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.

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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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Funny blue bird

Good news everyone, today we have welcomed a new member into our household.

His name is currently “Funny Blue Bird” as we let the kids name him, I think we may shorten it to “Blue” at some point in the near future.

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After school we all went to the pet shop together to choose him

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It was VERY noisy in the pet shop

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We had to buy him some food and a toy

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and be responsible for carrying the box carefully with 2 hands

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We had to take turns

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We welcomed him to our house…

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And showed him his new cage

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The cat is very interested in her new house mate.

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Welcome…”Funny blue Bird”

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.

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

Hyper

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…

Musical beds

It’s 4am here, and I’m just letting you all know that I am currently winning the game of musical beds which is being played out in my house.

The poor hubby is on the sofa after loosing his place to one munchkin, the second arrived soon afterwards wanting to snuggle across my feet.

So now I’m in the loft (kid’s bedroom) on my own with my I-pad,

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It’s big and spacious and cool and quiet up here, except for the sound of rain on the roof which I really love.

I find it hard to take the kids back to their beds when the come wondering because firstly i’m normally in such a deep sleep that I don’t notice them until its too late. And secondly I kind of think that they are going to grow up so fast that very soon they won’t want to come snuggling in our bed and ill miss that when the time comes.

So normally I count my blessings and let them snuggle, but tonight the constant tickling of Lillie’s hair on my feet combined with Charlie’s knees in my back were just too much to take.

So here I am in a peaceful and quiet place, sharing my thoughts with you, until someone notices I’m missing and comes looking for me….

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