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Fast forward and Dylan had been in the education system for four long years, he was becoming increasingly anxious and withdrawn.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

Do the maths

Dylan has started Doodlemaths. 

Doodlemaths is a maths based app. Its set on a pretty easy session (approx age 5) but Dylan is expected to use this app to complete a bit of independent learning everyday.

For him to sit quietly and attend to a relatively non motivating task like this is awesome AND good maths practice and generalising of skills.

Yay Dylan!!

0

One of those days….

Life passes so quickly. As the nights get longer and the evening darkness creeps up, spreading  from the late afternoon and lasting longer into the next morning, time can seem to pass even quicker.

Christmas in 6 weeks and with the worrying speed of time passing we headed out to make a start on picking up some Christmas bits.

Well, what a mistake. There were people everywhere. Typical for a late November Saturday afternoon but it was stifling how busy it was. Noise. Rushing. It really wasn’t pleasant.

We didn’t last long out. I mumbled to myself that we would order online and get out of the damp drizzle and head home.

Dylan was asking for a McDonald’s and in light of the nightmare afternoon that he had tolerated so well I figured that he had earnt it. There were still queues and rows of cars trying to get into the car park. Typically, no-one indicating or in the right filter lanes for where they were trying to get to.

A car came steaming around the corner heading towards us, a seemingly disgruntled driver who had had enough of waiting in line and *had* to get parked. In his haste I moved over out if the way just as the traffic began to move, thus leaving us in the incorrect lane for Mcdonalds.

Dylan, I’m sorry, I’ve missed the turning for Mcdonalds. 

Will you have a Burger King instead?’

Now let me just explain. Theres a number of reasons why this split second change in situation could have us heading towards a small catastrophe.

Number 1: Dylan can still see McDonalds from our position on the road. He knows it’s there and he wants it. I’m now driving away from it. Thats reason number one to flip out. 

Number 2: I said he could have it. Now I’m saying he can’t. That’s not fair.

Number 3: Burger King isn’t a food place Dylan is used to. He’s not sure what he should have. Hence more anxiety.

Number 4: Dylan has various eateries on his iPad to talk about. Burger King isn’t one of them.

Number 5: In the time it’s taken for Mcdonalds to be lost and Burger King suggested we are already in the queue for BK drive-through. Dylan just hasn’t had enough time to process this change of plan.

Now we are out of the chaos of the main road I have mentally acknowledged the five trigger points and turn my attention to Dylan to explain and begin the reasoning.

But Dylan’s sitting head down engrossed in his iPad. He’s typing and glancing up and then eyes back down typing again. I take a closer look to see that he is setting himself with a new food folder. Each glance up is to check the spelling as he labels the folder ‘Burger King’. 

Luckily there is a wait at this drive-through and we are close enough to the menu for Dylan to diligently copy down his order from the display board to his iPad. 

I can’t recall when this changed happened; When the hysteria and anxiety at unplanned changes lessened and lessened until it became just an eventuality which could be acknowledged and customised. 

I can only think that it is a combination of trust, our presumption of Dylan’s ongoing progress and his ever growing self confidence. These are all combining into a beautiful pot of ability which is manifesting with Dylans confident use of his Ipad and communication programme.

I never, ever, ever thought that this situation would occur. I have been told for years that as a parent of a child with autism to expect regular meltdowns at any changes or situations that Dylan can’t control. Its part of autism. 

Well, not this time. 

Not for us.

Some days Dylan can work through the anxiety, he can reach out and communicate with us and things such as unplanned changes can be okay.

Today was one of those days

Good work Dylan.

0

Summer reflections

Back to normal after the six week holiday, has a mixed bag of feelings, some crave normality and the routine, some hope for the cooler Autumn days, others wish for a rewind and to start all over again reliving the Summer as if on repeat.

Reflecting on this Summer has left me feeling glad for small miracles. Years ago once over the heartbreak of diagnosis and shattered expectations, fearful for the unknown future, everything changed. I noticed and became unbelievably grateful for every millimetre of progress, of interaction. Every breakthrough was noted and to be celebrated. Eating a strawberry. Taking himself to the toilet. New words. New behaviours. Everything is so damn exciting.

I write with the hope that Dylan can read this blog one day. As a record of his progress, albeit in baby steps, to record his growth through to adulthood and beyond. I certainly know that Josh and Grace will read this in the future. its important that whilst acknowledging the difficulties that I always look on the positives within a true reflection of progress.

I don’t want to criticise others. We all have our own parenting journeys and two parnts on the same journey will have differing perceptions of their route, their accomplishments and their low points. Some autism parents really struggle. I get that but hell if you’re finding it hard how hard is your kiddo finding it?? They’ll need you!

We live in a technological era. Nothing is safe or hidden. Nothing can be buried and some children will grow and find all these comments written about them by their parents…

So with this in mind, let’s keep it kind.

To describe your child’s autism as ‘ruining’ to me is a contradiction.

Your child is autism.

Autism is your child.

Intertwining and together developing. For me there just isn’t one without the other.

School is hard for children. Especially on the spectrum. Don’t wish them away. If you publicly wish them elsewhere or to be differnet, somehow ‘better’ or more ‘normal’  I fear that they will pick up on these tired unwanted vibes from you in person. Summer is only a 6 week break; Enjoy your children. They grow so fast. Make them feel wanted. And enjoyed. If they don’t share your interests then go out of your way to try and share theirs.

Go on, I’ll be worth it 🙂

0

Setting AAC Goals: Please And Thank You

A great piece on the intricacies and functions of AAC….

voices4all

Can we please stop expecting kids who use AAC to end every request with “please”? I’m talking about those emergent communicators who are just learning that their voiceempowers them. I’m referring to those beginner communicators whom we are desperately trying to move beyond requesting”goldfish please.” The goldfish may be hugely motivating, but saying “please” — no way! Although politeness is admirable, if you push for “please” at this point, you may end up with overgeneralization due to a lack of understanding of that concept as new core words are introduced. That’s when you hear things like “I see goldfish please” on a fieldtrip to the aquarium.

We often get hung up on increasing mean length of utterance (MLU) before it’s developmentally appropriate. Let’s think about Brown’s Language Stages. If a child is using just 75 words (such as go, help, more, stop) and speaking in single words, he’s at Stage…

View original post 1,024 more words

0

A midnight treat

Since being a parent my sleep has been awful. 

It’s always the way, either I’m asleep and one of the kids wakes me or someone needs something so I wake, usually unable to go back to sleep, laying with one ear open in case they need anything else. Or everyone is asleep by 11pm and I’m still laying in bed at 4.30am either graphically revisiting every bad life decision I’ve ever made or attempting to memorise a mental to do list for the next day, week, month or for the rest of my life.

Currently I’m on night 3 and I still can’t memorise any mental list. I’m absolutely shattered and becoming increasingly frustrated with my tired brain which seems to have forgotten how to work it’s off switch. It’s always felt unfair that no matter how bad I sleep there’s always that expectation to get up in the morning and carry on as before, regardless of how tired I may be! It’s a responsibility to always be on call 24/7 and on nights like this it really sucks.

Everyone’s asleep; they have been for hours. I hear a small whimper from Dylan’s room and his mattress creak as he rolls over then, as clear as a bell he calls out, “Mum”

My heart skips a beat as I jump up to check if he’s okay. I pop my head round his door and he sleeping soundly like a baby slapping his lips mid dream. 

I sneak back to bed elated. He’s fine, he’s just dreaming but he spoke! Properly spoke. Clearer than I’ve ever heard. And he called me, in his unconcious state he wanted me or thought of me. I wish I had recorded it. I would love to hear it again. My hearts still racing as i recall it. It was the best thing I’ve ever heard.  Hearing him talk like that was a total chance event and if I was asleep I would have missed it. 

If there’s a chance I could hear that one more time I’ld happily agree to never sleep again. 

Sweet dreams little man. I’m here, always listening x

Picture is of a different day when, mid morning, Dylan decided he had had enough of being awake and took himself off for a quiet lie down. Typical! The boy hasn’t napped since he was 6 months old! 😂


0

The real slim shady

A warm autumn day, the last warm day for a while so I coax Dylan out of his heavy hooded coat to give it a wash and hang it on the line. 

Heading out for the afternoon school run and Dylan’s managed well for this long without his beloved coat. To add insult to injury he left the house in a rush and forgot his ear defenders. Now Dylan *has* to listen to the radio on volume 20 even though it’s too loud for his sensitive ears without ear defenders. He struggles through it until we turn southeast and right into the glare of the afternoon sun. It’s all too much and Dylan’s cackling and swinging himself around in the front seat trying the juggle the sensory cocktail thrust upon him. 

We’re heading for panic. I can’t get his coat. We’re going to be late if we go back for the ear defenders. There’s no other route to school which would avoid the bright sun. It’s going to be a bumpy ride…. until this…

He dug out my oversized shades and stuck them on his face, instantly relieved. And then just like that he kicked back and listened to the tunes on the radio for the rest of the trip. We gently pulled up at the school gates. Fearing he may feel a bit self concious 

“Dylan do you want to take those off now?” 

“Non”.

And he didn’t. And then he rocked them, all the way home 🙂