation is not just a one off. There are many families who have a child with special needs, and because of the behaviours of the child they find themselves accused of abuse, despite their best efforts to fight for their child. There is a petition appealing for help from Mark Lever from the nation autistic society to help prevent this. You can sign this petition HERE

I think social services have a very hard job, deciding which child is a victim of abuse and which child is a child with special needs and behavioural issues. I wouldn't want to do their job! I have no issue with them coming and visiting us. I am totally confident they will leave happy. I do have an issue with a certain Muppet who has acted so unprofessionally. I still have to decide what I am going to do next about that. I have enough proof from what she told social services to be able to show it was her. But do I really need to add another battle, or make a current one worse??

One saying I remember, that is hopefully so true. 'There is nothing like an autism diagnosis to stop an abuse case' . Duck has her ADOS (autism assessment) in 3 weeks. I just hope the behaviours I see at home will show through in the ADOS to back up my case. If not, then we will go private. The NHS is failing families like us. It has been for years. The ADOS is not the only way to assess for autism. It is, however the most common one used within the NHS.  Girls are much more subtle than boys and often harder to diagnose. Subtle doesn't mean not as autistic either. The ADOS has been used for almost 25 years to diagnose autism. I find it frustrating that my daughter is going to be using such dated medical science that has been proved ineffective many times before.

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