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

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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”  

“Bring Grandma” Family-Centered care

‘Family-Centered care’ it sounds so simple and so obvious.

But why it is so often completely ignored and misunderstood by the system?

Maybe it’s because the system that we are caught up in wants to treat everyone as an individual, I don’t know.

But we don’t exist alone, we exist as families, live and work and play, hurt and suffer, win and lose as families.

The family unit is like the body of Christ described in 1 corinthians 12:26 “If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it.” If one member of the family is struggling with a hidden disability then every member of the family is affected in some way, it is impossible not to be.

The system seems say this…

“we will help your child in school, you will help your child at home”

Then it says is this…

“We will tell you what to do and you can do it on your own.”

and this

“There is no money for therapy, you are your child’s best therapist”

How can this be the best way to help? How can this be right?

I spent much of the first 4 years of Charlie’s life asking for professional help, for someone to recognise Charlie’s difficulties as real, for someone to step in and help and to be the professional. I had never heard of Family-Centered care, but I did my best to try to explain that that was what we, as a family desperately needed.

Everywhere I turned I was told NO, I was told that my expectations were unrealistic and that what I wanted was simply not available. I don’t easily take “no” for an answer but by this time last year, I was so incredibly frustrated, my heart was broken and I was exhausted from trying to get blood out of a stone. I hoped that getting a diagnosis would change this but honestly, as I found out much to my disappointment, it changed nothing.

But something did change, and Thank God it did because truly I was reaching breaking point.

This time last year when we were planning to meet an OT trained in sensory integration for the first time, she told me to “Bring Grandma”.

She felt that if Grandma had some time during the week when she was caring for Charlie then she should be involved in his therapy too. Radical – I know but so simple and logical, and having grandma there at that first meeting has paid massive dividends. Why? because Family centered care is so important, because families are important and because anyone who is not part of the solution can quickly become part of the problem.

Charlie’s ASD presents as “mild” or “high functioning” because of this we were told again and again by teachers and professionals that his difficulties were our fault. We were sent on parenting courses, told to discipline more, be stricter, even to starve him into eating.

If I could single out one way in which Sensory Integration Therapy impacted my life, it is that every single therapist I have ever met has treated me as part of the solution, not as part of the problem. It is so refreshing to spend time with someone who gets that your child’s difficulties are not caused by you.

In August, I read this in Lucy Jane Miller’s book Sensational Kids p61

Parents who are living with sensational children need support. They want confirmation that their children’s problems are real and difficult to live with and are not the parent’s fault. They yearn to hear that they are doing a good job and that their efforts on behalf of their children are important. Parents of children with visible handicaps get a lot of support. Parents who have a child with the “hidden handicap” of SPD need support too, but are likely to be met with stares and demeaning comments when their children act differently than other children. 

In family centered care, parents and therapists become partners who assume different but essential roles. The parents identify priorities and are the experts on their child; the therapists measure progress toward the established goals and are experts in therapeutic technique. Using a family centered model, parents and therapists together use a specializes way of thinking about everyday life in order to achieve the goals that reflect the family’s culture and values………………….

……………Just keep in mind that family centered treatment is the standard of care for intervention and is widely available. There is no reason to settle for less

When I read this I cried. There it was in writing, exactly what I needed, and exactly what I had been trying to describe to everyone for years. It had a name, and there was no reason to settle for less.

We are blessed, because our family is so supportive, and because we have finally found the family centered care we were looking for.

There are so many families, still struggling to get the help that they need from professionals who tell them that they should settle for less than the best, or worse that their parenting is the cause of their child’s difficulties.

There are also families where grandparents don’t get it, where relatives simply don’t understand, but how can they when they are not treated as part of the solution? 

Grandma made Charlie a lovely weighted blanket, which he uses every night, to sleep and can hide under when he needs to feel calm.

Then this happened, and this was awesome…

Just before Christmas my sister took the kids out for a walk and came back with Charlie sobbing crying. She said he had fallen over but was fine afterwards, then about 3 minutes later he started screaming for no apparent reason.

He kept saying that his neck hurt but there was no mark or scratch or sting.

Then we found this tiny little tiny twig in his hood.

Looks like it fell off a tree and landed in his hood, touching his neck on the way past.

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Poor Charlie was so upset, I was sat holding him tight on the couch, trying to get in as much deep pressure as I could.

While my mum (Grandma) was looking for a heavy blanket to wrap him in I heard her say this to my sister…

“It must have brushed him lightly, and tickled or surprised him, The OT said don’t let things tickle him cos it will hurt him, if you are going to touch him do it firmly not very lightly because that won’t hurt him”

Knowledge is power and this is awesome, this is because Family-Centered care works, and no matter what you are told “there is no reason to settle for less”.

I think they have got the point

Ok so after last week’s meeting with Charlie’s class teacher and classroom assistant when I wrote this

 “Even though in the meeting I asked for consistent, clear, accurate written communication around food the next day when I collected Charlie another classroom assistant announced that he had eaten Jelly (Jello) in class. I was shocked, “Jelly? I asked, “did he really eat jelly?” she said yes, so I pushed her further, “what colour/flavour/consistency/brand did he eat? How was it served? Was it in a bowl with a spoon?” “Oh” she replied, “he didn’t eat Jelly, he ate jellies, I mean sweeties like haribos”. He has eaten Jellies before, now Jelly is a whole different sensory experience, it is wet and wobbly and unpredictable, had he eaten Jelly I would have been pleased, no more like ecstatic, instead I just went away annoyed about the poor levels of communication”.

On monday of this week I had a far more successful meeting with the head of the school. My new parent advocate was with me, which was great as it means that I have a witness should anybody change their mind as to what was agreed.

The head is really positive about sensory integration, she did one of the Shine SPD training days in the spring and has made SI a priority area for staff development this year. She paid for Shine to come into school and train the whole staff on their last inset day. She was great and was really open to listening to what I had to say. I was very impressed with her.

I said that I understood that our priorities were different, I prioritised nurture, feeding and sensory whilst she was prioritising education, but she said that she understood that without my priorities being in place that Charlie wouldn’t be ready to learn anyway so she wanted to work with us to get that right first.

She agreed to all of my suggestions for how we could work together better from now on.

One of the things we discussed was my request for clear accurate, written communication around anything to do with food or feeding. She agreed and said that she would pass onto the classroom staff how important this is to us.

This evening I received this note in Charlie’s link book

“At 11.30am Charlie said he was ‘starving’ and he ate a full bowl of ASDA smart price crispy rice cereal. He ate all of his packed lunch and ate an ASDA Smart Price rich tea biscuit instead of decorating it with fireworks icing!”

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I think that they have got the point!

 

Master yoda has ear defenders too!

Driving along the road today Charlie noticed this poster and got really excited, he still hasn’t quite got the hang of pointing things out with your finger as most typical kids do so it took me a while to see what it was he was so excited to show me.

Look mummy “Master yoda has ear defenders too!”

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Before we got married, and right up until the kids came along there were two places that the hubby and I loved to spend most of our time the church and the cinema. Yeah I know, not exactly the wildest places to go, but we were happy.

When Lillie was born we pretty much carried on as we had before with church, and as she was old enough we would introduce her to the cinema. We had no plans to change the way we lived but once charlie came along things changed dramatically.

Every cinema trip was a disaster, Lillie would watch the film Charlie would do his best to escape, we had no idea why, We couldn’t leave because Lillie would cry, we couldn’t stay because Charlie would cry, or run or want to disappear up inside my top. There was no way on this earth that one adult could take the two children alone, it just wasn’t safe enough with them both going in opposite directions.

It wasn’t long before we found that every sunday morning was beginning to follow the same pattern as the cinema. Not being able to manage in church was a far worse problem for us than the cinema thing because thats where most of our friends were. Having a child who couldn’t manage to get through a sunday morning meant some serious social isolation was headed our way.

This time last year, after we had walked out of yet another church service in tears. We were lost and confused and praying that God would give us some insight as to what the hell was going on and how we could make things easier.

Then one day the answer came, I came across a 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.

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The book explained how the problems that we were seeing with the eating were related to all of the other things 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 and on and on and on…

Suddenly it all started to come into focus.

Suddenly we had a way forward,

Suddenly there was hope.

Lots of you will have seen my kids sporting their ear defenders. This was one of the first and simplest changes we made, and one that has had the biggest impact on our ability to go out and have fun as a family.

Today is the first day of half term, this morning we went to the cinema and bowling alley, neither of these activities would have been imaginable without the ear defenders. Lillie doesn’t need hers as much as Charlie, but to keep things even we carry 2 pairs, they both wore them, the whole time, they were happy and comfortable and the whole trip was so easy.

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Later in the afternoon we popped out to the shops, we were only going for milk so we didn’t take the ear defenders with us, when an ambulance came past both kids stopped and covered their ears, they waited for the ambulance to pass, I waited for them to be ready and then we all carried on as if nothing had happened, no fussing, no crying, no meltdowns.

They are learning how to self-regulate, this is progress.

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Most cinemas now do autism friendly screenings, which is wonderful and so important, but we love to have the flexibility to be able to go where we want to when we want to, with only a few small adaptations so that our kids can be part of the fun too.

I’m going to cut the pumpkin…

Last night I was feeling fairly down about the amount of feeding therapy we have been, or rather haven’t been doing since the summer. We had made some progress during the holidays when we were seeing a friend once a week but since school started, the transition to the new routine and the end of the support we had has meant that we have all but stopped trying.

Charlie’s therapist messaged me, as part of the message she suggested a scooter board activity involving food. I cried – as you do!  As much as I knew she was right my heart sank, its hard to climb this mountain, some days it feels like its too hard.

But today is a new day…and a new chance to start again,

This morning Charlie was up bright and early, sometime around 5.30am, he got into our bed to snuggle as he does most days, by 6am I had given up any hope of ever getting back to sleep and so I decided to get up and go hunt for coffee. When we got downstairs I had the coffee first of course, and we played scooter board with plastic food. Because plastic food is easier than real food, It takes far less courage. Charlie made me some pretend coffee and we ate some plastic peas together.

When the game was finished he wandered into the conservatory and spotted the pumpkin I had bought yesterday.

Right out of the blue he said this…

“Mummy, I’m going to have the pumpkin and cut it and then I’m going to eat it!”

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with that he reached out and touched the pumpkin – this is not a small thing, any interaction with food is massive progress, I moved it closer to him and he hugged it.

Later on after swimming he worked with daddy to carve the pumpkin up, we gave him a butter knife and he helped daddy, hand over hand to cut the pumpkin into slices with daddy holding the sharp knife.

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This is my favourite…

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Later Daddy baked the pumpkin slices and the rest of us ate them,

Charlie didn’t and that’s ok, because from here from our new place, all interaction with food is progress and is a tiny little step on the road towards eating.
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