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The world of Silver Linings

There’s two worlds in this world: 1) the world we live in and 2) the world of silver linings.

This world:

I have been reading a lot of articles lately about how the world seems to forget that kids with autism grow up to become adults with autism. And I get it; as an autism family/community we often feel neglected and helpless. When the kids get diagnosed the first thing you hear is “Sorry, we don’t know what causes it” or “There is no cure“. We grow up in a community in which we have to shield ourselves and our family members from criticism and discrimination. It’s not a great way to start life off. Feeling helpless is an everyday thing for families with autism, every minute of every day we are helpless. The comparison to other children, other families doesn’t help the helplessness; it reinforces it. Having a child diagnosed with autism is pressure, having that child grow into an adult with autism is terrifying. I’ve talked a lot of the stigma that follows us when we walk around as an autism family – well, now I’m thinking about the expectations society has of adults. Terrifying.

In 2012, the National Autistic Society (NAS) conducted a survey on the conditions under which adults with autism have to work. It found that 43% of respondents said they have left or lost a job because of their condition. Only 19% said they had no experience of bullying, unfairness or lack of support at work. The NAS’ survey found that only 10% have employment support, despite 53% saying they would like it. In addition, 32% said the support or adjustments made by their employer/manager in relation to their autism are poor. Colleagues were not much better, with 30% of respondents saying the support or adjustments made by them in relation to their autism is poor. I can’t even.

Silver Linings:

Silver Linings is a world we have created. In my head, it has very high ceilings and no stairs, or chairs or anything you can climb on. The silver linings are like balloons that deflate just a tiny bit every time progress is made. You go to silver linings when you are scared, because its a place of hope. It’s a place where fears and insecurities can be calmed because there are so may prospects and wonderful works in progress. So, we go to Silver Linings to watch for any balloons we can reach and move to our world.

  1. Autism Initiatives was featured in the Derry Journal in February because they are changing the lives of local adults living with autism. They are being funded by the Housing Executive, through its Supporting People Programme and helping autistic adults with skills and tasks such as housing issues, cooking, cleaning, money management, paying bills and contacting authorities. The support is provided by a small team of Floating Housing Support Workers, with Margaret McLean and Alicia Munoz Herrero based in Derry, and their colleague Patricia Irwin based in Omagh.
  2. On the 30th May, Ford joined the growing list of companies who are launching initiatives to include adults with autism into the workplace. Ford Motor Co. will create five positions in product development suited to the skills and capabilities of workers with autism for the program, called FordInclusiveWorks. Ford’s vehicle evaluation and verification test lab will allow the adults included in the programme to log and prep tires for test vehicles. “The work is highly structured, requires a great deal of focus, and calls for a high level of attention to detail and organization. Skills required to complete this task safely and with a high level of quality lend themselves to strengths typically associated with individuals with autism.” Ford will evaluate the performance of the five new employees after an undetermined time and potentially offer permanent full-time employment.
  3. The Abilities Centre in Whitby has put in place the Worktopia programme which offers free help to participants in developing skills necessary for finding employment. EmploymentWorks is one of three new Worktopia programs that focuses on improving the employment futures of adults with ASD. Programme co-ordinator Cathleen Edwards says “Ninety-five per cent of the general population can find a job. When you go to the population of people with disabilities, it goes down to maybe about 65-70 per cent. When it comes to people on the spectrum, it goes down to probably about five or six per cent, or 10 per cent.
  4. This month Glendale Community College is launching a unique programme to train highly functioning adults with autism to operate computer-numerical-control machines; their aim is to equip them with experience and knowledge for work as machinist apprentices or computer numerical control operators and programmers. The upcoming training is the result of the college’s new partnership with the Uniquely Abled Academy, which is part of the Uniquely Abled Project, based in Valley Village. So, on the 20th June the students will get taught by instructors for 300 hours – this will include lab time and soft skills, such as interviewing and CV building. The criteria to enrol include the ability to function independently in social and academic settings, demonstrate a competence in basic math, reading and computers, students must also be at least 18 years old and have earned a high school diploma or GED. Ivan Rosenburg said “Hopefully, we’re starting a revolution.

The revolution has already started; you can find it in every initiative, in every diagnosis and it gains a tiny bit of momentum every time you hear or talk about autism. We are so lucky to be a part of this generation. We get to see the labour of all the revolutions before us bear fruit. We are empowered by the rigorous upholding of our civil liberties and human rights to move forward and launch a new age in the autism sphere. We get to break the sphere and move beyond it.

We get to fly over to Silver Linings pick up the ones we can reach and make them part of our world – and that’s when the world we live in stops being terrifying.1

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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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