Is Tinsley House a lot of old codswallop then?

[MerryMarigold]

Interested in this. Based on another thread. A couple of people inwardly groaning (or outwardly!) at the mention of it.

I have read the books, but not progressed to any assessment. Ds1 has some 'issues' which are nor obviously anything in particular but reading about other kids and a lot on here, it is fairly clear - auditory processing, dyspraxia, dyslexia, sensory processing overload, difficulty focussing/ concentrating. The auditory has been diagnosed by an OT, the rest have not. He should have started The Listening Programme but it has been delayed. The other (potential) issues are not being dealt with at all.

These issues he has then have a huge social and emotional impact. I have been desperately rummaging around for help and solutions since the end of YR when things got very bad for him.

Where I agree with the Tinsley House is that there must be a common root to all this, and a therefore a common treatment. Rather than dealing with symptoms, is it not better to address a cause. Where I am not sure is that I am not an expert at all in any of this stuff. Is it just a load of made-up stuff which is trading on parents' concerns?

I have significantly changed ds1's diet and added in Tinsley House suggested supplements and seen significant improvement in him this term. I don't know if this would have happened anyway. It certainly didn't happen during Y2 and there was actually some decline in how he was doing academically.

I just want to hear the pros and cons, really. Here's an invitation.

I'm still surprised no-one has commented on what a GOOD WORD 'codswallop' is. Just seeing it in your post Starlight, has made me . Starlight, have you used TH? Or anything similar?

Actually, I'd like to make a correction. There IS lots of help for these children, but the help is ineffective at best, and harmful at worst and absolutely anti-parental-involvement.

No Merry, I'm afraid TH doesn't have a good enough scientific evidence base for me, though I don't doubt good OT and diet help children more than we often give it credit for, but ALL children, not just those with difficulties.

He is a chiropractor and was found guilty by the gcc of misleading the public by using the title Dr and claiming to be a professor.

But I still stand by the fact that TH is probably better for families than most of the guff our education provision throws at children because it is holistic and involves the family in the therapy.

I think it is conducive to positive forward drive, and giving parents confidence to research and deliver interventions outside of TH that do make a difference.

I think there is helpful stuff out there for sure. Knowing what the problem is to start with, and which of the helpful things to go for is complete minefield.

Incidentally, when the OP put the Listening Programme on him, just for a few minutes whilst she spoke to me, he was TOTALLY entranced. I've rarely seen him like that, perfectly still and absorbed, it was like magic!

But I don't think this is the main source of his issues. I think it may help his focus, ability to sit still and concentrate, but it is not going to help his fine motor skills or memory.

merry absolutely, every child with SpLDs are different. My older child has a photographic memory so she learnt to read with look / see and remained ahead of the class throughout her school career. It was only a wise teacher who felt there was more there and wasn't prepared to agree that some of the eccentric aspects of her literacy were the result of being in a class in primary school where the majority had ESL. What we found out from an Ed Psych assessment was that whilst her visual memory was beyond all norms her auditory and processing scores were way below what you would predict for someone of her ability, her auditory memory is at the level of the lowest 10% of the population (and yes her hearing is perfect) so now at uni she gets lots of support with getting complex information from lectures, she is a scientist, transcribed into useable notes My DD2 is entirely different and I am different again, which is why this catch all for SpLDs and ASD doesn't hold water for me.

I am friends with someone who is autistic and an autism adviser for government and she can share with you all sorts of solid scientific research for the differences in brain wiring and the growing appreciation that autism isn't a spectrum of problems, that you can't be a bit autistic just like you can't be a bit pregnant, and that the overload experienced by the autistic brain is in fact an electrical storm akin to what happens in an epileptic fit. I don't pretend to be an expert but she has shared some very interesting and enlightening research. She is also very vociferous in condemning of any approach that seeks to make children "normal" and ape neurotypical behaviour. The school she is helping to establish is all about creating the right environment for an autistic child rather than try to make an autistic child cope with a neurotypical one. Having seen all that she has shown me I don't believe that autism can be lumped in with SpLDs at all, although some autistic children may have SpLDs. Autistic people by the way are also far more likely to be LGBT and I hope no one reasonable thinks that can be treated or should be.

Starlight I am absolutely not talking about ASD as my last post should have made clear and I absolutely would not claim to speak for parents of children with ASD. However it is a common experience for those of us with children with SpLD.

Merry, I tend to go for evidence-based-practice interventions as my child just doesn't have the time to waste on a wing and a prayer.

I prefer stuff that has been proven and then sift through the people claiming to deliver that stuff and look for a good ethical provider/website/book, not just one that pretends they know all about it but is just cashing in (there are a lot of those).

My main approach has been Applied Behavioural Analysis (ABA), which starts with a thorough and importantly repeatable assessment of skills and strengths and weaknesses and then one by one attempts to improve these using the child's strengths, enjoyment and motivations to pin the learning on, plus recording progress in detail to ensure the learning is as fast as it can by plus efficient.

It's such an effective and amazing treatment (to me) that I am hoping to study it at Masters level next year. I spend quite a bit of my time expelling myths surrounding it as it is a)hard work to deliver and people hate change and b)shows up all other provision.

'The school she is helping to establish is all about creating the right environment for an autistic child rather than try to make an autistic child cope with a neurotypical one.'

This appals me. Autistic children like any others are entitled to be taught the skills that enable them to navigate the world into which they were born. Why train them up for a life only fit for places such as Winterbourne?

Starlight, where did you go? What did you do? This has been our route so far. He is old for his year ie. a Nov birthday.

• Up to YR, ds had no significant problems. Very excitable and happy. Content on his own, very excited around other people. Looking back, he was clumsy and potty trained v late (3 and half), but apart from that...
• Nursery. Couldn't manage to sit still at carpet time, but it was just 'some kids are like that'.
• YR - more struggling to sit still, frequently sent out of the class, struggled with phonics and left behind by friends who all went in higher groups, very excitable/ nervous, emotional outbursts, stopped eating properly, stopped sleeping properly (late nights, early mornings), some bullying, lack of spatial awareness and social behaviours (eg. getting in people's faces, overly touching etc.). Basically he was very unhappy. He and other kids, and teachers were becoming aware of his 'differences'. YR teacher not very good, just said, "He will grow out of it. He's very young."
• Y1 - differentiation with peers increased, bullying got worse. Better teaching helped, but still struggled and focussing still hard. Sleep and eating were still not good. Referred to CAHMs
• Y2 - a new class. A new friend. 'Bullies' were in different class. Vast improvements in sleeping, eating, anxiety. CAHMs lost interest as emotionally he improved and they observed him and decided he wasn't ADHD. Still struggled with the reading, maths, writing etc. etc. but not so he was 'worrying' to teachers academically. SENCO taught him phonics and realised there was 'something' so referred him to OT. OT diagnosed the auditory processing as well as lots of fine motor, gross motor etc.
• Y3 - some recurrence of food/ eating problems but not too bad (yet). Goes to a lunchtime catch up group where they revise time tables like 2 x, and number bonds to 10/ 20, basic stuff really. Also in a social skills group. Also an auditory processing group though no Listening Programme.

Thanks for reading all that!

I have a paediatrician appointment on Monday which has been 6 months in coming (OT referred him). What should I ask/ do/ point out?

starlight that is exactly what they are going to do but an autistic child can't learn effectively under flickering fluorescent lights, and surrounded by shiny surfaces that trigger sensory overload. They want to create the environment where the children can learn and make use of their strengths. Just as the MOD are doing to enable autistic people to best contribute their capabilities to their work. I probably don't explain this well or fully but she is all about battling the way society effectively excludes and turns it's back, bullies even, people who contribute so much and have such an immense amount to offer.

On a day to day basis she does navigate the normal world as an advocate for her community but it comes at a huge cost, frequent brain meltdowns and exhaustion, as well as encountering hurtful discrimination. Don't you think the "normal" world couldn't be more accommodating to the needs of such a talented group of people. She recently worked with Heathrow Airport on taking some very simple steps to improve the experience for autistic people as a result of which it will be hugely better. There was national newspaper coverage of it.

We went to Tinsley House for the very specific reason that we wanted eye exercises to deal with the remains of DD's squint (after 2 ops). The NHS don't do this, I could see it returning and wanted to at least have tried everything.

She's been doing it for six months or so. Her eyes haven't got any worse, but I have been amazed at the other changes in her, in particular to her co-ordination (she's on the borderline of both dyspraxia and hyper mobility). It's so marked that even she has noticed and puts it down to the exercises. (No dyslexia though, reading has never been a problem).

She also has exercises from the OT, and what is amazing now is how quickly she can pick them up - from being unable to do something at the assessment, she can then do them fluently after only a week or two.

So I do think it works, but I also do think that you can do the two exercises - stairs and toothbrushing on one leg - and the diet changes for free. That's all you'd do for the first two or four months anyway. By that point we'd seen enough difference that we were more than happy to go on for however long it takes.

I think she would also point out that places like TH are responding to what neurotypical parents want for their children. However it is unlikely they have ever asked an autistic adult for advice about what is right for autistic children, from their perspective. The autistic community rarely get a voice in these matters and yet whatever their differences they are as intelligent and as articulate as the neurotypical so it seems to me they should. As a result of my friendship with her I have learnt a lot about how I can make the social interaction a mutually rewarding experience, I have no problem in moderating my behaviour out of respect for her needs. It costs me nothing. I see absolutely no reason why society can't be more aware.

Shooting, I'm sure your friend is a great advocate of people like her, but my ds with moderate-severe ASD CAN learn with flickering lights and shiny surfaces. He had a desensitisation programme where he was taught coping strategies and how to gradually ignore their effects.

It is important that accommodations are made for people with all disabilities, but not at the expense of teaching them coping strategies. It is only with education and coping strategies that people with ASD can avail themselves of the choice of environment or advocate for their own accommodation's from others.

In the UK, at the moment, there is far too much focus on accommodation at the expense of education. All children find discomfort in conforming to social rules and need it to be sensitively handled to protect their mental health and shoe them the benefits. Children with neurological disabilities need MORE sensitivity and more expert teaching to enable them to develop the skills to engage and navigate the world and culture in which they were born.

Once skilled up as an autonomous adult, they have the right to choose to use those skills or not. They have the ability to decide when out, whether they are desperate enough for the loo to put up with the flickering lights, wait until they get home, or ask a member of staff if they would mind accommodating their disability and allowing them to use the staff loo. They have the CHOICE they would not have had had no-one addressed all the little steps toward being able to handle being in a flickering light environment.

I don't disagree that there is a real problem in lack of voice from people with autism in many interventions that are currently 'marketed'. However someone like your friend can only really speak for someone like her. She is not an advocate for all people with autism.

Given that the differences in profile from one person with autism and another being wider than in two people from the NT population, it is an extremely complex problem to get representative voices.

I don't disagree that parents choose TH based on what they want for their children, but do disagree that there is any issue with that any more than the school parents choose for their children, the musical instrument or location of their home.

Parents want their children to be happy, independent, safe and able to navigate their way through the world with enough skill to enable them to have some influence over their own lives.

People who choose TH do so with this in mind. I can't see anything wrong with that. It might not be what the children want, but children are children and are still developing their skills for delayed reinforcement, and in seeing the bigger picture. They are not mature enough to make decisions about many aspects of their upbringing or what exposure they need to have to enable them to be safe as adults.

Starlight I think on some of this we are not actually disagreeing, just coming at it from different extremes and experiences. If you think the autistic community can't have a voice that represents the majority in its own interests I think you might be interested in this debate I have been watching with interest. autisticadvocacy.org/2013/11/2013-joint-letter-to-the-sponsors-of-autism-speaks/

However on Tinsley House I disagree with you precisely because in denying the existence of SpLDs and ASD with the accompanying mumbo jumbo it will actually deter parents from seeking out the coping strategies that those of us with experience of helping ourselves and our older children (and believe me once you hit 17 you can only support them in their decisions, or at least it would be wise to only support them in their decisions because they are about to hit the real world) know are invaluable. It is one thing to support parents with exercises and diet that will help and provide them with a focus for positive action, I have no problem with that if it is honest about it's scientific basis but the bad science is dangerous.

Bad science IS dangerous.

TEACHH is the approach that the education of children with Autism is based on in the UK, and what I am guessing your friend is advising on, and yet it has no evidence base and is wholly out of date with all the research since the 70's.

See article just published here (though there are others like it): www.sciencedirect.com/science/article/pii/S0272735813000937

I agree with reasons for choosing TH. Shootingatpigeons, as a parent of a child with SpLD, I am surprised you can empathise with the burning desire you have for your child to feel good about themselves, to feel happy, and to 'unblock' or skirt round any blockages which may be occuring to their learning/ ability to express themselves etc. Isn't that why people go there, not to make their child 'normal'.

Theendgame, as for brushing teeth on one leg, ds1 can't brush his teeth (properly) at all and chews the toothbrush (yes, probably another sensory thing). I can't imagine what would happen if he tried on one leg going to try tonight though!

Anyone got any advice for my visit to the paed? I've not done this before.

By the way, I am not a fan or supporter of Autism Speaks either. I do not think we 'at war with Autism', or whatever stupid nonsense they often spout, though some of the resources on their website are good, such as early signs videos and questionnaires.

I would be hugely insulted if anyone were to suggest that giving a child the skills to advocate for themselves and navigate the world was to try and remove their autism from them or them from their autism.

However, I have heard this accusation many times directed at parents who simply want their child's entitlement of an education to match that of their NT peers. All of a sudden if you have autism, there is an implication that to stop you pause stimming for 5 minutes a day to learn to read is evil, wheras stopping a child from kicking a ball against the wall to learn to read is good for them.

Paeds are pretty unhelpful and useful for referrals to other medical professionals such as OT or SALT, but won't help with anything educational. If they were to make a recommendation the Local Authority can simply refuse to acknowledge it on the basis that the paed is a medical professional not an educational one.

It is a frustrating system where a medic diagnoses a child with a difficulty, yet the provision to meet the need presented by that difficulty lies within the budget of another agency. Harmonious relationship it ain't.

Would the paed refer to Ed Psych? Or is that school?

Why would the OT refer him back to paed?