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Sisters

I read a story yesterday about an autism sister who was in a glass box for 50 hours to raise awareness for autism.

 Meg Jones, 21, has a brother on the spectrum – he has Aspergers. She stayed in a 3x2m glass box for fifty hours and raised over £3,000 for charity during the challenge. She set this up at Dundee’s Tesco Riverside store as a metaphor for the isolation those with autism can face. Regular shoppers used post-its to leave her messages of support. “It was difficult trying to speak to people on the other side of the box, I wasn’t hearing what people were saying. A lot of families that have a child with autism have said that getting funny looks when they’re out and about is something that they have to deal with on a day-to-day basis. So, there were a lot of people walking past and just looking at me like, ‘what on earth is she doing in a glass box?'” 

During the last couple of years I’ve met sisters from all over the world. There’s an unspoken bond between us because we live the same lives in different cities, with different people; we had the same childhood yet we have never met. We find inspiration in random places and we build our lives around our siblings. We are sometimes the Others. All these women are strong, motivated and kind; they go above and beyond every day and they do it with grace and candour. They are an inspiration to me.

Chantale, an ambassador for Autism Canada who also took time to help with #Project324, released a song for her two younger siblings, Mike and Kevin who are on the autism spectrum, in 2014. Her lyrics speak to me, as i imagine they do to all siblings, in a way that can’t be described.

I follow a page on facebook called “Autism Through a Sister’s Eyes” which is written by Shaina and follows the journey of her amazing brother Josh, who is on the spectrum. Josh is funny and smart and his stories make me me smile, Josh is so much more than his autism.

Erin wrote to me a year ago telling me about her younger brother with autism and how she was in college getting her diploma and on her way to becoming a Developmental Services Worker.

Liana talked to me about how she believed that everything she is was because of her little brother, Petros. She studied speech therapy.

Michelle studied Cognitive Science Studies because she wants to “show the world true autism and what it can create ❤ “.

I’ve had the opportunity to meet so many beautiful souls through sharing our stories – and the sisters I meet are like sisters I’ve had all my life; it’s a bond we have no words for.

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#Project324: The Beginning

Its been 3 weeks since Chris turned 18. For his 18th birthday Christos received over 200 wishes from people all over the world on facebook posts, blog comments, private messages and emails.

His story was published in 4 different countries, shared over 100 times and read by more than 5,000 people (ant1wo, omonoianews.com, Ambitious About Autism, Vantage Magazine, International UN day).

#Project324 was distributed in 18 countries (the Wales cards were split between Wales and Australia). From these 18 countries, we got responses to cards from Sri Lanka, Wales, Ireland, England, the USA, Iraq, Switzerland, Kenya, France, Greece and Cyprus. People from 11 out of the 18 countries found one of the cards I cut by hand, visited the blog and took the time to send us a message for Christos’ birthday.  map

Christos got postcards from Switzerland, ecards from the UK, a t-rex from Brussels and a beautiful video from Kenya (which I still watch every single day). People helping with the project, and people responding to this project went above and beyond to make sure that my brother got a birthday wish. The messages, love and support we got throughout the 3 months #Project324 ran were overwhelming.

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#Project324 is the beginning.

The project isn’t over – #Project324 is for the rest of our lives.

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#Project324 Trump, Republicans and Disabilities, oh my.

It’s been a bad day.

  1. It’s the last day of my brother being 17. From tomorrow he will be an adult.
  2. It’s the end of #Project324.
  3. Christos woke me up today at 730am.
  4. It’s raining when it’s supposed to be 30 degrees.
  5. And Donald Trump is very likely to be the Republican nomination for the US elections.

The scariest part is that, now, not even a cataclysm could stop him. We have been living in the perfect storm for a year now and through it Trump has risen. What have we done to stop him? Jokes, dinner conversations and brushing off any chance that he may be the next president of the United States. You may be wondering – what do we care? We are all the way across the pond. A person like Donald Trump paying his way to becoming a president is something humankind should be ashamed of. A man who preaches sordid, morally repugnant, racist, sexist comments. A man who fat-shames women, used menstruation as an insult, has threatened to build a wall between the USA and Mexico and has suggested banning all Arab descendants from the country he intends to lead; this man is presumably in the forefront of a presidential election. A man who mocked a New York Times reporter, Serge Kovaleski, who has a chronic condition called arthrogryposis which affects the movement of his arms.

What does this mean for the future of our community? If a racist, megalomaniac, narcissist, who started life off with a ‘loan’ of 1 million dollars is in charge of one of the most powerful states in the world? It means that he will be in a position where he can exert his outdated and unintellectual ideas onto the international community. He will be part of international summits, he can make strategic movements which can affect international relations, peace treaties, warzones and he can look at refugees in the face and tell them they are not welcome in America. This is not a world i want my brother to be an adult in.

Leaving aside the real side of the devastation a Trump rule would bring, lets look at the ethical consequences. Where a corrupt man like Donald Trump is allowed to take over the most powerful seat in a country – how can we ever expect to live in a world where equality, diversity and respect for each different human are upheld? What will stop every other racist moron to run for president? What role models will the next generation be inheriting?

There is no time like the present to make a stand. Go out and vote, fundraise for refugees, volunteer at a homeless shelter, learn about disabilities. Read about current issues and get involved. Make changes, make a difference, leave your mark on the world. Don’t let our kids, your kids, all the kids grow up in a war ridden world, where refugees are treated like anything less than humans.

Don’t let our legacy be a Trump.

If you need your faith in humanity restored, here are some messages we got for Christos’ birthday.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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#Project324 Helping exceptional children live exceptional lives

leka-features.pngYesterday, 3rd May, a smart toy called Leka was released on Indiegogo. Leka is a super cute, robotic smart toy which was designed to change the way children with developmental disorders learn, play and progress. It’s not meant to replace therapy, it’s meant for enabling therapies; sensory and speech among others. Leka is a Bluetooth-enabled interactive toy and has been scientifically tested over the past two years in France and the US.

Leka has many functions, including games that build motor, cognitive, and emotional skills. “As robots have the ability to be predictable in their actions—an important trait for children with developmental disorders—Leka is able to give users a sense of safety. Coupled with this predictability and Leka’s capability to stimulate a child’s senses, Leka can socially engage children and nurture greater, more efficient progress.

Indiegogo campaign offers it at a low price point, $390.

Leka is a unique technology because, unlike computer based games, it will collect information that can contribute to a fuller understanding of Autism. We will have affordable, interactive technology which has been especially designed for autism, which will also give us personalised data from each individual user. Leka will record how children handle the device, how much time they spend on the activities, and how quickly they react.

#Project324 is receiving lots of love from Turkey, Wales, Switzerland, Kenya, America and Iraq. The project is nearly coming to an end. A Disney end.

Wales

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Turkey

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#Project324 Wishes from Kenya

I wanted to share a video with you today that I got from Kenya.

Usmaan was helping me reach people in Kenya as part of #Project324. His enthusiasm was contagious and in less than 3 days we got 20 ‘happy birthday’ messages and over 300 views only from Kenya. Today, he sent me a video. Nothing could have prepared me for the content.

I was people, we had never met, wishing Christos a happy birthday; calling him magic. Watch it here.

I’ve watched it about 5 times now and every time *tears*. Christos was playing on his game boy next to me when I watched it for the first time and he heard his name. He pointed to the screen as if to ask if the people were talking about him and I said they were. He watched the whole thing – which he doesn’t usually do. He knew it was about him, and even though he cannot understand your words he knew you were wishing him a happy birthday.

These people, these voices, this is what #Project324 is about. The beauty in humanity, the benevolence, the magnanimity that the collective can exhume when it is needed. I love it. My family loves it. My brother loves it. In turn we love all of you.

From the bottom of my heart – thank you.

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#Project324 The Good, the Bad and the Ugly

The desired outcome of awareness is for people who are not on the spectrum to understand and facilitate – or just allow – the growth and development of people on the spectrum. However, to allow for the good to take place in a way that is beneficial and advantageous for all, we must be aware of the bad and ugly as well.

The Good: One story which exhibits the good in Autism Awareness

It’s called the Nesel Pack and it was created by six University of Minnesota students. Their inspiration came from seeing fellow students with autism and other learning disabilities, and so they thought to create something as simple as a backpack.

The Nesel Pack features straps that mimic a person hugging, pouches for electronics and weights. The backpack includes clips for any sensory tools a person on the spectrum might need  and a slot for a name card. The team designed the backpack for students with autism, and they interviewed more than 100 parents to get it as right as they could. The trial back packs were trialed by 10 students on the spectrum, they got feedback and they are preparing additional trials.

The Bad: One story which brings to light the dark side 

The monster inside my son: Tells the story of Andrew, who has autism. His parent describes how he has evolved from a “sweet, dreamy boy to something like a golem: bitter, rampaging, full of rage. It happened no matter how fiercely I loved him or how many therapies I employed.”  It is heartbreaking to read about how Andrew hated school, a transition programme, because he was ‘downgraded’ from completing pre-calculus classes to being taught how to make correct change. He couldn’t follow through with two jobs, private job coach described him as ‘challenging’ and therefore the transition programme was their only viable option. One morning, Ann says, “my son picked me up and threw me across the room.” Andrew decked his elderly tutor, knocking her onto a concrete sidewalk and breaking her hand, he attacked staff members at the group home, and his 14-year-old sister.

I advocate for Autism to be accepted in all shapes and forms; to make it the exceptional exception; and to eliminate ignorance. Yet, there are no illusions of innocence here. I know Autism can be violent – I have seen in in my brother, i have seen it in kids that my brother went to school with and I have read countless stories that investigate the causes. Christos still hurts us when he doesn’t get his way – last August he squeezed my hands so hard that they were swollen for 2 days. He has attacked his teaches numerous times, leaving them with bleeding scratch marks and bruises. He hits us when he is frustrated, often ignoring our efforts to tell him how much he is hurting us.

There are so many stories of people on the spectrum attacking their family members. Autism can be violent, but being neurotypical can be violent as well. We should focus more on making treatment accessible, and funding better research on Autism rather that clinging on violent accounts of autistic children and adults.

The ugly: One ending to 3 stories and the ugly truth 

Jude Mirra, was a high profile case last year. Jude’s mother fed him prescription drugs and killed him in a hotel room in New York. She has been sentenced to 18 years in prison. Gigi said “Well one morning you wake up and the child is gone. It’s like they’ve been kidnapped and when your child is kidnapped you’re forever looking for them and wondering where they are and you can’t mourn“, describing what autism felt like to her. She killed Jude to ‘save’ him from his abusive biological father who had threatened them.

London McCabe was thrown off a bridge by his mother. McCabe had been planning the murder for months, searching for tips online and researching a defense of insanity. “You said I was an obligation and London was a burden” Jillian wrote in a letter to her husband.

Katherine McCarron was suffocated with a plastic bag after her mother failed to suffocate her with pillows three days earlier. In court she described her overwhelming guilt, she felt responsible for Katie’s autism because she allowed the child to get vaccinated. “Maybe I could fix her this way, and in heaven she would be complete“.

What kind of world do we live in where parents can be made to feel so worthless, so alone, so ignored by authorities, the State and their peers that they are made to believe that death is their, and their child’s, only option? The ugly stories are the stories I look for – the ones that make reality so fearful, so scary to live. This is what drives us, my family, my autistic community to get out and talk about Autism.

If we want full awareness – we want all stories to be heard. To create, to multiply good stories we are inspired by the bad, the ugly; the stories that haunt us. We are driven by the need to ENSURE that our kids grow up in a world where bad and ugly stories are in the past.

We have to help make therapies accessible. We have to make information on Autism readily available. We need to make carer support compulsory. We have to make sure that no one will be left behind.

This week #Project324 received lots of birthday messages and love from Kenya and Iraq. The last cards were distributed in Turkey, Cyprus, the UK.

In Istanbul cards were circulated at:

Besiktas-Kadikoy Ferry & Port

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Kadikoy Starbucks

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Lemur Store 

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Walters Coffee 

Walters Coffee (pretty famous), Moda, Istanbul

 

 

 

Asina Cafe

Asina Café Mutfak, Moda, Istanbul

 

 

 

Wales and Dubai cards made an appearance on a couple of cars

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#Project324 – Exception or Exceptional?

I find it really difficult to explain if awareness means making Autism the exception – which would include special learning methods, special units, training, etc; or if it means accepting that Autism is exceptional – and whether exceptional means rare/uncommon, or inspirational/remarkable.

Exception:

Making Autism the exception would include all the initiatives I have seen come into place these last few years. For example, Microsoft, Apple, BBC, Light it Up Blue, #EmployAutism, First Repondent training, police training, teacher training and the Israeli army which uses autistic volunteers to interpret complex satellite images. These organisations have put in place procedures, other than their usual, to accommodate individuals on the spectrum. Their training is tweaked to provide for sensory overload/deprivation, social abilities and employability. Is this the answer? Will awareness make Autism the exception? And if it does, will that force our global community to become more inclusive?

Will being the exception finally give Autism it’s place in our society?

It feels like a really roundabout and oxymoron-ish (yes, i made that up) way to make equality and inclusivity a reality.

So, a couple of new initiatives that have taken place this week – which make Autism the exception are:

  1. The Asda “Quiet Hour”: The Manchester branch is pioneering a ‘quiet hour’ in aid of autistic shoppers.The Asda Living store in Cheetham Hill is aiming at the people on the spectrum who have sensory sensitivity and will experience a sensory overload when in big crowds, noise, lighting etc. This is what Chris use to go through when he was little, and still does sometimes. The plan is for the store to open one hour earlier in the mornings to allow people who suffer from sensory overload to come in. This hour will lack electronic distractions, such as escalators, music and display TVs, and the public address system will not be used for announcements. Simon Lea, the manager, started thinking and brainstorming with colleagues and customers after he saw one of his customers, a boy with Autism, struggling to cope in the store.“If we can make a few small changes to give these customers a better shopping experience and make them comfortable then I know the store will be a better place to shop for everyone.”The store will open its doors to ‘quiet time’ on Saturday 7 May at 8am, the day after Chris’ birthday. And I KNOW that they aren’t doing this for Chris – but it kind of feels like they are. It kind of feels like we have had an impact, we have been a part of the wave of change which brought on this beautiful idea. That small boy in Asda has inspired an exception which will make a massive difference for the autistic community of Cheetham Hill, Manchester, and hopefully all the UK Asda branches.  Because of that little boy, the store manager asked, learned more about Autism and put together a plan to include people on the spectrum. That’s how awareness works, like an infection, like the plague. The Autism Awareness plague.
  2. Autism Puzzles, a Cardiff-based charity, trained a group of Cardiff Airport staff on how to better respond to the additional challenges faced by those living with autism, related conditions and their families. I mean, if you think bed time is difficult, travelling with Chris was torture when he was younger. Cardiff Airport is now equipped to offer support to the people that fall under the Autism exception. Kind of like wheelchair access, but for Autism; and what a wonderful thing wheelchair access is! I get furious when a building is not wheelchair accessible, now we can start getting mad at buildings that aren’t Autism accessible.

    The airport staff even hosted an open day on the first floor of the main airport terminal to promote Autism Awareness Month and to offer advice to staff and passengers regarding the condition.

    We appreciate that some aspects of the airport experience can be daunting for those living with autism and related conditions, so we are dedicated to continuing our partnership with Autism Puzzles and delivering the highest levels of customer service” Debra Barber, managing director and chief operating officer.

  3. On Thursday 28th April (this Thursday) the House Of Commons will host a three-hour debate about Autism. The debate is a motion on World Autism Week (which ended on 8 April). It cites “a lack of understanding of the needs of autistic people and their families”, and calls on the government to “improve diagnosis waiting time”. You can watch it or read the transcript here – no excuse for not knowing where to look! The debate will call for “a public awareness campaign so that people can make the changes that will help the UK become autism-friendly”.

Exceptional:

Accepting that Autism is exceptional needs further definition. If we view exceptional as meaning uncommon, rare, weird then we fall under the exception bracket of awareness. Accepting Autism as being remarkable/inspiring is the meaning I am going for here.

This sort of awareness requires a very broad kind of thinking, it needs you to bulldoze all your established conceptions of Autism. This kind of awareness comes from inspirational people committing inspirational acts in the name of Autism. The kind of acts that touch your heart instead of your brain. The ones that speak to your soul, your humanity, and draw your body to get out there and help, not the ones that make you brainstorm in order to develop plans and initiatives. The irrational rather than the rational, if you like.

Making Autism exceptional is only achievable through the telling of personal experiences. Only through the eyes and words of people who have been inspired by Autism can inspiration be spread.

  1. Castle Newnham pupils have made 1,000 paper cranes to raise money for a sensory room at their primary school, as part of Autism Awareness Week.Ancient Japanese legend tells of Gods granting a wish to anyone who folds a thousand origami cranes. Does it make sense? No. Does it touch your soul? Yes. Does it make you want to take up origami? Uh maybe. Does it make Autism exceptional? YES.
  2. On Sunday, the BBC ran a story about a father running the marathon for his son, Dylan, and in support of the National Autism Society. Jon Barbuti’s words are very similar to my own and he did this so that “Next time you see a kid have a meltdown you might see it differently, when a random kid grabs your arm to ask you if you know what Minecraft is you might see it just as their way of trying to engage in conversation.” Jon made Autism inspirational.
  3. You may have seen the, now gone viral, video of a boy with autism crying at a Coldplay concert because they are his favourite band. If you haven’t – you have to. Autism can feel, it can love, it can cry and it can laugh – and this video will make you feel all the things.

There are so many inspirational stories I could share with you that make Autism exceptional. The point of this week though is that we can make Autism a topic by making it an exception and by making it exceptional, it’s not a question of either/or – because Autism is both an exception and exceptional. I think the worst outcome would be if we made it either/or. Autism doesn’t need your pity or fear; it needs you to learn and adapt. It wants you to be inspired.

Autism doesn’t need an attitude of exceptions – it needs acceptance of the exceptional.

The struggle for awareness has reached a critical point. The point where we now know we can make a difference and have come a long way but, still have light years to get to where we want to be.

Happy Week 10! Here are some pics 🙂

England:

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Paris:

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Wales:

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