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21 and Atypical: Dancing with the Stars (aka Sisters)

Christina is Stephanos’ older sister and she shared this story with me earlier this week.

53423695_926770284324454_1836469629984178176_nWhen I was around 15 and Steph was 14 we used to listen to this song “I will survive” by  Gloria Gaynor and we used to just dance to it“. Christina is a year older than Stephanos and has loved dancing since forever. So , she decided to make up a choreography to the song and include Stephanos! Her many choreography stunts included lifting her little brother which she finds hilarious now as he is much bigger and taller than her.  They rehearsed it and danced to that song all the while sealing their sibling bond and creating memories that would last forever and would end up being shared on this blog, with you! As they got older and Christina moved to the UK for her studies their dance faded into their childhood. Christina remembers “after approximately 5 years, we were just sitting around with my mom and Steph listening to the radio when the song popped up! I looked over at him and said ‘Steph it’s our song!’ For a moment he looked at me like he was trying to process which song it was but when I stood up and positioned myself he immediately stood up as well and walked to the exact position he had to, to start off our choreography. I was so amazed by his memory. We started dancing to it again and of course half way through I forgot it but he remembered it all.” 

483721_10151540249360030_589832536_nFunnily enough, when I went home recently we were watching old home movies and going through old pictures and found videos of me and Christos dancing in our flat in our pyjamas. We would listen to same song repeatedly, switching off all the lights and run around with flashlights.

Growing up with a younger sibling with autism we couldn’t help but wonder if we can handle it, if they would ever speak, if we would ever be able to communicate with them. At first we were afraid, we were petrified and kept thinking we could never live with this diagnosis by our side. But, we survived. We look back at those years now thinking how we spent oh-so many nights just feeling sorry for ourselves, crying because we thought we’d crumble. Yet, we survived. We more than survived. We were pushed, inspired, lifted and moulded by them. We are us because of them.

As sisters we were tied to this dance even before we were born. But, and I’m sure Christina will agree, if we had a choice, 20ish years later and knowing all the things we know now, we would always choose to spend all our lifetimes dancing with Christos and Stephanos.

Read about more amazing sisters I have met through this blog here.

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Hope in Love

I’ve gone back to fiction books now. I’m reading A change of Heart by Jodi Picoult. You may remember her name through the floods of tears that consumed you if you read My Sister’s Keeper.

This book is about a lot of things, but mostly it’s about love. Overwhelming, unconditional love that makes us do things our brain cannot comprehend and our/or our society’s ethics and morals find inexplicable. It’s really good – read it.

So, this month’s hope write-up finds hope in love. Cliche? Maybe. But February is to many a month of love. It’s also the month that I celebrate my mum’s and my pappous birthday so it’s overflowing with love.

I searched the word ‘love ‘ on the blog so that I could refer to any previous posts I made about the topic. Apparently, I use it in nearly every post. My favourites are: 100 posts

PS Love?

When living with Autism, love is something that you never think your kid will miss; because you love them so unconditionally. But then you’re driving and he sees a girl walking down the street and he waves at her; it’s so unexpected, it’s so out of character. Mum and I laughed so loud when Chris did that one time. However, it reminds you that love – that feeling that we all need, seek, treasure – is in all of us. Whether we can express it or not, we want love in our lives. Everyone who has Autism in their life has thought about how their kid might never have that feeling, might never find someone to love, live with and have a family with. It hurts. It’s a feeling that you wouldn’t wish on anyone.

Back to love

I was on the bus yesterday when a couple sat in front of me and another sat behind me – I was trapped. Almost immediately the couple behind me (Couple 1) started tickling each other and the girl sat in front of me was stroking her boyfriends hair (Couple 2). Let me make the point that I am not a fan of PDA, I am not a fan of eavesdropping, lets just say – I am not a fan of couples. But, one of these two couples moved me so much – they were inspiration.

Anyway, to the point. I read the love story of Ron and Kristen Sandison the weekend. He jokes “My wedding anniversary is December 7th, and due to autism, I came into my new family like a kamikaze—a blazing whirlwind of fire.”

On their 3rd date Ron recalls that he revealed his “quirks” to Kristen: “After work every night, I spend 2 to 3-hours in Bible memory time. This daily routine empowers me to be able to quote over 10,000 Scriptures including 22 complete books of the New Testament, and over 5,000 quotes.”

At the 3 month point, he shared with her a story about how he carried around a stuffed prairie dog named Prairie Pup from kindergarten to sixth grade and that he collected and continues to collect Calico Critters; 3” tall animal figurines dressed with handmade outfits; hundreds of unopened boxes lined up in perfect rows against his bedroom wall at his parents’ house.

On their one year anniversary of their first date Kristen gave him the Calico Critters Meerkat Family.

On their 3 year anniversary, they had on Calico Critters on their wedding cake; the bride and groom were cats and the priest a beaver.

In March 2016, they welcomed a baby girl.

Ron thanks his wife for demonstrating compassion and sensitivity to his sensory issues by not using nail polish in their apartment or playing music with bass. He thanks her for proving everyone who doubted that Ron could be loved wholly and unconditionally by someone one day, wrong.

Ron writes for magazines and does guest lectures on autism. He wrote A Parent’s Guide to Autism: Practical Advice, Biblical Wisdom. Ron Sandison works full time in the medical field and is a professor of theology at Destiny School of Ministry. He is an advisory board member of Autism Society Faith Initiative of Autism Society of American. Sandison has a Master of Divinity from Oral Roberts University and Charisma House. Find out more about him here.

There is love out there for all of us. Refusing love because someone can’t stand the smell of bleach, because they are this, that or the other is judgement embedded in us by made up standards society imposes on us. It’s up to us to stand up to these moral, ethical, political barriers and believe that love trumps hate. For eons gone and for eons to come, one thing has been constant and one thing have we not been or will not be able to live without – love.

Happy Love month love bugs from me and my eternal Valentines:

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Hope in Poo

(One of) my New Year’s resolutions was to read more non-fiction books. I just finished a book about Pablo Escobar and now I’ve moved on to a nurse’s recollection of what it was like to be a nurse in the 50’s.

Both post-war Colombia and post-war Britain made the current politics scene more real than ever. People had just gone through a wars that left thousands dead, they lived in fear for years and in the end they thought it would never happen again.

IMG_5933And then these guys come along. In times like these it’s easy to give up and it’s easy to overlook hope.

So, I’m going to start a monthly hope write up. This month’s hope can be found in poo. That’s right, our world is so effed up that we can now find hope in poo.

On the 23rd January, a study was published in the Microbiome Journal (here) which claims that Microbiota Transfer Therapy (Fecal microbiota transplant (FMT), also known as a stool transplant, is the process of transplantation of fecal bacteria from a healthy individual into a recipient) alters gut ecosystem and improves gastrointestinal and autism symptoms. The investigation involved 14 days of therapy with oral vancomycin (an antibiotic used to treat a number of bacterial infections) followed by a 12- to 24-hour fast (clear liquids only) with a bowel cleanse using MoviPrep (laxatives). On day 16, to repopulate gut microbiota (the ecological community of commensal, symbiotic and pathogenic microorganisms that literally share our body space), a high initial dose of standardized human gut microbiota (SHGM) was given either orally or rectally for 2 days followed by daily, lower maintenance oral doses of SHGM coupled with a stomach-acid suppressant for 7 to 8 weeks. The stomach-acid suppressant was used to increase survival of SHGM through the stomach. The children were followed for an additional 8 weeks after treatment ended.

What?

Basically:  18 patients aged 7 to 17 years who had ASD and moderate to severe GI problems were given antibiotics for bacterial infection followed by laxatives for 14 days. Then, they were administered a high dose of a range of microorganisms for 2 days. Followed by a lower dose of said microorganisms and stomach-acid repressants for 7-8 weeks; which helps the microorganisms survive longer.

ASD-related symptoms improved, as reported by the Parent Global Impressions-III (PGI-III) assessment, which evaluates 17 ASD-related symptoms, showed significant improvement during treatment and no reversion 8 weeks after treatment ended.

One of the many theories about where autism comes from has been the gut. That’s why we use gluten-free and casein-free diets as an alternative treatment. In “Best Food Critic in Town” I mentioned: Marilyn Le Breton, who explains:

“When you eat, the food you consume is broken down in your stomach. The bits that are not used by the body are flushed out as waste matter. In autistic people, the breakdown of two proteins present in some foods, gluten and casein, is not completed properly. The resulting fragments of these proteins are called peptides. Peptides are small enough to pass through the wall of the gut, rather than being processed in the normal way. As the peptides journey around the body, they make a pit stop at the brain, where they do untold damage before continuing their journey and finally making their way out of the body, via urine. Both are very similar to morphine, a highly addictive drug.”

What this study proves, on a small scale, is that perhaps cleaning the gut of neurodiverse people from the bacteria that the body does not keep in neurotypical people could be the one of the answers we have been looking for.

Hope.

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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 – 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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#Project324 Week 9

Week 9 begun with France and Switzerland receiving their cards and starting to distribute this week. Christos’ 18th birthday is ONLY 2 weeks away today.

List of Fab Things in Week 8 & 9:

FAB 1: After my fab auntie Eleni gave me the idea, I have spent most of my wage on Disney dresses and masks for his big day. The princesses will include Belle, Snow White, Elsa and Cinderella, Christos will be Woody the Sheriff and the guests can pick and choose from a range of masks – including Mickey, Donald, dwarfs and Princesses. I am hoping that surprising him with his favourite characters will be well received and that he won’t just want us to wear normal clothes. He does this thing when he gets too excited where he hides things for months until he’s ready for it – I’ve mentioned our DVD fights before. We are also expecting lots of birthday cards from Switzerland from people who found #Project324 and wanted to send him an actual card instead of an email – how amazing??

FAB 2: On April 2nd 2015 16,000+ buildings joined Light it Up Blue and raised awareness. This year, on April 2nd, 157 countries lit it up Blue for Autism Awareness. What’s amazing about 2016 LIUB is that it was not limited to landmarks, local businesses, houses, hotels signed up for it and lit it up blue for Autism. That is awareness in practice. Organisations, campaigns, fundraising, and the tireless community that dedicates every moment to raising awareness made the topic so visible that local businesses pledged their buildings for Autism Awareness. You can see the breathtaking pictures here.

FAB 3: Another great thing that has been happening  was the first  AsIAm conference, which took place in Dublin on the 16th April. AsIAm wanted a conference where it could bring people together and promote the idea that every single person with Autism must have the opportunity to meet his/her personal potential.

FAB 4: In Tampa Bay, Florida, small businesses have announced that they will be partnering with the University of South Florida to become more autism-friendly. This will include customer services, AND an internship programme. “All of the students internships are in careers they think they might be interested in when they leave” said Susan Richmond, head of The Learning Academy at the University of South Florida. The Academy provides a custom transition program to prepare adults on the spectrum for employment. Kaleisa Tea Lounge on Fletcher Avenue in Tampa was one of the first to enter the programme. Owner Kim Pham is proud to talk about her new intern: “He is great. Really hard working, really funny, and he fits in really well with everyone on staff. You can’t even tell he’s an intern. Right away he rolls with the punches. When we get really busy he runs around hectic, and really pitches in, working so hard, we appreciate that”. Didn’t use the word Autism, difficult, didn’t have lower expectations – he’s just another intern.

FAB 5: After his birthday, I will be joining Ambitious About Autism and writing for the UN’s 2016 Theme: Families, healthy lives and sustainable future. This is the International Day of Families which is celebrated on the 15th of May every year. The Day was proclaimed by the UN General Assembly in 1993 with resolution A/RES/47/237 and reflects the importance the international community attaches to families. The International Day of Families inspires organisation to promote a series of awareness-raising events, including national family days, workshops and conferences, radio and television programmes, newspaper articles and cultural programmes. So find out whats happening in your area and join in. This isn’t just about Autism, it’s about families.

Pictures from #Project324:

Cyprus sipped on wine to celebrate their final card:

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Ukraine was chillin’ with some coffee:

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Dubai was a bit famished after trekking in 40 degrees leaving cards everywhere:

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and Belgium got creative:

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