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Covid Coping

Aren’t you distressed by this lockdown?

Imagine the distress of people who find comfort in routine, people who need the security of repetition. Eating the same meal, going to the same shop, drinking the same brand of juice or going to school. We have had a schedule in our home since Christos started using PECS – details here. I talk about it extensively and often because it is central to keeping him calm and happy. The enormous amounts of work parents put into developing their kids communication skills either with PECS or otherwise and teaching everyone to use it is inconceivable – you can read about it on this blog or visit the web pages for autism organisations who share stories. (You can’t spell autism without family)

An autism family spends most of their lives educating at home because even though they may go to school and do homework, they can only get to the point of going to school and doing homework if the family has paved the way. They can only continue to grow, if the family keeps putting down those blue bricks and creating paths for them to take. You don’t understand the time and effort needed  our children’s education and every day life. The determination of family and the incredible teachers who contributed to Christos’ education created this 22 year old man who reads, writes, tells time, does math in his head, teaches himself (and us) to use technology and loves (with a bit of encouragement from us) learning new things (if it’s on the daily schedule).

Imagine the distress of those parents who have to home-school children who would otherwise be taught in a special unit or by a speech therapist. Think of parents who have both neurotypical and neurodiverse kids, who aren’t working at the moment, who can’t afford new toys or resources to occupy or educate their own for another 3 weeks. Parent’s who have to reiterate different schedules to persons with autism who don’t understand this sudden unexpected change and disruption to everyday life. By the way, if you or someone you know if having a hard time, there is a lot of information on coronavirus and resources that may help here

Even though we are all isolating, it is important to remember that some people are more at risk of not surviving social isolation or not recovering from it. Now, more than ever we need to think of others and, while staying home, find safe ways to help others who may be struggling more than you. There are so many ways to be kind – calling, texting, delivering supplies, donating to your local charity, giving away toys or books you won’t use etc.

My plan is to raise money by selling paintings I have painted over the last few years. I am raising money for the SMILE project which operates in Famagusta, Cyprus because “the Cypriot government, while responsible in making education accessible and available for all, has failed to …provide establishments which can cater to adults with autism living in the Cypriot society. Hence, it is left to autism societies, organisations and groups to create their own places of education and development of character.”

But what happens to areas where such an organisation doesn’t exist? Or it doesn’t have the funds? What happens when these schools close because of Covid-19 but some parents, who aren’t working due to the pandemic, still have to pay utilities and rent to keep the school.

“Every person involved in the SMILE project was once just like you. None of us knew autism until it burst into our lives. But we started learning, growing, getting stronger and stumbling the whole way here – to this moment when action was needed yet again. So here we are, getting back up and marching forward, hoping that you will be a helping hand (or smile) by our side” – Smiling September

“SMILE was created with determination to establish a safe, educational space for our kids where the state has failed. It is [operating]…because of the fearlessness and strength of those involved. Those who have done the manual work, donating time and money to ensure that our gentle giants do not suffer the consequences of a state that doesn’t understand them” – 21 and Atypical: The SMILE Project

So, pick a painting you like and make us an offer. These are difficult times, so it’s up to you to make a choice and donate directly to the school http://www.autismsupportfamagusta.com/donate . I will post the painting to you on the weekend after you order it.

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Hear me roar (about autism): 2013-2014

I am saying goodbye to my 20s this year and will be fundraising for the Smile Project by Autism Support Famagusta. Smile is the first and only day care centre for adults with autism in Famagusta, Cyprus – and it hosts my brother. 

To donate please follow this link and use the hashtag #30smiles

After my graduation I was a bit lost. I didn’t know if I wanted to pursue a career in law, I isolated my self and spent most of my days on the couch or in bed. I had decided not to return home (to Cyprus) all the pursuit of happiness and love. Only, after three years of living away from home I still wasn’t any wiser re the happiness and completely lost about the love bit. One gloomy day, I was re re watching an old series when an episode about writing spoke to me. Coincidentally, I had a little run-in with blog writing at a temp job where I wrote a post about unemployment and the woes of being a law graduate in the state of today’s economy. The process, as well as the response, made me think this was destiny (I believed in destiny when I was 22, just like you did). So, I got out of bed and did some research. Ok I sat up in bed and did some research.

The blog tips I got from various internet sources, sitcoms and friends were “Be yourself”, “Spell check” and “Pick a theme, write about something you’re passionate about” – so what was I passionate about? Looking back now, it was so obvious and I don’t know why it took that long to find the answer. I was still learning about myself and crawling my way out of my own personal dark ages for the previous ten years so I had to dig deep and shed all the layers and masks I had on. One night, I was Skyping home and Christos was being a tiger on camera. After that I spoke to dad about the issues he was having at school. I hung up, cried and realised I’m passionate about him and his future. Destiny (i thought) struck again when I read a guest blog article on BBC about how autistic children are presented with special jargon phrases. Mark Neary captured it completely; it made me laugh out loud and at the same time gave me the courage to create this page and write my first post .

199123_10150167935090030_1697873_n (1)The next two years where a blur. The blog took off in a way that I never expected and so did I. I had so much to say, share, relive, consider, reflect on and learn. Writing all this down made me cry every time. Suddenly, in two years I went from re re watching series in bed and avoiding my feelings to advocating for rights in Canada, Australia, France, the UK and writing articles about us in Greek, writing to MPs and governments around the world. I was approached by autism charities, organisations, radio stations, TV stations about my story (links to articles under Published tab on main page). There was no hiding anymore, no masks.

Writing became a regular thing. It got me out of bed, it made me think, it made me angry, it made me change things and perceptions around me. I had found my voice and the roar I had been suppressing was bursting out of me. My life was filled with people from all around the world who were going through the same thing I was, who wanted guidance, help or advice. People who had just gotten a diagnosis, or who didn’t know which therapy to go for, or parents who worried about how the siblings of the kid with autism would be affected. Writing about autism brought me the happiness I was looking for and it made me look at me in a different way. I knew so much more than I gave myself credit for. I had so much to give and the sadness and anger I felt transformed into inspiration and were channelled into this blog – which made a difference in other peoples’ lives but, perhaps more importantly it mended my ties with my family, and myself. I learned so much about myself through writing about Christos – yet another gift he has given me.

I published 52 posts on the blog in 2013/2014 and, today, this is my 201st post. On the second day of 2020 I won’t set any resolutions because it doesn’t matter what you think you want to do or what is expected of you – what you are is already you. So I am grateful for transformation my brother inspired in the last 21 years, I am thankful for all the friends we have around the world through this blog and I am more inspired than ever to continue advocating for this cause.

I hope you will join me.

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Making Routine Flexible b) Chris in the car

Because my parents live about an hour from each other, my nan in the middle and the general attitude in Cyprus that you can’t go anywhere without a car Chris spends a lot of his time in cars. He loves the journey, he always, always, sits in the front, he has complete control of the A/C and the radio. He likes the AC to always be on 2, and the volume to be on 20. He used to want it to be on higher but we’ve negotiated a lower volume so that people in the car can have conversations of their own, and also not go deaf.

I remember we used to have a remote for the radio in our old car (A REMOTE FOR A CAR) and my mum would have to lower the volume between songs. Needless to say, we never got away with it. This is another example of how incorporating something new/different (in this case volume) is more easily accepted when not forced, or done in a sly manner (like when i was 2-3 and my parents fed me fish and told me it was chicken). It’s better to approach it directly, explain the situation and be persistent and consistent with your choices. Eventually after negotiating a lot of volume numbers we settled on one that satisfied all passengers of the car. He used to pick the music, CD’s, and play each song at a different point in the journey. If we were delayed he would simply stop the CD and wait until we got to that specific place to start it up again. He loves music, he listens to it all day long. From Greek music to English, from the 60’s to the contemporary charts. He’s always loved music, I know because my mum has embarrassing videos of us dancing around in our house. I believe music helps them interact better, the sounds, the melody, that special song that makes you want to sing or dance along, it develops their senses and it makes them want to interact with people around them; or if not, at least they are interacting with the music itself. I would recommend incorporating music into their lives early on, have it in the background, make them move around with you during an up beat song, sing to them and accompany that with movement. A single song can make us smile or cry and our kinds aren’t different, they just need that push.

Another lovely thing about travelling with Chris is that you cannot, CAN NOT, sing in the car. Their sensors are bursting at that point and our off-key, often wrong sing-alongs are quickly squashed. This isn’t something he’s just picked up, he never liked us singing along to songs he was interested in, he’s enjoying the music so much that any attempt disturbs him.

If you see a kid somewhere shaking their heads, flapping their hands or jumping around, listen for music. That might be their way of dancing or expressing themselves, their expressions are so carefree and genuine. They don’t care if people are looking when thy’re dancing, or if their moves are out of date.

Educate yourself about Autism and join the dance.

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Making Routine Flexible a) Chris & the Airport

So, for the first part of the routine chapter I chose the airport.

1) Travelling: When we book tickets we inform him immediately. It’s incorporated in his schedule for the year; he is shown pictures and videos of the place so he knows what to expect. He used to be difficult to travel with but now, with the help of his schedule, he enjoys the process. He oversees my mums packing, queues, waits for luggage, leaves his seatbelt on through the flight; he handles flights better than we do! As he grew he became more flexible, so we don’t have to carry around a bag with all his food in it any more (as mentioned in Not everything is black or white). He’s been to  Sri Lanka enough times to know exactly what to expect and to even ask for activities we miss out on sometimes.

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2) Airport trips: One of his favourite things to do is picking up people form the airport or taking them there. We tell ourselves its because he misses us, but we all know its for the bake rolls. Because of his dietary restrictions he’s not allowed gluten (as discussed in Best food critic in town) but he loves bake rolls. My mum has  had a long-term agreement with him that he is only allowed to have them when he goes to the airport. So, it’s on his schedule and he reminds me every time we speak. He walks in, goes straight to the shop, gets his garlicky bake rolls and his lemon Ice Tea and sits outside arrivals waiting (usually for me). By the time I come out the is usually done, and we have our hugs and kisses. Sometimes, he might not be in the mood to but he will anyway because he knows by now that its expected of him.

I know the struggle that families go through to pull their kids out of their comfort zones, to never let them give up, to force them to try new things, and it is something we have done/are doing ourselves, but it might be better to incorporate those changes into their routine. This will make their transition from comfort zone to the ‘new’ a bit less daunting. Add one small new thing every week/month and gradually increase it. Don’t make it into a big deal, don’t put pressure when they refuse to do it the first few times. Be persistent, be consistent; they respond to routine, to repeated actions. So when you introduce a new thing every week it will become part of their general routine. So, one day a week they have in their schedules do something new with a family member; you’ll be surprised how easily they will accept it.

So! Next time you see a kid running around in an airport, a mum frantically running after it, a family with wayyy more bags than members, or a child that can’t seem to settle down on an airplane, be sympathetic, understanding, try and put yourself in their position. Learn about autism, help us make the world autism-friendly.