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Here are some suggested organisations that offer expert advice on special needs.

SN children

Felt let down by nas seminar on women and girls with autism

176 replies

autumnsmum · 17/03/2013 09:27

Happy st Patrick's day everyone Just a little moan yesterday I went to the nas south east members seminar on asd in women and girls . I left feeling totally excluded no one had a dd like mine . Everyone had dds who were very high functioning , I have a dd who is being statemented and may go to ss or a least a unit . I realise it wasn't the organisers fault but I left feeling more depressed than when I went in . Thank god for mnsn which is the only place I have met people in a similar position to myself.

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bochead · 17/03/2013 20:59

I'm not keen on the NAS as I've found them rather out of date on several issues, and I don't feel they bring sufficient challenge to the corrupt caring carrotism so prevalent within the SN industry as a whole

Although DS had horrendous behavioral problems they were never any where near as bad as those of my sibling who has a different neurological condition which is very rare but incredibly disabling. I frequently found myself losing all patience with his previous primary school, as I'd grown up with far, far worse and DS could at least be reasoned with and melt downs are based on logical reasons that are for the most part completely preventable. HF ASD is NOT that uncommon and tbh I'd expect all mainstream staff to have at least some knowledge of what it involves, along with the milder manifestations of ADHD, dyspraxia, dyslexia and several other conditions.

My Godfather & parents had completely different worries and concerns about my sibling and my severely autistic cousin when he was growing up. They began with - who the HELL is going to take this hulking adult to the toilet and check they eat properly when I the parent am no longer here? The fears of potential abuse when out of the parents sight were much greater (though in the event it was my lad who suffered this). Periods and a teen who can't communicate or understand properly deserve a chapter in their own right in terms of how to cope for carers.

The transition from child to adult services is far, far more traumatic. I keep harping on about it but toiletting an adult is no joke, having to physically restrain someone over 6 foot is something else,dressing an adult isn't funny. Carers of adults with lots of care needs ofte end up in very poor health themselves due to the sheer physical demands on their bodies it creates.

After last summer's experiences with adult services for my sibling, I really do not envy any family for whom "supported independent living" is on the horizon, or who needs to find an adolescent/adult residential unit.

DS swore in the hairdressers a couple of months back and I had to endure some silly woman's stupid Daily Fail opinion on the matter. I wanted to say, "actually I am so,so grateful that he CAN finally express his discomfort, that I don't care how he does it OR what you think!". I sometimes feel very guilty on the forum for my winging about my issues, but I am very socially isolated in RL.

It's all made me very, very aware that although I fret non-stop about my only child, really the biggest disability is only fighting the system on his behalf to ensure he gets a crack at a decent independent adult life. To have to fight so,so hard just to ensure that your adult child will be kept safe, warm and fed must be soul destroying. My mother is delighted he ONLY has the problems he has after her experiences raising my sibling and that's something I never forget.