Today starts Neurodiversity celebration week, a cause very close to my heart. If you have a spare 3 mins, please read my blog "Your son has autism."
“Your son has autism.”
I’m sure the consultant said much more than that 14 years ago, but at the time that’s all I can remember from the meeting, alongside being given a leaflet – that I was still clutching in my left hand when I reached my car - I was numb, confused, not sure what to do and was asking myself, why us?
I had so many questions to ask, so many concerns, so many thoughts racing around my head, with no real concept of what it all meant, and what I didn’t realise was the amazing roller coaster world of discovery and education that I was about to embark on, seeing life through a completely different lens, marvelling at things many of us take for granted and meeting the tremendous people who support and care in the wonderful world of special needs education.??
Harry (my son) had been very ill as a baby, having major lung surgery when only a few weeks old, with his subsequent development being relatively slow, so every investigation possible was carried out. Hydrocephalus, via an MRI scan, was discounted when he was two, with autism finally being diagnosed when five. As a parent you have no idea what this means, what life your child will have, what support is available and fundamentally how am I going to cope.
But as time moves on you adapt, you learn, you get support, you speak to friends, family, parents, care experts, the help out there is immense and if you seek you will find it. Life with a child with learning difficulties isn’t always easy, there are battles, there are tantrums, phobias, fears, dietary challenges and with autism, very limited affection in return. With the help of special needs education, Harry has thrived – we know what he likes to eat having tried every food type under the sun, where would we be without cherry tomatoes, broccoli, strawberries, pasta and of course salt and vinegar crisps, as you navigate your child to some element of a balanced diet, as well as avoiding clothes with buttons, removing all labels from new clothing, slip on shoes – no laces, trust me it all becomes second nature as you just adapt to a different way of seeing and experiencing the world around you.
There is no verbal filter, what he thinks he says, sometimes with hysterical or embarrassing consequences, he takes things literally, “Pull your socks up” would be followed by a puzzled expression as he looks down at his shoes. But trust me the highs are off a scale - swimming the first length in a pool unaided, to seeing the unbridled joy as he hurtles down the rapids at Center Parcs, to winning a medal at school sports day (the most humbling day I have ever experienced is a sports day at a special needs school – simply joyous and so emotional, not a dry eye in the house) and of course the unbridled joy of when he met Sonic the Hedgehog – “Daddy look it’s the real Sonic!”. It is a great journey, it is an amazing journey, it is often a very complex journey and one that I am privileged to be travelling. There are obsessions – what I don’t know about Thomas the Tank Engine or Sonic the Hedgehog isn’t worth knowing, when we travel, two cuddly Sonic characters accompany us where ever we go, whether it be to the shops, the park or even abroad, they are now part of the family. Sometimes people stare and point (this you learn to live with), but in the world of gaming his “companions” are admired and he is embraced and accepted as an equal.
I have read so many books on the subject and spoken to many people and all this helps as you know you aren’t alone, but life experience is what really shapes you and what really helps you. Harry has overcome adversity throughout his life and has done so with a smile and humour that has influenced and changed me as an individual and altered my views on many aspects of life, he is unlikely to be independent at any stage, but has thrived with the support of those closest to him, and the pride I have for him is immense as it is for all his family, including his very protective sister Ellen. And it is to?organisations?like the National?Autistic?Society?and those that work within special needs education that we all owe a huge debt of gratitude for helping Harry and wonderful individuals like him grow into the people they are today and ultimately encourage them to realise their full potential, whatever that may be.
Autism has often brought me into a world of wonder and amazement and I know many parents have struggled and do continue to struggle, as do I with a child that I know will never be independent and the worry that inevitably brings, but I’m passionate for the need for society to understand that a lot of people experience and interact with each other and the world around them in so many many different ways and it’s important we recognise this, so every individual from whatever background is given the support to enable them to thrive in society, where conforming is often a way of life, but autism/neurodiversity can often be the huge breath of fresh air many of us often crave.
And for as long as I live, every time I see Sonic the Hedgehog or Thomas the Tank engine I will smile broadly, knowing that if I chose either as my specialist subject on Mastermind, no one on this planet, apart from one very special young man could out score me!?
Joanne Hollins Andrew Montlake Rheona Kynoch Adrian Moloney Rob Jupp Lea Karasavvas CeMAP CeRER Ellen Morley Kevin Roberts Ben Thompson Alison Hurley Robert Barnard Robert Sinclair Richard Merrett Sara Palmer bharat sagar Ying Tan Richard Saulet GEORGINA PAYNE Victoria Jefferies Nicola Goldie Roger Morris
Senior leader in banking, invoice finance and asset based lending, building and leading high performing teams across sales and operations
1 年What an incredible and inspiring story Charlie, thank you for sharing.
CEO and Founder - Focus Search and Selection
1 年Thank you so much Charles. A deeply moving read, it filled me with knowledge and emotions to increase my understanding of the associated challenges and rewards .
Experienced Marketing & Commercial Director | Available
1 年What an amazing story Charles Morley - touches every part of the heart and a great article to raise awareness. Respect ??
Deputy Chief Executive Officer at Mortgage Advice Bureau
1 年You’re right to feel proud and what a journey. An amazing story that will inspire many, and loads of story left I’m certain. You’re lucky to have each other and I know your life has been, and will be far richer and more rewarding through having him in your life.
I help leaders find their inner elephant, and help teams collaborate and perform.
1 年Wow Charlie, thanks for writing this. My daughter has Down's Syndrome and I echo your experiences, fears and pure joy at celebrating the wins. I imagine this wasn't easy to write but I can honestly say it's been a privilege to read, and I'm sure Mastermind will be in touch about Sonic!