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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Fast forward and Dylan had been in the education system for four long years, he was becoming increasingly anxious and withdrawn.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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Reading challenge

Dylan’s been going to the library since he was tiny. It’s always been a place full of anxiety.

Too quiet, too much attention to behaviours and too many tall aisles to get lost down.

The younger two have always seen the library of a place of learning, knowledge and information. It’s strange how two people can see the same thing so differently.

Dimensions have a new campaign to make libraries ‘autism friendly’. Which is an excellent idea.

Every year the library do a reading challenge where a child endeavours to read six books of their choosing within the six weeks summer holiday. After reading each book they visit the librarian seated within a speacial little nook to discuss the highs, lows and lessons learnt from their chosen read.

Josh and Grace have repeatedly year after year completed the reading challenge but this year is Dylans first year. It took a while for Dylan to understand what the librarian was asking him of the book but with time and gent lesupport from Dad he was able to complete the first element of his reading challenge by answering the librarians questions.

Reading challenge 2017; Its different but its do-able.

 

Well done Dylan 🙂

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Making a statement 

Dylan has his EHCP meeting on Friday and in preparation for this we have had to complete a form outlining Dylans wishes and plans; like it makes a blind bit of difference.

I’m struggling to hide my pessimism with the whole process but we’ve done as we’ve been told and Dylan’s SEN office had this landed in her inbox this morning.

Section A 

ALL ABOUT 

Things I’m good at (written by Mum and Dad)

Dylan is good at football and basketball. He is good a riding a bike and hanging out washing. He makes a great cup of tea and is incredibly honest.

Things I like, things I don’t like and new things I’d like to try (written by Mum and Dad)

Dylan loves food, mostly fast food such a McDonalds but he also loves a curry, pasta and any good gravy dinner with meat and two veg. He likes his food heavily seasoned with salt and pepper. He likes to drink cola and hot chocolate (but not together) He doesn’t like milk, cheese, butter or sandwiches unless it’s a marmite sandwich (with no butter).

Non-food likes – Dylan’s likes to swath himself in blankets and ensures that he has his head covered. He adores bathing and will spend many hours in bubbly baths. He likes to play games on the iPad or watch a range of kids TV shows including Roary the racing car, Paw patrol and SpongeBob square pants amongst many others. He enjoys water activities including swimming, watering plants and washing windows.

Non-food dislikes – Dylan hates the noise of handriers, motorbikes and loud unexpected noises. He is very unsure of toddlers, babies and puppies, usually because of the unpredictability and volume of their noises. Dylan isn’t keen on getting up in the morning and can take a long time to be coerced out of bed.

Dylan is keen on trying most things once it has been explained to him. He has recently been rock-climbing although he was nervous of this at first. Dylan has also recently tried yoga and this is becoming more bearable as he is getting used to what is expected of him.

Things I admire about me (Written by Mum and Dad)

Dylan knows he is fast when using his IPad as he is told this often,  

 Things other people admire about me  (Written by Mum and Dad)

Dylan listens to instructions well and tries to please people around him. He will always share with other people.

What’s working well, what’s not working so well and what I’d like to change



Dylan works hard at learning; he has less anxiety since leaving school. Dylan is attending more social groups which exacerbates his anxiety although this is improving with increased exposure. Dylan’s communication is improving hugely with the iPad and he likes that fact that he can increase his vocabulary independently with it. Dylan uses the IPad to communicate with a wider range of people which makes him happy.

Dylan doesn’t have enough exposure to mainstream peers of a similar age that can model appropriate behaviours for him and allow him to develop friendships.

Dylan isn’t given enough time to respond to people using his iPad; it requires a lot of education for the wider world to know how to communicate with Dylan’s iPad.

How I need to be supported to be heard and understood 
Dylan needs access to his IPad, fully charged at all times to be able to communicate his needs. Dylan requires 1:1 support at all times by an adult who is familiar with Dylan and his needs to ensure his safety with roads and strangers and to facilitate communication with others. When Dylan’s needs are not understood he can self-harm and internalise his frustrations, the trigger points of which can also be overlooked by those unfamiliar with Dylan and his needs.

The important people in my life; family, friends, favourite people (even pets)  

Name: Relationship:

Daddy Dad

Mum Mum

Josh Brother

Grace Sister

Hal Dog

Dylan’s story so far 

(Provided by Mum and Dad)



Dylan was born in 2003, a happy and healthy baby, did not develop speech and so was referred to SLT and had a diagnosis of autism by age 3. He attended an enrichment nursery place before moving on to MLD school age 4. Progress was non-existent and Dylan was bullied and frightened by the unpredictability and aggression of the other children in the school. Despite voicing concerns to the school about lack of progress and Dylan’s deteriorating mental health we eventually had no option but to remove Dylan from his school placement and to educate him at home.

Five years on Dylan has progressed although not enough to catch up with his peers but he is no longer is as anxious as he was previously. He enjoys his academic lessons and is progressing well at developing life skills.

Dylan’s aspirations and wishes e.g. education, play, health, friendship, further education, independent living, higher education, employment, family, next important steps

Dylan is very motivated by money and has expressed an interest in being employed when he is an adult. He would like to have friends and be able to play outside with his brother and sister.

Dylan’s family’s story

Dylan was our first child and was quickly followed by his younger brother and sister before he was diagnosed with autism age 3. Dylan’s education has been unsatisfactory with only the bare minimum being provided. The formal schooling system has felt to us as parents as glorified babysitting rather than him gaining any sort of education. We felt trapped and distressed by the lack of support with regards to Dylan’s inability to cope with the school place he was in and it was only as an absolute final straw that we took the plunge to remove him to try and make things better for him ourselves. Since then we have not had support or help from the local authority to educate Dylan despite repeated requests. Thankfully, due to our dedication and love for Dylan we have nurtured him back to being happy and responsive to learning. This has taken years to build and required a parent at home with Dylan full time which has had a knock on effect for the whole family financially. Dylan’s brother and sister Josh and Grace love Dylan very much, as he does them. 

Family’s aspirations and wishes for Dylan e.g. education, play, health, friendship, further education, independent living, higher education, employment, family, next important steps

We would like Dylan to develop a circle of friends and acquaintances. We would like him to be able to work in some capacity and earn his own money. We would like Dylan to be as independent as possible to manage his own health and to be able to keep himself as safe as possible. We will always have a place here with us if Dylan wishes to live with us forever. We want Dylan to be happy.

Summary of aspirations and wishes for Dylan (Long term hopes and dreams of the family or young person)


To be happy


 We’ll be seeing them Friday….
Photo courtesy of ‘A Very Special Needs Resource’  https://www.facebook.com/AVerySpecialNeedsResource/

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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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Up, up and away 

Grace’s 10th birthday party was this week and she opted for a climbing theme. We arranged for seven giggling 9-10 year old girls with Josh and Dylan to all have 90 minutes on a climbing wall with an instructor.

Dylan appeared keen from the get go. He quickly grabbed himself a helmet when instructed but then the whole concept got a bit real and from that point on Dylan was a bit more apprehensive. 

When Dylan starts to get anxious he will whine and winge and usually sit out. He get frustrated and bored and will then require direct attention from a parent to ensure he is kept focused and behaviours don’t spiral for him. This isn’t bad behaviour but Dylan’s anxiety coupled with frustration at himself for being unable to complete the task. To most people they see “Dylan can’t do it; he needs to sit out.”

The party leader was relatively new so she was being supported by a more experienced instructor, lets call him Bill. On the registration form it requested any medical details for the children and for Dylan I added ‘autism -non verbal’.


Bill instinctively saw Dylans anxiety but also his wish to be involved. He showed Dylan the equipment and let him hold it before asking if he would like to wear it. He spoke directly to Dylan and copied the way I gave Dylan simple language and clear choices so Dylan could repeat his option back to me.  
Dylan will link onto my arm when we’re out and gradually through the party when he was ready to try a bit more equipment or to feel the wall a bit more,  Dylan started to unlink my arm and go and link arms with Bill.

Well. He only got on the flipping wall!! And more than once!!


Bill was so supportive and reassuring for Dylan. Once off the floor Dylan would panic, it looked like his correctly fitting groin harness was sending him into sensory overload and he wanted to get down now. Dylan would grab onto Bill’s hands and hold them tight but Bill took it fine. Some people recoil when Dylan tries to touch them. I suppose being an adolescent boy Dylan has some tactile needs that are closer to a boy younger in age; like the arm linking or hand holding and not everyone understands why Dylan does this. Bill didn’t care.  
Bill was cool.

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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.