young children in classroom smiling

After my son was diagnosed with autism, I constantly worried about how the world would treat him. Those worries escalated when he was at school interacting with classmates and under the care of others, but with the help of his teachers we found a way to help foster a positive, supportive community for him. It was accomplished by talking to his classmates about autism, and the results have been more effective and encouraging than I ever hoped.

Alex is outgoing, energetic, and has a knack for improv comedyHis big brother is his best friend and his favorite things are Minecraft, sea lions and Lego. He is also autistic, with some social, sensory, attention and impulse control issues. As “Twice-Exceptional,” it seems at times that he is caught in between the typical and special-needs world, so sometimes he struggles to find a sense of belonging and acceptance. As he grew older, those struggles became greater, and we hoped to find a way to help.

Some of you may be wondering why I would want my son’s classmates to know about his autism label. Wouldn’t that complicate things because he would seem more different? I believe honest dialogue about special needs is crucial to acceptance, and that children can be surprisingly open-minded about diversity and uniqueness. If you tell them, “Different is cool,” they will believe you. The trick is to explain those differences in a matter-of-fact and positive way, before they can be affected by the prejudices of the world.

I once read these words:

If you’re the parent of a child with AS and worried about what will happen if other students find out, here’s a thought: they already know. They know they have a classmate who has different and difficult behaviors. But they don’t realize the reasons. And the reasons they imagine are much worse than the facts.”

I felt that they were more likely to be kind if they understood more about him. As the article stated, “… children are never too young to learn that… we need to treat each other with patience, kindness and understanding.”

I was also inspired by a talk given by the Executive Director of our local Autism Society chapter, who shared that it was important to share with classmates about strengths, weaknesses, and how the other children could help.

Taking that into account, Alex and I first shared with his classmates about autism when he was in the first grade. We did it again when he was in second grade, both times in conjunction with his Star Student presentation.

Any time I discuss autism, it is with Alex’s permission, and he is proud to talk about his “special brain.” We wanted to show that autism is just one of the many things that makes Alex interesting (if you want to read the script I used, you can find it here: “The Star: Telling Classmates About Autism”). We made sure to point out that even though Alex was a little bit different, he also was just the same as the other students. Both times I contacted the teacher first to gain permission, and gave her a copy of what would be said so that she could be prepared to answer any questions the students may have later.

There were still the occasional bumpy moments after the autism discussion, but we could feel secure in the knowledge that Alex had allies (and an appreciative audience for his many jokes). I even heard from some supportive, positive parents. It was incredibly encouraging. Certain students went out of their way to help Alex stay organized, calm him when frustrated and even defend him. One dear girl became quite angry when she heard Alex referred to as “crazy in his head.” She protested, “I don’t care what you say, he is my FRIEND! He just has some trouble sometimes with his big feelings.”

young children in classroom

This past school year, the opportunity to share about autism had not yet presented itself. When I finally mentioned it to Alex’s third grade teacher I was pleasantly surprised find out that she had already broached the subject with her students. She said:

“I wanted to be sure that they all understood his different needs. I use my morning meeting time to talk about empathy, our differences, and tolerance. When I told the children that he has autism, I asked them if they knew what that was. Some of the kids that had him in their class last year remembered your lesson about him thinking differently.

“I talked to them about how he is unique (just like all of them) and he uses his brain differently. I told them that he sometimes needs brain breaks to recharge and that he sometimes needs to get out of his seat, walk around, jump, or mumble to himself. I told them that these things all are okay, and that it is just his way of gathering information so that he can do his best.

“This class is so receptive and kind and they really seemed to understand. One of the kids said, ‘Yeah, and he is REALLY smart!’ We all adore him.”

I was deeply moved that she cared enough to broach such a potentially complicated topic, and that she did so to help create a positive, inclusive atmosphere in her classroom. What’s even more inspiring is that her students soon had the opportunity to put her teachings about acceptance into action, and decided to stand up and advocate for Alex.

A substitute teacher was brought into Alex’s classroom at the last minute who had not yet been informed of his IEP accommodations. The collaborative Exceptional Education teacher later shared with me that when she arrived in the class, she noticed the substitute redirecting Alex to stop moving around. Just as the ExEd teacher was about to explain to the substitute that Alex required certain accommodations, the STUDENTS spoke up instead.

She later told me, “It was as if the other children were feeling that they had to advocate for him… They were being very protective of Alex.” The students politely informed the substitute that he was doing what he usually does and works better when he can take breaks and get out of his chair, saying, “Our teacher lets him move around the class.” Then several students pitched in and helped Alex get refocused and caught up on the lesson. According to the ExEd teacher, after that, the rest of the day went much more smoothly and the substitute seemed to have a better understanding of Alex.

Thanks to a caring group of students, a day that could have been potentially frustrating for Alex turned into a great day instead. Alex’s Ex Ed teacher said, “All I could think of was what an amazing group of kids he has in his class! They understand and support him as well as admire his strengths.” I agree wholeheartedly.

Some of those caring students are in the picture in this article (with their parents’ permission), and I feel blessed that they and other incredible children have consistently supported and befriended Alex over the past several years. That is what happens when children are taught to be kind and embrace uniqueness, and they have parents who back up those positive teachings at home. It also helps to have caring teachers who are willing to tackle the tough subjects and practice inclusiveness in their classroom.

I am immensely grateful to all the teachers, students and parents who have given my entire family a sense of community and support! Every day when I send my child to school I can relax, secure in the knowledge that he is in good hands.

This is a follow-up to a previous story at The Mighty, “How I Explained My Son’s Autism Diagnosis to Him.” 

Portions of this story first appeared on the website, “Seriously Not Boring.” You can also find Jennifer Bittner at her Seriously Not Boring Facebook page

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Dorian Poe, 11, loves his stuffed teddy bear, Tikko. Two years ago, Dorian, who has autism, decided he wanted to help teach people around the world about his developmental disorder. He couldn’t travel the world himself, so he decided to send an ambassador: Tikko.

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Dorian and Tikko via the Tikko Travels Facebook page

In 2013, Tikko left home in Burlington, Ontario, and embarked on a worldwide journey. His goal was to visit as many places and meet as many people as he could, promoting autism awareness along the way for people who aren’t able to spread the word themselves. Tikko took with him a letter from Dorian explaining some of the characteristics of autism.

When someone new receives Tikko in the mail, that person’s job becomes telling people in his or her community about autism.

Via the Tikko Travels Facebook page

Within 10 months, Tikko visited 24 countries and met people all over the world who helped him spread Dorian’s message. The movement has continued to grow since its first year — Tikko is still traveling the world today in the name of autism awareness.

He’s seen some impressive sights and world monuments since he first caught the travel bug. He’s also made friends all over the world who, in turn, continue to spread Dorian’s message.

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Tikko in front of the Empire State Building via the Tikko Travels Facebook page
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Tikko at the International Balloon Fiesta in Albuquerque, New Mexico, via the Tikko Travels Facebook page
New friend in Minnesota
Tikko in Minnesota via the Tikko Travels Facebook page
Tikko at an orphanage in Kenya via the Tikko Travels Facebook page

“My personal hope is that as more people learn about autism, accept people with autism and support families with autism, the bigger our community will get,” Christine Poe, Dorian’s mom, told The Mighty in an email.

Mayan Riviera
Tikko on the Mayan Riviera in Mexico via the Tikko Travels Facebook page
Tikko in Ottawa, Canada via the Tikko Travels Facebook page

Tikko has made quite an impression on people. He’s even met a celebrity or two.

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Tikko with Jim Carrey via the Tikko Travels Facebook page

Poe says she’s received feedback from all over the world. “To date I have more than 25 letters from people who live or do not live with autism telling me how much Tikko means to them,” she told The Mighty. “I think the fact Tikko has now travelled all over the globe in just over two years speaks volumes.”

This April, Tikko is celebrating Autism Awareness Month by participating in events around the world. He just completed the Autism Walk in Costa Rica and visited schools in Brampton, Ontario, to help teach children about autism.

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Via the Tikko Travels Facebook page
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Via the Tikko Travels Facebook page

Poe hopes that as Tikko continues to travel the world, more people will feel compelled to make changes that will set up children with autism to succeed in school. “Hopefully, the government will take notice and create a ‘special needs school board’ that will help children with autism have a better chance at success,” she told The Mighty. “When you know something you are doing is helping the children, well, that means everything.

In addition to meeting incredible people around the world, Tikko has also had some awesome adventures. Watch him skydive with Skydive Toronto in the video below. 

To see where Tikko has visited so far, check out this map. For more information about Tikko Travels, visit the project’s website and Facebook page or follow Tikko on Twitter.

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My son, Isaac, lifted the items out of our cart one by one and placed them carefully on the conveyor belt: a bunch of bananas, two dozen eggs and an egg dyeing kit.

When the cashier announced the amount we owed, Isaac took the credit card from my hand, skillfully swiped it through the payment terminal and handed it to me without looking my way. His eyes were transfixed on the receipt that rose and curled from the register on aisle three.

“You have a nice day,” the cashier said, as I folded the receipt and tucked it into my wallet. Isaac didn’t move from the end of the aisle. He was happy watching customers come and go. I lifted our bag of groceries into the cart and touched his arm.

“Wait,” I said. “Wait. I need to go to customer service. You need to wait for me.”

Waiting is not easy for Isaac, and I always wonder what’s going to happen. He’s a wildcard. Will he sprint towards the automatic doors by the credit union, laughing when he sees people entering the store? Or will he stand nearby for a few short minutes and express his displeasure by screaming? Will he stare endlessly at people who are buying groceries? 

I hoped Isaac’s patience would be longer than the line.

As luck would have it, there were a gazillion people in line: a woman wanting to mail a package, a man with a mail order, a woman who needed to buy stamps…

Photo of Hy-Vee store
Every Tuesday I drive Isaac to our local Hy-Vee grocery store whether or not anything’s on my shopping list. He also goes with my husband, Chris, every Saturday for our weekly grocery haul – and he’s there any day in between when we need an item or two.

I’d guess Isaac visits the store five times a week – that’s a grand total of 260 visits for the year. I might be wrong. If so, I’m probably underestimating how often he’s there. If the grocery store were an airport, we’d be frequent flyers – the gold elite status members entitled to all the perks.

The employees at Hy-Vee are nice enough, although I don’t always think they live up to their slogan:  “A helpful smile in every aisle.” My 10-year-old son, Henry, joked the slogan should be changed to “A helpful smile in the bakery once in a while.” Nobody gives us the evil eye, and I’ve never heard a manager or an employee say anything rude, even years ago when Isaac spent considerable time playing with the automatic doors. We’ve always felt welcome in the store, which is one of the reasons we return so often. If Isaac could put a bed in aisle four and convince management to turn off most of the lights by 9:30 p.m., he’d likely move in.

Fortunately, Isaac was content to wait while I stood in line. He stayed about 15 yards from me, his eyes glued to the checkout lanes. I wondered how long he’d stay there without taking off and abandoning our cart. I figured if he ran off, I’d chased after him and we’d go home.

After a few minutes of waiting, an older man wearing a blue plaid shirt walked towards the front of the line. I wasn’t going to let him get in front of me, no matter what he needed. What if my son ran off before I was helped? Didn’t he know it was a gamble for me to be in line in the first place? Didn’t he know by looking at my gray hair and the bags under my eyes that my son has autism? 

Suddenly I found myself at the front of the line explaining what I needed to the woman behind the customer service counter.

“His mind is always thinking, isn’t it? It’s going a million miles an hour,” she said.

I looked at the older gentleman who’d been trying to cut in line. Was that an offhanded comment directed towards him? Was his mind going a million miles an hour, trying to find ways to cut in line? Had she seen him do this before?

Then it hit me. She was talking about Isaac. Of course she had seen us often in the store and knew we were together.

I nodded and pulled out a pile of receipts.

“We just love when he comes in here,” she said. Her words were genuine and so was her smile. 

I couldn’t believe it.

We just love when he comes in here. 

“That’s so nice of you to say,” I stammered, struck silent for a bit. “We’re here a lot. He loves coming in here.”

She nodded. “Is it the bright colors he likes?”

“Oh, it’s the whole experience – the people coming and going, the automatic doors, the loudspeaker, the conveyor belts, the elevator by the bathrooms, the sound when an item is scanned at the registers. It would be his dream to work here, I think,” I said.

She nodded and continued scanning my receipts.

“He has autism,” I added. His diagnosis is something I don’t disclose in public unless someone really needs to know. Because she was so friendly and interested, I wanted to tell her.

She didn’t say anything. She looked at me compassionately, as though she’d known her entire life that a little boy named Isaac had been diagnosed with autism 11 years earlier.

“He’s even looked me in the eye before,” she said proudly. Her statement made me wonder if she, too, knew and loved someone with autism.

She counted the money and placed it in my hand. As I opened my purse, she said, “Thank you. You two have a good day.”

Then she paused and really looked at me. She saw me. She saw Isaac. This is what I saw in her kind eyes and heard in the tone of her voice:

I’ve seen you in this store a million times.

I’ve seen your son walk with you, hand in hand.

I’ve seen him give you a kiss on your cheek. 

I bet you’re tired.

I bet you’re frustrated at times.

I bet some days you feel like the luckiest mama in the world.

I’ve seen your son’s love for the automatic doors. 

I’ve seen your son’s love for the elevator by the bathrooms.

I’ve seen the love you have for your son.

I’ve seen the love your son has for you.

Your son is incredible. 

We just love when he comes in here.

Isaac was still standing in the same location, gazing out into the sea of people and carts and conveyor belts.

“It’s time to go, Isaac,” I said. “Push the cart out.”

As usual, we exited through the wine and spirits department. Even though there’s a checkout there, we’ve never used it. It’s Isaac’s favorite store entrance, though, so we enter and exit there every time. I reminded Isaac to slow down as he put away the cart and bounded through the automatic doors.

The moment I stepped outside, my eyes filled with tears. It caught me off guard. Isaac had taken the van keys and was leading me towards our vehicle. He always remembers exactly where I parked the van. And as we were walking in the parking lot, I wiped away tears.

For a few minutes we sat in the van and listened to his favorite country music station, 98.5 FM. I replayed the scene over and over in my mind.

Isaac’s been to Hy-Vee a few thousand times in his short life. Although employees have been friendly enough, nobody had spoken up until today. We just love when he comes in here.

I heard:

You matter.

Your son matters.

We appreciate differences.

We just love when he comes in here. 

On the drive home I fought back tears, bit my lip and dabbed my eyes with a tissue. Like usual, I drove the long way home – past the library and coffee shop and McDonald’s and up the hill to the car wash  — because the routine makes Isaac happy.

I was happy, too, because a stranger — who didn’t have to say anything — was considerate enough to share her encouraging words with me.

It only took one kind heart and eight words.

We just love when he comes in here. 

This post originally appeared on Turn Up the V.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

I love being a special needs mom.

I’ve always been seen as an outsider to society’s idea of “normal,” being a Gothic mom, so accepting and understand people who are different is always something I’ve done.

I was told by friends, preschool members and community members that my son, Michael, has “anxiety issues” and isn’t “fitting in” and “having a hard time.” At first, his father, Andrew, and I felt like we had failed Michael and our other beautiful little boy, Luke. But the next step was, how can we help him?

For a long time, it felt like everyone was talking super fast to us about all the benefits of autism and what help you can get from an autism diagnosis.

But you have to wait 12 months for to make an appointment to get one. Then you need to spend $400 to see a pediatrician to get reports to add to the diagnosis before you can get any help or funding for your son.

So it became the biggest and longest waiting game of my life. I started to feel like I had aged so fast. Waiting for help felt like a lifetime and it got to a point that I decided that I couldn’t wait for the help anymore. I need to help myself and make the change in my life on my own.

The first thing I did was accept that there was nothing wrong with Michael. Michael was not the issue; it was my friends and his preschool that questioned my parenting and made me feel like I was a bad mother. I’m not a bad mother. I know my son better then anyone in the whole world.

My love for him is still the same. It was not until people made me question myself as a mother that things became stressful.

Once I accepted that I am a great mother and Michael is perfect the way he is, I just needed support and understanding. The healing could begin and I didn’t feel like I had failed him anymore. I felt like I could do anything.

Because the one thing people often told me about autism and my son started with a lot of versions of “he can’t.”

“He can’t make friends.” “He doesn’t have social skills.” “He may never talk.”

So I started to learn and teach myself how to better understand autism and my son. I learned he speaks 1,000 words through body language. I learned everything he did was a sign of anxiety and issues he had.

Once I learned that it was really easy to help my son, I quickly learned he loves routine. So I made the house routine.

I learned that I talk too much and ask too many hard questions. So I started to cut down my words.

I learned that he has very big sensory needs and needs big movement like rocking, jumping and running to make him feel safe. And that giving Michael space is more important then anything else. When Michael needs alone time, I need to give it to him because everything in the day has just overwhelmed him.

One thing I love about Michael that I have learned is when he lines up his cars from one room to another. That’s his way of telling me I’m not aloud in his space, until he moves a car and lets me in.

Michael start talking in two months’ time, and he started making friends and playing with the other kids. He started to make eye contact when he wants to talk to you. He now says hello to new people and tells you when he need a sensory break: “Mom, I need to jump for 1 minute to make me feel better.”

My son and I have come a long way. Our relationship is stronger and very loving. Michael is now 5 years old and had his first birthday party with his friends. Over 15 kids came and there was no meltdown; Michael just had fun.

We are not 100 percent ready for primary school next, but we will take it one day at a time, and this year, we accept that Michael’s younger brother, Luke, has autism as well. His experiences with it are very different, so I plan to working toward building a strong, loving relationship with Luke the same way I did with Michael: with a lot of patience and loving support.

All the thing I was told my kids “can’t do,” I’m going to make sure they can do them and more. I not going to hold my kids back from doing anything in life.

I love Michael and Luke. They are both the most beautiful souls you will ever meet and I don’t care that they don’t fit into “normal” expectations like other kids.

I see my kids for who they are.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Autism. In the days following my son Mike’s diagnosis, I remember a cashier innocently asking, “How are you?” as she pushed my groceries over the scanner. “How are you?” – the question felt like a knife. I just looked at her, pondering her words, pondering my emotions. It was too painful to provide her a canned response. Too painful to form a positive thought or consider ever having a positive emotion. “How am I?” – “How am I?” My son, my 23-month-old baby, my child has autism – how could I ever be simply fine?

Mike’s 2nd birthday party was scheduled to take place a couple of weeks after his diagnosis. I was paralyzed, simply going through the motions to meet my family’s basic needs. I belonged to my local Moms Club, and the other mothers came to my aid. They took over Mike’s party – hired the bounce house, cooked the food, helped with setup. I pulled it together enough to robotically attend, fighting back my tears and burying my emotions. To this day, I’m incapable of looking at the pictures from that party.

In the months following, I quickly formulated and implemented a plan. It was a recovery plan. I intended on pulling my son away from the diagnosis defining his life. I wouldn’t allow the dark thoughts to creep into my mind. I wouldn’t allow this diagnosis to define his future, not at 2 years old. I focused on the small progress he was making and threw myself into research. Autism became my life – therapy appointments, diets, vitamins, whatever was popular.

A year later, I found myself sitting and watching a movie that would change my life. No, it wasn’t the subject or message of the film that struck me – it was one line.

One simple question…

That question jolted my core and forced me to look at how I was living my life. I was living for the future – waiting for the therapy to work and my perfect child to arrive. I’d put everything on hold; I was going through the motions. I was wasting the childhood I did have with my children.

From that day forward, I’ve repeated that line countless times both in my head and to other autism parents. It’s given me the ability to shift my focus from what could be or could have been, to what is. It helped me decide what kind of life I wanted for myself and what kind of childhood I wanted for my children. It forced me to host great birthday parties and sometimes drag Mike into the world. I was able with modifications to fulfill the dreams I had for my kids before they were born. In essence, I chose to enjoy life. I chose to focus on each day without obsessing about an unknown future.

For, if this is truly as good as it gets, I choose to make the best out of what I have been given.

After all…

This post originally appeared on Autism Hippie.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

It’s never just a sandwich.

As an adult on the spectrum and a mother of children with autism, I am often asked about meltdowns and how they feel. I can tell you how it feels to have a meltdown from my perspective and how to help your child.

When you have a meltdown, it’s as if the world is ending. Everything is too much and you feel like an overwhelming darkness has engulfed your very being. Irrepressible anger that may seem completely irrational to an outsider can be inwardly devastating us internally.

When your child suddenly explodes because their sandwich has been cut at the wrong angle or another child has won a game, or even because they have been jostled in line, it’s the catalyst. It’s the last straw on the camel’s back. It’s not the sandwich, necessarily; it’s a build-up of things that may have happened during the day or even previous days. That sandwich was the last thing they could control and once that erred, their world crumpled. The last bit of control over their universe disappeared.

Smashing, ripping and throwing might be involved in an angry meltdown, as well as self-injurious behaviors to display outwardly the pain they’re experiencing internally.

How do I know this? Because it can take me missing throwing something into the bin or my PIN failing to go into my online banking properly and I will puddle, literally explode/implode and sob like my heart will break. It will be because of a build-up of things, and frustration will be the reason.

There’s also the depressive meltdown, the one that makes you feel like you’re nothing, worthless, and like the world would be a better place without you.

There’s no rationalizing with someone in either of these meltdowns. If you tell us it’s OK, it’s not. You are trivializing our distress and it will make us worse. “Stop” or “Get a grip” are also triggers, because we would if we could; no one wants to feel this way.

If your child is self-injuring, guide the hands down to a firm surface to hit.

If they are biting, grab a chewy or clean washcloth for them to fasten onto; they may need to feel the pressure of the bite to ground them, so wind a cloth around their hand so they can bite their hand without breaking the skin. If they head-butt, get crash mats and a safety helmet. A weighted blanket works well to help regulate, as does a weighted body warmer. Offer these if you see a meltdown is on its way.

Rumbling is a sure sign, or pacing up and down or verbalising aggressively , so redirect to a safe, quiet area, if possible.

If you are out and a meltdown occurs, the child may run. This is because we literally need to get away to somewhere quiet and sense of danger will fly out the window. If you need to restrain your child and get them somewhere safe ,do so. Print off a few cards detailing your relationship to your child and the fact they have autism and are having difficulties coping, as the sight of an adult carrying or holding down a screaming, struggling child can be mistaken as abduction.

If your child has violent reactions before school or after, it’s more likely anxiety and frustration at not being able to communicate what’s happening. Sensory overload is also a massive trigger. The school should be making accommodations for your child, like sensory breaks and allowing the use of ear defenders, tinted lenses and a chewy if needed. Check that your child is not being bullied, as they may not even realize that you don’t know that they are and may feel resentful toward you for taking them.

It’s never just a sandwich.

Lastly, only restrain your child if they are a danger to themselves or others, as a touch can feel like an electric shock and may cause them to strike out with a fight-or-flight mechanism.

Too often I see posts on Facebook and articles by parents moaning how terrible it is to cope with a meltdown and how hard it is for them; they have no idea how hard a meltdown is.

It’s about your child and how bad they are feeling. Please don’t punish or berate your child for how they have reacted, as its not willful or even conscious. Maybe they even blanked out completely, as in a full-blown meltdown. This can happen, too, leaving us bewildered at the devastation around us.

A cool drink and dark room, as well as clear, short sentences, will all help.

Remember, there’s more to it then a sandwich.

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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