Retained reflexes experts - can I pick you brains?

[streakybacon]

I've just taken ds (13, AS/ADHD) for a routine eye test with an optometrist who I heard speak at an autism conference earlier this year. He has links with a chap who used to be involved with the Movement and Learning Centre in Edinburgh and he's recommended that ds should see him for an assessment.

I know nothing at all about retained reflexes and tbh I've come away a bit shell-shocked. I was expecting the optometrist to say all was well and there wasn't anything that could be done to help ds. So now I'm kind of torn between "Great, the RR guy might be able to help him" and "Bugger, where are we going to get the money from?"

He seemed pretty certain that the RR guy would be able to help with ds's ADHD symptoms that affect his academic work, which would be amazing. He is very bright and capable if working 1-1 but left to his own devices he's got no motivation or focus. This really is something we ought to do for him.

So I'm looking for other people's experiences with MLC in Edinburgh or RR generally. Please forgive me if I haven't a clue what we're talking about at this stage.

TIA.

Loads and loads of us have had very good experiences of retained reflex therapy.

Search old threads.

I don't know the place in Edinburugh you mention though.

If you really can't afford it I can suggest some stuff you can do without paying - but I'm sure seeing a therapist will be better :)

Is the guy you're talking about a behaviour optometrist or a retained reflex therapist?

Thanks for replying, Indigo.

According to the info I've found online, his specialities are Bilateral Integration, Neuro-Developmental Therapy, Johansen IAS (Auditory training), SAMONAS Sound Therapy (Auditory training), Sensory Integration, Strength & Conditioining.

I agree that it would be worth seeing him than getting tips from other people - this stuff needs to be personalised.

I've always felt ds's autism to be fairly mild, definitely at the higher end of the spectrum, but it's the ADHD that causes him most difficulty. You wouldn't know he had many problems at first glance - you'd need to know your stuff to recognise what's going on - so I'm a bit alarmed that so much of it is part of his condition and not his personality as I'd been letting myself believe.

The Therapy Chap visits the local optometrist every few weeks and it's been recommended that I see him next time he's here for a preliminary assessment to determine whether or not a deeper one and therapy would benefit ds. The first assessment we could afford fairly easily but I know the next stage would be very costly, yet if ds needs it then we have to do it, haven't we?

I need to research stuff online, and old MN threads too. Thanks .

If he does all that stuff he sounds really good.

I would def assume he's worth the money and it will help your DS a lot.

That kind of stuff has hugely helped my DS who's dx is Aspergers.

2 years ago I didn't think I'd be able to keep DS in school, I thought I'd have to HE.

Now, he's starting secondary school in Sep - and I'm not at all worried!!!!!

We have done more than what you listed - but that is where we started.

That's great that your son has been able to stay in school and I hope secondary works out for him. Ds has been home educated four four years as the school environment was so harmful to him. A lot of his difficulties come out of stress, and with that being better controlled he has made a lot of progress. It also helped us to understand him better and to get the ADHD dx which school were blocking.

But there's still a feeling that all's not as well as it might be and that we could do more to help him. He has responded well to medication for ADHD but the optometrist reckons that with intervention from his colleague we could well dispense with it. It's the ADHD symptoms that cause ds the most problems - even with medication his concentration and focus are poor and his self control/impulsivity are a concern. Academically, he works well 1-1 with a tutor but has no motivation to work independently, which I can see will cause him a lot of problems in the future.

What were your ds's main issues that have been helped by therapy? I'm interested to hear how it has benefited children who are similar to ds. There are lots of stories on the internet about how severe symptoms have been improved but I'd like to know the benefits to those with a more subtle presentation.

My DS doesn't have ADHD symptoms.

RRT def lowered his stress levels, and they were really getting in the way of him at school.

Helped his fine motor skills a bit.

Allowed him to tolerate being touched at school ( you know pushed in line etc)

The sound therapy he did helped enormously. Before he did that he couldn't stay in class, afterward she could.

I can't really remember every single thing. I'd have to go back over my old threads to remember.

But we've also had huge success with diet (gluten free / dairy free) and supplements (loads)

And after all the RRT stuff we went in to do another neurodevelopment therapy (TH) which has again helped.

So I woulda say over the last 3 years I've done lots and lots of different things, and they've all helped a bit but together they've helped a lot.

The biggest thing RRT should do is reduce his anxiety by getting rid of his Moro reflex.

And the sound therapy should make noisy places (like classrooms) less painful.

Here's a thread I started about my experiences years ago:

www.mumsnet.com/Talk/special_needs/1013333-Retained-Reflexes-update

And here's another one:

www.mumsnet.com/Talk/special_needs/1102848-Retained-Reflexes-update

I'd forgotten how much progress he made with RRT!

And I have truly forgotten how bad those months prior to RRT were when he wasn't coping with school at all.

You might find it useful to read 'Reflexes, Learning and Behaviour' by Sally Goddard. (includes testing for 15 reflexes) DS did RRT (we are lucky to live in the one area where it is available on the NHS) albeit at a younger age. Definately makes a difference to some things (like he stopped bet wetting and there was a reduction in anxiety) dependent on what reflexes are retained (DS had Moro, Spinal Galant and Tonic Labyrinthine).

ime though it has not resulted in improvement in the classroom but this is hard to say - we don't know how things would have been had we not done the RRT. His main trigger for anxiety at school remains his difficulties understanding the implicit social curriculum so whilst retained reflexes do not add to this by being triggered throughout the school day the therapy did not remove this trigger either.

I also can't compare private versus NHS therapy. However, the NHS therapy is very low tech - simple tests for retained reflexes and photocopied exercise sheets. The hard bit is doing the exercises every day for months. This approach may be less sophisticated but it is effective.

The private therapy is equally low tech :)

RRT is all about physical exercises you do daily for months.

Does the Sally Goddard book say the exercises you need to do? Or only how to test for them?

Your son has made massive progress, Indigo - well done to him and I'm sure it must be such a relief for you.

KeepOn - I'll look for that book - I do need more research before I make a final decision, though it looks at this stage as though we'll go for the initial assessment and take it from there.

My main concern is that ds's current problems are nowhere near as severe as the cases studies I've seen on the internet (including MN and your own son, Indigo). As I said earlier, I've always felt that ds's presentation was strongly linked to his stress levels and now that that's been reduced by taking him out of school he no longer has sensory sensitivities, doesn't get angry at all (he was always in trouble at school for lashing out as that was his first response - I guess similar to your son walking out of class), he is able to be independent with public transport and going to his activities etc. I admit to being anxious about spending a ridiculous amount of money, which frankly we don't have, on a therapy that might have minimal benefit to him. But then, I'm convinced that a few weeks back in school and he'd be back to square one, in which case I'd be making completely different comments and asking different questions. Perhaps the core problems are still there and need to be addressed.

OTOH his organisation is crap and will definitely hold him back at college and he just can't think for himself or sort himself out. That's such a basic thing and yes, it needs to be addressed, but can RR do this? I'm hugely impressed that this treatment has benefited children more severely affected than ds but I'm not sure at this stage if he would make a similar degree of progress.

Lots of research to do. Thanks for this so far. Very helpful.

I doubt your DS is less severe than my DS if you had to take him out of school.

If I'd taken my DS out of school most of his problems wouldn't have effected him day to day either.

However you do need to think very carefully about it if you can't really afford it.

It will help some of his problems. But not all. And it will cost a lot.

Disconnected Kids has a neurodevelopment therapy in it (not RRT, a different one) which you can do at home.

If you are nervous about spending the money on a therapist, then Disconnected kids is a good alternative.

Disconnected Kids is based on similar principles to Tinsley House, which I think may be more effective than RRT. So it is possible that disconnected kids would be better than RRT.

But unfortunately the only way to tell is to try both. :)

I doubt your DS is less severe than my DS if you had to take him out of school

You could well be right, though so many of ds's problems were due to lack of support - he went to two separate primaries and they were both dire . I don't think we had much choice in taking him out as he was being harmed. I think he might have done very well in school had he had what he needed, rather than what was cheap and available.

You've hit the nail on the head earlier when you said you can't be sure which methods helped and where your ds might have developed naturally. We just can't tell till we try, so I guess I'll just bite the bullet and take the assessment, and retain a healthy cynicism.

Will look at Disconnected Kids too, thank you.

indigo Goddard has how to carry out the various tests but not exericses to inhibit. Whilst I wouldn't ordinarily advise self-testing etc it is very easy to trigger a reflex if it is present and if it is not you will not be able to trigger it. Once you know if a reflex is retained, Google, youtube etc can be used to find the exercises that inhibit that particular reflex.

But RRT is only part of the exercises that are usually given. I must admit that when DS was first examined at CPOC I was expecting the all clear and did not know what Dr Grounds was talking about. From the ocular testing it was immediately clear that DS would also be found to have RR and so the inhibition exerises needed to be done at the same time as the other exercises in order that they could be effective.

streaky DS is also very mild if his symptoms are compared to more severe DC but the consequences are anything but mild in terms of his self-esteem and ability to access the curriculum.

Hi...@ streakybacon don't know whether you can pick up thread, I am looking into RRT for my 12yr son in Edinburgh. Did you do the sessions with the therapist? Would really really appreciate it if you could fill me in. Many many thanks in advance

Did you ever bite the bullet & do this? If so how did you get on & who was the therapist?