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21 and Atypical: Hakuna Matata

It means ‘no worries’ for the rest of your days.

IMG_6995Christos and Stephanos grew up loving Disney, Warner Bros, Dreamworks, Pixar etc – also we love all those films so it was one of the repetitive actions that we didn’t worry about or mind as much. Among their favourites are Anastasia, Hercules, Peter Pan, Robin Hood, Pocahontas, Cars, The Road to El Dorado and dozens of others. Our houses were always full of Mickey, Minnie and all the heroes and heroines they grew up watching and imitating. In this post we’ll talk about the Lion King. Since its debut in 1994 The Lion King, won two Golden Globes, two Academy Awards and that’s not even listing all of them! The musical version won a Tony for Best Musical and numerous awards for Best Costume and Lighting. Later this year, summer 2019, Disney are releasing a remake of the Lion King using virtual cinematography technology. Basically, we’re obsessed with the Lion King.

I was lucky enough to go watch the musical in London a couple of weeks ago. Listening to that opening song I was transported back to our living room where I am desperately trying to get my little brother to notice me and play with me. After the age of 1 Christos started ignoring us and tantrums were just ordinary. As a big sister I was enamoured by him and his smile – the one that was too big for his face – and wanted his attention so badly that I let him destroy all my dolls, all my board games, all my Disney VHSs. One of the only things he would let me do with him was watch animated films, like the Lion King. In fact, we watched it almost every day for years. He would play the whole film and then rewind it and watch it in reverse, or he would fast forward scenes that he was scared of.  It got to the point that we had to limit it to only watching it when we visited our grandparents. My grandad, wanting to be part of his world like all of us, would sit with him and watch it whenever he got a chance. He often tells us stories about Christos being afraid of the hyenas and at a specific scary scene (elephant graveyard/Scar’s song) he would  hide behind the couch and listen carefully until it was safe for him to go and take his seat in front of the TV again. Christos wasn’t much for emotion back then (he’s a big softie now) but our grandad remembers how happy he was each and every time he watched it and how he lived every different scene every time. My love affair with these animated films was reignited when I realised they were a world where I could talk to my brother. Through scenes, colours, songs and music I saw my introverted brother react to sounds, express fear, amusement and sadness. Simba, Timon and Pumba unlocked something in Christos that I thought I could never access. Of course, he doesn’t let us sing along or dance or say the lines but there are rare occasions when he does. Like dancing to “A whole new world” with my mum on his 18th birthday or letting me watch The Emperor’s New Groove even though he would rather Peter Pan. Anyway, there I was watching the Lion King musical, weeping at how beautiful it was and at how grateful I am for that first song, the song that brought my brother back to me.
Stephanos’ sister, Christina, has told me about how they watch the Lion King as a reminiscent of what they used to do as kids. When the ‘Hakuna Matata’ song comes up they literally both jump up out of their seats, just like they used to do, and they start imitating Timon and Pumba; she’s Timon and he’s Pumba! She describes how fascinating it is to see Stephanos so full of excitement and joy and how well he can imitate these characters. It’s a great feeling seeing your brother engage and show off skills that you would otherwise miss. It reminds us that while our boys are capable of imitating and pretending, they are also making the choice to just be themselves. Stephanos loves music. His mum was telling me about his artistic side which has developed over the years and what a big part of his life music has become. You may also remember that music is used as a form of alternative therapy many reasons but also for people with ASD. Stephanos jumps into place as Pumba, the big loveable friend who never gave up on Simba, and he hits the exact notes of Hakuna Matata – the most wonderful phrase. Not only that but he also makes the background sounds of the music just with his mouth. His sister says “he is unbelievable and so talented”. Chryso, Stephanos’ mum, tells me about how he knows all songs, lyrics and scenes. He still watches them and he can become quite obsessive by rewinding and fast forwarding to specific scenes. Sometimes his brothers and sisters act out particular parts of  a film, for example “its a piranha its a piranha!” from Tarzan to Stephanos’ amusement. While for me it took years to break into Christos’ world, Christina remembers the Lion King singing as being just a part of the activities her and Stephanos shared. They danced to “I will Survive” and they drew together – even though when he was younger he was already a perfectionist and wouldn’t let her draw what she wanted but would take his pen and do it his way on top of her drawing.

In both cases the Lion King brought out something in the two boys that we hadn’t seen before. Their singing, acting and dancing abilities or their emotional and more child-like nature. In either case, they grace us with showing us a part of their character that others wouldn’t see because the autism label overshadows it. When you think back to what these animation films meant to you, or your kids do you see a difference? Did you not squeal when Jafar turns into a snake? Did you not bop your head or scream out the words to Hakuna Matata? Did you not feel the pride of Mulan going back home and taking her place in the world? Is autism even factor in on how we all felt watching these characters? In the end, whether we’re under the sea, on the road to El Dorado, or just around the river bend aren’t we all the same?

#21andAtypical

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21 and Atypical: Dancing with the Stars (aka Sisters)

Christina is Stephanos’ older sister and she shared this story with me earlier this week.

53423695_926770284324454_1836469629984178176_nWhen I was around 15 and Steph was 14 we used to listen to this song “I will survive” by  Gloria Gaynor and we used to just dance to it“. Christina is a year older than Stephanos and has loved dancing since forever. So , she decided to make up a choreography to the song and include Stephanos! Her many choreography stunts included lifting her little brother which she finds hilarious now as he is much bigger and taller than her.  They rehearsed it and danced to that song all the while sealing their sibling bond and creating memories that would last forever and would end up being shared on this blog, with you! As they got older and Christina moved to the UK for her studies their dance faded into their childhood. Christina remembers “after approximately 5 years, we were just sitting around with my mom and Steph listening to the radio when the song popped up! I looked over at him and said ‘Steph it’s our song!’ For a moment he looked at me like he was trying to process which song it was but when I stood up and positioned myself he immediately stood up as well and walked to the exact position he had to, to start off our choreography. I was so amazed by his memory. We started dancing to it again and of course half way through I forgot it but he remembered it all.” 

483721_10151540249360030_589832536_nFunnily enough, when I went home recently we were watching old home movies and going through old pictures and found videos of me and Christos dancing in our flat in our pyjamas. We would listen to same song repeatedly, switching off all the lights and run around with flashlights.

Growing up with a younger sibling with autism we couldn’t help but wonder if we can handle it, if they would ever speak, if we would ever be able to communicate with them. At first we were afraid, we were petrified and kept thinking we could never live with this diagnosis by our side. But, we survived. We look back at those years now thinking how we spent oh-so many nights just feeling sorry for ourselves, crying because we thought we’d crumble. Yet, we survived. We more than survived. We were pushed, inspired, lifted and moulded by them. We are us because of them.

As sisters we were tied to this dance even before we were born. But, and I’m sure Christina will agree, if we had a choice, 20ish years later and knowing all the things we know now, we would always choose to spend all our lifetimes dancing with Christos and Stephanos.

Read about more amazing sisters I have met through this blog here.

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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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Be creative – Alternative therapy

In the last post I spoke about Aquatic therapy, but there are some other creative therapies you can explore:

Autism and Horseback Riding: Horseback riding can be tricky, you’ll have to find a place near by first, and the people need to be professional, and have experience with autism; not necessarily trained but be aware of it. That aside, it’s a great sport for kids with autism. It has been clinically documented that just being around horses changes human brainwave patterns. We calm down and become more centred and focused when we are with horses, because horses are naturally empathetic. The Horse Boy Foundation – set up by a man who wrote a book about riding with his autistic son – is running a programme of summer therapy camps for autistic children and their families in Britain. Dr Nicola Martin, an autism expert at the LSE, said she thought anything that brought children and families together would have a positive effect. “It’s certainly not about healing or curing, because autism is for life, but being out in the countryside, close to nature, doing something enjoyable like interacting with horses, has got to help families come together.” When my mum tried to take Christos horseback riding he didn’t like it, so my mum ended going riding instead. I vaguely remember trying it out for him, it is a pleasant and beautiful experience. There is a special connection with animals because they can sense our intentions, so our kids find it easier to connect to them, they don’t need words. We had a dog for a couple of years, Christos rarely played with him, or walked with him but the night he went away Christos was inconsolable. It is a therapeutic activity – hippotherapy – and many autistic children excel at horsemanship. Read Horse Boy

901447_1403664539874325_322937616_oAutism and Track: For kids with autism, track and field may be an outlet. Running, jumping and any other activity becomes an outlet for their over-activeness. Chris is always running when my dad takes him on walks. Also, track events don’t require excessive verbal communication skills. It doesn’t have to be a track, it can be a field, it can be a walk; just give them the space to run and let loose. Their overloaded senses get relieved and if their senses are less developed the fresh air and the feel of running/jumping may become a stimuli. Once they are able to release that tension they will become more cooperative, or more likely to respond to verbal communications. For example, Christos became addicted to jumping on trampolines, so much so that my dad bought him a huge trampoline which we set up in my nan’s back yard. For years, he used to go to nan’s and just jump for hours. He was so happy during and after, you wouldn’t believe it unless you saw it. Some times he wanted company, some times he didn’t. My mum also had the park in his schedule, so that he can socialise and interact with other kids that did the same. He knew he only had an hour, and the person in charge was always very supportive and let him stay on for the whole time, he never protested when it was time to go; it was on his schedule, it was a rule that could not be broken!

Autism and Bowling: Even though it’s loud, bowling seems to be a sport many kids with autism enjoy. Perhaps it’s the repetition – bowl twice, sit down – or the satisfaction of seeing the pins come crashing down, or the feel of the ball/floor. Whatever the reasons, bowling is a great sport for social events that include kids on the autism spectrum and Christos enjoys it often on school trips.

Autism a861094_1403664296541016_347590982_ond Hiking: In contrast to bowling the peace and quiet of the natural world is a great stress reliever. This is something you will need to check with your kid. Are they sensory deprived or overloaded? This will prove to be a huge help for you when planning their activities. Hiking, or just walking in nature, or a beach – which can be an individual or group activity – is an easy way to get exercise and without intense social communication. Fishing is another sport that may be of interest. The sound of the breeze, birds, insects, water and leaves as well as the feel of walking on rock, sand etc can be soothing to their senses.

Autism and Biking: Teaching Christos how to ride a bike was probably quicker than it was teaching me how to ride a bike. Some kids are super coordinated, but for some it can be tough since balance may not come naturally. He enjoyed cycling very much, gave it up for a while or refused to try, and now he’s doing it again at school. This is another good point, don’t force sports or exercise on them. Be creative and find other ways of keeping them active. Cycling, skating, roller skates, can be a wonderful ways to enjoy the outdoors and keep them occupied.

 Autism and Just-for-Fun Sports: If they are willing to get involved in team sports; great! A good way to start is by playing with them just for fun. Whether it was basket ball, football, tennis, tossing the ball back and forth, or learning to skate, you’ll be building both physical and social skills if you do it together, bring in relatives, cousins neighbours slowly and see how they interact. During physical activity is a great time to introduce new things into their routine. In the long run, it’s experiences like shooting hoops with dad that will be the cornerstone of them making their school team.

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It’s not on them to be good at track, bowling, horseback riding, it’s up to you to find what’s best for them. With Autism, you can never give up, you have to keep trying new things. As no two children on the spectrum are the same, it can be a long process to find what’s best for your kid but when you do, it is so rewarding.

Learn, educate yourself about Autism. It’s not about you, it’s about them.
Check out this video on Sensory Sensitivity