New year, new strategies. We're ready for the next level, but where to start?

[popgoestheweezel]

Still waiting (waiting, waiting) for Camhs appt for ds (5.8). Paed has sent letter to gp saying he has features of pathological demand avoidance and we are sure it explains him perfectly.
So, we have worked on the vitamins side of things and he is taking behaviour balance, magnesium, zinc, EPA omega and multi vitamins. The supplements have had a hugely positive impact on him. He has a good diet already too but I am going to work at getting more protein into him.
He's also having a weekly bentonite clay bath and epsom salts sometimes too.
He is having extra help at school in a social communication group which is great but I feel that we perhaps need to delve a bit deeper into the causes of his social communication symptoms iykwim.
I have read up quite a bit about retained reflexes and sensory processing. I have done the inpp questionnaire and they have said they can help and outlined their fees. Id be happy to pay if it will help ds and they do seem to be well regarded. However we are about 2hrs from Chester so it is a bit of a trek. My other reservation is that, due to his PDA, it is very difficult to get ds to do anything and we will struggle to get him to do prescribed exercises.
As an alternative I have contacted a local occupational therapist who is qualified in sensory integration. She would be able to observe ds in school and we would be able to go to her for therapy on a weekly basis (so she would take more responsibility for getting compliance. Hopefully, as she is not worn down by the daily grind of manipulating the demand avoidant, she'd have more energy than us).
I also wonder about his auditory processing as he hardly ever responds to his name (although that could just be him avoiding the anticipated demands), and also takes ages to process a question even though school say he is bright and has very good understanding and a remarkable memory.

So, I guess the questions here are:
What to focus on; auditory processing, retained reflexes, sensory integration or something else I've not thought of?
Where to go to get the expert help (we are in the east midlands)?

Sounds like you're very much on my 'wavelength' with regards to treatments and therapies. I've pretty much done everything in your list - and my number one recommendation to you would be Tinslet house.

Tinsley house is better than INPP. It's not close to you, but you only have to visit twice. After that you can do it by skype. It's also cheaper than INPP.

I do think INPP is good. Just that tinsley house is better.

But, after doing pretty much everything on your list, with good results from most of them, I'm amazed how good Tinsley house is. All 3 of mine (Aspergers, Dyslexia and Dyspraxia) have made excellent progress in the last 5 weeks.

For example, yesterday, for the first time ever, DS1 got upset when Reading a sad book. I think that's incredible, and not something I ever thought he'd do.

I haven't finished TH yet, so too early to say how much progrss they'll make over the next year. But I'm absolutely stunned by how much progress they're all making so far.

If you don't want to do Tinsley house, my next recommendation would be auditory integration training, which again I've had amazing results with.

Then after doing AIT I would go to an OT.

Thanks indigo, about how much does tinsley house cost?
You gave me some info on this before but December is manic for us so I've not had a chance to think it through properly. Increasing protein is your advice
I am just looking to buy the 'brain food plan' or should I read 'is that my child?' first?

I've just looked at the website and it says that The Tinsley House Clinic has a particular interest in the treatment of children who have previously been diagnosed with Dyslexia, Dyspraxia, ADD, ADHD, OCD and Tourette?s syndrome of childhood.
I don't think ds has any of those (his reading and writing have both come on significantly since starting on the supplements) his issue is PDA for sure IMO but as to whether we will ever get a diagnosis for such a niche condition only time will tell. Tbh my (perhaps naive) hope is that we will be able to help him enough that a diagnosis will be ultimately unnecessary. Ds has 101 symptoms of developmental delay in general. Most of them are relatively mild but added together they make life pretty challenging for him.

One big thing about ds is that he is an exceptionally unfussy eater and enjoys most things. He eats really well and although I could make some tweaks to improve his diet he is not at all carb dependant.

Those two books are almost the same you don't need to read both.
Brain food is slightly more practical, whereas is that my child is slightly more Philosophical.

2 things he is saying, which I very much agree with, which is why I was so keen to go to him

1. ADHD, Dyslexia, Dyspraxia and mild ASD are all caused by the same thing. Are really just different symptoms of the same condition. (which he calls developmental delay symptom) - now I know he is right with that premise, because my 3 all have different dx - but the same things help all 3 of them. DS1 and DD have no overlapping symptoms at all. I never expected that they would be helped by the same things. But everything that has helped DS has also helped DD.

2. to cure DDS you need to look at 4 things

• neurodevelopment
• diet
• vision
• hearing

Which is the 4 areas I was already looking at, and was already having success with. But he's the only therapist I know who looks at all 4 areas.

So he was exactly on my wavelength, which is why I went to him.

First visit is £250. Second visit is 8 weeks later and is £150. Subsequent visits or skypes are £70.

That sounds very good and impressive that you've had such results in such a short time. I think that for ds his issues are in so many areas and more chronic than acute that it would be ideal to have him seen by someone who looks at more than one area.
I will read the brain food plan then and email him for a bit more info and perhaps make an appt. It sounds quite reasonable cost-wise (especially as I only have one dc that needs it, does he do you a discount for your 3)

Pop - I've PMed you

Hi.

My ds1 went to INPP from march - Oct last year (we are also 2 hours away!!) and I was very happy with the results.

We went to Tinsley House last week and am very hopeful this could be "it" for ds1.

Ds1 also did a course of AIT in May last year and - personally - ds1 would not have been ready for the Tinsley House regime without doing the AIT and RRT first.

Best of luck (indigo is a genius btw!)

IndigoBell is giving you good direction here from what I know. Can I also throw into the mix for you to consider...an Occupational Therapist who is trained in Therapeutic Listening +/- Sensory Integration. Many of the treatment strategies that use 'listening' (Berard, Tomatis, AIT) seem to me to have the same fundamental principles. You may be able to find an OT trained in this approach reasonably close to you.

Sorry should have added; you can google the Therapeutic Listening approach at vitallink.net. (Do I need to add I have no connection with the company??) The owner Sheila Frick is an Occupational Therapist who travels around the world training OTs, Physios, SALTs etc

The local ot I have talked to already is qualified in sensory integration and also offers interactive metronome, listening program and Intergrative listening (but I don't really know what those are)

Oooh, I've heard of interactive metronome. Didn't know you could get that via an OT. (racks brain to think where I read about it)

Listening program is fairly standard.

But even I haven't heard of integrative listening.

So sounds like a fairly clued up OT

interactive metronome

Still can't think where I read about it though.

integrated listening

Also looks interesting......

Yes they all sound good don't they? Are they different kinds of auditory integration therapy though? Or would ait be different? I can't quite work it all out.

The ot's site links to the integrated listening link you posted, indigo.
I'm getting confused again I'm afraid.
The ot said we should have ds' hearing and vision checked before we come to her. Is it worth bothering with standard tests or should we see a behavioural optometrist/Audiologist or would this be something covered by tinsley house?
Maybe we should go to tinsley house first, then think about this local ot once we have done that????

I think your OT sounds very good.

However, I still recommend TH first. :)

TH checks vision and hearing. You don't need to go to a behaviour optometrist if you go to TH, as he actually does vision therapy. (TH is far better than the BO I went to, and I'd recommend TH as the best place to get vision therapy)

And you never need to go to an audiologist, because they don't do anything :)

AIT is 'competing' with the listening program, not with the other 2. (and IME AIT is better than the listening program )

But, yes. Still start with TH.

Thanks Indigo. That sounds great advice. I'll contact th today.

It came to me last night about his vision that he can never find anything. He will come to me in a strop saying that he's lost the toy he was playing with, i'll go to help him look and it'll be right there on the floor in front of him. I'll say "its just there, right in the middle of the floor" but he still won't see it until I literally point it out to him.
He seems to have no visual discernment in this way but he can read OK (not great but OK) and follows the words on a page without having to use his finger though so that seems contradictory.

pop I did a reply last night that I lost so.....
I think indigo gives good advice but I am going to disagree slightly.

You sound as if you have a local OT who is clued in. If s/he is worth their salt, they will not dissuade you from investigating Tinsley house et al.
However, your last post particularly is describing the kind of difficulties a child with visual perceptual problems would have. Visual perception is how the brain interprets information from the eyes and requires information from other senses to be most effective e.g. a sense of space for near/far discrimination, auditory for interpreting letters etc.
A comprehensive assessment of your child's visual perception is warranted (an OT would do that).

I think it is still worth pursuing that local option first/in tandem with TH.

The OT sounds as if they are very familiar with the range of options used in Early Intervention. Interactive Metronome is a rhythm based approach and is useful for helping with movement, recipricocity, speech rhythms, social interactions.

I am personally not convinced that there are 'better' auditory training programmes- many of them are similiar and build on early work done by Dr Tomatis (google) in France. I am however, convinced, that they have some effectiveness. The evidence base for their use is small but growing. Hope this helps.

Am reading this thread with interest. Would be interested to hear dolfrog's take on AIT if he's around.

Has anyone else had good results for their dc's with listening therapies?

Do you get a better result with a better practitioner or is it a treatment that anyone can do?

Dolfrog doesn't believe in AIT or any of the other listening therapies. Not because they don't work, but because they don't work for all kids.

They clearly do work for some kids.

It doesn't matter which practioner you chose - but it does matter which therapy you choose.

There have been lots of fighting between dolfrog and me threads about whether or not AIT works.

I can't find the one I want to link to, but there were about 10 people on there who had done AIT and were happy with the results.

As well as my 2 I remember BlueShark, EvieBaby, LouTBG, Becarooooo & CherryPepsi. But I think there were a few more as well.

And there was no one on the thread who regretted doing it.

For all of us it was one of many things we were doing, not the only thing we were doing.

The cheapest place to get it done is Here

The thing with ds is that he doesn't seem to have a clear cut main area of problems more a mixture of loads of milder issues but add them all together and its a pretty big problem.

From that point of view, there are probably loads of therapies that would benefit him but the trick is choosing the ones that would benefit him most efficiently in terms of time and money.

The big issue for lots of people with all these therapies is the lack of proof. But the way I see it is that even the most peer reviewed/evidence backed/double blind studied medications (for instance) don't work for 100% of people. In the field of developmental delay there is such a massive variation in the population that there is no chance of a one size fits all solution. It does leave the field open for the unscrupulous to claim they can cure without any evidence but that does not mean that some things don't work for some people. The problem is finding out what will work for your child.

Perhaps I should pursue both th and local ot in tandem as you suggest, wannabe. After all it's only money to lose and a happier lifetime for ds to gain and I'm definitely prepared to take that gamble.

I would love to try some of these therapies with ds but he won't engage - we wouldn't even get him to the building