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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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Hope in Love

I’ve gone back to fiction books now. I’m reading A change of Heart by Jodi Picoult. You may remember her name through the floods of tears that consumed you if you read My Sister’s Keeper.

This book is about a lot of things, but mostly it’s about love. Overwhelming, unconditional love that makes us do things our brain cannot comprehend and our/or our society’s ethics and morals find inexplicable. It’s really good – read it.

So, this month’s hope write-up finds hope in love. Cliche? Maybe. But February is to many a month of love. It’s also the month that I celebrate my mum’s and my pappous birthday so it’s overflowing with love.

I searched the word ‘love ‘ on the blog so that I could refer to any previous posts I made about the topic. Apparently, I use it in nearly every post. My favourites are: 100 posts

PS Love?

When living with Autism, love is something that you never think your kid will miss; because you love them so unconditionally. But then you’re driving and he sees a girl walking down the street and he waves at her; it’s so unexpected, it’s so out of character. Mum and I laughed so loud when Chris did that one time. However, it reminds you that love – that feeling that we all need, seek, treasure – is in all of us. Whether we can express it or not, we want love in our lives. Everyone who has Autism in their life has thought about how their kid might never have that feeling, might never find someone to love, live with and have a family with. It hurts. It’s a feeling that you wouldn’t wish on anyone.

Back to love

I was on the bus yesterday when a couple sat in front of me and another sat behind me – I was trapped. Almost immediately the couple behind me (Couple 1) started tickling each other and the girl sat in front of me was stroking her boyfriends hair (Couple 2). Let me make the point that I am not a fan of PDA, I am not a fan of eavesdropping, lets just say – I am not a fan of couples. But, one of these two couples moved me so much – they were inspiration.

Anyway, to the point. I read the love story of Ron and Kristen Sandison the weekend. He jokes “My wedding anniversary is December 7th, and due to autism, I came into my new family like a kamikaze—a blazing whirlwind of fire.”

On their 3rd date Ron recalls that he revealed his “quirks” to Kristen: “After work every night, I spend 2 to 3-hours in Bible memory time. This daily routine empowers me to be able to quote over 10,000 Scriptures including 22 complete books of the New Testament, and over 5,000 quotes.”

At the 3 month point, he shared with her a story about how he carried around a stuffed prairie dog named Prairie Pup from kindergarten to sixth grade and that he collected and continues to collect Calico Critters; 3” tall animal figurines dressed with handmade outfits; hundreds of unopened boxes lined up in perfect rows against his bedroom wall at his parents’ house.

On their one year anniversary of their first date Kristen gave him the Calico Critters Meerkat Family.

On their 3 year anniversary, they had on Calico Critters on their wedding cake; the bride and groom were cats and the priest a beaver.

In March 2016, they welcomed a baby girl.

Ron thanks his wife for demonstrating compassion and sensitivity to his sensory issues by not using nail polish in their apartment or playing music with bass. He thanks her for proving everyone who doubted that Ron could be loved wholly and unconditionally by someone one day, wrong.

Ron writes for magazines and does guest lectures on autism. He wrote A Parent’s Guide to Autism: Practical Advice, Biblical Wisdom. Ron Sandison works full time in the medical field and is a professor of theology at Destiny School of Ministry. He is an advisory board member of Autism Society Faith Initiative of Autism Society of American. Sandison has a Master of Divinity from Oral Roberts University and Charisma House. Find out more about him here.

There is love out there for all of us. Refusing love because someone can’t stand the smell of bleach, because they are this, that or the other is judgement embedded in us by made up standards society imposes on us. It’s up to us to stand up to these moral, ethical, political barriers and believe that love trumps hate. For eons gone and for eons to come, one thing has been constant and one thing have we not been or will not be able to live without – love.

Happy Love month love bugs from me and my eternal Valentines:

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