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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Fast forward and Dylan had been in the education system for four long years, he was becoming increasingly anxious and withdrawn.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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Crash, mugum and other wonders 

Holidays are great for getting away from everyday life but also for spending non stop time with one another. Some families may not like this too much but as we hardly spend any time all together at home for us to be on holiday and have 24/7 in each others company is bliss!

Being away together also gives us time needed to fully embrace Dylan’s iPad use. He is supported to use it for every interaction both with us and new people. We can model words for him and add vocabulary to it as it’s required. 

In addition to this Dylan’s becoming proficient at adding his own words too. He can independently use the iPad to take a photo of an item or person that’s not in his vocab list and then use the drop down keyboard to type the word in. Dylan struggles with the spellings in this bit but is able to write enough for us to be able to understand and type the correct spelling for him. Self directed pictures and typing is a useful technique we are encouraging to enable Dylan to generate his own working vocabulary. This week already we have had

‘magum’ for Magnum icelolly 

‘hannk’ for hammock and 

‘crash’ for a computer game which he remembered both the location of and correct spelling for since our visit here last year.

This boy astounds me.

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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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Looking Back on 2016 – September

 

Back to school after the summer break. I so love having them at home. The house is so noisy, so messy, so lived in. We have seriously outgrown this house, it bulges when we are all in it together. It bulges with love, with laughter, niggly arguments and catty comments. We all adore one another.

The academic years starts quickly with targets being set and the pressure piling on. I believe the Autumn term is the hardest. So much rest and relaxation over the summer months and then there’s the looming dark evening that become cold dreary afternoons, The expectation of better behaviour, better attention, better grades ‘now you’ve come up to class X’ when really only 2 months have passed since they were in the little class below when they could watch films and make models out of cardboard and nothing really seemed to matter. It’s a lot of pressure from ones so young. They get tired and irritable and stressed and their heads hurt from trying to remember everything, new rules, new procedures, new expectations.

So I started to take the children out one by one, for dinner, to given them that little midweek boost and to allow them a small respite from some of that pressure. Its been great. They each take it in turns and we go out for dinner and a chat. The boys love it, they eat and we talk – Josh more than Dylan –  but we still talk! Grace not so much, she gets upset with talking, she’s a little pressure cooker. I’d love for her to speak freely about her concerns and worries but she won’t, she hates getting upset. I have let her know that I am always here for her to talk but she always says she doesn’t want to. So for her we go and do something else. We go bowling, or to see a film or something where we don’t have to talk, we can focus on something else and enjoy each others company.

I love spending time with them, they are great people.

I love it. I really do.

I hope they do too.

Image may contain: textDylan’s favourite place to go is the local pub. At first people would look over at us, Dylan would order his food loudly on his iPad and with it being quite a quiet village pub people would look at him humming or stimming. After a couple of weeks of visiting the staff became very used to him. I always ensure that Dylan would order his own food and drinks using his Ipad. Some staff would still look to me for clarification for this but I would simply ignore them. I’m getting quite good at that; ignoring people. Much like people try to ignore Dylan when he talks to them.

Facilitating communication with other people in resturants at the moment comprises of the same routine at first…

  1. Us both being asked for our order,
  2. Dylan will answer with his iPad,
  3. The waiter will will then look to me and ask me a question about Dylans order, be it sauce, size of portion etc.
  4. I will then look to Dylan in silence.
  5. The waiter will then repeat the same question.
  6. Again I’ll stay silent but I will switch on Dylan IPad as a prompt for him having to answer the waiter.
  7. The waiter will then stand and wait while Dylan types out his response.With me smiling sweetly at them both. By this point the waiter has usually grasped the point.

This process really only needs to happen once or twice before they realise they get more response out of Dylan than they do me. Works every time!

 

 

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Christmas 2016.

It’s been a wonderful day on so many levels. We have been a family. We have looked after one another, focused on one another and been there to support and enjoy one another.  A real family Christmas, it’s been great. 

But it’s also been a time for reflection. Now this is not a sad post but one to remind of how fragile we all are, how every moment should be relished and enjoyed and how we should focus on what’s really important and not get lost in the smaller issues.

I’m holding my little ones close tonight when thinking of the international terror that’s been occurring in recent months. Feeling lucky that I am born where I am rather than a war-torn climate. I’m feeling thankful that I am loved and that both myself and my loved ones are healthy.

I am thankful for my steely determined views and that I am surrounded by people who believe in me, take a chance and allow me to act on my beliefs and hopes. 

I am reminded that this time last year things were so different. For Dylan theres been so much progress made, developments, friendships blossoming. But also in wider circles unexpected deaths, changes in health and some relationships shattered. We don’t know what’s around the corner; none of us do. That’s why it’s so important to live in the moment. Take a chance, right here and now and make it matter.

Wishing everyone a merry and peaceful Christmas  xxx

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Ha-ha-happy Halloween!

Halloween. 

Not one of Dylans favourite celebrations probably due to the lack of preparation. The decorations go up that day and come down the same day. The costumes are uncomfortable and with it being a school/work day its usually all a bit rushed. 

The golden rules are broken and suddenly everyones out knocking on doors and taking sweets from strangers. 

I can see that it must appear bizarre and very unsettling.

So this year we did things a bit low key. Dylan wanted to dress up like the other two but instead of going out we drove them round to my mums for a hot chocolate and a handful of mini chocolates each.


And for the last day in October, and the final day of AAC awareness month, we set it up so that Dylan could treat us to some Halloween jokes.

Happy Halloween all 🙂