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Open letter to John Caudwell

Dear Mr Caudwell,

I am writing to share with you this simple picture and express my lifelong gratitude to you for being involved in its creation.

The picture is of my son Dylan partaking in one of his favourite activities, eating chips. This picture may not appear as wonderful as I am portraying it but please bear with me as I go back in time to the beginning; believe me when I say, for me, the story behind this picture is nothing short of amazing.

See, aged 3 Dylan was diagnosed as having autism. He was non verbal and didn’t engage with anyone, he attended specialist provision throughout his education. As parents we always expected more from the education system he was attending and, as so many parents do, we researched what else we could do to help Dylan.

Fast forward and Dylan had been in the education system for four long years, he was becoming increasingly anxious and withdrawn. He was still non verbal and becoming frustrated with his inability to communicate. He would hide his school uniform, displayed worrying behaviour and a range of unexplained injuries, we really feared for his future. Looking back now still makes my blood run cold.

We felt trapped within the system; We were told by professionals that we were ‘doing all we can’, ‘Dylans getting the best support’, there was no-one who could help us and we felt as a family we were rapidly losing Dylan as he withdrew further and further away from the real world.

Throughout my research to learn more about autism and how to help I found many suggestions for therapies which could help Dylan. One really stood out as being logical, individualised and effective however also hellishly expensive. It was with further research that I found your charity, Caudwell Children, a charity which helps change the lives of disabled children by many means, including allowing part funding for the ABA (Applied Behaviour Analysis) therapy which we so desperately needed to help Dylan.

Thankyou Caudwell Children for your support for the last 6 years. That’s right, for 6 long and reliable years you have awarded Dylan a grant to help cover the costs of this therapy. The work that has occurred with your financial support is nothing short of miraculous! I could go on for ages telling you examples of the difference that this therapy has made but instead I think the picture below encompasses it all.

You see, Dylan used a communication device to request his beloved chips.

He stood in a queue and waited his turn.

He made eye contact with the lady serving and paid for the chips himself using a prepayment card which he has learnt to use.

He then sat himself down and waited patiently for them to arrive and thanked the waitress again with his communication device.

He then opened and poured a small sachet of salt onto the chips and ate them with a fork.

The skills used for this were not taught at school, nor were they part of the planned curriculum, prior to ABA therapy we were told that because of Dylan’s autism he would have to live without these skills as he was incapable of being taught them. With your help these tasks have been taught tiny detail by tiny detail to provide Dylan with skills that will promote his independence for the rest of his life.

We simply could not have done this without your help.

Today, Dylan is so happy, still with only emerging verbal speech but far less anxiety. Dylan is becoming more socially interested in others, no longer fearful of the outside world. He is learning to use his communication device to talk to people and potentially ask for help.

A dear hope of mine is that one day that Dylan will have friends.

All of this; the progress for him and our positivity for his future is directly attributed to Dylan’s ABA programme, the combination of his wonderful consultant who directed his curriculum and yourselves as a charity for making it a reality.

Sadly the decision was made as an organisation to cease funding for ABA and so after Christmas Dylan will no longer receive financial support from Caudwell Children, I understand that you have reasons for this. Luckily for Dylan the seeds of knowledge and positive learning have been sown and we as parents will endeavour to continue this stream of development ourselves to the best of our ability.

As a parent of a child with autism, since Dylans diagnosis I have had many bleak and worrying times however I doubt many moments will feel as dark as the moments prior to us removing Dylan from school. To have the ABA programme that you helped fund for him to move onto and the magic that has occurred in the last six years due to it has changed all our whole family’s  lives and enlightened the darkness.

Dylan’s future is positive and, so much that would not have been possible for him now is, because of your financial assistance. And for that, I thank you.

With kindest regards.

A proud mumma

 

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Holding hands and praying for a green man 

Roads.

Difficult to navigate with lots going on, traffic in both directions, potential danger everywhere AND a journey to complete. 

Dylan had been working hard at home on crossing the road and adhering to road safety in an effort to increase independence with slow but steady progress.

I can walk along the pavements with him and I don’t need to request that he holds hands with me anymore. He often just links arms with me for stability, Dylan tires so easily when walking, and knows when we approach the kerb that he needs to hold hands, stop at the edge of the road and await either verbal instruction or discussion about our surroundings and how we can complete this crossing safely. 

Now we are in Greece the rules have changed. We have a 20 minute walk from the hotel to the beach. The traffic is fast and flows on the opposite side of the road. There is a large volume of noisy older cars and scooters and an absence of pavements. There is literally a fainted partially painted line approximately half a meter from the edge of the road. This indicates where the walkway finishes and the busy road starts. The difference between Greek and UK roads is huge.

We have visited Greece for our holidays for the last 4 years so we are accustomed to the differences. Dylan manages this well usually. 

This time round with the teenage defiance, agitation brought on by the blistering heat and non stop sweaty hands Dylan refuses to hold hands; absolutely point blank at times. It’s exasperating and terrifying just like when he was 6 or 7 and we could compromise by having him hold onto Graces pushchair. Today we have nothing but empty pleas and trying to hurry the situation along, frantically trying to avoid a catastrophe.

Not having the safety net of Graces pushchair I’m increasingly panicking until Josh calmly steps in. 

“Mum, let me try. 

C’mon Dylan lets get out the sun”.

And breathe. 

Thanks Josh x

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April is Autism Awareness Month: Day 1 – Queues

April is Autism awareness month. For anyone who doesn’t have their head in the clouds and is already AWARE of autism let’s spread that gesture to ACCEPTANCE and UNDERSTANDING.

I can’t speak for all people with autism just because I know one and I’m not going to claim to be able to. Just like I can’t speak for all women or parents just because I am one.

But I *do* know Dylan and if I can increase the worlds understanding of Dylan and his autism using everyday examples then hopefully we can all create a society that has insight and understanding for him and others like him.

Day 1: Queues.

Dylan can appear rude because he often doesn’t understand or adhere to social rules such as queuing. To Dylan if he wants to buy something in a shop and sees a cashier at the till then he wants to go straight to the till and pay.
That’s just his logic.

We are working hard on teaching him how to recognise queues and the behaviour that we all keep to when queuing:

** don’t stand too close to the person in front,

** ensure you move forward when the person in front of you does,

** don’t skip around

** don’t accidently hit anyone with your basket as you skip (even though it’s all you can do to keep yourself mentally focused on waiting in line.)

These are all factors that Dylan has to constantly be reminded of to maintain a successful queue. Queuing is a social process that you or I may take for granted but the purpose and rules of queueing are lost on Dylan because of his autistic logic; to him it seems like a pointless exercise which prevents him paying for his beloved crisps and getting the hell out of a busy shop.

So please, if he pushes in front of you or doesn’t queue without skipping or humming; don’t stare, but smile and give him time to get it right.

Theres a lot of work going on there.

#autism

#AutismAcceptance

#ItTakesAVillageToRaiseAChild

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A New Year, A New Month, A new ABA Meeting.

This year is really moving forward with plans for independence. Microwave meals, shopping, developing further independence with the coffee shop, moving tasks to unfamiliar shops and cafes to generalise skills. It’s an exciting time, albeit a bit out of our comfort zone but it seems that with every step forward there’s a splurge of dangers and unpredictability.

For example – Microwave meals, a fantastic concept in the future that Dylan can go to the shop, buy himself some microwave meals and then come home and feed himself; that would be marvellous and will make himself sufficient for a couple of hours!

The plan is to get Dylan being as independent as possible, not a difficult one you may think. However within the first 5 minutes of unpacking the ready meals there are a range of dangers which we realise all need to be managed or will require extra teaching programmes.

Firstly, pricking the plastic lids. Dylan doesn’t have the coordination to force his physical strength on the fork through the plastic lid despite trying but failing, he then defaults to picking up a rather large serrated knife to try with– ‘No no no Dylan!’

REALITY – We need to work on either directing more force on the fork or persevering with the wimpy pricking of the plastic until success. Otherwise he will lose focus and require adult intervention to continue with the meal prep thus reducing his independence.

Next is reading the instructions – when planning this it was described as Dylan seeing the number of minutes on the back of the packet and setting the microwave accordingly.

REALITY –  On the sleeve of a meal there is oodles of instructions, ingredients, descriptions and options often to either microwave or oven cook – Can you imagine microwaving a ping meal for 25 minutes??! It’ll be dust! 

So again this will need teaching – to pick out the minutes required, to identify if the item is to be microwaved or oven cooked and if so then on what setting.

Then we come to the microwave, Dylan has no electrical safety. He, as far as I am aware, does not know about the dangers of metal and microwaves.

REALITY – The health and safety risks are huge and if he is to be fully independent then he needs to be taught about electricity, the dangers and how to deal with them.

All being well, the microwave pings and the food comes out; Boiling hot food. Dylan needs to coordinate handling the hot container with a tea towel and bring it over to the plate. He needs to carefully remove the plastic wrapper – which is not an easy feat at best- and avoid being burnt by the escaping steam. 

Food and plate and go eat. Done.

In addition to this, even if he does everything right but by some unfortunate circumstance the fuse blows, there is a mechanical malfunction, the food catches alight or the food comes out uncooked; What does Dylan do? We have to teach to cover every eventuality? I feel exhausted at the concept.

However more and more we are finding this; lessons and tasks need to be broken down further and retaught to cover variants and build confidence in situations which ultimately cannot be regulated nor controlled.

Exciting times brings with it trepidation.