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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Finally, I have a food thief

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

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

So it was goodbye caramel waffle and hello food thief.

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

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

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

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

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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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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The Emotional Roller Coaster

It seems like such a long time since I have written anything new.

Maybe it was only about a week ago, I don’t know, but if it was only a week it has been a tough one. Life feels a bit like an emotional roller coaster at the moment, one that I would quite like to get off, or at least slow down so that I can see the view from the top of the high bits for a while if that would be ok please??

Its not even that we have good days and bad days anymore, it can change hour by hour. Also its not just Charlie’s challenges which are causing the roller coaster, they kind of add to it but there are plenty of other reasons why everything is crazy at the moment.

I suppose the biggest thing is that the charity I work for is running extremely low on funds which means that my job and the jobs of everyone I work with are under threat of redundancy. Sometimes it feels like it is too much and I just want to give it all up but even that is hard because I love the work that we do and our clients constantly remind us just how vital it is.

On wednesday morning I was feeling particularly down about the job and a bit sorry for myself until I got to the office where I found 2 ladies and a baby sitting on the steps outside waiting to see one of our caseworkers, they had been sat there in the freezing cold since 6 o’clock in the morning, because they have nowhere else to go. Our center is unique and there are very few other places where our clients can go where they will be welcomed and helped, so they come and they sit and they wait.

Life is hard at the moment but we must never forget that there is always someone who is fighting a much more difficult battle than we are, if our center goes then so will their life line.

On Thursday I took another lady who is a volunteer, client and friend all rolled into one out with me to a school to talk to the teenagers there about the work we do. She spoke about how we as an organisation are her family and friends, her occupation, accommodation and support. She cried, I cried, the teacher cried, the teeneagers did their best not to show emotions – as teenagers do. But I am in no doubt that they were deeply affected by her words.

Personal testimony is such a powerful tool for reaching people.

Last week we had had to make the devastating decision to cut the very small grants of cash support which we give to our destitute and most needy clients through our food store, this is a horrendous decision to have to make, but the cupboard is literally bare. This week the situation changed significantly for the better when a partner organisation stepped in to fund supermarket gift cards for the same clients.

The atmosphere in the office is stressful, people are on edge to say the least but then the next high came when a colleague from another charity called to ask if she and some friends could organise a fundraiser for us.

At home there have been similar highs and lows, Charlie and Lillie have enrolled in a circus skills class, after school on a Monday night, the group is specifically aimed at kids with special needs and their siblings. While the kids have an absolute ball, playing and learning there is tea coffee, support and advice for the parents. Its a safe place and its great to learn from and share with other people who a walking similar paths to our own. Even though we share hard stuff I always leave the group feeling like my spirits have been lifted.

School has been tougher this week. It started out great, with Charlie’s teacher having done a day of training around sensory processing during the half term break so on Monday he was excited to tell me how well Charlie had “modulated well all day”. This is both good news that Charlie is doing well at his self regulation and also that his teacher now has a much better understanding of his needs. However on the flip side school sent home Charlie’s first IEP, now from what I understand this is a document which we are meant to draft together in partnership with the school, but for some reason they went ahead and did it without us. We were invited to a parents evening meeting to discuss it, but that was later cancelled. I sent a note into school explaining that when the meeting does eventually happen that one of the things I will be wanting to discuss is why there is no mention of feeding or eating in the IEP or anywhere else at all. Now I’m sure that the school can’t focus all their attention on helping us in this area it would have been nice for them to acknowledge it in some way as it is our number one priority and primary concern around development, and we had made this very clear to them before we accepted the place in the school.

Looks like my note didn’t go down too well with the school…

So on Tuesday after school I ended up spending an hour in the there on my own and unprepared trying my best to explain to Charlie’s teacher and classroom assistant how important it is to us that they have a plan for how they will help him with his eating. Sometimes I feel like I am speaking a foreign language, which nobody understands. I had to bite my tongue when the classroom assistant told me oh he sounds just like my fussy eater. NO this is not fussy eating, this is not a kid who refuses to eat green veg, this is a kid who lives on only Cheerios and milk or toast and butter!!! She told me that he eats custard creams (cookies) in school, and had once licked a piece of ham, I asked why they had never sent this information home, she had no answer, so I told her that if she really understood how important it is to me to know that kind of information that there is no way that she would have not told me.

Even though in the meeting I asked for consistent, clear, accurate written communication around food the next day when I collected Charlie another classroom assistant announced that he had eaten Jelly (Jello) in class. I was shocked, “Jelly? I asked, “did he really eat jelly?” she said yes, so I pushed her further, “what colour/flavour/consistency/brand did he eat? How was it served? Was it in a bowl with a spoon?” “Oh” she replied, “he didn’t eat Jelly, he ate jellies, I mean sweeties like haribos”. He has eaten Jellies before, now Jelly is a whole different sensory experience, it is wet and wobbly and unpredictable, had he eaten Jelly I would have been pleased, no more like ecstatic, instead I just went away annoyed about the poor levels of communication.

But then come the highs, meeting and making friends with another parent at the school, finding an advocate to support and represent me in the process of communicating with the school and looking towards the future of possibly having a statutory assessment and statement. Little delights like the fact that it turns out that he is the father of one of my all time heros, oh and by some miracle, because God is indeed good, the head of the school happened to call me to discuss the situation and arrange a meeting while he was in my house, Oh and there is more…he is available and willing to come to the meeting with me.

So there you go, up down, up down and repeat all week long. Hold on tight, next week is coming way too quickly

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I’m going to cut the pumpkin…

Last night I was feeling fairly down about the amount of feeding therapy we have been, or rather haven’t been doing since the summer. We had made some progress during the holidays when we were seeing a friend once a week but since school started, the transition to the new routine and the end of the support we had has meant that we have all but stopped trying.

Charlie’s therapist messaged me, as part of the message she suggested a scooter board activity involving food. I cried – as you do!  As much as I knew she was right my heart sank, its hard to climb this mountain, some days it feels like its too hard.

But today is a new day…and a new chance to start again,

This morning Charlie was up bright and early, sometime around 5.30am, he got into our bed to snuggle as he does most days, by 6am I had given up any hope of ever getting back to sleep and so I decided to get up and go hunt for coffee. When we got downstairs I had the coffee first of course, and we played scooter board with plastic food. Because plastic food is easier than real food, It takes far less courage. Charlie made me some pretend coffee and we ate some plastic peas together.

When the game was finished he wandered into the conservatory and spotted the pumpkin I had bought yesterday.

Right out of the blue he said this…

“Mummy, I’m going to have the pumpkin and cut it and then I’m going to eat it!”

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with that he reached out and touched the pumpkin – this is not a small thing, any interaction with food is massive progress, I moved it closer to him and he hugged it.

Later on after swimming he worked with daddy to carve the pumpkin up, we gave him a butter knife and he helped daddy, hand over hand to cut the pumpkin into slices with daddy holding the sharp knife.

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This is my favourite…

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Later Daddy baked the pumpkin slices and the rest of us ate them,

Charlie didn’t and that’s ok, because from here from our new place, all interaction with food is progress and is a tiny little step on the road towards eating.
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