Autism Awareness, the Puzzle Piece Symbol and Tattoos

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boy with arm around him that has a tattoo of a puzzle piece
Photo courtesy of Ink4Autism

April 2 is Autism Awareness Day; however, people who advocate for autism awareness like myself, well… we take the whole month of April; and parents of children with autism, like myself… we do it every month, every day. We actually use 365 days a year to spread autism awareness.

Autism spectrum disorder (ASD) is a neurological disorder. Often people with ASD are referred to as being “on the spectrum.” Challenges of ASD vary from person to person.

The puzzle piece is the well known symbol for autism. Over the years, there have been many debates over it. Some advocates argue it implies something is missing from people on the spectrum, or implies they aren’t whole. Gerald Gasson, a parent board member for the National Autistic Society (FKA The Society of Autistic Children) created the symbol in London in 1963. The board viewed autism as a “puzzling” condition… hence the puzzle piece.

I believe it’s up for interpretation.

I, like so many other parents of children with autism, found support online after my daughter’s diagnosis. I found each person had his or her own story to tell, and I quickly realized we all wanted the same thing for our autistic children or loved ones: awareness and acceptance. Not long after arriving in my new community of fellow parents with autistic children, I heard all about one of the biggest autism awareness pages on Facebook, Ink4Autism. This guy was spreading some major awareness, and he inspired me to want to do the same.

Awareness can be done and seen in so many ways: bumper stickers, charity walks, personal blogs (like mine), fundraisers and even tattoos… yes, tattoos.

Autism tattoos take on many forms, from the puzzle piece designs, to a butterfly with puzzle piece wings, I’ve even seen the Superman emblem in puzzle piece design. No tattoo is the same, which is true with autistics. “If you’ve  met one person with autism, you’ve met one person with autism” and my personal favorite mantra, “Different does not mean less!”

I had the pleasure of speaking with Jack Skorochod, founder of Ink4Autism. Jack spreads autism awareness with more than 100,000 followers. Ink4Autism is one of my go-to pages for so many in the autism community; I had to know how and why he started his cause.

This guy looks pretty tough — covered in ink from I’m guessing head to toe. Some may say he is intimidating. In speaking with him, he definitely smashes the stigma that tattoos are just for tough guys. He’s a husband, a father, has a passion for tattoos and a love for his family.

We spoke about his organization and how it came to life:

I’ve always been into tattoos, even at a young age. I’ve always loved the beauty of them. Although, I didn’t get my first tattoo until I was 30 years old. Yeah, but I’ve more than made up for it since then. I have tattoos dedicated to my wife, sons, family, as well as some memorial tattoos. When my son Lincoln was diagnosed with autism at 5 years old, it seemed only natural that I get a tattoo to show respect and honor to his autism.

The idea for Ink4Autism happened in November 2011 when Jack had stopped into one of the many tattoo shops he regularly frequented. It was at this time that he walked into the Lost Anchor Tattoo Parlor while they were running the “Movember” fundraising campaign. Movember is an annual fundraising event where people grow out mustaches to raise awareness for various cancers, like prostate cancer. This shop was doing mustache tattoos with the proceeds being donated to the campaign.

“A lightbulb went off,” Jack told me. “Why not for autism?”

The switch was flipped, and Ink4Autism was born. Even with a massive following, Jack is humble, and the passion he has for his cause shines through. He is a true advocate. He told me:

My first year I managed to get 18 shops in the U.S. and here in Canada to take part. Some were friends of mine, others were shop owners that I had found online that had already done some fundraising events at their shops, so I knew they would be open to helping out for autism, and thanks to social media, other shop owners found out about it and they contacted me to join and support the cause. People would find out about it through our Facebook page, and they would tell their artist friends about it. By the second year I had about 75 shops and had added Australia and the United Kingdom to the list, and it has continued to grow each year.

Since 2012, I4A has been helping spread autism awareness on a permanent level. During the month of April, you can go into a participating shop to get an autism-themed tattoo, and the funds are donated to numerous autism charities. Tattoo shops in 11 different countries around the world have participated in this campaign, and since 2012 Ink4Autism raised more than $80,000 for autism services.

Jack told me:

Our autism tattoos act as a permanent showing of love for those with autism in our lives. We are smashing the stigma that tattoos are for thugs, and we are raising awareness for autism at the same time. I will proudly display that inked love until the day I die. I love hearing the stories of people who never would think about getting a tattoo, and they are getting an autism tattoo to support their loved ones with autism, and to me the most touching tattoos are the sibling pieces. As a dad, watching that kind of support from a sibling is incredible, something I get to witness every day with my own kids.

I personally love the puzzle piece, and I don’t agree that it implies something is missing from my child; my daughter was the missing piece to my life’s giant puzzle, and now I have my lost piece.

I asked Jack what the puzzle piece symbol meant to him and this was his answer:

I see the puzzle piece as the mystery of autism. It’s just one of the parts that make up my son. I know others don’t see it that way, and it’s all right to have someone see something differently than I do… and neither of us is wrong because we are all on the same path.

Yes, we all want awareness, acceptance, and inclusion for all… and a tattoo. I think I really want a tattoo now.

Follow this journey on Melissa’s Facebook page.

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Easter Bunny Makes Accommodations for Kids With Autism

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Meeting the Easter Bunny can be an overwhelming experience for anyone, but for a child who experiences sensory overload or finds routine changes uncomfortable, it can be particularly difficult. Many kids with autism or sensory challenges want to participate in a day with the Easter Bunny at the mall, but are met with large crowds and chaos. So, a few autism organizations came up with a solution to this: the “Caring Bunny,” who’s accommodating to children with different needs.

At sessions with the Caring Bunny, music is off and bright lights are turned down. There are no crowds or long lines because you make a reservation. The environment is controlled and comfortable.

Tricia Taylor, whose 7-year-old daughter Gracie has autism, attended a Caring Bunny event at the Southdale Center in Edina, Minnesota, set up by the Autism Society of Minnesota (AuSM).

“Everybody is so patient with the kids,” Taylor told KSTP-TV. “It’s wonderful.”

Kelly Thomalla, AuSM’s Director of Marketing and Communications, says the response to “Caring Bunny” events has been positive.

“Families and individuals with sensory needs are excited to be afforded the chance to visit with the Easter Bunny… in environments that make them feel welcome, included and loved,” she told The Mighty in an email.

The “Caring Bunny,” sometimes known as the “Sensitive Bunny” is modeled after the success of “Sensitive Santa” — a popular program that allows kids with special needs to meet Santa in a comfortable setting.

For a list of other Caring Bunny events in the country,  head here.

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To Rachel Platten, Whose Song Showed Me I Don't Have to Be Alone

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To Rachel Platten,

I know you don’t know me. I’m one of the many fans you have found along your way. I wanted to share with you that your song “Stand By You” has allowed me to feel hope and love in ways I had previously not known were possible.

Let me give you a little background for this letter. I am at a hard place in my life. Last year my son was diagnosed with autism, generalized anxiety disorder and sensory processing disorder. This year another heavy diagnosis was added, eosinophilic esophagitis. Shortly after, we were told my younger son also has autism, generalized anxiety disorder and showed signs of obsessive-compulsive disorder.

These things were hard for me to fully accept, although I may have known inside for some time. I feel these things changed who I am as a mother and who I am as a person.

two women wearing black tank tops selfie
Casey (left) and her friend.

A few months back, a dear friend of mine sent this song to me and told me this song was written for us. This friend has been there for me no matter what. This woman is so strong, the most mature and clear-headed person I know. I could go on for days about what she has done for me, and for herself. Still, as we get older and have more kids and responsibilities, it becomes harder and harder to find time together. She, another woman and I try to make sure we see each other from time to time and stay in touch via text, probably more often than our husbands would care for. This song has become our anthem.

She sent this to me and I cried. This song brought me to my knees. My son had just been told he could no longer have milk, soy, wheat, eggs, nuts/tree nuts and fish/shellfish until we could hopefully figure out what trigger food was making his esophagus close. I was thrown into another world, especially when paired with existing eating and sensory issues. I felt broken and fearful.

Relationships have always been hard for me. Friendships are few and far between because I have a tendency to stay on the peripheral, pushing people away rather than opening up. The support my friends haven given me and listening to your song have pushed me to be someone who is there for others. It has given me hope that I can do this.

This song shows me I do not have to be alone. It pushed me to open myself up and accept others in what could have been a dark time. This song, and the support behind it, has allowed me to grow into the person I was meant to be.

Ms. Platten, I’m not sure if you wrote this song based on a personal experience or if the song was sent to you by a muse. I’m not even sure if you wrote it, co-wrote it or just chose to create it. Still, I believe every word with all of my heart, and you express them so beautifully. Thank you for this amazing song. Thank you for giving hope a song.

The Mighty is asking the following: Share a powerful moment you or a loved one has had with a public figure. Or, write a letter to a public figure who you feel has helped you or a loved one through his or her work. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo courtesy of YouTube/Rachel Platten Vevo

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A Former Chili's Manager's Letter to the Mom and Child With Autism at Table 9

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A letter from a former Chili’s Restaurant and Bar manager to a mother and her daughter with autism is making the rounds online.

table 9 at chili's
Table 9 – Photo courtesy of Tony Posnanski

Two years ago, Tony Posnanski was at work at a Chili’s in Orange City, Florida, when a customer complained that a child at a nearby table was being loud. Posnanski went over to the family in question, but before he could say anything, the woman calmly asked him, “Do you know what it is like to have a child with autism?” In what he calls a “most memorable restaurant moment,” Posnanski responded that he hoped their meal was awesome and gave the girl, who he guesses was about 5, a high five and left.

He later went home and wrote a letter to the family on his blog (which he no longer keeps) and republished it on The Huffington Post; but he didn’t share it to give himself a public pat on the back. He says he wanted to thank the woman and her daughter for giving him perspective and teaching him that “sometimes doing the right thing does not make everyone happy; just the people who need it most.”

When viral content Facebook pages like Great minds think alike and  Love What Matters recently picked up the letter (full text below), Posnanski, who left the restaurant last May to start his own business, got another chance to again reflect on the moment. “It changed me,” he told The Mighty. “It made me realize that everyone deserves a chance to eat without feeling out of place.”

He says the response to his letter going viral again has been larger than when he first posted it. “This has been amazing. I’ve received hundreds of messages.”

Take a look at his viral letter below:

“To the woman and child who sat at table 9,I did not introduce myself to you. My name is Tony Posnanski. I have been a…

Posted by Love What Matters on Monday, March 14, 2016

 

 

The full post reads:

To the woman and child who sat at table 9,

I did not introduce myself to you. My name is Tony Posnanski. I have been a restaurant manager for fifteen years now. My day consists of making sure my restaurant runs well. That could mean washing dishes, cooking and sometimes even serving tables. I have also dealt with every guest complaint you can imagine.

A few weeks back you came into my restaurant. I was very busy that night. I was running around helping the kitchen cook food. I was asked to talk to a table close to yours. I did and they said your child was being very loud. I heard some yelling while I was talking to that table. I heard a very loud beep from a young girl.

I started to walk to your table. You knew what I was going to ask. You saw the table I just spoke to pointing at you. I got to your table and you looked at me. You wanted the first word. You said…

“Do you know what it is like to have a child with autism?”

You were not rude when you asked the question. In fact, you were quite sincere. Your daughter could not have been more than five years old. She was beautiful and looked scared that I was at the table. She looked like she thought she was in trouble.

In fifteen years I do not have a lot of memorable moments as a restaurant manager. I remember some guests who were mad that their burger was not the way they wanted it. I remember a woman who called corporate on me because she said I gave her a regular Coke instead of a Diet Coke. I remember having to cut people off from drinking alcohol and I remember having to tell tables to have their child be quieter.

However, I do remember everything about the day my son was born. How I cried when I heard him cry. How I stood there and told him I would do anything for him and be the best father possible. I remember the day I married my wife. How I cried and promised to be the best husband possible. I remember the day my daughter was born. I did not cry that day. I was just so relieved because I lost a child two years earlier.

I know what I was supposed to say when I went to your table. I was supposed to politely tell you to please not have your daughter yell. I was supposed to offer to move you to another area. I was supposed to offend you by not offending you…

I did not do any of that.

Instead I just told you I hoped your meal was awesome. I high fived your daughter and then I told you that your meal was on us tonight. It was only sixteen dollars. It meant more to me than that. I do not think the other guests I spoke to were happy about it. At that moment it did not matter to me.

I do not know how you reacted. I had to leave to go cook because the kitchen was not doing very good that night. When the server asked me why I bought the food I just said you did not enjoy your steak. I did not tell anyone what you said to me. I was thankful you did say it to me though.

You asked me a question that I did not answer. The truth is I do not know what it is like to have a child with Autism. I know what it is like to be a father. I know what it is like to be a husband. I know what it is like to not tell his wife how much he loves her enough. I know what it is like to want to spend more time with his children.

You asked me the question right away. You have been through this before in other restaurants. I did not want to be like other managers for one moment. I did not want to tell you what you always heard.

Honestly, I wrote this to you and your beautiful daughter because I wanted to thank you both.

You have given me a great restaurant memory. One that I needed for the last fifteen years.

You also taught me a valuable lesson…

Sometimes doing the right thing does not make everyone happy; just the people who need it the most.

Sincerely,

Tony Posnanski

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My Words for Other Parents on the First Anniversary of My Son's Autism Diagnosis

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To the parents in the waiting room,

I’ve seen you.

I recognize you.

I was you a year ago. With that worried, shell-shocked expression on my face. Wondering what the future held for my child. I can see your fears like they are a shadow next to you. They whisper into your ear ramblings about mainstream school, lifelong care, what would happen once you were gone.

As I sit watching you I desperately want to tell you, it will be OK. You will work it out. It’s our first anniversary of our son’s autism diagnosis, and things look so different now. Personally, I’ve never been one who took much stock in anniversaries, but on this one I will have a cocktail. It’s worth celebrating.

Our world was rocked too a year ago, when our gruff but brilliant pediatrician unceremoniously kicked my mother, toddler and newborn out of her office. She asked me bluntly, “What stage are you at? Do you need the ‘What is autism’ spiel or shall we talk about next steps?” Surprisingly, time didn’t stop then. It had skidded off to a parallel universe the week before, when our son’s developmental assessment put him 12 to 18 months behind. Meanwhile my husband was en route, stuck in traffic and only just emerging from the void of denial.

Are you ready for the next steps? You don’t have to be yet. Nothing will change if you give yourself time to absorb it. In fact, you may make better decisions if you do. Give yourself time to remember your child is still there. Nothing has really changed. They were born this way, a beautiful, funny ball of energy.

We gain a couple of labels in that appointment: a special needs parent, the parent of a child with autism. Don’t worry, none of us really know what we are doing yet. I was just a 20-something desperately trying to keep it together after having two babies in as many years. I sat across from the doctor at the mercy of two small humans with sleep deprivation, my boobs sore from too much milk and my head exploding from too much information, wondering how the hell I was meant to remember all these “next steps.” It seemed to involve too many people, a rainforest’s worth of paperwork and thousands of dollars — and that was just the diagnosis. But we got through it and so will you.

mom and dad holding two young boys
Rachelle with her husband and sons.

It wasn’t like the diagnosis was a surprise. I very much doubt it will surprise you either. Neither of us ended up in this office without having some serious questions to ask. In our case, our 2-year-old was bashing his head into concrete to the point of grazes. It wasn’t a tantrum, it was our placid little boy screaming for help and unable to find his voice. He was beautifully quirky, but I had long since suspected there was more to it. I had been desperate to be wrong. I’m sure our stories are similar.

I wonder how long you have known? The questions and uncertainty about our firstborn had plagued me since he was still in a bassinet. I kept this to myself and rehashed over and over in my head, always convincing myself I was overreacting, an over-anxious first-time mother. I wonder if you are plagued with the same self-doubt? Or are you blessed with more confidence than I was? I hope so.

There can always be excuses if you go looking for them. I found so many. Silent reflux. Two introverted parents. Pulling apart complex electronics is normal at 2 right? His dad was a genius. I was quiet. I just needed to talk to him more. But sooner or later we had to stop making the excuses, didn’t we? I promise you will accept it, and you can begin to see the beauty of looking at the world through your child’s eyes. It is so different. It is so fabulous.

I know your head may be spinning and the nights can be long. But those feelings settle. Yes, there are important decisions to make. Applied behavior analysis (ABA) or floor time? Both? Those words may not mean anything to you right now, but they will. Arm yourself with as much information as you can find, then trust your instincts and you will make the right decisions.

Living within the vacuum of early intervention can be all-consuming. One of the most poignant lessons I have learned is all this is not so my son Artyom can appear as the world expects him to, but to give him the tools to express himself and utilize all the potential within him. Our routine of ABA therapy, group therapy, speech and psych works for Artyom. You may find therapy is really great fun. Our youngest, Theodore, comes along for the ride, soaking in the lessons taught to his brother.

You can find yourself in a race to stay ahead of the frustration and anxiety that come with being unable to understand the world and communicate your needs. Hold onto your loved ones, face the challenges together. It can be easy for it to tear you apart, but keep talking and understand you may be at different points in the journey, but remember it’s a similar journey.

Over the year the feelings of overwhelm have settled, and we have fallen into a groove and solid routine, much to Artyom’s delight. There’s excitement and relief every time he says a new word, pride when he nails a skill and the occasional pangs of sadness when I see another 3-year-old confidently riding a scooter or some other activity when Artyom spends weeks learning a game. But we laugh a lot, use a healthy dose of sarcasm on the tough days, hold each other up when necessary and love unconditionally.

It’s our first anniversary, and while I’m not quite ready to celebrate this one, I am cautiously optimistic. Please take this year one day at a time and think about it when it’s over. You might find things look radically different. We are at the entrance to the freeway and the traffic doesn’t look too bad; it was bumper to bumper this time last year.

You will find your feet again, and that precious child playing on the floor will be OK, because they have you.

mom and young son
Rachelle and her son, Artyom.

The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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All-Autistic Camera Crew Produces Beautiful Video of All-Autistic Wedding

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groom looking into bride's eyes On September 26, 2015, Anita Lesko and Abraham Nielsen said “I do” in front of friends, family — and a room of people on the autism spectrum.

The autistic couple chose to tie the knot at the Love & Autism: A Conference With Heart conference in San Diego, an event organizers called the “First All-Autism Wedding.”

“My goal is to start the social movement to break down the misconceptions that people on the spectrum do not want and need relationships,” Dr. Jenny Palmiotto, a marriage and family therapist and the founder of Love & Autism, said in a press release for the event. “Autism is always there and love is always there; it’s nothing that an individual needs to overcome.”

Five months later, the couple has released their wedding video (below), shot by an all-autistic crew. They’ve continued to share their story to crush the stereotype that people with autism don’t feel love or want relationships.

“Autistic people have the same need for love, relationships and marriage, just like everyone else,” Anita, 56, told The Mighty in an email. “We might not show it on the outside as well as others, but on the inside we have the same human needs.”

“We are going nonstop as autistic advocates,” she added. “We truly feel that we were destined to meet to be able to work together to help our autistic community.”

Anita says their ceremony was not different than a “normal” wedding, but what she and Abraham experienced was “quite different than what most ‘neurotypicals’ would have experienced.”

For example, as she walked down the aisle, she grew overwhelmed by the harpist playing, the hundreds of people watching her and the aroma of rose petals scattered on the floor. “It all created a totally surreal experience to me,” she said.

The best part of the wedding, she says, was right after the ceremony when she and her husband stopped at each table to greet guests. The positive feedback from both autistic individuals and parents of autistic children will stay with them forever.

“They had tears in their eyes, saying that we gave them hope that their autistic child will grow up to find love and happiness like we have,” Anita said. “That was the greatest gift we could ever receive.”

As they continue to enjoy married life (“We’re inseparable!”), the two are on a mission to help autistic individuals form meaningful relationships and teach non-autistic individuals that people with autism are more than capable of emotions.

“Abraham and I thought it was beyond impossible to ever find love,” Anita told The Mighty, “so it was all the more special to us that we did find the love of our life.”

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