0

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Fast forward and Dylan had been in the education system for four long years, he was becoming increasingly anxious and withdrawn.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

 

Advertisements
0

Best foot forward

Dylan went to the doctors today. Thankfully as a healthy child he doesn’t see the GP much. At all.
But recently I’ve noticed small bones protruding from just above the arches of his feet. The bumps are rubbing on his shoes resulting in him having small pressure sores developing. Dylan’s having to wear socks in the current stifling heat to avoid the skin there breaking down further. 

Although Dylan lets me look and check these lumps without complaining, his body language tells me it hurts. He flaps violently when he thinks they are going to be touched, his whole body stiffening with anxiety until he is reassured thst these sensitive areas won’t be meddled with.

We had no option but to visit the GP. We talked this through with Dylan who appeared to be okay and understand the basic process we were explaining to him. 

Appointment time came and went but Dylan was a superstar waiting patiently in the busy waiting room for his appointment. Finally we were called into the GP office Dylan kept his anxiety under control and allowed the doctor to look and feel the bony protrusions. I explained to the doctor they don’t look right and seem sore although Dylan’s communication difficulties make this really hard for him to relay to us.

‘Its all fine ‘

 doc said as if I was being a bit silly bringing my concerns. He went on…

‘We all have different feet, as long as he is exercising plenty he’ll be fine. 

Keep him moving”

That’s it. Consultation over. 4 minutes.

Dissatisfied with the advice from the GP we leave politely and get in the car so I can contact my default doctor for advice; 

Dr Google: search term “painful bump on side of foot”

First result of many all saying the same thing is this:

Seems Dylan is fitting the descriptor for a diagnosis of having Accessory Navicular Bone. 

Side effects of which are possible fractures, loss of stability of joints, development of ‘flat feet’, loss of mobility and pain which “gradually becomes worse, and… is aggravated by activity, walking, etc.” Resulting in Accessory Navucular Syndrome which can be debilitating and require a range of treatments.

Seems my inital discontent at the advice of ‘exercising plenty’ was not misplaced and indeed will not remedy this issue. 

I’m so mad! 

  1. Dylan has his diagnosis of autism in bold on his medical notes on the computer screen. 
  2. I told the doctor clearly that Dylan can’t tell us if he’s hurting. 
  3. We never go to the doctor but had presented for this ailment so it clearly is a concern and we were nothing short of fobbed off. 

First thing tomorrow; I’m self referring to a podiatrist for a proper examination for Dylan and some advice for me. Something I think I probably should have done in the first place. 

Grrr!

0

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 🙂

Aside
0

We’re all for trying new things, Dylan included. So when dinners involving a new item Dylan likes to check it before it’s dished up into his plate. Actually as soon as the serving spoons are out Dylan’s hovering around the kitchen checking out what’s going on.

Tonight’s dinner involved cous cous. Moroccan cous cous. Now Dylan likes rice and pasta and he certainly likes spice but in this combination. Not heard of before.

Dylan’s flapping around the kitchen so I get a small spoon and offer him some from the pan. Dylan sniffs everything before it goes into his mouth. Cous cous passes the sniff test and he goes in to take the while lot off the spoon. No gagging or grimacing Dylan swallows the lot. I go to put a spoon of it into his plate.

‘Non ‘ 

‘No? You don’t want any more?’ 

‘Non.  No danoo’  (No thankyou) shaking his head. 

‘Oh okay’ 

It’s no issue if he doesn’t want any. I’m just glad he tried it. Dylan’s still flapping in the kitchen. Then within ten seconds…

‘Yah bee’ pointing to the pan of food.

‘Yes? You want some?’

‘Yah bee’.

At home this perceived indecision isn’t a problem but it can take 5-10 seconds for Dylan to process the a relatively closed question and produce his correct answer. I think it’s his anxiety which is based on him knowing that an answer is expected which almost makes him knee jerk into a response be it correct or otherwise to avoid being wrong. Not having this delay acknowleged when out in public can result in Dylan’s verbal communication being futile and causing him further anxiety. Having the iPad as the first mode of communication when out produces more of a delay than when Dylan is speaking verbally. However if Dylan’s  speech is understood but its not his correct response then it can be problematic.

More so I’m understanding that complex communication issues and disordered speech sounds are Dylan’s greatest difficulties.

Oh and he ate the lot!

0

Connecting

Sometimes nuggets of compassion from strangers catches you right in the feels. 

It could be a throwaway comment, a glance and a smile or a gentle nod of ‘I get you’ before the moment passes and the crossing of paths continue. 
Although few and far between these moments can give you a spur onwards when tiring from the ongoing effort of managing family life and the relentless need for continuity while offering encouragement during noisy, disruptive times when it can all feel a bit too much.

A look of support, a kind word or just ‘seeing us’  when out as a family can give us enough of a boost that sometimes we can feel supported without even interacting with anyone.

The truth is that the differences of having a child with disabilities to a family is immense and can make some of the most basic public tasks feel impossible. 
While away at the beach Dylan screamed, cackled and splashed, immersed in his deep deep joy of the sea and finding a common ground enjoying the warm water with his siblings.
 Josh came over to me on the waters edge and whispered to me “Mum, look; everyone’s looking” I turned to see everyone sitting upright on their lounges watching Dylans show. Josh and I smiled to each other as he rushed off to go back to play with his sister and noisy brother. 
Those watching may have been judging his behaviour or disapproving of the disruption to their quiet sunbathing but it felt to me as if they were enjoying watching them have fun as much as I was.

To those who spread little gestures of kindness, thankyou. Thankyou for recognising and spreading understanding for families like mine. 

Acceptance feels beautiful. Thankyou x

0

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.

0

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