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integrating primitive reflexes (speeding up the process)

(28 Posts)
nutty1966 Thu 20-Mar-14 13:39:00

We're undergoing a series of exercises to inhibit several primitive reflexes including Moro(2), ATNR(4), STNR(4) and Spinal Galant(2). I'm certain this is the right path but it is really slow going... we've been working Moro for nearly three months and we're not there yet.

I've seen bits around the web indicating that other things can help facilitate the integration and can be done at the same time We've been advised to hold off on Vision Therapy for convergence insufficiency until reflexes are inhibited. DS is nearly eight and so desperately wants to stop his eyes jumping around so he can advance to "free reading" like his mates.

Does anybody have any experience with these or other methods in conjunction with inhibiting primitive reflexes?

Berard AIT (audio integration therap)
Cranial Osteopathy
Rhythmic movement
others?

grateful for any input!!

nutty1966 Fri 21-Mar-14 11:37:52

Bump

Redoubtable Sun 23-Mar-14 23:03:00

TBH I find your post a bit confusing.
What are the exercises that you're doing? Is it Primary Movement?

Or are you attending OT +/- Physio? Or just the Berard and Osteopathy?

Personally, I feel those approaches are useful as an adjunct to mainstream therapy but not as the primary approach for movement difficulties.

bochead Mon 24-Mar-14 00:31:03

It is slow - sorry but well worth it.

Noone will care when he's 25 what aged he mastered reading fluently at. A close friend of my mothers learnt to read at 13 and went on to become a very successful teacher, my best made didn't master reading till he was 11 and has done OK in life.

Focus on the progress YOUR child makes and do all you can to avoid comparisons - hard I know in such a target driven educational system as ours. Self-esteem in a child is everything, and they can get downhearted if you don't put your all into maintaining it while they plod away at their daily exercises. Try and find some meaningful concrete goals in between what you are doing now and reading fluently so that the child can see and appreciate the progress made. Dressing yourself, hopping, being able to tolerate a sensation you couldn't before therapy commenced etc - all these can mean a LOT to a child.

It sounds as if you might be using a behavioral optometrist - this can work best in conjunction with a regular OT who knows about sensory integration and a good OT should then be able to direct you to further sources of help.

AIT and the listening programme are different in how they work, and using the wrong one on the wrong child can make issues worse - so do check with someone properly qualified before shelling out! Sadly often direct providers only try and sell you the one they offer - it's best to ask someone with knowledge of both. (eg many OT's & audiologists/sensory experts know about them but don't deliver the therapy themselves) Do remember in the SN industry - LOTS of people want your money, but not all can actually help.

nutty1966 Tue 25-Mar-14 13:46:52

Sorry redoubtable - I put cart ahead of horse in my initial post. And thanks to both you and bochead for your kind input.

DS7 was diagnosed with dyslexia two years ago. Went through the usual phonics stuff at school to no avail. 18 months on, the school said that he was "keeping up... only just" and strongly urged that we send DS to special school each morning for Dyslexics (which would double the £18k we're spending today on his education annually.)

In the mean time the clever people at www.Easyread.com pointed out that DS looked to have eye tracking problems. In Oct 2013 we visited behavioural optometrist in London and had full diagnosis which included convergence insufficiency and very limited peripheral vision and needed lots of vestibular stimulation. DS has retained ANTR, SNTR, Moro and Spinal Galant. BO urged that we hold off on the "specialist dyslexia school" as DS clearly had issues that would respond to therapy.

London-based BO (who is not an OT) has prescribed a series of exercises to be done over many months, one at at time, until reflexes are integrated sequentially. After that happens we'll start the Vision Therapy.

We live outside of the UK and have no access to a local BO nor an OT who works on retained reflexes (they just don't exist in Switzerland), so I'm doing the work at home with quarterly visits to London. We're also doing "brain gym" work to stimulate vestibular and proprioceptive systems, added Omega3, zinc and magnesium to diet, and done a total diet overhaul including removing additives, trans-fats and E-numbers. Two hours max TV a week, no access at all to iPad, iPod or video games and tons of sport.

All is going swimmingly well. School has reported his attention has improved markedly, he's more tuned in, participates more and responds more accurately. He won a maths prize last month and has made perfect scores on his spellings for four weeks in a row.

I have tons of confidence in the path we're on. I just feel for DS as he is increasingly aware that he is still behind in so many areas, and suddenly has a lot of anxiety because of this awareness. He's home from school today because he had a massive panic attack due to heavy focus on football training at school... "mum, I'm scared of the ball... I can't see it coming at me!!" His convergence issues have a massive impact on his ability to do any ball sports.

He's making such progress in literacy - but he feels "stupid" and hates being pulled out every morning for the learning support sessions.

"auditory processing issues" was one of the tags that the Educational Psychologist used during the assessment a few years ago. With BO's happy approval we'll do a ten day course of Berard AIT during the Easter break after doing the hearing tests with audiologists in London next week. Bochead I do hope doing this test makes the best pairing of therapy and child. We're using The Sensory Clinic and having the tests done at Harley Street Hearing.

I'm sorry if I seem a pushy mum. Perhaps there's some of that but I feel we wasted 18 months in trusting the school's path with phonics and Nessy.... only to be told that we need to go elsewhere to help him read. And seeing DS's anxiety and feelings of being behind... I just want to do all I can to help DS gain ground and maintain his happy little nature.

Anyway, you've offered wise words. I'll try to chill a bit. Thanks again.

Redoubtable Tue 25-Mar-14 15:40:20

aha nutty that all makes far more sense.

BO's are fab for convergence/pursuits etc. so it sounds as if you are in the right hands.

Retained primitive reflexes would impact on reading, fine motor, handwriting, self-feeding etc
An OT would probably add in lots, lots, lots of core strength work to assist with inhibiting reflexes and to provide proximal stability.

I'm trained in Therapeutic Listening...I wouldn't completely agree that AIT and TH Listening are completely different- they have a similar history and the founder of Therapeutic Listening would say that she was very influenced by Berard. I find it a very useful treatment tool....in conjunction with other work.

Brain gym infinity loop is a lovely exercise for organising the eyes for reading as is the spin game

nutty1966 Tue 25-Mar-14 16:26:25

Brilliant redoubtable. I've just watched the videos. So nice to have a selection of OT videos I can rely on. I'll add them to our brain gym menu straight away.

We are also doing core stability activities once a week in a structured fashion (DS is seeing a personal trainer who has experience with children (coaching schools) once a week as he's into running road races) and is also doing Judo after school - they do lots of core drills with the warm up. Since we started this journey in January he's been doing both downhill and cross country skiing twice a week (an advantage to living in Switzerland!!) and swimming and I really see him transforming physically - and with a huge smile of confidence as it happens.

I'm very much looking forward to the AIT. Most of the information out there about special needs is related to autism. I'd welcome any links you have to auditory processing therapies helping dyslexic children.

In fact, I'm not convinced DS is "dyslexic" as the standard definition of dyslexia mentions 'an "unexplained" difficulty with reading, given the child's intellect, opportunities', etc. In my mind, with retained reflexes, convergency issues and possible auditory processing issues there is no wonder the poor lad struggles to read and write clearly!!

Redoubtable Tue 25-Mar-14 21:35:39

Re core:- I would be recommending that you do some of that every day...before school if possible, to set him up for the day. If he has the type of issues I imagine from what you've said, he needs to be really solid in the middle. Think Pilates type work- better a little every day than one hour a week.

If you're looking for evidence of the effectiveness of Listening type programmes, its thin on the ground. In fact, I think the American Academy of Pediatrics came out and said that parents should be cautious about claims made for its effectiveness.

I never use or claim it to be a therapy in it's own right. It's a tool I use, and I would always use it as part of a package dealing with everything else.

There is however, fairly solid evidence that some children with dyslexia have auditory processing difficulties. SaLT would usually deal with this.
There is also some evidence that some forms of dyslexia are associated with gross and fine motor difficulties (it is often co-morbid with dyspraxia).
Dyslexia is a spectrum (as is Dyspraxia) with no one definitive presentation.

bochead Wed 26-Mar-14 20:03:29

Interesting that you say AIT isn't completely different to the listening programme as caudwell fund AIT but not the listening programme. That's a potential cost differential of approx £2k to my poor purse (why my DS hasn't done any as yet basically!).

Food for thought - redoubt - thanks!

Redoubtable Wed 26-Mar-14 22:34:15

Boc As I understand it AIT was devised in France by Alfred Tomatis. Guy Berard trained with him, then set up his own version of AIT.
Paul Maudaule trained with Tomatis and brought the method to North America. Sheila Frick OT trained with Paul Maudaule and she devised Therapeutic Listening.

The evidence base for the 'family' of listening/music type therapies is very slim.

That is not to say that they are ineffective...a single case study on my DS would indicate that it has a significant impact on auditory hypersensitivity and spatial perception. (Full Disclaimer: I say that as a parent, completely biased by all of the sunk costs, unblinded, non-impartial).

Soooooo, what I am happy to say is: proceed with extreme caution and with a healthy degree of scepticism.

bochead Thu 27-Mar-14 11:35:25

DS's visual- vestibular-auditory system is out of tune. We've worked on the vision and the vestibular via a fantastic OT & BO who designed complementary daily excercises for DS.

Due due to costs and my sheer confusion about what seems like conflicting evidence, (& professional advice!) I've not tackled the auditory leg of DS's wonky stool yet.

I'll admit I am nervous of inadvertently making his pitch sensitivies worse not better as during growth spurts it's presented some real behavioral challenges over the years.

Redoubtable Thu 27-Mar-14 12:06:18

Is he sensitive to high or low frequency sound (or both?)
TL (for cost reasons) might be a good entry point for you.
Out of interest, did your OT do the Astronaut programme with him?

Redoubtable Thu 27-Mar-14 12:06:33

Is he sensitive to high or low frequency sound (or both?)
TL (for cost reasons) might be a good entry point for you.
Out of interest, did your OT do the Astronaut programme with him?

bochead Thu 27-Mar-14 15:21:52

We did some of the Astronaut programme & It was amazing!!!!!!! (NHS OT with 500 kids on her case load but a genius in my eyes). Trying to find/persuade a private bod to do it properly (as opposed to one OT visit per 6 months and my cackhanded attempts to do the exercises in between). However it doesn't seem to be that popular in the UK, often wish for a lottery win as the Americans seem to take it for granted.

It's the higher pitches, inc some I can't hear but they make the dog uncomfy too (Thank god dog doesn't melt down). However a few other sounds set him off too, most recently hail stones on a tin roof. He also has audio processing issues, for instance it's taken till age 9 and 2 terms of home ed for him to finally be able to distinguish "B" from "D" with phonics.

TL is??????

Caudwell children's charity can fund AIT but what's held me off applying to them is fear of making DS worse.

Redoubtable Thu 27-Mar-14 15:51:36

Sorry about the double entry. TL= Therapeutic Listening.

The Astronaut programme is a vestibular-auditory-visual programme; it goes hand-in-hand with Therapeutic Listening; a lot of therapists do both.

"The Americans take it for granted": again I have to caution (against myself in a way grin) that it is not a proven therapy. Even in the States, it is used a part of the clients prescription for Occupational Therapy- insurances wont cover Sensory Integration or Listening as stand alone therapies.

High pitch/frequency sounds are alerting/exciting.

Proprioceptive/heavy work is generally calming and organising...so if you find that he has been set off, offer lots of that (though I imagine you know that, from what you've already written).

"Fear of making him worse" in my experience, a lot of children on listening programmes, do get worse on starting. Including my DS who regressed and started bedwetting.
BUT, he made huge leaps forward within a month.
That would be my personal experience, what I've heard reported, what the programme would anticipate.

bochead Thu 27-Mar-14 21:56:11

what you say makes sense - he kept getting sent for adhd assessments for years by teachers who were then suprised every time when it came back negative (all FOUR times says this Mum rolling her eyes).

http://www.vitalsounds.com/default.aspx do some theraputic listening CD's and the astronaught book - worth trying the more calming ones even if they are unmodified?

At the moment I play him Gregorian chants (low pitched ones) as they relax him. (and me lol!)

Another forum member made him a weighted blanket last year - the woman will ALWAYS have my gratitude.

He's home edded at the mo so we've got the "space" for a short period of regression (so long as I know it's only temp) that being at school didn't allow for. Will apply to Caudwell for AIT - so thanks!

Redoubtable Fri 28-Mar-14 07:50:53

vitalsounds is the website of Sheila Frick...I reference her only because she is the OT I learned Therapeutic Listening with.

She also teaches the Astronaut programme and I know you can get the book/CD for it from her website. I dont have it and havent done the course (on long list of things to do).

Do you find the weighted blanket good? At particular times or is it a safety net for you?
I use them, but (IMO) heavy work is preferable as it is an active rather than passive sensory input IYKWIM.
See here or here

Good luck with the AIT. I'd be really interested to hear how you get on?

bochead Fri 28-Mar-14 15:12:14

weighted blanket has helped most with reducing the frequency of sleep walking incidents - sleep is a whole other ongoing battle lol! (partly my choice as don't want to medicate DS at present). During he day as DS is now home edded an old fashioned hug does the trick.

nutty1966 Fri 28-Mar-14 16:35:47

Great info. We've been using www.cdbaby.com/cd/lisaerhard1 which was made with Dr. Robert Melillo, author of Disconnected Kids. He has two versions; one to stimulate left brain and one to stimulate right brain. Our entire family is right brain dominant so we use the one to stimulate left. My husband and I are sure we feel a sort of "buzz" in our skull when we listen to it.

Do have a look. Melillo is American and very direct. I must have read about a dozen books so far related topics (including Robin Pauc's) and Melillo's is second only to Sally Goddard Blythe in my tops.

Three months in and last night's parent teacher meeting was just music to my ears "still a way to go but he's a different boy", "he's on fast forward in all areas of the curriculum", "teachers throughout the school are commenting". And to seal it, he got all fourteen of his spelling test correct today... Only three other children in the mainstream class of 16 achieved same. Happy mummy.

linspins Mon 02-Jun-14 21:17:24

Hi ladies, this is such an interesting thread. Thank you for the John Murray OT links. I work with some children who have sensory issues, and also one of my children is now 5 weeks in to a brushing programme for retained reflexes. I am interested in the integrated listening system (ILS), especially to see if it would help my anxious/cannot switch off at bedtime child. I'm thinking of renting the pillow, to play music to them. Hardly anyone I know has ever heard of retained reflexes, or ILS, and this includes some special needs teachers. If you happen to read this post and have anything useful to add I would be most grateful.

Runesigil Mon 02-Jun-14 23:59:44

I found out about retained primitive reflexes when I was trying anything and everything to primarily help my DD's fine and gross motor-co-ordination difficulties (although there are many other co-morbidities) Our NHS OT was very helpful although DD was resistant to doing the suggested exercises. I found a course of Alexander Technique lessons really helped her and she was given a lot of physical exercises to do to counteract her retained primitive reflexes. www.stat.org.uk/alexander-technique

Also at that time, about 10 years ago I think, Brain Gym was new and was ridiculed as Snake Oil as it's based on Kinesiology. Even then, I was way beyond caring if anything had 'official approval' we continue to try all sorts and if it's helpful (as AT and BG and many other interventions were) we practise it at home.

Re a weighted blanket, for an older child who may be a little self-conscious about friends seeing it, a very large heavy soft toy on top of the quilt serves that purpose for us. You can add sand or other weights inside if the toy isn't heavy enough on its own.

nutty1966 Wed 04-Jun-14 08:31:05

Just a small update on our AIT programme from original post dated mid-March. DS7 and DD9 both did 10 days of home-based AIT over Easter break; 30 mins each morning and evening listening to iPod music developed to address their specific issues identified on audiogram tests - all done through The Sensory Clinic.

During the course of AIT we stopped doing retained reflex integration so as not to overload their systems and have since then taken a break from RRI due to certain practical issues (but recommence RRI next week.)

DD's issues are very minor - we haven't seen much change in her. DS's issues have been more significant, with "dyslexia" assessment at the root of all therapies but other "symptoms" also being addressed.

We were advised that the full results of the programme would not be realised for 3-4 months. What we've seen so far:

1. after the fourth day of listening DS suddenly completely stopped resisting eating his veggies. We went from me coercing/cajoling him for 20 to 30 mins each meal to having to do NOTHING to get him to eat his veg. This completely shocked us. Six weeks on and DS ALWAYS eats his veg before anything else on his plate.

2. about two weeks ago I noticed that DS's fear/worry/attachment issues had dissolved. Previously he would literally wake up in morning and start surveying his world to remember what he needed to be anxious about. The same thing happened before bed at night. And several times during the day. We tried NLP, cognitive approaches, a book called "What to do when you Worry too much" (very good) and all sorts of distraction techniques. All helped a bit but the underlying problem was still there. Until about two weeks ago when they all seemed to completely disappear. DS had never done a sleepover before. He had his first last week, without tears or anxiety. He is now on a FOUR day school residential trip - without tears or anxiety. He's no longer afraid of his ICT teacher, being hit in the head by a football during PE, going upstairs by himself at night, or of the neighbours dogs.

3. He is MUCH more cooperative at home. He doesn't resist homework, he sometimes helps very nicely when I ask him to give me a hand with things around the house.

I can't be certain that AIT is at the heart of all of these wonderful changes, but I'm willing to bet that it has contributed significantly.

Now back to retained reflexes and Vision Therapy!!

linspins Thu 05-Jun-14 20:55:40

Thank you nutty for the update. We're due to go back next week for our first retained reflexes check up, to see if anything has changed yet. I think it must have helped somehow, because my child is now sleeping through the night, consistently, for the first time ever (7years!). They are also waking up later, and more calmly, and eating huge breakfasts. If we can get general anxiety cracked, and bedtime meltdowns, we'll be on the home straight. I know exactly what you mean about waking up looking for things to be anxious about.
Anyone heard of integrated listening system?
I really hope all this isn't snake oil, I need this to work so much!

sunshinemmum Sun 08-Jun-14 21:41:30

Hi Nutty,

Ds has had cranial sacral osteopathy followed by Berard AIT (audio integration therapy) combined with light wave therapy at age six at the Sound Learning Centre in London. We followed up with a neuro developmental delay package, which targeted retained primitive reflexes over the next six months. It was such a long time ago I can't remember specifically which reflexes.

We later did The listening programme delivered by his speech and language therapist. These treatments are still considered to be controversial, since scientific trials have failed to record an improvement and positive results are said to be anecdotal. The evidence on the videos we saw, gave us enough confidence to try it.

Ds has screamed with pain up to five times a night, for two years solid before we visited the cranial/sacral osteopath and we were dismissed by doctors, who suggested he had colic. After treatment he immediately slept through the night.

Ds had severe language disorder and a late diagnosis of autism. At six he had single words. During the 10 days at Sound learning he was able to hear us speak to him against the back ground noise of a café for the first time. Although his language problems were far from resolved and he needed SALT, his teachers described him on his return as 'it being like a wall falling down and the sudden desire to communicate, after having been largely mute as phenomenal.

We saw improvements in his hand eye coordination, balance and a reduction in hyperactivity and language but not significantly in social communication. I do think that these therapies are worthwhile but not instead of conventional services such as occupation and speech therapy.

Parietal Sun 08-Jun-14 21:52:39

just to point out that BrainGym is utter rubbish -
www.badscience.net/2011/06/kids-who-spot-bullshit-and-the-adults-who-get-upset-about-it/#more-2321

and so is cranial sacral osteopathy.

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