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

11913975_10153445224531648_915656959234726377_n

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

Saturday, trampolines and feeding therapy

Until recently I have hated Saturdays, I have been trying and failing to balance the tiredness from having worked all week, with the desire to do something fun and healthy with the kids.

I needed to find something affordable which would tick all the boxes (yes, I know that’s kind of not actually possible but I needed to try). I really wanted something that would contribute to Charlie’s sensory diet, get us out of the house and away from the computer screens, be sociable, affordable (did I already say that?) and suitable for both children. I also desperately wanted to use the time to work with Charlie on messy food play. It’s not like I was asking for much???

The need to find the right thing was driving me crazy, and I was often left feeling deflated and deeply unsatisfied with whatever new thing or place we tried. There would be meltdowns in new places, sometimes the kids often just me. We are all so busy during the week and the sense of urgency to make Saturdays count was beginning to get on my nerves and I in turn was beginning to get on everyone else’s nerves.

About 6 weeks ago we were encouraged by a friend to try leaps and bounds, which is a trampoline club especially for kids with ASD and their families. I find it scary trying new places and seeing the noise and chaos of the other kids when we got there I must have had a similar expression to a rabbit caught in headlights. But in we went anyway, and thank God when we got in there I spotted some of the friendly faces of the other wonderful ASD parents we have got to know over the last year.

leaps and bounds 1leaps and bounds 2

The kids enjoyed their first session they had 3 or 4 turns of jumping, and while they waited there were plenty of other kids to play with, space to run around and soft play blocks to build with or hide inside. The teachers are lovely and are great with the kids, helping them and teaching them new moves each week.

leaps and bounds 4leaps and bounds 5

When we got home they were happy and calm and relaxed, now you can read all you want in sensory books about the benefits of this kind of proprioceptive input and how it regulates kids nervous systems, but to see the change in action is something else. They are almost like different children.

A few hours after getting home from our first session Charlie asked if he could play in his slime! Yes play in slime, this is almost unheard of, the slime was a prize he had won in school weeks before, once he realised how messy and sticky it was he was absolutely not interested in playing with it. It had sat on the shelf in the living room for weeks until this happened.

slime
Over the weeks we have noticed again and again how the massive dose of proprioceptive input from being on the trampoline, has a huge impact on Charlie for hours afterwards, which is great because it is giving us lots of opportunities to work on feeding therapy / messy food play afterwards. We are doing our best to follow the SOS feeding therapy method of introducing Charlie to new food experiences, we use this alongside “family style” meal serving and division of responsibility at mealtimes.

Charlie’s SOS feeding programme should consist of regular sessions involving a huge amount of regulating activity, heavy work, proprioception, deep pressure, followed by some fun activities involving food. Its hard to manufacture this in an artificial way, especially when we are all tired and I am feeling anxious, but this new Saturday routine seems to be working really well for us at the moment. In the hours after trampoline club Charlie is really really happy to have a go at food prep or messy play, it is fun to watch him relaxed and happy having a go at getting his hands and face dirty.

This Saturday we made Chocolate rice crispie cakes, everyone enjoyed the activity, Charlie helped lick the bowl clean, and got chocolate on his face, another first. What was also interesting was that hours later and the next day once the effects of trampoline club had worn off he wasn’t one bit interested in eating the finished product.

 

20140407-073232.jpg

20140407-073244.jpg

20140407-073303.jpg

20140407-073312.jpg

I’m finally starting to look forward to Saturdays, the added bonus is that while the kids jump and play I get to spend lots of time with my lovely new friends. Did I tell you about all the amazing parents I have met since Charlie’s diagnosis? Honestly these are the people who save my sanity, wonderful, beautiful, honest, quality people, one of them took this photo of me….

20140406-125514.jpg

Good News – We are getting a statement.

We received some really good news today from the SEN education department at the council. An e-mail confirming that Charlie will be getting a statement of special education needs, and that for now they will be naming his current school in the statement.

For anyone who is not in the UK, a statement of special educational needs is the legal document which sets out the help a child with additional needs must get in school and without which it is impossible to access special education.

We are so pleased to have gotten this far so quickly. I know lots of parents are being told that its impossible or unnecessary to get SEN statements or that their children’s needs are not severe enough, so I just want to write this to encourage you to keep fighting and keep trying because its not impossible.

I want to say a huge thank you to our advocate Stuart from S&A Education support who has been supporting us through this whole process, and without whom I don’t think we would have made so much progress.

I’m so happy that Charlie can stay in his current school, until a place becomes available in the specialist ASD school, he is so happy and settled in there and is really doing very well. The staff and the management are amazing and we are slowly getting to know some of the other parents which is great.

I was surprised how relieved I felt to get the news, I don’t think I realise how much the stress of not knowing what would happen next was affecting me.

I think I will sleep well tonight –

Sarah x

20140404-191000.jpg

Finally, I have a food thief

20140317-112102.jpg

Yesterday the funniest thing happened, I was sitting down with a cup of coffee for 5 minutes and I decided to have a sneaky treat. I just love these yummy caramel waffles and have found that I can buy the in Aldi at less than half the price of some of the other places that sell them .

I was just tucking in to my moment of self indulgence when I heard Charlie’s little voice say “ooh, I would like to try some of that mummy!” When I got over the initial shock I handed him my treat, he took a really small nibble of the edge and declared that he liked it, and that he would be eating the rest of it.

So it was goodbye caramel waffle and hello food thief.

My husband remarked how it was just like having a one year old who suddenly became interested in pinching his parents food. Charlie has never done that before and so missed out completely on that eating milestone. I remember when he was small telling the professionals “he doesn’t steal food from my plate” I wonder if they understood that this is something kids are supposed to do?

Charlie has made great progress this month trying out different types of breads. Last week my lovely friend bought him a new type of mini gingerbread man which he asked if he could try this morning, he enjoyed the packet he had and has taken another 2 packets to school with him.

Last week his teacher told me that he had taken the class to the park to feed the ducks, he gave all the kids 50:50 bread to use, but instead of feeding the ducks all the kids including Charlie ate the bread and the poor ducks went without.

So onwards and upwards…Let hope he keeps going with his new found interest in other people’s food.

Special schools for special kids?

I wanted to write this post because I have come across a few parents recently both in real life and on the internet who are in the process of deciding on a school for their special kids. I see fear in their eyes and hear it in their voices, and I know, I really know because I was there too, no so long ago. In a place where you have to make a decision with so very many unknowns, and such huge potential consequences.

There is so little known in the wider community about what special school are like on the inside, and I keep seeing that for those who don’t have children in special-Ed there seems to be a fear of these schools, at best that these school will hold our kids back or at worst an impression that they are like 19th century institutions.

Choosing the right school for any child is a tough decision, there are so many variables and unknowns, and every school and every child is different and has different needs. I admit that the idea of not sending Charlie to the same school as his sister was extremely painful for me. Last spring during a very well managed ‘transition’ we went to look at Charlie’s current school 5 times on the first 3 occasions I cried.

This wasn’t what I imagined our lives would look like, it wasn’t the dream I had of my kids being in the same school, with their wonderful little cousins, growing up together sharing experiences and teachers.

This wasn’t at all how I imagined things would turn out.

But, at some point I had to get beyond myself and my dreams and see that what was best for my kids, might not look like my dream.

There is a strong push to keep our special kids in mainstream education for as long as possible. Some children really are better off in mainstream education, in large classes, and busy lunch rooms, with lots of opportunities for interactions with lots of different people. And some schools can make inclusion work really well, others can’t and the kids suffer as a result. I’m often asked, couldn’t he cope in mainstream? I’m sure he could ‘cope’ but who wants to cope? school isn’t about coping its about living and learning and making friends and having fun.

For us, even though Charlie had enjoyed his time in mainstream nursery, I had to think long and hard about how much energy I had left in me to fight for help for him in school. How much energy did I have to be the one supporting the school and helping them to understand his needs. And so as painful as it was we took a leap into the unknown and accepted the place we had been offered in an assessment unit of a special school.

Charlie’s term dates are longer than Lillie’s, she is a little star, and on his first day, even though she wouldn’t be going back to school for a whole week, in a show of solidarity and to help him understand what was happening she got up and put her own school uniform on. We all took him and dropped him off for his first day at his new school.

Image

Charlie had only been there a few days when the head called, to tell me that she was “interested in Charlie’s sensory processing disorder” and that she had organised for a local specialist OT to come into the school to train the whole staff on sensory processing! I cannot even put into words how different this felt. For years we had been in a place where even the special needs coordinator would tell me that because Charlie was well behaved and compliant had no difficulties. She once said ” you will never get a diagnosis” and would tell me that sensory processing disorder is not a recognised condition, that there were no funds for additional support even for children with a diagnosis of ASD or that other children needed it more.

This school is as different as night is from day, they have taken his sensory diet and are using it enthusiastically. They bought him a mini trampoline, out of school funds, to use in the classroom. They have agreed to give him protected lunch times where they will only offer his his safe foods, and one to one support with exploring new foods at other times.

Charlie has been in the assessment unit for 6 months now, it is managed by a special school and run just like one. The have small class sizes, and helpful friendly staff. I have to say that although hard accepting a place there was one of the best decisions we have ever made. Charlie is making great progress, both academically and socially he loves the school and he has lots of friends.

A few weeks ago I was struggling with something else, and to get out of myself I decided to write to Charlie’s school to thank them for everything that they have done to help and support I am sharing this letter, because I wanted to help anyone who is considering special ed to be a little less fearful about what the future may hold.

Dear staff

I just wanted to take a minute to write and say thank you so much for everything that you are doing to help and support our son. To let you know how happy he is at your school, and how this is having such a positive impact on our family.
Before we came to this school we had become accustomed to having to fight tooth and nail for every little tiny accommodation, we were given no extra support, and even the people who were supposed to be on our side would let us down failing to turn up for important meetings, not keeping to written agreements they had made with us and not returning phone calls. We often felt that nobody listened to our concerns or took them seriously. I know many many other parents who are still in having these kinds of problems and I have to say that the staff at this school make a very refreshing change to this situation.
Each member of staff that we have met has always treated us fairly, they have done their very best to listen to our concerns and help us. The staff are relaxed and competent, friendly and helpful. They always have time to stop and talk with the kids and parents. They never come across as defensive, too busy or uncaring. The children in the school reflect this positive attitude, and our son has made great progress in many areas of his development since joining you. He has become much more confident and his ability to communicate has improved significantly. It is a joy to hear him talk about “all his friends”. He loves going into school and I know that he feels safe and happy in there and he is learning lots of new things everyday.
We are grateful for the fact that the teachers and staff treat all of the children as individuals, and that even though there are children in the school with far greater needs than our son they never dismiss my concern’s or his needs as being insignificant. This is especially important to us because his disability is kind of hidden and not obvious when you first meet him and we are regularly faced with disbelieving uncaring attitudes. We want to say thank you for the efforts you have made to both understand and accommodate his sensory processing difficulties. For the training you organised for the staff, the equipment you have provided, and the extra support you have given him with his eating.
We are grateful to Mrs K who is supporting us in finding a suitable place for our son to continue his education when his time in the assessment’ unit comes to an end. We hope that when he does eventually move on at some point in the future that he will be as happy as he is here and will receive the same high quality care and teaching, although I have to say that this school will be a very hard act for any other school to follow. We want to say how we are both thankful and relieved that Mrs K helped us to finally see an educational psychologist, after 2 years of us banging on doors and getting no answer, having the report from the educational psychologist is like having a missing puzzle piece that we have been desperate to find.
We are also grateful to Mr D, Charlie’s teacher, for the love and care he shows the kids, for all the hard work and attention he put into their education. It is a delight to see how he engages with the children and how much they love him. It is great that Charlie has such a positive male role model during his early years education.
We have found this caring attitude from the school staff extends even outside of school hours. One night we were struggling to find ways to encourage Charlie to eat in Mcdonalds. When Mrs H one of the teachers from blue group arrived in the restaurant with her family, she very graciously took time out of her family meal to sit with Charlie and encourage him. It is hard to put into words how much something like this which may seem small, actually really matters.
Please be encouraged that you are doing a very important job and in our eyes you are doing it very well. Whilst we know that this is what you are paid to do we also know that positive attitudes, love, care and understanding are things that money cannot buy. Being part of this school is a huge blessing to our son and to our whole family.
Thanks Again
Sarah, Will, Lillie and Charlie
Image

The endless battle of screen time

I have started trying to write this post on many occasions, and I keep getting stuck and it never gets finished, but today I am going to try again as its something that I have really been battling with over the last year, but I finally feel like the tide is turning.

20140125-175912.jpg

I do feel like I am making some progress,  like I am beginning to win the never ending screen time war, and have finally managed to get to a point where the kids know I’m not joking when I tell them they have reached their limit and they have to turn it off.

Over the last few weeks we have finally established some very clear limits, and although the kids think I am being mean I know it will be well worth it in the end.

For a while they fought against it and complained that they were bored, my reply was “Great that’s exactly what I wanted, now go and play with your toys, or read your books, or use your imaginations, or draw or paint or make something.”

There is just so much more to do with your life and so much more to experience.

When I was a kid there was lots of time to be bored, which meant that there was also lots of time to be creative and generally get into trouble. If we were lucky there was about 1.5 hours a day of kids TV programming and Saturday morning TV was a major treat. But if you missed it you missed it and for most of the rest of the time there wasn’t really anything on TV to entertain kids. Although I do remember watching lots of documentaries and quiz shows with my dad. I loved QED and blue planet, and I think some of my love for science was born at that time.

There were also no other electronic screens to move onto when the TV was off. No computer, no phone, no ipad and very few trips to the cinema.

I can’t even imagine what it must be like to be a child with a brain that is developing now here in the 21st century when there is never ever the need to be bored. Our kids can literally be entertained 24 hours a day by a wide variety of electronic games, gadgets and screens, there is endless variety, and they are portable, in the car, in the church, in the shops there is literally nowhere where a child cannot sit and play with an electronic device.

For as long as I can remember I have been working deliberately to reduce (or more accurately to stem  the increase in) the hours that our kids spend using screens. It is super hard, I mean its like a never ending battle like shovelling snow in a blizzard and its one war that I never though I would be fighting. Over the last year since I have been reading more about sensory integration, and neuro-development it has become clear to me that no matter how hard this battle is it is one which I must keep on fighting.

Recently I met a mother who said that she had been told that because her son had autism that she should allow him to use the ipad whenever he wanted for as long as he wanted, because it was calming and a good way for him to zone out when the world became too stressful. Whilst I whole heartedly agree that this is a great reason to use an ipad, and it can be very helpful for when our kids need a distraction when things are stressful, I really couldn’t think of anything worse than completely unlimited use.

If I let my kids do this then they would literally spend all day every day attached to the device. They dont even have to come off it to eat or use the bathroom, I have even had requests from the to be able to watch films on it while they have a bath….Errm NO!

I have to say that the ipad has been a God send for us when Charlie cant cope with so much sensory input, a long noisy church service or a family meal in a restaurant, but to allow him to have unlimited use of it just seems like madness.

Often Charlie wakes up and literally the first words out of his mouth are “I haven’t had any screen time yet, can I have the ipad now?” I have heard lots of “it’s not fair” and “we are the only kids who cant have…” But they are slowly accepting the rules and things are changing some mornings now Charlie even wakes up and asks for toys.

When they get home from school they know that they can have only one hour on their choice of screen, and there are rules about having homework done first and no screens during meal times.

I was taking a call from my manager when they arrived home tonight and I was so proud of them when no one asked for a screen and this is how I found them when I finished the call. Their cousin was visiting and Lillie had even managed to offer to help her with her reading homework.

Honestly my heart nearly burst…

20140130-165452.jpg

The worst bit…

20140116-142853.jpg

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…

 

20140116-142906.jpg