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21 and Atypical: Food, Glorious Food!

IMG_5234“He stares as we bring over the food, picks up the plate, smells it and then if we’re lucky takes a tiny bite; and by tiny I mean that ants would probably carry a bigger bit than the amount he is willing to try. Then comes the silence – we hold our breath, fists clenching, heart racing all waiting to see if he approves of the dish.”  Christos has been eating the same 5 things for most of his life; pasta & tomato sauce, curry & rice, egg & lemon soup, chicken nuggets, toast. When Christos switched to the GFCF diet my dad – chef extraordinaire – jumped to action and created recipes which incorporated all the things Christos wouldn’t try but which were nutritionally essential to his diet. Read more about Christos eating habits on Best food critic in town!

Stephanos was always very choosy with food as well. In 21 and Atypical: Stephanos we described how he went from eating fruity, colourful and varied foods to being reluctant and sceptical of them! He stopped trying new foods around the age of 1. Instead, Stephanos switched to pale coloured foods with a mild palette; for example, Cerelac, plain biscuits, bananas. Fruits with textures or colours stopped appealing to his appetite. Once he was diagnosed he switched over the the GFCF diet.

The GFCF elimination diet requires that all foods containing gluten and casein are removed from the child’s daily food intake. Gluten can be found in wheat, oats, rye, barley, durum, bread, pasta, cereal, cookies, soups, sauces, candy etc. Casein can be found in dairy products in general; milk, butter, cheese, ice cream etc. 

Marilyn Le Breton, author of ‘Diet Intervention and Autism’ explains why the GFCF diet may be the key to unlocking autism: “When you eat, the food you consume is broken down in your stomach… 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.” In 2018 the Microbiome Journal (here) published a study 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. – More on this in Hope in Poo .

For both the boys switching to this diet – in Cyprus 20 years ago – was incredibly difficult. Our family used to order and ship maize pasta from Italy, order specialist flour and bread to be baked at bakeries, pack a whole suitcase of suitable products to take on a month long holiday. My parents fought endlessly to convince him to eat these new products and, to some extent, it made a difference! He was less agitated, less tired and more responsive without gluten and cassein. Funnily enough, this year I have had to go on the same diet for health reasons. But now, everyone is falling over themselves to accommodate my dietary requirements. Now, we find it weird if we can’t find gluten-free products anywhere.

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I think back to cooking maize pasta and carrying it around in tupperware with grated halloumi in tin foil to take to restaurants or visits, the smell of egg and lemon soup in our room in the Maldives over a bunsen burner, all the packets of crisps my parents had to ration between the two of us to last him through the holiday. I think back and wonder how did we survive in a world that didn’t understand why we couldn’t just have ‘normal’ pasta? The answer is: parents. Their endless, relentless and ferocious attitude, resilience and unstoppable drive.

Today, Stephanos eats strawberries, salad vegetables and all kinds of colourful and flavoursome fruits. In fact,m the first time he tried a red strawberry he was 8 years old. Hi diet is varied and he doesn’t struggle to try new kinds of food at school or restaurants or even at home. Christos eats fish, meat, sauces and has no issue trying buffet options or airplane food.

The boys love food. In fact, they plan their day around it (just like you and me). Their body just digests food differently to some people. Following the GFCF diet as a neurotypical adult I have noticed so many advantages in my body, mood, mental health and my every day life. I don’t feel fatigued, bloated, grumpy, my skin is glowing, my hair is growing, my mind is alert and keen. Maybe the advantages of the GFCF diet are just a glimpse in the many, many things we all have in common.

#21andAtypical – but atypical according to whom?

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21 and Atypical: Christos

There are 180 posts about Christos on this blog so I will spare you the repeat and link you to the one that describes how I see him best. I wrote this on his 18th birthday and contributed it to Ambitious about Autism’s International Day of Families campaign.

Click to read: To Christos, on your 18th birthday: https://christos90.wordpress.com/2016/05/05/to-christos-on-your-18th-birthday/ 

Christos Profile: 

Born: 06.05.1998

Diagnosed: 2001

Loves: Music and Food

Loathes: People singing and ruining the music, sharing food.

Character: Cheeky monkey

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My mum does not recall the exact age but she remembers him being very “difficult” on his first birthday. We were recently watching old videos of all the cousins and in one video he is running after the camera, responding to his name and in the next he doesn’t turn around even after 4 -5 times of hearing his name.

Over the next few months/years my parents watched their big eyed, pointy eared little monkey become isolated. They took him in for hearing tests and were told there was nothing wrong. He started walking on his toes and at 2 years old he still hadn’t spoken any words. My parents saw a speech therapist who referred them to the general hospital in Nicosia for further exams on nothing specific. At the age of 3+ he was diagnosed from mild to moderate autism. At the age of 4+ he was diagnosed again in the UK.

The family were distraught. Would he go to school? Would he speak? Would he be able to take care of himself? Would he have friends? Fast forward 16 years and we have a young, gentle man full of promise, love, compassion, who has friends, who takes care of us and has a lot to say. He takes care of the people he loves and makes sure his friend Stephanos always has the swing next to him at break time.

My baby brother is iconic.

#21andatypical

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21 and Atypical: Stephanos

young stephStephanos was born on 21.06.1998. His mum remembers his first words being ‘Mama Papa’ before he was even 1 year old. His 5 older siblings showered him with love because he was the baby, the centre of attention. They were all enchanted by that big smile. Just like any other infant he ate a variety of fruit jars, fruit cremes and mashed potatoes and carrots, packed full of flavour and smells.

At 11 months, he stopped reacting to his name. He stopped eating colourful food and stuck to Cerelac, biscuits and Farley’s rusks. He closed himself off, deaf to his family’s calls for affection. They remember it as him regressing instead of progressing. He stopped saying ‘mama papa’. He started stimming – hands in front of eyes, flapping hands, tiptoeing and making sure all his trains and cars were in the right order.

At 2 and a half years old he was diagnosed with ASD.

Stephanos’ family quickly jumped into action. They tried most of the alternative therapies for autism as well as speech therapy, occupational therapy, hyperbaric oxygen chamber therapy, Applied Behavioral Analysis, one to one teaching and of course used PECS. With PECS his family started communicating with him again. With music therapy they got to see that smile again. With speech therapy his speech resurfaced. Little by little, they got an inch of him back at a time.

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With the support of his big, strong family Stephanos was able to express his artistic side. Nowadays, he has an art studio next to his home where he takes daily lessons. He loves painting horses, having started with a basic drawing and slowly adding the horse mane and the tail to eventually win an Erasmus award for one of his paintings. He also has music sessions three times a week and he loves it! In fact, he knows most of the Disney songs off by heart and he loves Grease the film – and I mean, who wouldn’t? His mum describes to us how on school days they have to play Peter Pan, El Dorado and Robin Hood in the morning, have a little dance and roll and only then are they ready to go to school and start the day.

Even through his verbal communication has declined over the years, Stephanos is a major part of the Prodromou familia. He makes them all laugh, he makes them proud with his art, he overwhelms them with pride when he simply picks up a piece of cheese from the fridge and makes himself a mini sandwich. Stephanos’ own milestones and accomplishments are the product of a long and difficult journey.

Through his ups and downs, he has grown into a thoughtful, caring, compassionate and talented adult who approaches you when you are upset and gets excited when his siblings visit. Perhaps the greatest thing Stephanos has done is inspire the people around him. His family, friends, teachers and other kids get to see his progress and have hope.  Stephanos’ story gives hope to newly diagnosed families that it will get better and even if it doesn’t there is a group of people who will stand by them. He has inspired his parents and my parents to take action and to speak up for him and for all the autism families who need it.

This is just the tip of the iceberg when getting to know Stephanos. I’ll be telling you all about what he likes, dislikes, his calming routines and even his bad days – because who doesn’t have one of those once in a while? We’ll dive into a beautiful, atypical friendship between two boys who accept, acknowledge and respect each other. For example, Stephanos does not like it if you touch your own face or head (same for Christos), yet! somehow they don’t bat an eye lid when one of them does it. Boys eh!

#21andatypical

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When Will We Learn?

I’m not going to write about the atrocity that was the US Election – here’s what i felt a year ago #Project324 Trump, Republicans and Disabilities, oh my.

I’m going to write about hope, the future. I’m going to remind you that you can change things, that you need to be strong in the face of racism, discrimination and unfairness. I’m going to ask you to take action, to not let this perversion become our legacy. I’m going to ask you to think about what world you want our kids to grow up in and what we can do right now to make sure they do.

Ambitious about Autism is an organisation i work with, they’ve put on projects like: #EmployMe for which I wrote –  What happens when you turn 18? UN International Day of Families for which I wrote – A letter to my autistic brother on his 18th birthday . Fun fact – I wrote this in 15 minutes and cried the whole way through, I haven’t read this since it’s been published. Maybe fun isn’t the word for it. Autism Friendly – Ambitious about Autism supported a London-based restaurant in winning the first of the National Autistic Society’s Autism Friendly Awards. Making the world Autism-Friendly Back to School – School Bells

Their latest is called #WhenWillWeLearn. The ambition is to make the ordinary possible for children and young people with autism. They provide services at schools and colleges, raise awareness and understanding and campaign for change. 

And they don’t give up. Their campaign asks you to write to your MP (if you are in the UK). Those of you outside the UK can write to your local authority, or you can write to me – I would love to forward your letter to our MPs, because it doesn’t matter where you live. A small change can resonate around the world – that’s the beauty of awareness, it doesn’t have borders. Sign up to show your support: ambitiousaboutautism.org.uk/pledge-your-support or email me.

The campaign highlights that:
80% of children with autism experience anxiety every day about attending school;
45% had been illegally denied their right to a full education;
Over 1000 parents are forced to take legal action every year to get the support their child is entitled to;
42% of classroom teachers say their training doesn’t prepare them to meet the needs of children with autism; I wrote about this here.

So, please don’t give up. Because we have made a difference already; businesses introducing schemes to train people on the spectrum like Ford, Apple, Microsoft etc; stores introducing quiet hour to accommodate autism; TV shows are introducing characters on the spectrum; theatres/cinemas are catering for autistic youth; ‘neurodiversity’ is an official term and it’s all because of all of you, reading about autism and not giving up.

15007644_10154605350205030_2088488013_oI traveled to Venice on the 3rd November and, incidentally, it was also the day that Gatwick became an Autism Friendly airport. A ceremony was held but I didn’t know about it until later when i was stuffing my face with gelato and thinking about how much Christo would love it. The airport was presented with an award by the Chief Executive of the National Autistic Society to mark the achievement. Gatwick met a range of Autism Friendly criteria to help passengers, their families and carers, it has been praised for providing clear and accessible information for passengers about the airport and the assistance available to help plan for their journey. Staff have been specially trained to help assist autistic passengers and a hidden disability lanyard system has been put in place. HOW EXCITING. I wrote about Chris at the airport here. I know, I’ve referred to my own writings a lot in this post but it just goes to show that the information is everywhere, and it’s only a click away. So, click.

It’s up to us – we have to do this, we have to write, speak, call, email, visit, shout about all the things we want and by doing it for our own, we are doing it for everyone; one step at a time. Now, more than ever, we need to unite. We need to be one and we need to make our voices heard, because they did – so why can’t we? Now more than ever, we should recognise the power or the people. Because it was people that did this, and it will be people that change it.

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The end of Chapter 3

Earlier this week I found out that i have finally passed my Legal Practice Course; an LPC is the vocational stage of training to be a solicitor that must be taken after completing a law degree and before practicing. This means that after 8 years of being a law student, I am done. I was trying to describe to my friends how happy I was to receive the news and I couldn’t find words.

If you are a regular reader, you know that this was part of my life plan. I moved away from home, I’ve been studying since 2008 and working alongside my studies to set down the cornerstones of the life Christos will have to join eventually. This last month has been a tough one. My nan was in hospital for 3 weeks. My nan, or my 75137_10150101622680030_3087748_nyiayia, is a 2-time cancer survivor, she’s worked since she was 14 and she raised us all with such love. She loves a good sing-along, a western cowboy film, she knows how to throw a good party, she loves a good beer with her lunch and a whiskey on special occasions. She looks amazing; i know I’m biased but look at her! She always takes care of herself even though she worked 16-hour days, she never said no to a customer or an ill aunt, she was never too tired to run around after her grandchildren and I’m so proud of her – I used to borrow my yiaya’s jewelry and shoes, that’s how cool my yiayia is. She’s one tough cookie. I love my yiayia, she makes the best food, the best tea, toast and jam, she makes the best cakes (she owned a confectionery), she cries every time we speak and she rubs my feet even though hers are way more tired. I love my yiayia the most though because of how she treats Christo. I talk a lot about how our family felt after the diagnosis but my nan and granddad were right there with us. They went through all the emotions, all the ups and downs. They picked us up from school, babysat, they took Christo to speech therapy, to the oxygen chamber appointments, they watched the Lion King a thousand times, they picked up after  a tantrum, they always had a stash of calming treats, they stopped singing because he doesn’t like it and they never gave up on him. She has been a support to us and to Christo for as long as he has been with us. She knows his language, his schedule and how to bribe him for kisses and hugs. Christo knows he has to respect her, he knows which buttons to push and he knows that every time he says ‘yiayia’ she is ready to give him the world. I love the way they love him because it looks like the way i love him. It’s my only consolation, knowing he is loved that much every day I am not there.

By completing the course, I’ve ticked off a big box on my preparation list for our future. It’s something I have been working on for years, it’s the one thing I’ve worked so hard on, it’s what i will base the rest of my life on. And it’s done, it’s just there now waiting to be built on – waiting for me.

The end of the LPC is the end of the first big chapter in my life. 2 years of 4000 words every 10 days, 17 exams, sleepless nights, lots of wine, and lots of tears and it’s over. I breathe a sigh of relief before I move on, i take a moment to leave this behind and digest what it all means. In my head, everything i did was a step closer to the end game – the LPC was about 150,000 steps. I can look at my brother now with confidence, with certainty that we are going to be okay. I like to think that if he knew he would be proud, I like to think that deep down he knows. I can look back to when I left him to study in Lancaster and not be struck down by guilt; because after 8 years i did what i left him for. I think of all the birthdays i missed, all the tantrums, all the times he needed me and even though i can never go back and be there, it wasn’t all in vain.

Stay tuned for Chapter 4 of Life with the Pereras.

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School bells

Memories.

I have recently become more aware of the fact that i have blocked large chunks of my childhood and school life from my memory. There are things I don’t want to remember so at some point in my adult life i decided to put all those years in a black box and bury it somewhere. Unfortunately, that means that I also buried a lot of Chris’ early years, so many fun times with so many good friends that I only remember when they remind me. Even then, it’s like a dream, like it never happened to me. In primary school, i was bullied for the majority of my time there. All I remember is being super in (puppy) love with a boy, a doll house on my f74945_10152065431390030_291941620_nirst day, my favourite teacher and lots and lots of tears. I was bullied because i am not white; even though everyone in Cyprus is tanned. I was thrown down stairs, spat on, thrown in holes, in SKIP bins and verbally abused almost daily; I have scars on my knees, arms and face to this day. In high school the abuse settled and I made friends that I have to this day. Life at home was not great and I don’t remember most of those years either. I have a tattoo and a piercing to reassure me that i did go through a rebellious phase. I don’t remember what people thought about me, who wanted to be my friend and who didn’t. I don’t remember feeling like an outcast or being popular. I don’t know who i had lunch with every day. I know i had people that loved me, and that’s so enough, and so comforting.

I read this recently.

Several times lately I have tried to remember my time in middle school, did I like all my teachers, do I even remember them? Did I have many friends? Did I sit with anyone at lunch? Just how mean were kids really? I remember one kid on the bus called me “Tammy Fay Baker” bc I started awkwardly wearing eye liner in the sixth grade, I remember being tough and calling him a silly name back, but when he couldn’t see me anymore I cried. I do remember middle school being scary, and hard. Now that I have a child starting middle school, I have feelings of anxiety for him, and they can be overwhelming if I let them. Sometimes I’m grateful for his autism. That may sound like a terrible thing to say, but in some ways I think, I hope, it shields him. He doesn’t seem to notice when people stare at him when he flaps his hands. He doesn’t seem to notice that he doesn’t get invited to birthday parties anymore. And he doesn’t seem to mind if he eats lunch alone. It’s one of my daily questions for him. Was there a time today you felt sad? Who did you eat lunch with today? Sometimes the answer is a classmate, but most days it’s nobody. Those are the days I feel sad for him, but he doesn’t seem to mind. He is a super sweet child, who always has a smile and hug for everyone he meets. A friend of mine sent this beautiful picture to me today and when I saw it with the caption “Travis Rudolph is eating lunch with your son” I replied “who is that?” He said “FSU football player”, then I had tears streaming down my face. Travis Rudolph, a wide receiver at Florida State, and several other FSU players visited my sons school today. I’m not sure what exactly made this incredibly kind man share a lunch table with my son, but I’m happy to say that it will not soon be forgotten. This is one day I didn’t have to worry if my sweet boy ate lunch alone, because he sat across from someone who is a hero in many eyes. Travis Rudolph thank you so much, you made this momma exceedingly happy, and have made us fans for life!

Leah Paske – Bo’s momma

School is.. an experience. Some of us forget, some of us grow out of it, some despair and some thrive. We were all insecure, we all had self esteem issues, we all wanted company. How much easier would high school be if we just didn’t care though? If we didn’t shield ourselves, change our habits and go over and over every single word, pause and comma we used throughout the day? Some may say it’s because they don’t understand; that’s not true. Chris understands so much more than we give him credit for. Our kids are free, they are untouched by the weight of fitting in. Their spirit is unspoiled.  They get to be themselves without the fear of judgement. They can sit and have lunch alone without a care in the world, without trying to impress. I’ve talked about this before; the things we worry about are reflections of how much we are affected by the standards imposed on us by our community. We worry when they play alone, when they don’t get invited to parties, when people stare. We worry because we don’t understand what it’s like to live life without constantly trying to fit in.

I’m grateful for his autism too Leah. I am thankful i get to look up to a boy who is completely, carelessly and overwhelming okay with just being himself.

For the first day (back) at school if your kid has autism:

  • Dress them in their favourite clothes. If they have a uniform (get it from M&S) do a couple of trial runs before the first day so that if there’s anything uncomfortable you can sort it out before.
  • Pack their bag with them. They should know what’s in there and they should have a say in what’s in there. Make sure it’s stuff they have used before and it’s not all new and shiny.
  • Take them for walks around school (if you haven’t already) to familiarise them with the area. If you can meet teachers before hand – even better! Take the backpack with you, with lunch and maybe even wear the uniform. This way they know it all goes together.
  • Make sure the teacher knows how to handle questions, and that you are available to talk to the classmates about autism. Pretending like autism is not there is not the solution, it’s not acceptance.
  • If they have stimming toys, pack them.
  • Do a trial run of the early wake up.
  • Make a schedule and sit down and go over it with them.
  • Don’t make it a big deal. I mean, it’s the biggest deal EVER, but don’t create expectations they have to live up to.

If your kid doesn’t have autism talk to them about it. Chances are, they will come across someone on the spectrum during their education and you have to be able to answer questions. Learn about autism, educate yourselves, your children, your family. School doesn’t teach us everything, so be proactive, be positive, be generous and be inclusive. By teaching your kid about autism you are making someones school year bearable and you will make an autism family’s life just a little bit better.

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Summery Blue Balloons

A couple of posts ago I gave you a glimpse into my version of the world of Silver LiningsSilver 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. 

There has been a lot of fear in July, all around the world we have witnessed inhuman acts of violence and hate. I forgot about Silver Liningsimg_3215. So, I spoke to my blue balloon, the one I will wait for forever the one that’s always just out of reach. He called me from the tablet we got him for his birthday. We said the usual: when I come to the airport he will eat bake rolls and drink iced tea. He kissed the screen and then asked mum to hang up so he could keep playing his game. I asked what he was doing now that schools are out and mum said that he is taking lessons with one of the girls. She has books, gold stars and even a red pen; she helps him with reading, writing, art and math. He is enjoying his summer, he is happy.

So, I went out in search for happiness, progress and deflated balloons and here’s what I found:

In Australia: Jack S, a 20 year old autistic man has landed his dream job in one of Sydney’s top restaurants. He will be working in the kitchen of award-winning celebrity haunt Catalina in Rose Bay. Jack has received a hospitality certificate at Meadowbank TAFE as part of his HSC and received an award for the Cerebral Palsy Alliance’s Transition To Work program. He works three days a week in the busy kitchen at the restaurant, under the guidance of head pastry chef Berny Osorio. His main duties include mixing, kneading and baking bread; preparing fruit; making biscuits; mixing marshmallow; washing salads; and plating up. You might remember, or know, that my dad is a chef at a hotel in Cyprus. Chris and I grew up with a love for cooking; and by cooking I mean food. We are trained to love any activity that gets us food. Chris can cook pasta, curry, lentils, rice, tomato sauce and probably a lot more that he just doesn’t want us to know because then we’d make him make it himself. He picks it up so easy, and he loves it. Even if we are making a dish, I can ask him to wash the tomatoes for me, to add the salt and pepper to the pan, to stir/mix, to grate the cheese and turn the heat up or down. In the last 5 years, and especially 2015, we have seen an all time high in utilising the pool of potential which is people on the spectrum.

In the US: An Albany restaurant and tavern has opened doors and opportunities for a local teen with autism. At the Orchard Tavern in Albany, they’ve taken on board 13 year old Jonathon Wade who was diagnosed with autism and Tourette’s syndrome. Jonathon is nonverbal, he communicates through iTouch, a program. Once a week, along with his aide, he goes to the tavern and folds boxes; he folds them, spins them, and stacks them. Jon refused payment from the Tavern, instead he asks for pasta with butter and a side of sauce. Jon sounds similar to Chris. I just want to point out how brave the parent are in situations like these. I mean the fear of leaving Chris anywhere for any amount of time is crippling, but its also depriving him of experience that he could have had. Sometimes, in life with autism, the line between selfishness and selflessness is blurred big time. He is so much more capable than we give him credit for, and he can do so much that we just end up doing for him. I hope that one day a member of his community will present him with the opportunities being provided to adults with autism all over the world. I hope that they see his capabilities, his potential and offer him employment.

In Cyprus: A young boy with autism, called Stephanos, has been the talk of the island. Stephanos has been taking piano lessons over the last year and a half and has make some amazing progress. He is the first person on the spectrum to undertake musical exams. His piano teacher calls him disciplined, cooperative and hard-working. He can follow instructions and he is a perfectionist, he doesn’t stop until it’s perfect.  I took piano lessons for years and years. I remember my piano teachers with so much love, they always asked about him and never judged. My first teacher, Mrs Rea, was the first one to mention to me that music may help. I remember him sitting on the piano we had at home and making so much noise. I even taught him a couple of notes, but being the rebel he is all he wanted to do was step on the pedals and make a fuss. When I go back home, I try to play and remember the music i was taught. He sits on the couch next to me, mutes the TV and listens until I stop. Sometimes I even get a kiss at the end of it.

There’s no end in the potential we can find all over the world, all we have to do is open our eyes and minds and make the unlikely places likely. There is kindness and love everywhere, unfortunately, you have to remember to look for it.