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21 and Atypical: Popping to the shops

In 2018 Sainsbury’s launched a new trial to help enhance the shopping experience for customers with hidden disabilities. The trial enables customers with hidden disabilities to collect a lanyard which indicates to colleagues that extra support is needed. The scheme helps those with hidden disabilities, such as autism, dementia, visual or hearing impairment by alerting staff that extra support may be needed while shopping. Lanyards are available to collect for free and are for each customer to keep so they can wear it every time they come into store! Not all Sainsbury’s stores have implemented the initiative yet. Sainsbury’s is the first supermarket to test the initiative, following Gatwick Airport’s successful launch and, by using the same sunflower lanyards as Gatwick and Heathrow Airport, Sainsbury’s sets an example for other retailers to follow.

In Shopping with Autism I described how, before Christos started school and was able to communicate with us better through PECS, going shopping with him was a nightmare. It was like walking into a living breathing nightmare. 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 after every trip – and there were a lot of trips. 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 literally 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 aisle 4 was supposed to be in aisle 12, he knew and he would fix it. Now? It’s one of his favourite errands. 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. 9 times out of 10, Christos will jump at the chance to go to the shop; big or small it doesn’t matter! He will pick everything and stand over my mum and shout and order her around until everything is unpacked and stored back home. Now, he has the skills to shop for himself. This growth, this maturity and his development is a testament to my parents’ unwavering will to prepare him for the trial and tribulations of every day life.

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Stephanos is not interested nor does he get involved in the shopping aspect of daily life.  He knows and trusts his family to provide him with food stuffs, he is adaptable in brand names and is happy with to have his small juice, ice cream or chocolate and let everyone else deal with the hassle of a supermarket. He doesn’t go to the shops and will not get involved unless he is asked to by his family. When he is asked, he kindly obliges and goes back to his snacks. Whereas, Christos will make you do it all his way. Stephanos’ shopping routine took roots when he, his dad and brother took him to the supermarket with and got him a juice, a chocolate or an ice cream. This simple action, possible done to distract from a tantrum, triggered a routine which he follows when he does participate in a shopping trip. The brands of juice, chocolate or ice cream are not always the same  but he always picks out the three items mentioned above. But, just like his pal, his early encounters with big markets, the sounds, smells, people, intrusion of private space would trigger him when he was younger. At 12 years old, Stephanos had a huge meltdown in a shop in the UK. His mum remembers it as a huge episode including self-injury and the worst she had had to deal with up until that time. Even though the family don’t usually take him to big markets so as to spare him the angst, when he does join he is much better equipped to deal with a mood, or someone clearing their throat. While he may get a bit upset and start stimming, overall he is happy with his treats. I mean, I order everything online just so I can avoid these places, why should our boys feel any different?

The reason we collate and write about these stories is to give you an insight into autism daily life. It’s not always easy but it’s not always difficult either! These boys have gone from kicking and screaming to young adults who know how to help their parents, how to negotiate and take a step back when it all becomes too overwhelming. Christos and Stephanos’ stories are being told so that next time, when you see a parent desperately trying to get their child off the floor, or a kid making sure all the water bottles are facing the same way you may see a bit more than what’s on the surface. You may see the need to help make this world more autism-friendly and you may remember that milestones are different for all of us. You might remember these stories and realise how this was a millionstone for both of them.

My brother is a controlling shopper and Stephanos would just let him get on with it.  When you see them and spend time with them you always get the impression that the boys have a full understanding of each other and respect each other’s character, boundaries and behaviours.

#21andatypical

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21 and Atypical: Christos

There are 180 posts about Christos on this blog so I will spare you the repeat and link you to the one that describes how I see him best. I wrote this on his 18th birthday and contributed it to Ambitious about Autism’s International Day of Families campaign.

Click to read: To Christos, on your 18th birthday: https://christos90.wordpress.com/2016/05/05/to-christos-on-your-18th-birthday/ 

Christos Profile: 

Born: 06.05.1998

Diagnosed: 2001

Loves: Music and Food

Loathes: People singing and ruining the music, sharing food.

Character: Cheeky monkey

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My mum does not recall the exact age but she remembers him being very “difficult” on his first birthday. We were recently watching old videos of all the cousins and in one video he is running after the camera, responding to his name and in the next he doesn’t turn around even after 4 -5 times of hearing his name.

Over the next few months/years my parents watched their big eyed, pointy eared little monkey become isolated. They took him in for hearing tests and were told there was nothing wrong. He started walking on his toes and at 2 years old he still hadn’t spoken any words. My parents saw a speech therapist who referred them to the general hospital in Nicosia for further exams on nothing specific. At the age of 3+ he was diagnosed from mild to moderate autism. At the age of 4+ he was diagnosed again in the UK.

The family were distraught. Would he go to school? Would he speak? Would he be able to take care of himself? Would he have friends? Fast forward 16 years and we have a young, gentle man full of promise, love, compassion, who has friends, who takes care of us and has a lot to say. He takes care of the people he loves and makes sure his friend Stephanos always has the swing next to him at break time.

My baby brother is iconic.

#21andatypical

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21 and Atypical: Stephanos

young stephStephanos was born on 21.06.1998. His mum remembers his first words being ‘Mama Papa’ before he was even 1 year old. His 5 older siblings showered him with love because he was the baby, the centre of attention. They were all enchanted by that big smile. Just like any other infant he ate a variety of fruit jars, fruit cremes and mashed potatoes and carrots, packed full of flavour and smells.

At 11 months, he stopped reacting to his name. He stopped eating colourful food and stuck to Cerelac, biscuits and Farley’s rusks. He closed himself off, deaf to his family’s calls for affection. They remember it as him regressing instead of progressing. He stopped saying ‘mama papa’. He started stimming – hands in front of eyes, flapping hands, tiptoeing and making sure all his trains and cars were in the right order.

At 2 and a half years old he was diagnosed with ASD.

Stephanos’ family quickly jumped into action. They tried most of the alternative therapies for autism as well as speech therapy, occupational therapy, hyperbaric oxygen chamber therapy, Applied Behavioral Analysis, one to one teaching and of course used PECS. With PECS his family started communicating with him again. With music therapy they got to see that smile again. With speech therapy his speech resurfaced. Little by little, they got an inch of him back at a time.

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With the support of his big, strong family Stephanos was able to express his artistic side. Nowadays, he has an art studio next to his home where he takes daily lessons. He loves painting horses, having started with a basic drawing and slowly adding the horse mane and the tail to eventually win an Erasmus award for one of his paintings. He also has music sessions three times a week and he loves it! In fact, he knows most of the Disney songs off by heart and he loves Grease the film – and I mean, who wouldn’t? His mum describes to us how on school days they have to play Peter Pan, El Dorado and Robin Hood in the morning, have a little dance and roll and only then are they ready to go to school and start the day.

Even through his verbal communication has declined over the years, Stephanos is a major part of the Prodromou familia. He makes them all laugh, he makes them proud with his art, he overwhelms them with pride when he simply picks up a piece of cheese from the fridge and makes himself a mini sandwich. Stephanos’ own milestones and accomplishments are the product of a long and difficult journey.

Through his ups and downs, he has grown into a thoughtful, caring, compassionate and talented adult who approaches you when you are upset and gets excited when his siblings visit. Perhaps the greatest thing Stephanos has done is inspire the people around him. His family, friends, teachers and other kids get to see his progress and have hope.  Stephanos’ story gives hope to newly diagnosed families that it will get better and even if it doesn’t there is a group of people who will stand by them. He has inspired his parents and my parents to take action and to speak up for him and for all the autism families who need it.

This is just the tip of the iceberg when getting to know Stephanos. I’ll be telling you all about what he likes, dislikes, his calming routines and even his bad days – because who doesn’t have one of those once in a while? We’ll dive into a beautiful, atypical friendship between two boys who accept, acknowledge and respect each other. For example, Stephanos does not like it if you touch your own face or head (same for Christos), yet! somehow they don’t bat an eye lid when one of them does it. Boys eh!

#21andatypical

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21 and atypical: Friendship

Countless interactions, conversations, memes and quotes indicate that friendship is voluntary mutual respect, support, loyalty, laughs and a connection that lasts a lifetime. Your classic examples of a friendship are images of people hanging out, going out, sharing experiences and emotions.

Would you consider it a friendship if the two people involved had never uttered a word to each other? If they had met when they were 7 and gone through primary school, high school, speech therapy, occupational therapy, music therapy, hyperbaric oxygen chamber therapy together without having a play-date or sharing a secret? Is it a voluntary friendship between the two boys if the parents were the ones that fit the friendship description above? If it was the parents who supported each other emotionally, mentally, called, shared their deepest darkest fears and found strength in their shared experiences?

Dr. Suzanne Degges-White , a friendship expert, explains that “True friendships are hallmarked by each member’s desire to engage with the other – it’s about mutual interest in one another’s experiences and thoughts, as well as a sense of ‘belongingness’ and connection…Friendships require reciprocity – of admiration, respect, trust, and emotional and instrumental support.

Christos and Stephanos met in 2005 when they started primary School in Ayia Napa. They were 7 years old and had been diagnosed with ASD – Autism Spectrum Disorder. Since then, they have grown up in each other’s presence.

52158514_408230119981576_493427098757627904_nThis year, they are turning 21 in May and June. This year, they leave school together. This year they find themselves facing a new challenge because governments don’t offer suitable support for adults with autism. This year, once again, they carve out a new path – their own path – which will be one that will enable other adults with autism to follow. Our boys will lead the way – again. They will inspire – again.

Over the next few months we (the two families), in collaboration with the Famagusta Autism Support Group, will be campaigning to raise awareness about autism in adults by attempting to give you a glimpse into Christos’ and Stephanos’ silent friendship. A friendship that is purely mutual respect and acceptance. A friendship that is as unique as the two gentlemen behind it.

The mission of the 21 and Atypical awareness campaign is to document how one pair of children with autism grew up to become adults with autism. We want to shed light on the highs and lows of their journey to adulthood through stories, memories, dreams and ambitions with an aim to create a world in which they are simply ‘adults’ accepted and accommodated by our societies. We hope that their story will inspire you to help us or your local autism group/organisation/neighbouring family build foundations for adults with autism to grow, set down roots and pave the way to a more positive future.

 

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The [A] Word: Look for the [S]igns

One of the most important things you need to understand about fighting Autism is that it needs to be diagnosed as early as possible. Early diagnosis means early treatment; development of social skills; development of speech; creating a life and environment for them in which they can grow, not be restricted.

Red Flags

Not responding to their name by 12 months of age;

Not pointing at objects to show interest or curiosity;

Difficulty in establishing eye contact;

Not participating in ‘family time’; and want to be alone

Getting agitated in loud situations or in crowds;

Having trouble accepting change in their environment;

Having trouble expressing hunger, thirst, pain;

Have extreme reactions, to music, smell, food, colours, or the way their clothes feel;

Impulsive;

Impassive;

Short attention span;

Temper tantrums;

Or has flat or no facial expressions in different situations;

Delayed speech and language skills;

Repetition of actions or sounds over and over again;

Obsessive behaviour with one toy, or object, for long periods of time;

Hand movement, rocking of body, high energy and other self-stimulatory behaviours;

Or no energy at all, some kids are completely closed off;

I remember my cousins being so curious when they were infants, so interested in everything going on in the world and the people around them. Chris was interested in things around him but it was smalle10173765_10152395220290030_5414277748163382939_nr things like he didn’t look at us when we spoke to him, he didn’t want to play with me he’d rather play with my things by himself, he would throw tantrums when he was thirsty but couldn’t tell us or point to what he wanted.  For example, a child might be able to read long words but not be able to tell you what sound a “b” makes. When he grew up these things changed because of the early treatment he received. There was a year when we couldn’t hug or kiss him without him getting mad; there was a year of repeating the sound “ooh” every night before bed until i said it the right way, and most of the time i didn’t.

 

Repetition is huge with Autism. Actions, words, sounds, motions which can involve a toy, their body, an object, a person. These action are repeated over and over again. For instance, Chris likes to run up and down a room, when he’s happy and repeatedly flapping their arms, shake his head or make certain sounds. I’ve mentioned before how he likes to play with whipped cream and white flat-beans for hours; its the sounds, the feeling, the safety of repetition that draws him in; these activities are known as self-stimulation or “stimming.”

By their first 12 months a toddler will interact with people around them, by looking people in the eye, copying words or simple gestures like clapping and waving. You would expect to play peek-a-boo with them or interest them in playmobil toys; me and Chris played hide and seek sometimes, but it was mostly the case of me hiding and him finding me, or not knowing what had happened and getting on with a game by himself. We played peek-a-boo but he mostly looked at me like i was insane, there were times when he enjoyed it though. That’s another thing about Autism, they might close themselves off and then there’s this moment where you get to glimpse into their world, or they give you a look, a smile they have never given you before, and its beautiful.

Each person with ASD has a different set of social and communication skills; some speak, some don’t, some can but only some words, some can but cannot pronounce letters, some can write essays, some go to university. Don’t assume that Autism doesn’t speak, don’t assume that Autism doesn’t want friends, don’t assume that Autism doesn’t like handshakes.

People with ASD might have odd sleeping habits. They also might have moods swings or unpredictable emotional reactions. For instance, they might laugh or cry at unusual times or show no emotional response at times you would expect one. In addition, they might not be afraid of dangerous things, and they could be fearful of harmless objects or events.

Remember that Autism is a spectrum disorder, a child, or adult, will not have all the symptoms, or they might. That’s the thing about Autism, it keeps you on your feet; for the rest of your life.

Don’t be scared, don’t sweep it under the carpet.

Learn about it, educate yourself about Autism – get it diagnosed.

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Befriending Autism

I’ll go back to the flexible routine series of posts. I wanted to take the opportunity to write about this since in the previous post (Making Routine Flexible d) Chris & his Dad routine) I talked about the playground and kids or parents making an effort. Like I’ve said before: “It doesn’t scare me that he probably won’t have a friend. I know that if he wanted one, he would get himself one. He would want to go play with them – like he does sometimes – he would want to watch movies with them, or engage in their activities – like he does when he wants to. It doesn’t scare me because he’s happy doing solitary things, and he’s happy doing group things – when he wants to.” (Autism Every Day Part 2)

But here’s a few things you should know when befriending someone with Autism or with your existing autistic friends, or some knowledge you could pass down to your kids:

1) Don’t assume they don’t understand friendship: I have explained the communication challenges and their trouble with social interactions. But, again and again, that doesn’t apply to everyone with Autism. Some people with autism are exceedingly social, while others are significantly more introverted. Friendship can be defined in many different ways and at it’s core it’s based on mutual interest and respect, shared values and negotiated boundaries. Especially in the earlier years, you just want someone to play with.

2) Be patient. Don’t try to change them into someone you, or society, consider acceptable. They are who they are, and you cannot make them conform to silly, unrealistic societal ideals. Maybe they’ll drive you to change yourself, which means you will be more open-minded, more patient, kind and accepting – now what’s so bad about that? Don’t feel embarrassed by their individuality, embrace it. Feel embarrassed for the people who don’t have the capacity, or knowledge to understand them.

3) Communicate clearly. Use gestures, pictures and facial expressions, don’t expect an immediate response – give your friend extra time. For your kids, try to introduce technical games when with an autistic friend; puzzles, legos usually do the trick.

4) Schedule your plans. Make sure to include that someone with autism, because they might not know how to ask. Include your children in programs where they are paired with autistic kids and set up dinner or movie nights. This doesn’t just benefit the kid with autism, so don’t look at it as doing someone a favour. Your child will learn responsibility, it will learn that being different isn’t bad, they won’t grow up narrow- minded, they’ll be educated about it, they’ll gain skills that will help them develop later on in their lives, socially and personally.  Discrimination isn’t born folks, it’s taught. Once they learn, from a young age to interact, they can then interact outside those structured times. Real friendships are someone to sit with at lunch and a friend in gym class, as long as they are not seen as outcasts in school, they won’t get bullied.

5) Respect their uniqueness. People with autism are often unusually sensitive to sounds, sights, touch, taste and smells. High-pitched sounds like fire alarms may be painful, scratchy fabrics intolerable. Respect how they react to such disturbances.  Don’t assume people with autism are intellectually disabled just because they can’t speak properly or flap their hands when they get anxious. Learn to understand these queues and help them through it.

6) Having an autistic friend is not a project, it’s not community service. If you see it that way, or pass it on to your children in that manner – don’t bother. It’s not a charity; they definitely don’t need your pity. Also, don’t ‘look past the autism’ as autism is integral to who they are. Their identity is shaped by it whether we like it or not. You can’t look past it because there won’t be anything to look at, don’t compare theirs to your experiences because there’s no comparison; much like two people who aren’t autistic and two people who are. Look at your friendship with an autistic person is a positive, healthy experience, as opposed to a charity project. Change your perceptions of the person based on widespread stereotypes of autism or other disabilities.

7) Stand up for them!!! Bullying, abuse and other types of violence are prevalent in the lives of autistic people – from childhood AND adulthood. If you see someone teasing or picking on an autistic peer, take a stand. You’d be surprised at how many people remain passive to bullying. I personally judge people by their inactions rather than their actions. Remove the stigma that society instils in autism.

Educate yourself and your children about autism, embrace it and make it part of your life. Be aware of it and make the world a place where your child can make a difference. A place where our children can make a difference. Learn about autism and remove the stereotypes of society to make the worldwide community a place where everyone is accepted.