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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The worst bit…

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Unfortunately our first adventure with funny blue bird has not been so much fun. Poor Charlie woke up yesterday morning with a high temperature and a cough and so was home sick from school making sure that the budgie doesn’t get too lonely on his first day.

I feel so sad for my little boy who is sick with a cough and a raised temperature but wont take any medicine to help and doesn’t complain about it either, just sits in the chair with big sad eyes.

Its hard to know how he is feeling because he doesn’t complain at all, he never ever tells you that he is feeling ill, and because of this sometimes I wonder if he has been ill and I could have missed it completely.

He wont take and medicine or health foods to strengthen his body or make him feel more comfortable. This is the part of selective eating / ASD that I hate more than any other. The part where he cannot be bribed or manipulated or forced to take the medicine, he is so stubborn and as soon as he sees it coming just clamps his mouth closed. Maybe it’s unfair to say that he is stubborn, I am sure that if he could choose not to fear new things and not to have such severe sensory issues around eating that he would much rather take the medicine and feel better for it.

He will sometimes eat sweet foods like gummies but he doesn’t see them as a treat or reward, he hasn’t eaten much at all today only some crackers and some tortilla chips.

This has happened before, the first time was terrifying, he must have been about 2 years old when his temperature went up to over 40 degrees, we called NHS direct and while the nurse there reassured us, they could only advise on ways to keep him cool. Thank God for Internet forums full of mum’s with children with similar difficulties who are able to give support and practical advice. One mum shared that she keeps a stock of Paracetamol suppositories in her house, just in case of emergency. From that day on so did we, and although we haven’t had to use them yet its reassuring to know that there is always a plan B.

Having been here before its less frightening, but it still makes my heart sad

Everyone’s experience of Autism is different, and I know that everyone has a different “worse bit”, for some families it’s supermarkets, unhelpful schools, meltdowns, IEP meetings, forms, doctors who don’t believe you, violent behaviour, bullying, sleepless nights, the list is endless…

For us it is this…

 

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“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.

twig

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”.

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.

Out-of-Sync_Child_

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.

Moving the furniture

I love it when you meet another person who understands, I mean really gets it, because they have lived it, or are still living it. The kind of person who only needs to look at you and you know without words that they have been there and that they really, really understand.

This morning she was there, the only one other parent I ever see when dropping Charlie off at school. I don’t know why their child is in the assessment unit with Charlie, but I imagine that our boys share many of  the same difficulties.  Most of the other families have opted to accept the offer of free home to school transport which comes with special education. We declined it because we felt that he was so young and also that it made his day unnecessarily long. Besides the times for drop off and pick up were difficult as we had to take Lillie to her school at the same time.

Because Charlie is in the assessment unit, we take him into the school through a separate entrance, although we see the mainstream kids and their families they use a different way in and out. So its just us and Sean’s parents who sometimes meet if we happen to arrive at the same time, which we did today.

While we were waiting to hand our boys over Charlie’s teacher Mr D came out and  informed us of the new building project, an extension which is to be built over the half term break to make the classrooms bigger. He said that they had already begun moving the furniture in the classrooms, and so instead of focusing on  teaching the children academic stuff this week they would be focusing on helping them to cope with the change and remain calm and happy.

I love this guy, I love that he knows in advance that moving the furniture without notice is not something that you can just do. I love that his priority is helping the kids to remain calm and be able to cope with the change well. I told him that that was great, as far as we were concerned that our priorities were the same, that the kids manage well and are helped to stay calm and happy throughout the change, they can learn about rocket science another day.

Sean’s Mum looked at me, our eyes met so quickly and we exchanged the smile, you know, the one that carries more meaning than a thousand words.

And right then I knew that I was with someone who gets it.

Avocado Baby

A year ago when Charlie’s speech was quite delayed, he could only make simple requests and would often get his words muddled up. However he still managed to show me that he understood some pretty powerful stuff.

One day he insisted on bringing this book home from nursery school for me to read to him.

This was unusual behaviour for him and this was the only book that he ever asked to take home.

The book was called Avocado Baby,

avocado baby

the heartwrenching story went something like this…

There was once a baby that refused to eat, his mother tried everything…

avocado baby 1

She was out of her mind with worry, she didn’t know what to do and so she cried.

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Charlie’s only comments on the book were

“Like mummy”

“mummy cry”

I was so shocked when I read the book to him and when he pointed to the picture of the mother crying. Really, really, really deeply shocked when I saw the level of understanding he obviously had about our situation. This was a child who could barely communicate through speech, who couldn’t get the difference between up/down or open / closed, who would still lead you by the hand to the things he wanted and grab your face to get your attention.

At the time he was being assessed for and was eventually diagnosed with autism.

When people talk about autism they talk about “poor theory of mind”, and “lack of empathy.” It sounds so hopeless and empty. I’m not convinced that the generalizations that are made about autism are 100% true for every child.

Maybe the generalizations are wrong, maybe the diagnosis is wrong, I suppose only time will tell.

The book has a good ending, the family in the book finally discovers avocado pears, the baby will eat them and he grows strong and healthy.

Charlie has made massive progress over the last year, his speech and language and social communication have improved beyond measure. His feeding still remains a challenge, but we have faith that things can and will change.