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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“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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On a path of self-discovery

There are lots of ways to learn about yourself, to go on a path of self discovery as it were. I’ve learnt the hard way that having kids is a pretty effective way to accelerate self awareness.

In part this is because they learn for your example very quickly and reflect right back at you all your attitudes and imperfections especially those you either didn’t know about or didn’t want to admit that you had.

They speak the way you speak, walk the way you walk, copy the way you sit or stand and even swear the way you swear.

Oh – my -God, I had no idea that OMG was part of my vocabulary until it came out of Lillie’s mouth, crystal clear. How embarrassing? OMG What kind of mother am I? Why did I teach her to say that? How do I un-teach it?

Sentences beginning with “My mummy says…..” fill me with a sense of dread. The thought these my little super spies are out at school all day just waiting to tell everyone about what mummy thinks or does is just plain terrifying.

If you want to know what I am really like – ask my kids, they will tell you the truth – guaranteed. Second thoughts, it’s probably best if you don’t actually do that.

So…one thing that I have always known about myself is that I love to read, I love to research and my new favourite subject is sensory processing. One day as I was reading away trying to find out more about tactile defensiveness so i could better understand Charlie and I came across this in a blog called So Close,

“It was a fascinating workshop. She started off by asking us whether any of us were sensory defensive and two of us put up our hands. She said she can always tell which of the women are sensory defensive by looking at them. Usually no make up (check), hair very short or tied back (check), non-fussy clothes (check) etc.”

OMG does this woman know me?

I never wear makeup if I can help it, I get stressed out if my hair is not tied back and I always try to have my clothes as comfortable as possible. I thought I was just being me. I have reached a point where I am able to be so concerned with being comfortable that I no longer care at all if other people think that I look boring! Actually I don’t think I ever really cared all that much.

The photo below was taken on a family holiday to Tenerife, let me tell you, this is my idea of hell, I don’t like swimming with fish, and I don’t like the idea of little fish nibbling my feet, this for me is absolutely not a relaxing sensory experience.

As it turns out Charlie is not the only member of the family who has some issues with tactile defensiveness.

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