Beyond the Five Senses: Input Vestibular

OT Mom Says

Dr. Dad says, “I’ll rock the baby tonight.”

OT Mom says, “Well then, good night to the both of you.”

Like many parents, he often falls asleep while rocking her, but why? Not only are our babies warm and snuggly, (and most of us are usually at least a little short on sleep), there’s more going on. It’s the rocking. The slow, linear movement of rocking has a direct calming effect on both of them, thanks to their vestibular systems.

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Many of us are familiar with the five senses we learned about as kids, but there are several additional senses that have a ton of impact on just about everything we do. In a post a couple weeks ago, I provided some information about the proprioceptive system. Another super important system (that works very closely with the proprioceptive system) is the vestibular system.

So what is the vestibular sense? It’s…

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The COT petition update

It has been almost a year since COT originally produced and published their SI practice briefing paper, this was done without consultation with Sensory Integration Network even though the majority of SI networks staff and volunteers are COT members.

Over this time is has become clear the detrimental impact that the practice briefing is having on the provision of SI therapy in the UK, and I have personally come across many examples of both therapists and parents who have been unable to access funding for therapy and training as a direct result of this briefing. I am looking to build a data base of evidence and I would like both families and parents to let us know their stories. This can be done by e-mailing me at cotpetition@gmail.com
A small group of parents had a very pleasant meeting with 2 members of staff from COT in July of last year. The people we met with listened to us and promised us that new guidelines for parents and commissioners would be published, and also that the practice briefing would become a “working document” which they would be open to editing. Unfortunately these promises have not been kept. Although I met personally with Julia Scott at the OT show in November, I have since had no communication whatsoever from COT.

I still feel that this document published by College of Occupational Therapists will make accessing Sensory Integration therapy for our children even more difficult than it already is. Because of this i have decided that it is time to revive the petition.

https://www.change.org/p/julia-scott-ceo-college-of-occupational-therapists-withdraw-the-cot-sensory-integration-practice-briefing-april-2015

Please sign and share this link.

This document should never have been published publicly, practice breifings are usually published only for members. however against their own policies and usual practice this document was placed in the public domain. Since the petition was started the document was withdrawn from the public section of the website, however no formal retraction or apology has ever been made.

There are many other problems with the document,

The briefing appears to be trying to discredit the use of SI as an approach to helping our children; it tries to say in a few places that there is a lack of evidence to support SI. The problem is that they have left out any references to newer research which clearly supports the use of SI and shows that it does work.

The briefing says that SPD is not included in the DSM-V, this is the book which doctors use to find the criteria for diagnosing conditions such as ASD or ADHD. Because SPD’s not listed in the DSM-V book doctors can’t yet make a diagnosis of SPD and there are no NICE guidelines saying what the NHS has to provide. But the briefing leaves out other important points, it doesn’t make clear that there were some important changes put into the DSM-V about sensory processing, such as sensory difficulties now being included when doctors diagnose ASD.

The briefing advises OT’s to use their knowledge of sensory processing difficulties to advise families to make environments such as bedrooms and classrooms more sensory friendly instead of actually using sensory integration therapy.

So for example a child with oversensitivity to noise, may be advised to be in a quieter environment or use ear defenders, rather than receive SI therapy which would help their body to rewire their sensory systems to be able to cope with noisy environments better forever. As a parent I know which I intervention I would prefer for my child.

Why does this affect families?

As parents we want the best therapies for our children. In the UK it is incredibly difficult for the majority of families to access SI therapy this is because commissioners (the people who pay for the NHS services we get) are not investing time and money in training or employing the therapists who can help our children and young people through Sensory integration therapy. Our children and young people will live with the consequences of this lack of investment for the rest of their lives.

Commissioners have a tough job, the have to decide how they will spend the money that they have on services to help children and families living with conditions such as ASD / ADHD and SPD. There is lots of competition for what the funding can be spent on, and the commissioners have to be careful because they will have to answer for the decisions that they make.

Commissioners have to follow rules and get advice about where they are going to invest what little money they have. As well as taking note of demand from families they also have to look to professional bodies such as COT for advice and guidance when deciding how much if any money will be spent on SI training and therapy for children in the areas where we live.

This briefing affects all of our families because we want access to SI therapy for our children, we want there to be trained OT’s all over the country so that children can have access to SI when they are as young as possible. To bring about the changes we need to make this happen we have to have the support of the professional bodies like COT so that when commissioners look for professional advice and guidance that they see that SI is something worth investing in.

https://www.nice.org.uk/advice/lgb23/chapter/What-other-evidence-can-local-authorities-use-and-when

More information can be found on the SI network’s webpage

http://www.sensoryintegration.org.uk/Statement-in-response-to-COT-Briefing-SI-April-2015

Once again, Thank you so much for supporting this petition. It is so important to me that Sensory Integration Therapy be widely available to help as many children as possible, and I want you to know how much I appreciate your support in this matter.

Sarah

bubbles

 

Exciting Information about ESIC 2015 – European Sensory Integration Congress, Birmingham

I’m really excited that next week I will be attending this congress in Birmingham. I really hope some of you will be there for me to meet you.

I am blessed that I have had lots of support in being able to get there in person. From help with the kids, house and business, to encouragement, support and financial assistance from the people I work and volunteer for.

I just wanted to let you know that if you cant actually attend for whatever reason that there is a way that you can still participate and hear the speakers. I don’t normally share this stuff or advertise on behalf of others but I know that this is something that I would want to know about, and thats why I am sharing it here in my personal space.

I am especially excited that it is totally affordable and so accessible to way more people.

http://www.esic2015.eu/esic-2015-live-webcast

So for only £29.99 you can register online and view the keynote speeches and presentations from the Great Hall taking place on Friday and Saturday’s Scientific Programme via the live webcast (more information below).

This is awesome, because you can do this from anywhere in the whole world, without having to travel, or find child care or get loads of time off work. I am sharing this because I am passionate about SI, and I want as many people as possible to be able to have access to the information we have had.

I hope you can join us,

Sarah x

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We are really excited to let you know that the keynote speeches and presentations in the Great Hall at ESIC 2015, taking place on 11 and 12 September, will be streamed live for the two days. This fantastic addition to the Congress gives all our colleagues across the globe the opportunity to be a part of ESIC from the comfort of their own chair.

Keynote speeches include experts Dr. Zoe Mailloux, Prof Roseann Schaaf, Dr Diane Parham, Dr Tina Champagne, Professor Batya Engel-Yeger, Dr Susanne Smith Roley and Éadaoin Bhreathnach.

For just £29.99 you can register online and view the keynote speeches and presentations from the Great Hall taking place on Friday and Saturday’s Scientific Programme via the live webcast.

  • As part of your experience you will have online access to all the presentations and posters being exhibited over the duration of the two days.
  • As a member of our virtual audience, you will also have access to our delegate only social media, ESIC2015 group via Facebook. The social media team will be on hand, so that some questions from our virtual audiences can be included in any questions posed to the speakers.

Register your place now using the “Add to Bag” button above and be a part of Sensory Integration of the future. We hope you can join us!

ESIC 2015 Live Webcast Programme


DAY 1 FRIDAY 11TH SEPTEMBER 2015

09:15 – 9:30   Welcome
Rosalind Rogers, Chair of SI Network

09:35 – 10:05   The Power of Vision (and ALL the senses!): Looking Toward the Future for Ayres Sensory Integration.
Dr Zoe Mailloux

10:10 – 10:40   Evidence for Ayres Sensory Integration.
Professor Roseann C. Schaaf

10:45 – 11:15   Sensory Integration Intervention a Neurosequential Approach to Development Trauma
Éadaoin Bhreathnach

11:15 – 11:45   Break

11:45 – 12:15   Sensory processing and performance of adults in the workplace.
Annamarie Lombard

12:20 – 12:40   Participation challenges in Children with ASD and Somatodyspraxia.
Susanne Smith Roley

12:45 – 13:15   Proprioceptive Processing Patterns in Children with Autism and their contribution to Praxis and Participation-Preliminary results.
Elisabeth Soechting

13:15 – 14:00   Lunch

14:00 – 14:30   Ayres Sensory Integration and the experiences of a child with cochlear implants and sensory over-responsiveness.
Stefanie Kruger

14:35 – 15:05   Integrating Ayres Sensory Integration and DIRFloortime in the intervention with children with autism spectrum disorders.
Judith Abelenda

15:10 – 15:35   Applying Ayres Sensory Integration in Psychology.
Lourdes Guzman and Adriana del Carmen Castillo Sánchez Lara

15:35 – 16:15   Break

16:15 – 16:45   The ASI 2020 Vision & Mental Health Applications.
Tina Champagne

16:45   Close


PROGRAMME DAY 2 SATURDAY 12TH SEPTEMBER 2015

09:00 – 9:30   Sensory Processing Disorders– The Bridge between Underlying Neurophysiological Mechanisms and Daily Life.
Professor Batya Engel-Yeger

09:35 – 10:05   The Meaning and Implication of Sensory Experiences for Participation: The Voice of People with Autism Spectrum Disorders.
Eynat Gal

10:10 – 10:40   A Vision for Assessment in Ayres Sensory Integration.
Diane Parham

10:45 – 11:15   Toward Best Practice: Education in Ayres Sensory Integration ®
Susanne Smith Roley

11:15 – 11:45   Break

11:45 – 12:15   The effectiveness of various strategies based on Ayres SI model in intervention to children with SI Disorders.
Svetlana Kashirina

12:20 – 13:10   Community Occupational Therapy for Learning Disabilities, the process of providing Ayres Sensory Integration Therapy and approaches to this population.
Rachael Daniels andPam O’Hara

13:10 – 14:15   Lunch

14:15 – 15:00   “Is it Sensory or is it Attachment?” A case report of Ayres Sensory Integration Intervention with an adult male with Asperger’s Syndrome.
Ros Urwin and andÉadaoin Bhreathnach

15:00 – 15:45   Evidence for the effectiveness of occupational therapy using Ayres’ Sensory Integration approach as confirmed through the ASI Fidelity Measure.
Elisabeth Soechting

15:45 – 16:15   Break

16:15 – 16:45   The realities of SI assessment and intervention in third world settings
Annamarie Van Jaarsveld

16:45 -17:00   Closing Speech

Love, Jean – book

A kind friend has lent me this book and I am loving it,

The book is unusual in that it is a compilation of letters written by a.Jean Ayres who pioneered Sensory Integration theory and practice to her own nephew Philip R, Erwin, Philip’s story is written in his own words and there are many fantastic chapters written by Zoe Mailoux who was one of Jean Ayres’ first research assistants.

Philip had sensory processing difficulties but was unable to be treated directly by Jean Ayres or any other OT and so he engaged in an education and consultation process with his Aunt via letter. This indirect long distance “therapy” by letter consisted of consultation and monitoring – advice and recommendations which included sensory strategies.

It was life changing for him as it has been for our family.

I am so passionate about access to SI intervention for as many children as possible because I have watched a similar transformation in Charlie. It is touching my heart to read about the impact of SI by someone who had experienced it directly and was able to write about it in his own words. It is so encouraging when the going gets tough to remember that it is worth all the effort, and this is why.

Here is an extract from the book where Philip describes how Si changed his life.

“Looking back I remember the feeling of calm that came over me as I went through the therapy regimen so long ago. Before I started scooter boarding, I felt like I was trapped in an exoskeleton. I was all corners and edges. I moved in limited, uncomfortable patterns. When my bony carapace and I bumped into unexpected objects, my hardness made compromise impossible. I had to back up and yield. I had to constantly pick routes through life that wouldn’t trap my bones and me in tight corners or dead ends out of which I would be unable to extract myself. But after scooter boarding for a while my hard, exterior shells fell away. I became suppler. When I met an obstacle I was often unable to move delicately around it, perhaps squeeze by it, or mold myself into a shape or configuration more in harmony with it. After months of therapy, I had shed and regrown my shell so many times but less and less of it grew back after each shedding.

What Jeanie and Sensory Integrative therapy did to me was to re-wire me. While I experienced little improvement in my mathematical abilities, I was able to construct strategies that circumvented my shortcomings. My brain became more organized, less threatened by all of the things that the world was asking of it. I could pay attention. With these fundamental changes, coupled with the support from my family and the validation of my teachers, I was able to utilize a host of coping skills that had previously been looked down upon.”

There is now so much evidence for life long neuro-plasticity, Philip was older than the ideal age for starting SI therapy however the results of following his programme of sensory strategies were still enormous. We often search for complicated answers, strict protocols or diets to effect change for our kids, we want a recipe that works…Philip says this about what worked for him, it made so much sense to me that I wanted to share it with you.

“In the end, sensory integration therapy, special education support, and personal validation from my family, teachers and friends were the protocol that built the positive upon the positive, put the negative into context and made it survivable, and offered boundless points of opportunity that have seen me through to this day”  

Reviving my blog – starting with Our Sensory Story

OK so I have decided to revive my blog. Things have moved on for us a fair but since I last wrote, but one big thing that is still in or lives is Sensory Integration, and my passion to see it available to more families with special kids is growing every day.

I wrote this piece ages ago and I’m not sure why I never published it, but as it is about SI it seems like a good place to start.

I wish I could show you the change in my son over the last 3 years. The day we met our first Si trained OT he was unable to make eye contact, unable to eat anything other than cheerios with milk, I couldn’t take him out in the wind or rain. His speech and language were falling behind so quickly. My stress levels were through the roof. Sue, the OT we met that day was the first person I had met since Charlie was born who didn’t make me feel like the whole situation was my fault and also had some idea and a practical plan about what we could do about it.

Even now 6 years later I still don’t have the words to describe the agony of not being able to feed my child, it is such a basic need that should be so easy to meet, the instinct of a mother to be able to feed and protect her child is incredibly deep seated and the inability to meet that need causes a pain equally as deep, the devastation I felt at not being able to breastfeed however was only the beginning of the very long hard road we had just begun walking.

Baby Charlie eating cheerios

As Charlie grew feeding continued to be an ongoing battle and a huge source of stress. As a family we love to eat and socialise but most of the time we used to just avoid eating out with Charlie. Until we learnt about sensory processing and integration we were clueless, we had absolutely no idea why he simply couldn’t cope. Restaurants and even meals at friend’s homes became off limits; after a few meltdowns we decided it wasn’t really worth the effort. None of the professionals we saw during that time were able to offer us any answers or practical help. I had no support, no idea why my son wouldn’t eat, or why he couldn’t cope with other basic daily activities and no plan for doing anything about it.

One incident stands out very clearly in my memory. Charlie was able to sit upright in his high chair, I had presented him with a mixture of dry Cheerios and Smarties. He spent the next half hour using his new found skills to pick out each Smartie one by one and throw it across the room whilst eating all the Cheerios. I knew something was not right, but I didn’t know what. I had never met a child before who would actively select breakfast cereal over candy. What was going on? Unfortunately, it would be three more years before we understood any of these early behaviours.

Then one day the answer came, I came across the book which changed my life, It was old and tatty and kind of out of date, there are now newer versions with more up to date information, but this is the book that I will remember forever, this is the book that finally held the answers we had spent four years looking for.

The Out-of-Sync Child explained how the problems that we were seeing with the eating were related to all of the other things about Charlie that we didn’t understand. It explained how not wanting to have his head touched was related to not wanting to wear socks in the car, which was related to not being able to cope with loud noises in church, or wind and rain outside and on and on and on…

I had never seen the relationship between all these things,

Suddenly it all started to come into focus.

Suddenly we had a way forward,

Suddenly there was hope.

That day I copied these words from the book into my diary…
“Find an occupational therapist working within a sensory integration framework” I had NO idea what they even meant but I knew I had to find someone who fitted the description in the book, and there began one of the most interesting journeys of discovery of my life, I will write more about our journey in the next post.

It had taken me nearly 4 years and endless hours of researching, reading, many many referrals and appointments and a 2 hour drive away from home before I met my first occupational therapist. Finally I had found a professional who was able to look me in the eye and say with all honesty, “this problem is not in your head, it’s not your fault, I have some ideas of how we can make progress, you are not part of the problem you are part of the team, this can change.”

There are no words to describe how much I needed to hear that.

From the reading I had already done I understood that Charlie was struggling with tactile defensiveness, I had read about how using a brushing technique could help with this and I wanted to try it out. I asked the OT to train me how to use the brush and to oversee Charlie’s reaction to it.

Sue was careful to ensure that Charlie was happy to be brushed, she taught us how to use the brush at regular intervals during the day to give tactile input and how to combine this with proprioceptive input from joint compressions and other hard work activities. Charlie loved the Brush, Thank God!!

Since then we have worked with other OT’s, we have made many sensory environmental changes to our house, and Charlie has lots of sensory activities in his daily routine. We no longer use the brush unless he asks for it.

Life is good. Now I feel like I owe these people my sanity, I am in a better place, no longer fighting, but able to help others to fight for their own kids and that is a good place to be.

Sensory integration is life changing, not just for the kids but for the parents who are wondering around in the dark desperately trying to find answers and ways to help their little ones.

We owe a massive debt of gratitude to the all OT’s who have helped and supported us on our journey, but especially to Sensory Integration network for their ongoing work in promoting SI training and research in the UK, and for welcoming us as parents to be part of their team.

I need your help and support – Saving Sensory!

Dear Friends,

As many of you will know we have been using Sensory Integration Therapy to support Charlie for over 2 years now. Thanks to the therapists who have helped us we have seen fantastic results and now have a happy relaxed child who is able to learn and succeed.

Since then I have given up endless hours of my own time to try to pass on this knowledge to others, Through Addvanced Solutions, a local parent led training company, working with local OT’s and Clinical commissioners in our city to try to secure funding so that others can also access the same information and support that we have been able to.

I was therefore devastated to hear that a paper had been published which will undermine our efforts to get SI available to more families.

I have put together the petition below and I am begging you to please take the time to sign it. I am honestly not doing this to help my own child. Charlie has a wonderful therapist and I have plenty of support, but there are too many other families out there who are struggling because they are missing out and don’t have access to the support and therapy that Charlie does.

many thanks for your help

Sarah x

bubbles

https://www.change.org/p/julia-scott-ceo-college-of-occupational-therapists-withdraw-the-cot-sensory-integration-practice-briefing-april-2015