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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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 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.

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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…

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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.

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

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

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

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

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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Master yoda has ear defenders too!

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

Look mummy “Master yoda has ear defenders too!”

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

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

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

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

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

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

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The book explained how the problems that we were seeing with the eating were related to all of the other things that we didn’t understand.  It explained how not wanting to have his head touched was related to not wanting to wear socks in the car, which was related to not being able to cope with loud noises and on and on and on…

Suddenly it all started to come into focus.

Suddenly we had a way forward,

Suddenly there was hope.

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

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

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

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

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