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Happy Birthday – 2020 Edition

Dear brother

You turn 22 years old tomorrow and this year you are celebrating in the midst of a pandemic. Another memorable celebration with all your loved ones awaits tomorrow; a Mickey mouse cake, your favourite food, and all the things you told mum you wanted for your birthday weeks ago. What an amazing life you have lived so far and how many experiences you have grown through.

You mesmerise me with your brain, your intelligence and how you keep surprising us all every day. Like how you know dad hides the laundry you ask him to wash every day and you have to remind him to take it out of hiding when he’s packing your things, or how you take care of mum when she needs it the most. People might think we can outsmart you but, damn boy, you put us all to shame with your perception and keep us on our toes.

You make me laugh out loud when you say you don’t want to go for a walk because you’re cold, but its 30 degrees outside and you’re sat in an air-conditioned room. Or when you start laughing just to turn our frowns upside down. You keep our family sane and safe, reminding them to wash up, bring in the clothes when it starts to rain, drink their tea before it gets cold and making them all smile with your wit. Thank you for taking care of them.

I live off the seconds I get to see you on video chat to hear you shouting at me to hang up the phone. That’s all I get and that’s okay. I am so proud of you and I can’t wait to see you again, grab your chin and force you to kiss me 10 times.

Happy birthday my little brother, I more than love you, more than miss you.

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FYI: If you want to help our cause during the Covid-19 pandemic, I am selling off my paintings to raise money for SMILE School in Famagusta, Cyprus. SMILE, like all schools, has been closed due to Covid-19 and our boys are being home-schooled, it’s easier for some more than others. It’s distressing for us to stay at home, but even more when you rely on that sense of routine and repetition to get through the day. When parents have to divide their time to further the education of all their children, neurotypical or not, as well as keeping the peace, maintaining the household etc. Your donation can help with getting supplies to educate our boys in art, math, cooking, baking, to entertain them with music, films etc or to help with paying rent or utilities so that the boys have somewhere to return to when all this is over.
Read more about SMILE on the blog and pick a painting you like. Make us an offer! These are difficult times, so I won’t price them. It’s up to you to bid and, once confirmed, donate directly to the school. 

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Stories that defy lockdown

It’s nearly the end of Week 4 on lockdown and I’m finding it helpful to read other people’s experiences. It kind of normalises the situation a bit, knowing that others think what I think and finding inspiration in [extra]ordinary humans.

If you are feeling it this week, here are some inspirational stories I found that may brighten your day, give you a different perspective or inspire you to help others.

Autism champion shares his tips for young people coping with coronavirus lockdown: “One of the symptoms of autism is that you don’t like change in your routine,” he said. It’s a massive culture change for somebody with autism, its like my life has gone on pause. But Richie wants to help other children and young people with autism who may be struggling too.”

How to help your autistic child cope with coronavirus lockdown

Autism assistance dogs trained in Banbury are a vital lifeline to families during coronavirus lockdown: “Dogs for Good provide these amazing and highly-trained animals to 50 families who have children with autism and many people with a disability or illness. And the charity is doing its best to support those who need them despite the significant challenges of the last few weeks.”

How to support autistic children and adults during coronavirus pandemic

I 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. 

So, read more about SMILE on the blog and pick a painting you like – info below. Make us an offer! These are difficult times, so I won’t price them. It’s up to you to bid and, once confirmed, donate directly to the school http://www.autismsupportfamagusta.com/.

I will post the painting to you on the weekend after you order it.

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Acrylic on canvas, 35x28cm because I love elephants and Christos loves the sea.

 

 

 

 

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Deer – acrylic on canvas – 51.40.5 cm

I love blue. Maybe this is why?

 

 

 

 

 

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Regal – Acrylic on canvas – 50×39.5cm

A clear blue sky here featuring a beautiful woman, a powerful pose and a regal bird.

 

 

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In progress – Acrylic on canvas 65×89.5cm

This is my interpretation of Kilmt’s Expectation. Klimt has been my surrealist guide and I draw inspiration from his love for women and nature. Here, instead of expectation, she strikes another power pose and opens herself up.

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My hopes for you and me

My 20s were full of love, laughter, crying, drama, fights, loses, wins, deal breakers, trips, transitions, degrees, decisions, heartbreaks, booze, dreams and so much more. Sometimes I wonder what your 20 would have been like if you were neurotypical. I wonder if we would still be a family, how close we would be and if I82233631_2531887710466115_4314041005243367424_n would worry about you. Would we hang out? Send cards? Meet on special occasions? Would our lives depend on each others?

Probably no. But for better or for worse, our lives are intertwined. We are close, I worry about you, we hang out, send cards and meet on special occasions. All these banal things take a completely different meaning but that meaning is ours – yours and mine.

To be honest, I am nowhere near where I thought I would be at 30 but I know where I’m going. I know where home is. I can make plans and dream big – I’m doing better. I spent my 20s chasing goals and worrying that I didn’t belong to one place or have a home but I’ve realised that anywhere with people is home – I have so many homes and that’s okay. You taught me that. In the last decade you have moved to 7 different homes, changed 3 schools and you were okay.

In my 30s I have all I need and maybe that was the gold I was so desperate to find – not earning enough to support us both or having a high-stakes powerhouse job but being a powerhouse and strong enough to be okay with not being okay, being irresponsible to learn responsibility, being broken to become resourceful and being miserable to appreciating happiness.

My hopes for you are that you are happy where you are, with the people you are with. I hope that when you look at yourself you love you, and that when you don’t you can lean back into our love for you. I hope you continue living your life knowing that there are people around you who know you and can represent you and keep you safe. In return, I promise to be safe so that you always have a voice. I promise to live the life I have at this home away from you and always come home to you – for all the decades in my life and yours and beyond.

Thank you to everyone who has donated to Autism Support Famagusta over the last few weeks. I am aware of some tech issues but even if you were not able to donate, your intentions mean that you can out there instead and spread what you’ve learned like a kind of autism awareness plague.

To donate: http://www.autismsupportfamagusta.com/donate

Thank you.

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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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Then and now: 2010

I am saying goodbye to my 20s this year and to counteract the selfish need to reflect on the last decade I 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.

For more information: Smiling September

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

Hindsight is an incredible feeling isn’t it? I look back at who I was then and I can see clearly how I got to where I am. My last decade plays like a film in front of my eyes and at centre stage is Christos because there is nothing I am more proud of in life that to be his other half. To live up to his expectations every day, to earn and keep his trust, to walk beside him in life.

It wasn’t always my priority though. Even though he was the driving force behind my decision to move to the UK to study, my teens are a blur for the most part. See,  we all have ways of getting by and mine is that I block out parts of life/the past I don’t want to remember.

I was lost, looking for meaning, love, somewhere to belong and in a constant battle between the need to be selfish and take care of me and feeling guilty for not being selfless. But with the bad there was good and I’ll try to focus on those. Through all the family drama, heartbreak and late nights that consumed my 2010 there was light.

This picture is from Halloween 2010. Because, I don’t have any other pictures of me and my brother that year. It was a selfish year and but looking back, 10 years later, it had to be. There’s a part of my heart that will always be hollow with all the moments of Christo’s life I missed out on before he outgrew us all. But like any family unit, we have to take care of ourselves before we can take care of each other – we just didn’t know back then. Mum took him to a parade in Cyprus and he dressed as Woody from Toy Story, it was one of his favourite animation films. We watched it over and over and over, and knew all the words. I remember him asking to watch it and when Sid would come up he would hide. 

This year? We get to spend the entire day together in Sri Lanka, making memories and cementing our bond. The difference is that this is a selfless year. We have both overcome our individual obstacles and experiences that weighed us down – Christos has moved to a new school and is tackling issues bigger than him or us. He has paved the way for other families of kids and adults with autism to look forward to a future which doesn’t condemn them to sit on the sidelines of a society that doesn’t have money or time to invest in their abilities.

I’m not going to lie and say it’s been smooth sailing because we had a tough day yesterday. I travelled through 5 time zones in 3 days and it took its toll. The repetition of the routine and his need for everything to be the same is exhausting at the best of times. But today, we are both rested, we have a plan and we are back on track. 

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Am I ‘normal’?

normal
/ˈnɔːm(ə)l/
adjective

conforming to a standard; usual, typical, or expected.

Is brown hair typical? What about blonde, red, gray. Are blue eyes usual? What about hazel, green or black? Are beauty spots standard? What about big lips, small feet, pronunciation. How can we say something is ‘normal’ when there are dozens of different body types, languages, dialects? When we suffer from allergies, have different taste buds, handle spice and heat in varying degrees and are shy, confident, anxious or sad? When we all have different abilities in math, sports, languages and even memory. From hunters to taking over the planet, social constructs have been a powerful tool in our conquests as well as our taming and undoing. Social expectations led to competition, innovation, scientific discoveries, cures and architectural wonders. But social constructs of class and what is ‘normal’ or beautiful have also led to genocide, poverty , abuse, racism and inequality which riddle our history, stain our future and which are all anything but ‘normal’.

In just the last 100 years our world – our ‘normal’ – has changed over and over again. From the fall of the Romanovs to the fall of the Berlin Wall, the Wall Street Crash, nuclear weapons and the war on terror to Gandhi, Mandela, Malala and then Trump and Brexit. From the Great Depression to Twitter, apartheid to landing on the moon, Chernobyl, #metoo, loving whomever you love and to the world’s first genetically edited babies – what even is ‘normal’? How come we keep fighting for these ‘normal’ ideals, preach, exclude, bully and not provide for every human simply because they don’t tick the ‘normal’ box when you – reading this – cannot define what is ‘normal’?

atypical
/eɪˈtɪpɪk(ə)l,aˈtɪpɪk(ə)l/
adjective
not representative of a type, group, or class.
If ‘normal’ cannot be defined – Every single one of us is atypical. Which makes us all typical in being unique, different, special, unusual, unexpected, abnormal.
Let’s talk about all the ways we exclude our fellow humans in every day life – with filling forms, education, fashion, language and expectations. Let’s defy all the social impediments we have put in place to facilitate notions of ‘normal’ and create a new social world which helps every ability and every human.
That’s what we have done with the SMILE project. We saw a gap in a system which meant that the Cypriot government didn’t understand the needs of it’s people and doesn’t provide equal opportunities to the communities it is supposed to support. So, we defied the ‘conventional’, we shouted from the rooftops about our kid’s rights – regardless of autism – and we imagined and created a space for them.
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Celebrate your uniqueness, your neighbour’s quirks, listen to someone’s opinions which are not akin to your own. Learn about hair colours other than your own and embrace all the things that make us typically atypical. Help, allow and encourage everyone around you to be the version of themselves they already are and not the one they think they have to be.
Donating to Autism Support Famagusta supports the local autistic community directly – donate here.
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Fading into the background

A new study published here – Distinct Patterns of Neural Habituation and Generalization in Children and Adolescents With Autism With Low and High Sensory Overresponsivity – on pubmed.com explores how the brain can fade repetitive or familiar sounds in order to allow concentration in neurotypical persons and compares the workings of the same function in neurodiverse individuals.

For most of us, sensory stimuli such as noises or unusual textures trigger activity in the part of our brain which processes sensory information. The more we are exposed to this stimuli, the more our brain is able to recognise it as familiar and tamp or manage our response to it. This process, called habituation. It helps us tune out background noise/sensations so that we can pay attention and process new information. Let’s take a fan as an example – you hear it when it’s turned on at the start of the day, you feel it every time it turns towards you, but you don’t keep hearing that buzz or noticing the gust every second throughout the day, unless you choose to.

The article’s objective is to explore sensory overresponsivity (SOR), which is an atypical negative reaction to sensory stimuli prevalent in autism spectrum disorder. The study monitored responses in three stages of sensory processing:  initial response, habituation (i.e., change in response over time), and generalisation of response to new but familiar stimuli.

The new study, by lead investigator Shulamite Green  (assistant clinical professor of psychiatry and biobehavioral sciences at the University of California, Los Angeles), found that some autistic children don’t show signs of habituation. This means that their brain does not fade out the sound of a fan, the gust of wind, a stray hair that tickles their neck but their brain keeps trying to understand the stimuli over and over again – which is overwhelming and exhausting.

You can read the very interesting findings at length through the link above. The summary is:

  • The team studied brain responses to sensory stimuli in 42 children with autism and 27 non-autistic children, ages 8 to 18 years, who have average or above-average intelligence.
  • The autistic children into two groups: highly responsive to touch and sound and those less responsive. 
  • Each child’s brain was scanned while it experienced a series of stimuli, each lasting 15 seconds: white noise, a scratchy sponge rubbed along the left arm, and then both at once. The sequence looped six times.
  • The team monitored the regions of the brain which process sound and touch, and the amygdala, which filter sensory information.
  • During the first two rounds of repetition, all children showed increased brain activity. The group with the less responsive children had a noticeable brain activity drop during the third and fourth rounds and remained low for the fifth and sixth.
  • The brain activity of autistic children with high sensory reactivity veered towards high for all six repetition rounds.

The team also exposed the children to one more round of stimuli using similar sensations but with a slight difference in texture and frequency. The brain activity for the group with the low sensory reactivity indicated that they recognised the stimuli as new but also that they were similar enough to tune them out. Whereas, the other group had high brain activity which may indicate that their brains were processing the stimuli as completely separate and new. It was also interesting to read that some children with autism showed no brain response to the new stimuli at all. This may mean that they could not tell that the stimuli were new, or that their brains had faded the response to the original stimuli so much that they couldn’t activate in response to the new information.

Next time you see a child covering their ears, a parent frantically trying to to put their sock back on, a crying toddler in a busy train/bus/airplane – remember that what you see is never the whole story. Our bodies and minds are vast and beautiful and different. Instead of getting annoyed let your brain fade it out so you can focus on something else – because you have that ability and they may not. Your brain’s natural reaction will be to habituate not to stare or glare or offer unnecessary parenting advice – so pop your headphones in, look out the window or engage in another conversation instead of focusing on the distraction – because you have a choice, people with autism may not.

If you would like a taster of what sensory overload can be like Autism Speaks has 5 video simulations that help you experience sensory overload.

Don’t let kindness, understanding and love fade into the background. See it, appreciate it, teach it and use your capabilities for good.

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21 and Atypical: Happy Birthday Steph🍾🍰

Stephanos is 21 years old today!

19358841_10154713771921238_1693404057_oJust like his bestie, he won’t be preoccupied with this day. His birthday will serve as a reminder to his family of how far he has come and how many Steph milestones he has reached. A birthday is too typical to be atypical like our boys. Stephanos won’t get excited about presents, or friends coming over for a party. His phone won’t be beeping with Happy Birthday notifications and he won’t feel the social pressure we feel when we reach a certain age.

Stephanos doesn’t live to please social norms, or to meet society’s expectations 27752278_10155332857716238_3880961810554679579_nof what a 21 year old ‘should’ do. As his mother has so beautifully put it “He may not accomplish University, marriage, or having children like in a “ typical ” world but he has been totally loved and supported by family , friends, schooling and society. I am positive if he could speak he would confirm in a verbal manner how blessed he is on this subject. Autism is part of society nowadays and we all do our “ bit” to accept and embrace because after all we are just human. We have all learned that a “ typical” world isn’t always for everyone. Society has its beautiful exceptions and Stephanos is an example”.

Stephanos lives to break the ‘norms’, exceed expectations, inspire and pave the way to a new and more inclusive world. He was the inspiration for so many actions taken by his family that have shaped and given meaning to my life. He inspired our group, the special unit in Ayia Napa, the summer schools for children with autism in our area and eventually the SMILE project. In a world where everyone wants to be an individual, Stephanos is the most inspiring of them all. Because Stephanos has allowed so many others to be themselves, to be individuals and to be exceptions just by being himself.

Happy birthday Steph. Thank you for inspiring my family, for opening doors for us we never thought possible. Thank you for being my brother’s friend.

Stephanos’ birthday closes my 21 and Atypical series (although I will be referring back to it with updates from the boys). So join me in wishing him a very happy birthday.

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21 and Atypical: The SMILE Project

64582350_2087828768006568_1085529915794653184_oThe SMILE Project is a culmination of the fears, determination and strength of the autism families in the Famagusta area in Cyprus. It was born out of fear of what will happen to our adults with autism who require care. It was created with determination to establish a safe, educational space for our kids where the state has failed. It is opening today 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. Today, 19th June at 7:30pm in Paralimni, we open our doors to 3 young adults who pave the way to a better future for all adults with autism in Cyprus.

The Smile Project will be based in the Famagusta Area (Paralimni) and will provide day-care services for young autistic adults of 21 years old and over. 64912747_2382131665339646_8103174948933074944_nIn every autism family, there comes that dreaded time where you have to think of what’s next. Our families and Autism Support Famagusta powered through obstacles, lack of funding and the absence of support to imagine what would happen after State school comes to an end. We, the families, know that there is no provision or services with specialised staffing for young adults with autism in our area – so we needed to act.

The future of our children is a concern for all parents.
Who will take care of them?
Where will he/she live?
Will they be safe and have a quality of life when we are no longer here?

The SMILE project is a massive achievement and a stepping stone. The ultimate goal will be a 24-hour care centre with overnight stay but also a day care provision for adults on the autism spectrum. The centre will offer sensory sensitive activities tailored to each child, music therapy, speech therapy, arts and crafts etc.

Our children’s learning will not stop. We are working together towards the same goal which is to provide support to families with children on the autism spectrum.

As a group, we are blessed to have had the support of the Municipality of Ayia Napa, the Mayor, local councillors and staff every step of the way. We are hopeful and confident that other Municipalities in Cyprus will embrace and support us to pave the way to a brighter future for autism in our beautiful island.

So.. join us – all you have to do is smile.

If you want to help:

Donate here https://www.autismsupportfamagusta.com/donate-index-impact

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21 and Atypical: Steph’s Got Talent

You will remember that Stephanos loves the arts. Playing music, singing, drawing, painting, crafts etc. He uses his talent to express words and emotions in a different way – like a true artist!

Over the years, he has taken major steps in improving his skills through weekly lessons and “he will improve much more as he grows and has the potential for much more that what we give him credit for” his mum reminds us. He loves painting horses, having started with a basic drawing of the outline and then moved on to slowly adding the horse mane, the tail to eventually winning an Erasmus award for one of his paintings.

60342861_295902934633404_3523312190037688320_nA friend of the family was part of ESIPP and Erasmus: ESIPP stands for Equality and Social Inclusion Through Positive Parenting and aims to provide parents with accurate information, effective practical strategies and improving outcomes for individuals with autism and their families. Parental autism education has not been available everywhere in Europe and through the work undertaken and the findings in the project ESIPP has made key recommendations for policy makers. The ESIPP project was established to develop a locally appropriate Parent Education Programme (PEP) for families living with autism in three south-east European countries (Croatia, Cyprus and the North Macedonia). The project is led by the University of Northampton and includes eight other partner organisations from across Europe.

ESIPP asked for design submissions for the project logo. So the society rounded up about 15 paintings from the Famagusta area. The Autism Famagusta Support society runs a yearly summer school in Ayia Napa where the children who attend undertake a range of activities – and they always keep kids work. Stephanos was one of the first for Cyprus.

Nowadays, he has an art studio next to his home where he takes daily lessons and showcases his art. At School, Stephanos loves art class and creating things in woodworking lessons. While the equipment was usually left to be handled by the teachers, a couple of months ago Stephano’s mum was sent photos of his latest woodwork creations from school where he actually put together this wood placemat with hot glue alone.

Stephanos also paints most of the clay money boxes that we decorate and sell at events.

 

Currently, he is working on creating occasion cards as another way to promote Autism Support Famagusta, autism awareness and earn money from selling cards created with Stephano’s input. I’m already putting in my order so all you summer babies that I love so much will be getting a Steph card! While he doesn’t come up with the occasion designs all alone, he follows instructions and does all the drawing and colouring.

Every single one of you express yourselves in a different way – with emotions, physical strength, volume, writing, activism. Which means that, at the end of the day, the only thing we have in common is that we are all different.

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You can donate to our society here.