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”  

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.

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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.

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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.

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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.

 

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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….

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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

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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.

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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
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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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What can you tell me about your child?

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This week we were invited to have a look at an ASD specialist school as part of the process of being assessed for a statement of special educational needs. Whilst we still hold out hope that Charlie will be able to attend the same school as his sister at some point in the future we have to consider that there is a possibility that Charlie may be better off learning in a specialist environment rather than in a mainstream school.

The school was beautiful, and much more peaceful than I was expecting, I was particularly impressed especially by the quality of the older pupils, and their confidence and ability to speak to us and articulate their thoughts, even when I put them on the spot, in front of their teachers asking them questions about what the best and worst things about their school were.

They have a very high staff to pupil ratio, and great facilities for the kids. Also as its virtually impossible to access any statutory early intervention or therapy outside of the school system, then we will have to give this place some serious consideration.

When we arrived we met the headmistress in her office.

As we sat down she asked us to tell her a little about Charlie…

A while back I was given a similar question by a specialist teacher, she asked me “what is Charlie good at?” Looking back, I feel so ashamed to say that the question had stumped me for a few seconds. As parents of special kids we get asked so many times to describe our kids in terms of their diagnosis, difficulties or the challenges that they are facing that these questions, although more emotional, somehow become easier to answer. As we walk this road we become so much more fluent in giving answers about what they can’t do rather than what they can do.

After gathering my thoughts I told her that Charlie was good at paying attention to detail, befriending children who are shy. He is good at building with lego, following rules, making people laugh and using a computer, he can swim like a fish and run for a long time. The list is goes on further, but I wonder how few times do I actually speak it out?

Given the situation on the day and the type of school we were visiting, It would have been easy at this point to start by detailing all of Charlie’s challenges, after all how else would we have got to this point? To this day, and to looking around this school? Maybe she wanted us to justify why we were there, maybe I needed to justify why we were there.

But at that moment I felt a check in my spirit, Charlie is far more than his diagnosis and far more than he challenges we have faced as a family over the last few years.

Suddenly in that moment it was so clear to me that to have started the day by describing him only in terms of his autism would have been selling him short.

So instead I started by telling her how he is cute and funny and bright and confident, how he is super friendly, I talked about the things that he loves, his Lego and ninjas and angry birds. How he is happy and well behaved in school and how is his making great progress with his learning.

Only after I had told her what a great kid he is, and made sure that she knew he would be an asset to her school, I added that he has a diagnosis of ASD and that his main challenges arise from Sensory Processing Disorder, and how he thrives when he is in an environment where is sensory needs are met.

As the morning went to there were plenty of opportunities to talk about autism and how it has affected our lives and how we hope that the school can meet his needs, and offer him the kind of support he is getting in his current placement.

Charlie wasn’t with us on the day, but I know in my heart that if he was and if he had heard me speak he would have felt proud to be himself. Knowing that his autism is a part of how God has created him and that we are proud of all of who he is.

A growing family of furbys

I am pleased to announce that we are now the proud parents of 9 Macdonald’s happy meal furbys, yes I know this is slightly more Furbys than is necessary it appears to be a very fast growing family, and this is the story of how they keep multiplying. 

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Last week Charlie came home from school with a note saying that for their Christmas outing they would be going to a soft play area in the morning, Mcdonald’s for lunch and then to another afternoon activity. I knew he would have a fantastic day. I am finally beginning to relax into the idea that the school he is in is meeting his needs really well. I sent in a note explaining how we normally handle trips to Mcdonalds and telling them that if they were going to handle things differently that they should tell him before getting there what their expectations of Charlie were going to be.

My mum collected Charlie from school that day and texted me to say that there was good news waiting for me. This was the note that came home in his link book.

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This my friends is no small thing, whilst some may disagree that what is in Mcdonald’s chicken nuggets is actually meat, this is the first meat of any kind Charlie has eaten for 4 years. The previous time was the one serving of cottage pie he ate when he was 7 months old. Also this is the first time in his life that he has ever eaten chips.

I was so happy I actually wanted to cry.

So we were left with the question of where to go from here, how to reenforce this progress, and whether or not he would be able to generalise eating with the school staff to eating with his family. We have been told that generalizing is hard for ASD kids, they will learn to do something in one place and then only be able to do it there. But we decided that 2 days later we would have a go anyway, so we returned to McDonald’s and tried to recreate the magic.

I wasn’t holding out much hope that it would work, but I did explain to him that we would expect him to wait for his ice cream until after the Lillie and her cousin had eaten their nuggets.

We bought him his own Happy Meal as we have done a million times before, placed it in front of him and got on with eating our food. He did a great job of ignoring the food, playing with his furby and asking at least 100 times when he would get his ice cream, each time I told him that as soon as the girls finished their food then they would all have ice cream.

I asked him if he would like to try a chip, he said no, I asked if he would like to try a chicken nugget, I got the same answer.

I was kind of disappointed but not at all surprised that he wasn’t able to eat with us. I was right at the point of giving up the game when I looked up at the door and who was walking in but Charlie’s teacher. Not just any teacher but the very one who has been tasked by the Head of the school with working one to one with Charlie on developing his eating.

She looked at him and said casually “Hi, Charlie, are you going to eat your chips now?”

Like magic, just like that, he picked up his chips and started eating them. Like an angel, she and her family sat on the next table to us and she gently encouraged him to eat and he did, he had fun and we even had races to see who could eat their Chicken nugget the fastest.

It was hard to believe my eyes, having not seen him eating these things ever, hard to pitch my praise for him at the right level, and even kind of hard not to want to kiss his teacher. (I didn’t do it, I promise!)

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Today we decided to try again, I figure we need to get to a point where he will eat the food consistently in McDonald’s before we attempt to generalise it to home or another location, to do this we need to give him lots of opportunities to try, hence the growing family of furbys.

We all ordered Chicken Nuggets Happy Meals, even the adults.

Charlie tried the chips but they were too hot and he got upset, so we decided that he could have his ice cream while he waited for them to cool down.

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After the ice cream he was a little reluctant to try the chips so we turned it into a game and played races to see who could eat them the fastest, he loved this idea.

We were drawing quite a lot of attention to ourselves with the cheering, the Staff found it very amusing and when we explained the situation even came along to support him.

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After the chips were eaten and he was struggling to eat a nugget, Lillie was beginning to struggle with the length of time it was taking. Then once again the most wonderful thing happened, and another angel came to our rescue.

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In an effort to encourage Lillie to wait and Charlie to eat the restaurant staff brought out the face paints.

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For a good 20 minutes, while lillie had her face painted Charlie tried so hard to eat his nugget…

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and to reward him for his efforts he had his face painted for free, and Mummy had a Mocha with cream on top!

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And we all brought a Furby home to add to the growing collection.

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New shoes

Did you know that your feet, hands, scalp, and mouth are amongst the most sensitive areas of your body? You have a higher concentration of nerve endings in these places than almost anywhere else, especially the soles of your feet. For people struggling with tactile defensiveness these are the places they will notice it the most. For years I have covered my hands and feet in moisturising cream to try to numb some of the sensation, you will always find me wearing comfortable shoes. Also I will do anything, and I mean anything to get out of washing the dishes if there are no rubber gloves available.

When Charlie was little he would fuss and complain about his shoes and socks, he refused to wear new shoes and so after a few failed shoe shopping trips we decided that would buy him second hand ones from eBay in the exact same colour and style that he was used to just in half size increments.

At home he is always barefoot indoors, even when it is cold. Outside he doesn’t enjoy walking over new surfaces and hates to be barefoot on soft sand or grass and so wants his shoes and socks back on to go outside, no matter how time consuming that might be. Many times he will avoid going outside at all or stay put on an acceptable surface, once I saw him tippie-toe walk on grass in desperation to get to the trampoline when his shoes were not available.

As soon as he was old enough and able to take his shoes and socks off by himself he would. In the house, in the car, in the shops the church the school anywhere and everywhere. The place we noticed this most was the car, every single car journey would involve me trying to locate and replace the missing shoes and socks, it drove me nuts. The worst was on rainy days, as I would be the one standing with my backside outside in the rain, head in the car trying to locate the missing items and he would be screaming and crying if a drop of rain got to him. Charlie hates wind and rain and the open car door and extra delay was causing him to get splashed!

In august last year we met our speech and language therapist to talk about food refusal she sent us away to “read all the information on the autistic society website

We read this

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At the time we knew nothing about sensory processing and so were surprised to find out that the shoes and socks problem was connected to anything else. On another website someone suggested turning socks inside out or buying seamless socks. Seamless socks are expensive so we went with the inside out thing first and it worked. We also adjusted our expectations, for example now we wait until the last minute to put his shoes and socks on before leaving the house. If the journey is fairly short and he can understand that he should keep them on we ask him to do so. Finally car journeys became a little easier.

This works great but if he has had a stressful or challenging day at school I will know as soon as we get in the car because he will immediately ask me if he can take them off. I generally agree, its better for everyone’s happiness if the boy is comfortable.

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Last week Lillie needed new school shoes, she loves shopping and she thinks that the idea of going to a big department store in town having your feet measured and then spending half an hour driving some poor shop assistant nuts choosing between a few, not very varied pairs of black school shoes is just wonderful. For her it is like a dream come true, she loves all the attention and especially the prancing up and down checking that they fit properly part. Oh and the bit where she can choose which friend to buy a similar style to, this time after much deliberation she chose to have the same style as her cousin.

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We gave Charlie the option to come with us, we explained that it would be a big shop and that the lady would need to check what size his feet were, that he would have to try the new shoes on and that they would feel different from his old shoes. We showed him pictures of what the process was as it has been such a long time since we have bothered trying that there would be no way he would remember. We also asked Lillie to go first so that he would know exactly what would happen.

He asked…”When she does that it would tickle?”

We said yes and he agreed to give it a go anyway, his motivation is inspirational. I am so proud of him,

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And so for the first time since he was a very young baby we managed a successful shoe shopping trip and both kids have new school shoes. On his first day back at school he kept them on for the whole day…until the journey home of course.

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Fireworks

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It’s bonfire night in the UK tonight, and I wanted to share some pictures of the kids enjoying themselves

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There was fun and family and food and fireworks and sparklers!

Muddy wellies and piggy-back rides

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We are so grateful for the people who have helped us and the things we have learnt throughout this year.

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Charlie coped really well, in fact he loved it. He only cried when his new friend went home.

I cannot put into words how much difference, occupational therapy and ear defenders have made to our lives

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I hope you enjoy the pictures…

A day in the life…

 

So here is is for all of you who haven’t been able to see the original article. I did e-mail the editor and ask for permission to publish this over a week ago, and I have heard nothing so I am hoping that its ok to do this…

If you want to see the article in context you need to visit SI Network and pay the £15 membership fee, its not much and if you are interested in learning more about the therapy we use to help Charlie and how you could use it too I would urge you to join.

SInetwork

Charlie is an early riser and morning person, normally up and wide awake by 6am. Sometimes he has made it through the night in his own bed but mostly he has joined us in our bed at some point. Charlie loves to snuggle, he finds something calming in being under a heavy duvet squished between his parents. 
 “Where -illy?” Charlie asks looking for his beloved playmate and older sister Lillie, but she is still sleeping, and is not such a morning person so we leave her in bed for a little longer. 
 
 We start the day with Charlie’s tactile input. He knows the routine we have done for the last 9 months and happily joins in. “Which arm?” I ask and he willingly extends the right one and laughs. In the quiet of the mornings, he is happy and relaxed.
 
 Charlie loves breakfast. For the last 3 years, he has lived on a very limited diet of Cheerios and milk, toast and butter and certain brands of fruit juice, but today he wants cream crackers and butter. It’s a variation on a theme but still well within his comfort zone. He drinks his fruit juice through a straw, another small adaptation which has become part of our routine, and in my pre-coffee haze, I’m not really thinking about why it helps him, but I know it does. We sit together at the table, I drink my coffee and he munches away happily on the same kind of bland beige foods he has eaten for every meal of every day for the last 3 years. It doesn’t bother him as much as it bothers me, but I try my best not to let him know.

After breakfast if I am awake enough, we do some therapy exercises, commando crawling on our tummies, throwing and catching on our knees- or if it’s dry outside, we might bounce on the trampoline together and pretend to be power rangers. Sensory integration is fun but I’m sure my neighbours must wonder if I am crazy. Charlie wants to play on the Wii or watch TV but he knows that we have a rule that kids are not allowed screens until they are both dressed and fed, ready for school, so he goes to fetch his sister. 
 
 Charlie wears his uniform-it’s a soft polo shirt and we found some second hand well washed school trousers; he still needs some help to get it on but is beginning to attempt to dress independently. We leave his socks and shoes until the last minute before we leave the door, even with his socks on inside out he still finds it uncomfortable, so we try to minimise the time he has to wear them. 
 
 Lillie dresses independently and wants something different for breakfast again; she is as wildly adventurous with her eating as he is limited. We settle on yet another new kind of breakfast cereal. Lillie helps her dad make the lunches, in stark contrast to Charlie she loves variety of flavour and colour, spicy pepperoni is a special treat for her, and she adds some cherry tomatoes and cucumber slices to her box. Charlie’s box consists of only the foods he is comfortable with: more Cheerios, dry biscuits, more crackers, a bag of transformer snacks – currently the only crisp like snack he will tolerate, and a juice box with a straw. The same lunch every day. I’m glad that the school are understanding, and don’t insist on only “healthy” foods. When your child won’t eat in a typical way, it is easy to feel judged by others – even those who mean to be helpful. 
 
 We brush Lillie’s hair and tie it back in a ponytail. I look at Charlie’s hair and kind of wish I could fix it, but there is no chance. When I reach over to move a particularly unruly piece of hair that is sticking out. I am quickly reminded of the rules as he shouts in a voice which is suddenly anxious: “Noooo!! no touching my hair mummy, you hurting Charlie” I apologise and wonder if any of the other parents or teachers will notice that we never brush or wash his hair, or if they notice the slightly wonky hairstyle which is caused by my new found skill of night time haircuts while he sleeps.

sensornet2

While the kids get their screen time, I get my 10 minutes to run upstairs grab a quick wash and change into my work clothes. By the time I get down my husband has already repeated Charlie’s tactile routine, got the kids into their coats and shoes and we are ready to start loading them into the car. Charlie is ready with his coat hood up and a little umbrella in his hand just in case it suddenly starts raining on the 10 metre walk to the car. We do live in the north of England so this is a possibility! His ear defenders, spare clothes and therapy brush are packed into his school bag. We don’t hesitate or stop during the transition pausing or changing the plan now would cause Charlie to feel more distressed. Loading and unloading the car used to be a major battleground for our family, and would regularly result in one or more of us having a meltdown, and yes sometimes I would join in with the crying too.

I had no idea that wind, rain, socks, a passing truck, or a combination of all 4 could cause so much stress and chaos. I can hardly believe how much progress we have made in the last year. I clearly remember what life was like the days before I had ever heard the words sensory integration, back when I thought that an OT was someone who helped old people to walk or live at home again after a hip replacement. I remember the screaming and the fussing, and I appreciate every little victory we have in ways that typical families may never understand. 
 
 We are blessed that Charlie has a place in a school which understand his needs, the teachers are ready with toast and butter for the days when breakfast hasn’t been so successful. They incorporate lots of soft play, messy play and even swimming into his school day, and they remember that socks must always be on inside out. He has only been given only one year in this school while he is assessed and we had to fight to get it.  We are not sure where he will go next year or if at some point in the future he will be able to manage in the same school as his sister.

My work day is shortened to fit into school hours and I eat my lunch at my desk or in a meeting, so that I can leave earlier than my colleagues to be able to get the kids out of school. I am lucky that my manager is flexible and understanding, I love my job. I work with very needy people, during a time of crisis in their lives, but it is draining and by the time I get the kids out of their separate schools and we get home I am starting to feel it. Lillie chats happily about all her friends and their plans, she complains about doing her homework and the unfairness of spelling tests, as much as I agree with her I can’t let her know. I try to extract some information from Charlie, but apparently all he did all day was “run with Callum.” I dig his link book out of his bag and I am grateful that the teachers take the time to include some more meaningful information about his day in there, I read about what he has eaten, the activities he engaged with and how his pre- reading skills are developing. 
 
 Once home I chase the kids away from the many screens that they are so attracted to. We encourage our kids to do things in our house that other people might find a bit too permissive – jumping on the sofas, riding the scooter indoors, swinging in the loft, attempting to do a headstand or jumping between beds are all good activities, but they still love the screens and it’s hard to find the right balance. 
 
 For dinner my wonderful husband has made Spaghetti Bolognese he is gifted in the kitchen and we love our food, we cook from scratch and include lots of international flavours in our menu. Plain spaghetti along with plain white rice are both recent additions to Charlie’s short list of beige foods which he will eat, but tonight he is not interested in joining us, he asks for transformer snacks, we say no. So he wanders off to play with Lego.

We have learnt not to react; sometimes he will sit at the table; sometimes it is just too much for him, and I know he will probably eat later when it’s quieter and darker and after he has had some deep pressure or proprioceptive input. Our new vocabulary is almost as impressive as the change in our perception of the situation.

After dinner, things look pretty much like I imagine they would in any household with two primary school aged children. The tactile routine continues alongside homework and computers, play-doh and a squabble over which TV channel to watch or some toy that has suddenly become very popular again.

Bath time is Charlie’s favourite; the kids are still young enough to bathe together which is fun. He likes the bath deep and fairly cool. We have taught him to wear goggles and swim under the water face first, that way at least his hair gets wet. On the days that won’t work we let them splash the water as much as possible to get him used to it. Suddenly the deep bath water works it’s magic and he decides he wants to eat the spaghetti. Is it ok to eat spaghetti in the bath? I have no idea, maybe one day when I have time I will call one of my lovely OTs and ask them, but until then I’m just glad that something is going into his stomach. When the spaghetti is finished we let the kids play with shaving foam. Charlie likes the idea of shaving foam, but up to now only in the bath where his body is relaxed and he can wash it quickly off his hands when it becomes too much.

Finally, bedtime comes. We read a story, brush teeth (another small victory) and Charlie snuggles up in his sister’s bed. She has a memory foam mattress which she inherited from us, and Charlie brings his weighted blanket which my very talented mum made for Him. We allow the kids to watch a short Disney film on the old VHS player in their room. We say goodnight and give lots of hugs and kisses. 
 
 I don’t often make plans for the evening. It’s not that I can’t leave the kids with a sitter- they are really very well behaved for other people and we have some wonderful trustworthy friends but I am so very tired by the time that they are in bed. My bed looks so inviting by 8pm that I just give into temptation and get into it. I wonder about the spaghetti in the bath thing but I’m too tired to call anyone, so the question can wait for another day.