Dr G, I have started reading your book. I like to read books twice; once to get the gist and a second time to think more deeply about the issues raised. I've only just started the first read but something has already jumped out at me so strongly. At the end of the first paragraph on page 19 (I won't put it into context because I don't want to spoil it for anyone else) you write:
"......because he was the doctor/expert, there were never any consequences, or, for that matter, anything patients could do or say because if they did, it would simply be seen as part of their problem"
That, for me, sums up every problem I have encountered with the public sector (and, indeed, many members of the public) regarding my son. Doctors, teachers, social workers, paper pushers, even receptionists and secretaries sometimes - they don't 'get' my son. No-one spends enough time with him to really understand the way his sensory issues affect him; to know that much of what he says is learnt phrases he's memorised from films or books and he doesn't actually understand what he's saying; to know that noise that wouldn't bother them at all is like someone drilling into his brain; how much every day activities tired him and make him unwell, how much time I spend on alternatives for him - acupuncture, osteopathy, homeopathy, vitaimin supplements, daily physiotherapy and goodness only knows how much else. That for him to do well at college I have to spend the other 144 hours of the week not doing too much so he doesn't get too tired to manage the 24 hours a week he's at college. No-one else sees that, but I do, and when I try to explain it to people - so that other people can look after him in a manner that his disability dictates - I'm over-ruled, because I'm too emotional, or I won't let go, or I've got mental health problems, or I'm not seeing it from their point of view, or anyone of goodness only knows how many other things I've had thrown at me over the years. It's enormously frustrating and it's what has broken me over the years - many, many years of not being heard. So yes, thank you so much, you've summed it up so well in just that sentence.
I'm really enjoying it and so much is resonating with me already but that part really summed things up for me so I wanted to mention that quickly now

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