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On the whole, it was crap... :(

Feeling totally hopeless really. BK has been so down since the consultation I worry about her mental state again. On the whole, unsupported. In brief, as I am so tired...

The bad news. No point for further teats at this time (read no funds for teenage girl). More notes lost. The doctor was an unsympathetic arrogant twat of the old school. He had no understanding of ASD at all. He suggested that there could have been an infection and damage that had healed leaving behind the symptoms (functional) or given her age and gender it could be psychological. He asked about Aspergers and why I home schooled and focused on the word 'anxiety'. ALL BK heard in his long ramble about not knowing and possibly fucntional or even a psychological element was ' blah blah blah making it up and mad' and has been very negative and upset and hard on herself.

As I said
he had no understanding of ASD and how a person on the spectrum might hide or not show suffering, pain or distress outwardly, and frequently confused her, and grew annoyed with me when I translated or gave her prompts for her very poor memory so she could understand the questions and remember the time of her life he was asking about. he saw me as an overbearing mother I think! Made me feel so small and useless. All I want is my daughter well and for him to understand what she is saying and vice versa - you know, when she quotes a scene from Lewis, someone seems to know the quote, the character,the scene and extrapolate her emotions from it! And she, with an auditory short term memory fucntion who will take what is said literally, needs a translator too. Not been made to feel this way by a professional since I began this last lot of home education and we got the social workers off our backs.

But there are  the positives. the specialist has accessed the thearpy the original consultant wanted for BK back in May but was denied to her on her age - to retrain the brain not to notice the worlkd spinning constantly as it were. She will come weekly to treat BK at home a week from when she gets ther referal letter. We've met her and she seems on the ball. GP says she will get her secretary to chase the letter daily after a fortnight if we've heard nothing - after all, she and I are both still waiting for the letters from May and July!!!


( 2 comments — Leave a comment )
Mar. 6th, 2015 07:37 pm (UTC)
So frustrating.
At that age we had to speak for A as he was reluctant to speak to adults. At 16 he is getting better but still prefers an 'interpreter'. B would downplay her symptoms, great stoicism, but useless at the doctors'! Anyone dealing with children should be aware of these types of issues, but often aren't. Worst we had was the orthodontist who B found creepy because he was very softly spoken and that department tend to see patients with just the nurse present, but I put my foot down and played stroppy parent. B was too honest about the times she forgot the brace and he obviously assumed she was underreporting so kept telling her it was her fault it wasn't working, then after a year he seemed to 'notice' odd marks on the brace and realised she was slipping out of it in her sleep!
Maybe it would help to compare her condition with ME and talk about the recent studies showing biological changes. Explain that if they don't know some people will try to say it is psychological, but eventually it will either be something she grows out of, something she learns to manage and/or the cause will be found.
Not much else you can do except scream which will only give you a headache or a sore throat!
Hugs and positive thoughts.
Mar. 12th, 2015 04:24 pm (UTC)
Hi! I found you via some of your fics (which I enjoyed) on the Lewis com and on AO3 (just finished The Oxford Ripper which had me really intrigued). I'm wanting to friend you because I have a grandson with ASD and his mother, my daughter, has fibromyalgia, which like your ME doesn't exactly help. We are currently having battles with the school, the LEA. etc. Jamie has what was initially assessed as high functioning autism but might more realistically be referred to as Aspergers with PDA (in case you haven't met that one it's pathological demand avoidance) and we're finding we're now the experts, trying to persuade all the powers that be about our research. Jamie will be 7 next week. I'm going into detail here because for various reasons my LJ is f'locked and you won't be able to get a 'pen picture' of me! I shall click the friend button and leave it up to you - but sometimes it's good to know you're not alone!!
( 2 comments — Leave a comment )



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