Here are some suggested organisations that offer expert advice on special needs.
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Help - is it worth going to Tinsley House and Robin Pauc?(9 Posts)
Thanks Nettle, plenty to think about there. I think you're right, feeling listened to is what I was really seeking. I'll have a look at those books (reading list is now as long as my arm!) and see what I can work up regarding nutrition and supplementation. DS#3 (dyspraxia, ASD, hyposensitive SPD) and DD (ASD, hypersensitive SPD) both have food issues anyway and I've been lurching from pillar to post there. I need a proper plan.
OT we saw with ds2 who had an EHCP in the end at 14, suggested the following activities, touch typing, making packed lunches, chopping veggies, planning journeys, going to football matches, travelling on public transport. So really getting him used to everyday activities in a slow structured way, rather than throwing him in deep end and wondering why he couldn't cope. Ds2 can now do all these things when at 11 he was phobic about a lot of this stuff. Social stories also helped with the sensory stuff.. defused it.
Have you read the Out of Sync Child has Fun. It has lots of good advice for OT type activities.
I've read the book, and one of the things that made a lot of sense to me was his emphasis on diet and vitamins. You can do that side at home without seeing him. I also highly recommend Vit D3 supplements, make sure your child is getting the NHS recommended amount per day at the very bare minimum. A lot of people don't realise their children are Vitamin D insufficient or deficient, I certainly didn't for several years. My son had dyspraxia, sensory issues and slow processing.
I think sometimes when we see these so called quacks a lot of what they suggest is quite obvious - fresh air, exercise, sleep, good diet, routines, but one of the more important parts of the treatment is to feel listened to and supported, it is very isolating dealing with a child with issues and diagnoses. Have you read Neurotribes, it is also quite a good reminder of how desperate parents do try everything.
Home education has been wonderful for my child with ASD (ds2) Ds1 the one with dyspraxia, struggled through school, survived with some successes and is now at university which he much prefers to school. The best intervention I could have done would have been to give him Vit D3, and increase his exercise and self esteem (he was overweight) also his balance and handwriting would have improved with physical exercise of the right kind. I don't think an OT was actually necessary although he did see one, independence was the key, trying things he found hard, encouraging him in social settings (music helped - orchestras, choirs etc vital)
Thank you, yes. The nearest came back to say she no longer takes clients and no-one else has answered my email. I might spend tomorrow telephoning people.
Just a thought regarding an ot. Have you tried this website.
Yes, that's what making me nervous. I am a doctor (not medical) and I don't like people co-opting the title for sales purposes. And I have a feeling it might all be dodgy. He seems to have a lot of get out clauses if it "doesn't work".
Thanks for your thoughts. You've confirmed what DH and I were thinking and I've cancelled. All I wanted was someone to help me join up the strands to help DS. Looks like I'm going to have to project manage it myself, again .
The thing that would concern me is this man has called himself a Dr to sell books. He does not hold any medical qualifications whatsoever, he is not a neurologist. He is a chiropractor only. £300 will be for the initial appointment only. He will want you to return regularly for other 'treatments'.
Asking for advice - DS#3 is 9 and recently diagnosed with dyspraxia, slow processing, ASD and sensory processing difficulties. No EHCP as no behavioural difficulties (very biddable and polite) but home schooled due to ongoing social issues that the school would not deal with, and refusal to accept maths was a problem.
We appear to live in a black spot for support for such things - the diagnosing psychologist is 45 minutes away and we can't find an OT who can see us within an hour's travel. None of them have spaces until February and all want to reasess anyway.
In desperation, I borrowed "is that my child?" from the library and we have an appointment with Robin Pauc on Tuesday. He seems sensible and I like the hopeful nature of his message, but as the appointment gets closer I'm feeling more and more uncomfortable about it. This morning I did some googling and discovered he's a chiropractor and only a post-graduate neurologist, rather than a qualified one.
Can anyone set my mind at rest before I drive for 2 hours each way and spend £300 I could spend usefully elsewhere?