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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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April 2018: 2 new facts

  1. In 2007, the Qatar representative to the UN, Her Highness Sheikha Mozah bint Nasser Al Missned,  put forward a UN General Assembly resolution, to create World Autism Awareness Day. This gave way to today, a day dedicated to raising awareness about ASD across the world.
  2. Numbers published by the World Health Organisation show that approx 1 in 160 children are diagnosed with autism. That suggests that of the 7.2 billion people living on Earth, approx 45 million are diagnosed. Plus the lost generation and women that never received a diagnosis due to a variety of factors.

45 million! Autism is no longer a hidden disability.

Autism awareness is not confined to this day, or to this month. We fight for it every day to help educate people on how to better understand autistic people and lessen the stigma and discrimination that autistic people face in every day life. Awareness means that the community can identify and respect the autism spectrum. Awareness means that the financial burden families have to bear may be lessened with proper access to support and by making autism education and alternative therapies a mainstream issue.

Welcome to autism awareness month.

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Dog Treats, Ice Cube and Rutgers University for Autism

What is Silver Linings?

I go to Silver Linings to watch for any balloons we can reach and move to our world, and here are the ones I have been following in the last couple of months:

  1. Finley’s Barkery in Minnesota “embraces neurodiversity and empowers people to do what they love. 80-90% of adults with Autism and other developmental disabilities are unemployed or underemployed. Finley’s Barkery set out to change that statistic. By utilizing one’s unique strengths, our team takes pride in their roles from handcrafting the treats, to marketing and sales.”
  2. McDonald’s in Indianapolis: Leif, is 7 years old and has autism. His mum explains that “A classmate brought one of the toys to school and Leif saw it and spent the next two weeks hardly talking about anything else with us. He gets really fixated on things and creates stories around toys.” So, like any mum, they went to Mc Donalds and asked for the toy. Unfortunately, the toy had been sold out. *Enter Awareness*TaQualliyia, a 16-year-old employee, overheard that encounter spoke to her manager about the situation. With the manager’s approval, TaQualliyia spent 15 minutes dismantling the display behind the counter as Kandel and her family were eating lunch to get the toys for Leif. Read the story here.
  3. Results of a new study have revealed that brain scans might help predict autism in babies before symptoms appear. “We see an increased rate of growth in the outer surface of the brain, the folds, the sort of waviness of the surface that’s followed by an overgrowth of the brain in the second year,” says senior study author Joseph Piven, M.D., of the University of North Carolina-Chapel Hill. The overgrowth of the brain they observed coincided with autism-related behaviors that start to emerge when the child reaches their second year, the researchers said. Read the story here.
  4. Represent, a social merchandising and marketing platform that enables influencers to create and sell custom apparel, announced their collaboration with Ice Cube in launching a limited edition apparel campaign to benefit Autism Speaks. Ice Cube is very vocal about his autism family. “I’m proud to support the great work that Autism Speaks does, a cause that is so important to me,” said Ice Cube. “My goal through this campaign is to not only help raise awareness but to also support this great organization’s efforts in promoting solutions for the needs of individuals with autism and their families.
    Ice Cube’s design is available on a variety of products for men and women, starting at $24.99, available at Represent.com/IceCube.
  5. In Oklahoma: Children on the spectrum were able to practice their pre-flight skills and how to be an airline passenger through the Wings for Autism program. The free event, which was held Will Rogers World Airport for families, brought children from across the state to participate in the program and had a waiting list. Watch the video here. Wings for Autism will be held in Allentown, PA May 6, 2017, Fresno, CA May 13, 2017, Appleton, WI – May 13, 2017, Denver, CO – May 13, 2017.
  6. Special Books by Special Kids: Founder and teacher, Chris Ulmer, began Special Books by Special Kids (SBSK) to share the unique talents and incredible personalities of the students in his special education classroom.
    Special Books by Special Kids is leading a global acceptance movement that brings awareness to the joys, needs, and struggles of the special needs community and promotes the acceptance and celebration of neurodiverse individuals by all. You can watch a beautiful video of Jon teaching his classmates about planets here.
  7. Legoland Park, Florida: Since 2016, Legoland has been working with Autism Speaks to make its amusement parks more friendly for guests on the autism spectrum. The resort in Winter Haven, Florida, explained some of the features it has added since then including “quiet rooms” and a pass specifically for guests with autism who may have difficulty waiting in line in a press release. Disneyland Paris also offers this.
  8. Speaking of Disney, as always. Disney, in association with Amaze announced an Autism-Friendly Performance of Aladdin – The Musical will be staged in Melbourne. This special performance will be held at Her Majesty’s Theatre on 12th August, 1.30pm. Aladdin was one of our favourite Disney films growing up.
    You can watch the video here.
  9. Stem cells research: This is the story of Gracie. Gracie is 7 years old and was one of 25 children who took part in the first-of-its-kind study at Duke University in Durham, North Carolina. The study’s goal was to assess whether a transfusion of the children’s own umbilical cord blood containing rare stem cells could help treat their autism.
    The results? More than two-thirds of the children showed reported improvements. A larger second trial is underway, one its researchers hope will lead to long-term treatment for children with autism.
  10. Autism Involves Me: Cathy Lomond is the owner of Hotel Port Aux Basques in Port Aux Basques, Nfld. Cathy, working with Autism Involves Me, decided to create a space where those with autism disorder spectrum (ADS) can relax and enjoy their vacation. “The hotel has a lounge with a calming mural, a swing, a climbing wall and a sensory boat to create a comfortable environment for children with autism. There’s also a kids’ menu available with pictures of the food items, which can help foster independence for children who may have trouble speaking.”
  11. 9 million donation to open Britain’s first international autism centre: The money will be donated by Phones 4U billionaire John Caudwell.  The research and therapy centre will be based at Keele University and will cost £18 million. It will specialise in autism. “I have been deeply affected by the families I’ve met whose lives have been devastated by autism, and rebuilt thanks to the support of the charity. I am proud to support what is set to be a landmark development in the provision of services for the millions of people who are affected by autism on a daily basis.”The Caudwell International Children’s Centre (CICC) will include state-of-the-art assessment suites, a sensory garden to help children interact with nature, family training suites, training kitchens for cooking classes to encourage a healthy diet. It looks beautiful and it stand for something you cannot describe, only feel.
  12. Ambitious About Autism: The Ambitious College has opened its doors at Pears Campus at College of Haringey, Enfield and North East London and West London College. Ambitious College was created to give everyone the opportunity to lead a fulfilling, happy and rewarding life; and this includes young people with autism.“Our learners are at the heart of everything we do, their curriculum is highly personalised to help them achieve their goals.” Read more about it here. You know that I have worked with Ambitious on various different projects, therefore this College is very very close to my hear and I cannot wait to watch it succeed and become part of this amazing opportunity provided to the autism community.
  13. Have you stopped reading yet?
  14. Maryborough Correctional Centre: A pilot program in Queensland has had overwhelming success with inmates training special needs assistance dogs. Unexpected? Over 10 months, the prisoners taught the dogs complex tasks including wheelchair work, opening doors, picking up dropped items and turning on lights, all to prepare them for life with a special needs child. Smart Pups CEO, Patricia McAlister, said the pilot program had been very successful as the increasing demand for trained dogs was “huge” and outweighed the number of assistance dogs available.
  15. Rutgers Center for Adult Autism Services (RCAAS), based in Rutgers University, will “..feature a comprehensive program that is designed to support adults ages 21 to 60 with mild to moderate ASD through a wide range of services specifically tailored to meet their individual needs.” Will offer up to 60 adults with autism, and who live off campus, university jobs supported by clinical staff and graduate students. The second phase of the center will offer a pilot residential program for 20 adults with autism who will work on campus and live alongside Rutgers graduate students in an apartment-style residence.

I chose to end with Rutgers because this time last year we got emails from Rutgers University wishing Christo a happy birthday as part of #Project324. Avramis and Florentina were the 2 friends I asked to distribute the cards and so Rutgers because a familiar name during those months. I’ve copied some below because reading them makes me happy and I hope that reading them will prove to you that awareness is everything.

I hope that with all these new initiatives and stories circulating in the media, not a day will go past without you hearing the A word.

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