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Hope in millions

I just finished reading A Change of Heart. If you haven’t read it, do it right now. The next one on  my list is Inferno by Dan Brown. I had pre ordered it when it first came out and I never got around to it. Dan Brown books are the kind of books which you remember where you were when you read them. They are a journey of self discovery and they speak to each reader in a different way. Robert Langdon, the lead character, is a professor, a researcher, he is constantly looking for answers and is known for a brilliant problem-solving mind and his genius. 17195164_10154982012445030_1234091914_o

Autism can feel like a Dan Brown book some times. *Spoiler alert if you haven’t read them*

Angels and Demons is the beginning: Strange disappearances (being the diagnosis), a secret society that has infiltrated many global institutions, political, economical and religious. Autism has been around forever, but we didn’t even know what autism was in the 90’s, in Cyprus. We couldn’t Google it. It was spoken about in hushed tones and behind closed doors. When the vaccination scandal broke out and was the rebuked the conspiracy lovers amongst us looked at the big corporations, the big boys and wondered what we weren’t being told. As soon as we started researching, looking, reading we uncovered a world we had no idea existed. A powerful word and a condition so complex we had to dig deeper before we even scratched the surface.

The Da Vinci Code is the road to acceptance. It starts with murder (like all the books) that hits close to the heart. To us it was like all the dreams, hopes we had for his future had disappeared after the diagnosis. We set out on a journey to find the reason behind why this had happened. Langdon tries to solve the mystery of this ancient secret society. He breaks codes and solves puzzles. We broke sanity barriers and solved puzzles. Our Holy Grail was finding out how to reverse this. However, when he spoke his first word, we found out that all we had to do was love him for who he was. The answer is in his heart, in our love for him. He was the Holy Grail all along.

The Lost Symbol is about growing up, about realising what you are made of; a severed hand, the story of the prodigal son resonates throughout the book. A son away from home, who always had home with him. It reminds me of leaving Chris to come live in the UK. True, I do not think of myself as the angel Moloch, nor do i intend to. But throughout the book Langdon is submerged in his research around the hidden Ancient Mysteries whose knowledge is now lost to mankind because we have stopped looking at it the right way. The Lost Symbol is  knowledge. Knowledge by education, by research, by constantly learning. That’s what awareness is all about, knowing ones self is the missing key that prevents humans from realising their true potential; that there is a bit of divine in all of us. Whether we are neurotypical or neurodiverse.

This months hope is found in research.

Edinburgh University has been given £20m for autism studies. The Simons Foundation has made the contribution hoping to delve into the biological mechanisms that underpin changes in brain development linked with autism. You may remember – or not – that the Simons Foundation was also the foundation i wrote about in 2016. (see below)

Scientists based in the university’s Patrick Wild Centre for Research into Autism, Fragile X Syndrome and Intellectual Disabilities will use advanced techniques to probe brain development in the presence of DNA changes known to cause autism. They will be looking into the wiring variety of the brain and how it can affect how it can processes information.

There are so many on going projects around the world regarding autism right now. The poo research, the discovery of ASD genes that have never before been linked to autism show that we are now committed to investing big sums in search of a holy grail, a Word, a lost symbol. We are venturing out to the unknown in search of a gene, a pattern, a puzzle piece.

Stay tuned for Inferno.

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Snowman

My Christos went to the mountains.

He didn’t play, or feel it, or build a snowman. He posed for this picture and sat eating his favourite Lays Salt & Vinegar crisps and his favourite Lipton Lemon Iced Tea.

If he could talk, he would tell his mum that he is having a great time. That he is grateful she takes him on day trips and spends her day making this daily/weekly/monthly schedules. He would say how happy he is for letting him sit in the front seat and take complete control of the radio, and say sorry for shouting at her when she tries to sing to her favourite songs or tries to turn it down; it’s just how it sounds. Instead, he gives her a big bear hug, and dances by shaking his head, waving his hands and trying to sing.

The mountain air, the white scenery was beautiful and Christos decided to enjoy it in his own way. Not by running around in the snow and ruining it. It fit perfectly with his Car Routine certain voices, certain notes, a certain volume pleases his sensory overload. Instead of hearing the rushing of cars on the highway, the nooks and cracks of the car, conversations he cannot take part in, he prefers to have his songs on loud and enjoy them that way.

For that short time he hears one thing, he sees only one thing.

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A walk

Chris is in the middle of his ‘Dad Routine‘, he loves walks by the sea, on a sunny day, with daddy.

If he could talk, he would tell his dad that he is having a great time; instead, he shows him with the shaking of his head, and waving of his hands, the excited laugh and his hugs. The fresh air, the sounds, it all helps with sensory overload and sensory sensitivity for your kids; if they are deprived the stimuli of a walk and the sea are endless. If they are overloaded, like Christos, the exercise helps burn off energy, it relaxes the mind and makes him smile. He finds it easier to express his state of mind, his happiness and excitement.

If he could talk he would tell his dad how exciting it is to take that walk – from our house, down that long road, past all the places he knows so well, to the roundabout, past the Aquarium, towards the small church and down to the beach.  The hard pavement turns into dirt, an uneven walk through the nature, with sounds changing from car engines to the rustling of the tree leaves, the colours come alive, the stones, the sand lead to this place. He would explain to his dad how soothing the breeze is to his sensitive, overloaded skin and how the salty smell of the sea has become something that he associates with home. It leads to this place, a scenery of neverending blue pleases his sight, rests his tires eyes which are overloaded every day. The constant, steady movement of the water sends off a vibe that relaxes his mind, and the resounding sound blocks out all the unnecessary sounds from his sensitive ears. For that short time he hears one thing, he sees only one thing.

Happy Sunday.

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Making Routine Flexible d) Chris & his Dad routine

Thephoto 2se two are the men in my life. They are confident, strong fighters who not only have the endurance to plough through their own problems but somehow manage to be my inspiration and driving force in everything I do. It’s hard to put into words how much he’s done for Chris, for all of us. Currently, he’s working 12+ hour shifts as a chef in one of the most popular hotels in our area. I didn’t see him much while I was in Cyprus but I know that everything he does is for us. He worries about our past/present/future, health, happiness; everything.

When Chris got diagnosed he was a rock. Both my parents became glue – they never gave up, they never let go. They did absolutely everything. I never remember them breaking down, or crying; they did it at their own time. No one can understand the pain of a parent of autism. No, not because the child is autistic, but because they are helpless against it. I never remember them falling an picking themselves up; they were always up, ready to go.

 I’ve talked about my dad’s sacrifices, how he developed a whole menu for him in previous posts so, for now, back to the routine business.

If you’ve been reading previous posts, the theme is that an autistic routine is not the same for the entirety of someone’s life. There are people who live their lives following one single regime, because like i said before no two people on the spectrum have the same symptoms.

 When he spends his time with my dad, he likes to play with a box of beans. This is a Winnie the Pooh box containing beans (ranging over the years from black eyed beans, broad beans, kidney beans, lima beans etc). Much like the whipped cream mentioned in previous post the texture, sound calms him down. It relaxes him and he looks forward to it. It’s important to not condemn such repetitive actiphoto 5ons. Autism has certain sensory needs that we cant understand, so when an activity meets those needs its important for us to let them go through with it as  often as possible. Other than that, he likes to play Wii Olympics which he is very good at, he used to play with his (my) game boy, watch cartoons (generally looney toons, Hysteria, Tom and Jerry etc) or Disney films.

They will prepare his meals together, like i mentioned before we have a special recipe for everything he eats and he loves helping and contributing to the process. He can basically make egg and lemon soup, curry, rice, pasta and sauce by himself but obviously we supervise. He also likes all the dishes to be cleaned up, he used to take care of his own but somehow fell out of the habit of doing so. This is one of the downfalls, you juggle so many things with the routine because everything that comes naturally to us doesn’t to him. He has to see it in his programme and if it slips through the cracks a couple of times its a struggle to get it back in. The first day I arrived I asked him to wash his cup – we fought for 5 hours – he did it but i never heard the end of it. When my dad isn’t working crazy hours they do activities together. They take walks to the beach, they use to play catch, tennis, ride his bike, but the one activity that Chris asks for is going to church. There’s a little church near the sea close to our house and my dad does the unofficial maintenance. They go there every week, sometimes more regularly, and I don’t know what it is but he loves it. Maybe its the calm, maybe its the routine.

My point is, you can demolish their wall, you can break their routine, you can make them listen. It takes strength and patience, consistency and persistence; and I know you have all these qualities.

When you see that kid on the playground that seems a tad too old to be there, or uninterested despite their parents every effort, be kind. It takes a lot more effort to ignore autism than to embrace it. Don’t condemn our kids to being alone in the playground. Educate yourself, pass it on to your children. Make our world accessible to everyone.