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Shopping with Autism

The thought of writing this post makes me smile. It’s that smile you have when you have overcome something and then you look back on it years later and think “How was that my life?”.

In 2015 I spoke to you about Christos’ traits in “Why fit in? a) Gestures“: [He] likes to shake his arms in the air a lot, quite forcibly and he makes this laughing but not laughing sort of sound. When we are in big open spaces he’ll run like the wind. When we were in supermarkets, when we were in Disneyland, generally in places where he feels comfortable. 

Looking back on that now, it’s quite funny to think that I used supermarkets as an example of a place where he feels comfortable.

Up until the age of 8 (?Mum correct me) going shopping with Chris was a nightmare. I’m not exaggerating. It was like walking into a living breathing nightmare. Most of the time mum and dad wouldn’t take him. But when you’re on your own and you have a 10 year old and a 2 year old, and they need milk, or nappies, or food, you gotta pack up and go to the supermarket. It wasn’t something we could avoid.

Just thinking of driving up to the supermarket makes my palms sweat. It was loud, it was cold, it was too much. His sensory sensitivity was off the roof. He cried, he was on the floors, he was red, his clothes would come off, he was screaming and there was nothing we could do to console him. We would return home traumatised.

A couple of years later, we could stop the screaming, by getting him chocolate and crisps. Then came the years where we would go in and didn’t need to drag him across the floor to the till. My mum stopped apologising to everyone. When he got a bit older, we would make a list, he’d know where everything was and there was no crying. He would organise the shelves. If something in Isle 4 was supposed to be in Isle 12, he knew and he would fix it.

Now? Now it’s one of his favourite places. You can tell him what you want, he’ll tell you what he wants, you’ll try and offer a compromise, you’ll lose and everyone goes home happy. No crying or screaming involved. This is a testament to my parents. Not the strangers around us who, instead of helping, stared in disbelief, not being able or willing to understand that my brother was not naughty he was just in incomprehensible pain. My parents made this progress possible. Milestones are different to all of us, and this is a millionstone (trademarked).

When I left home in 2008 he was 10 and in the organising phase. My dad worked nights so in the afternoons it was just Chris and mum running errands, going shopping. I remember her calling to tell me they had been ‘banned’ from a supermarket. Chris was sorting out the chocolate shelf (without pay) like he always did, while mum was picking some other stuff up from a bit further down. Chris found an open chocolate bar and he kicked it under the shelf. [LOLLING] I mean, why was there an open chocolate bar there in the first place?? Who’s fault was that?

Anyway, one of the staff found my mum, told her he was disturbing or stealing or that he was part of the chocolate mafia; I don’t know what. So, they asked them to leave. Now, those of you who know my mum can imagine. Those of you who don’t, let me just tell you that she’s not like me. She’s shy, polite, kind and was shocked. In her state, she was unable to express herself and instead just stopped going to that supermarket.

My rationale was to call the supermarket, from the UK. I was quickly convinced not to. Instead, I told everyone who would listen that this had happened in that one supermarket in my home town. My sister (who broke the World Guinness record for the 4th time, as mentioned in previous post #justsaying) was outraged. I remember us driving past the supermarket and always remembering, bringing it up.

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I was so resentful of that brand, that when I moved to Brussels and it was the neighbourhood supermarket, I hated myself for sometimes forgetting to make a list and going somewhere else and instead having to buy milk from there. That’s right, I can hold a grudge. The original supermarket recently closed down, and I would be lying if I didn’t feel a tinge of happiness that that place, where my mum was made to feel inadequate and my brother was singled out for being himself, was no longer there.

In recent years, many big supermarket brands have introduced measures to help their autistic buyers. For example, The Asda “Quiet Hour”, earlier this year Tesco trialled a ‘quiet hour, Marks & Spencer has launched a uniform range to help children with Autism etc. This year the National Autistic Society (NAS) has launched the “Autism Hour” to help draw attention to the difficulties that people with autism can face in noisy environments.  If you want a glimpse into what its like, watch this video.

In the first week of October, businesses will turn down music, reduce announcements and dim lights to help create a calming and less daunting environment. A number of major retailers have already signed up to the initiative, including Clarks and Toys R Us and we hope to see many, many more name brands on the list.

I hope this is a success. I can’t help the voice in my head screaming that this is making autism the exception instead of teaching acceptance. However, the other voice in my head (i know how this sounds) is reminding me that all the people involved in this initiative will go home and talk about it with their family, their kids, their friends. I am reminded that this is awareness at it’s best because it helps you understand and take away only the best. I hope that this paves the road to us shopping together, with more understanding than judgement, more humanity than dread and with more knowledge than ignorance.

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Friendship

Friends are a funny concept aren’t they? You meet this stranger and you’re like “You. I want to do random things with you forever. I want to share my life with you. I wanna tell you all the stupid things I think of.”

I have three friends that I have known most of my life, and whom I adore beyond measure. These girls are the girls that cry with me when I talk to them about Christo, they get mad with me when I tell them a member of my family was mistreated, they laugh when I tell them I fell over, and check on me and my family when one of us is unwell.  These are the girls I don’t talk to every day but I would run to if they needed me. I love them with the kind of love you love your own. I love them because they love my family with a love you haven’t experienced before, and vice versa. One of them helped with #Project324 last year (you know its you papaokori). One of them makes me laugh like there’s no tomorrow and is my soulmate.

My point is that these people are embedded into my soul and they love my brother as much as i do. I want to tell you about something extraordinary one of them is accomplishing today. She currently holds 3 Guinness Records:

  1. The Longest time in an abdominal plank position (female) is 3 hours, 31 minutes and 0 seconds
  2. The Longest time in an abdominal plank position (female) with 60pounds on her back is 23 minutes and 20 seconds
  3. Most handstand pushups in 1 minute is 35 pushups in 31 seconds

These 3 records she broke to prove to the world that you can do anything you set your mind to, despite all odds.

Today, 21st July 2017, she is attempting to break another World Guinness Record. This time she’s doing it for a little girl called Stavriana. She will be attempting to break the record of 1206 knuckle push ups to 1300 knuckle push ups in 1 hour.  Stavriana suffers from Cornelia de Lange syndrome and Crohn’s desease. She is only 7 years old. She is the youngest of 5 siblings, all under 18, and is being raised by a single mother. She is in pain every day and the money is being raised to enable her to travel to Israel for an operation that will make life a bit easier for her and her family. The aim is 50,000 euros. You can donate through paypal at https://www.paypal.me/helpstavri

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I could write pages about how inspiring this woman is. But I will never be able to  tell you how she makes me feel. This girl is magic. People around her love her because of how unapologetically she loves people.

She has overcome medical predictions and countless hardships in life. Yet, she is always the one giving. She is always the wise one, the funny one, the one you go to. The brave one.

I know that our town, our island will embrace you and Stavriana today. I know that they will give, and make you proud. I know you won’t expect the love you will be suffocated with today. I also know that no one deserves this more than you.

No good luck needed. I’m with you,  my sister.