The Unexpected Place My Son With Autism Likes to Celebrate Birthdays

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When my son, Evan, turned 6, he had a birthday party. We sang “Happy Birthday.” The kids were indulged with overly stimulating activities. They ingested way too much sugar and left with goodie bags overflowing with junk from the dollar store, including more sugary treats.

In many ways, it was a typical kid’s birthday party. However, this kid had very specific, atypical rules for his party:

Rule #1: No candles.

Rule #2: No cheering after singing “Happy Birthday.”

Rule #3: No turning off the lights to sing “Happy Birthday.”

Rule #4: Read and follow rules #1-3 or I will have a party-ending meltdown.

Because Evan has autism, certain things like candles, cheering and turning off the lights can really bother him, so we adapt the best we can.

When Evan was younger, birthdays were always hard for us because we were looking for milestones that didn’t come at the marking of each passing year. At the age of 1, he had just learned to crawl. At 2, we were still waiting for his first word. By age 3, we were wondering if our sweet child would ever tell us he loved us.

His earlier birthdays were also hard because we didn’t know what presents to get, who we should invite to parties or what special birthday outing we should have.

Evan didn’t speak many words, so he couldn’t tell us what he wanted for his birthday. He had little interest in playing with toys or other kids, so he didn’t have any real friends, and we didn’t know what toys would rise to the level of birthday gift.

In our house, it’s a tradition that the birthday boy or girl gets to go out to dinner alone with Mom and Dad on the night of his or her real birthday. Unfortunately, restaurants were not Evan’s favorite place to be, so going to one would be torture, not a treat. Plus, Evan has so many food allergies that when we go out to eat, we always bring his food with us. When he turned 5, we took him to our favorite sushi restaurant because it had ceiling fans. He appreciated it, but it didn’t rise to the level of birthday-dinner worthy.

When his 6th birthday rolled around, he was going through a phase where restaurants were too loud, too dark or had too much fire (it’s amazing how many restaurants have candles, pizza ovens or openly visible grills). The pressure was on to come up with something special for this birthday boy. What did Evan love that we could do on a weeknight after my husband, Jon, came home from work?

For the last four years, Jon, Evan and I have celebrated Evan’s birthdays in the lighting and fan aisles of our local Home Depot. The first time we went, Evan was 6. He sat with his hands on the steering wheel of a car-shaped shopping cart, wearing his birthday crown from school. We walked up and down the light and fan aisle for 45 minutes while Evan ate his dinner out of a Transformers lunch box and talked nonstop about the chandeliers, the fancy-schmancy chandeliers, floor lamps, table lamps, hanging lights, ceiling fans with three blades, ceiling fans with four blades and sconces (those are lights that are mounted on the wall in case you didn’t know because I sure didn’t until Evan taught me).

While Evan looked up at the lights and fans, I kept glancing up uncomfortably at the cameras and wondering when security was going to ask us to buy something or leave. They never did. And the other customers weren’t in the aisle long enough to realize we weren’t there to shop. I don’t think anyone knew that we were at Home Depot celebrating our son’s birthday and he was having the best one ever.

Jennifer Lovy the mighty.1-001

Follow this journey on SpecialEv.com.

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When I Tried to Find a Wedding Dress That Also Fit My Ostomy Bags

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Last month, I officially tied the knot. As I look back on our wedding photos, I just can’t believe it’s already happened. I see the joy in my eyes, the love beaming off of my husband’s bright red face and my gown big enough to cover a small army. I remember stressing myself to tears on feeling beautiful or just feeling comfortable in my own skin as I went through gown after gown. I remember crying to myself that I’d never last a second in that tight-beaded bodice without something going wrong. I remember wishing I had chosen December as my wedding month as an excuse to bury myself in a huge furry winter-white cape.

I didn’t have the worries I remember my other married friends had about fitting into their wedding gowns. My worry was something I felt hardly anyone could relate to. It wasn’t just me squeezing into my wedding gown on that magical day — it would also be not one, but two ostomy bags. Running to the bathroom for any bride is a chore. It takes a very devoted bridesmaid to accompany the belle of the ball and hold up her dress in the daintiest fashion. I was so self-conscious about my medical situation that I didn’t want anyone’s assistance. I was petrified my gown might drop in the toilet or I wouldn’t be able to get to a bathroom in time or my medical appliances wouldn’t fit into my dress the proper way.

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As a bride, I longed to feel beautiful and feminine — or like a life-size Barbie doll complete with voluptuous, womanly curves. I felt the internal pressure to fit into the gowns I saw while flipping through in bridal magazines. Every photograph I looked at seemed to blare messages of skintight satin and buttoned-up bodices. How would a backless gown look with a colossal surgical scar running down my back? After lying on my right side for six months while I lay in bed comatose, I had severe neuropathy, which made me an exclusive Asics sneakers fan. Every wedding magazine brimming full of 6-inch stilettos made me feel horrible about myself.

The more magazines I browsed, the worse I felt. My self-contempt brought me to the point where I was starting to believe the man I’m marrying was annoyed with me. After I realized the love of my life — who has always loved me no matter what and who thinks I’m the sexiest when I wake up in the morning and my hair is frizzier than a giant pom-pom — is marrying me for me, I started to shift my thinking. Everyone celebrating with me on my wedding day is there to cheer me and my husband on. They love who we are, and they love who we are together. Brandon is already mine — he told me he fell in love with me the day he met me. Who was I trying to impress? What was I trying to prove?

Then I realized I was trying to prove something to myself. Everyone else in my life just wanted me happy and healthy. I wanted to show myself that despite my medical circumstances, I could feel “normal.” But really, what is normal? Beauty comes in all shapes and sizes and all colors and circumstances. It’s something all women deserve. And I wasn’t going to let me get in the way of my own happiness on my wedding day.

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We may have good intentions, but strong, passionate and beautiful women pressure ourselves every day. Once we tune out those internal voices, we discover a beautiful truth. The people who matter in our lives are the people who love us for who we are. The only expectations we need to put on ourselves are the expectations to always listen to our hearts (and our mothers).

As for my wedding dress, I had this fantasy of a tight-fitting bodice with an enormous fairytale ballgown. I basically wanted to look like a giant wedding cake. The trick was having my dress fitted in a way that would give me some kind of figure, but with leave enough room for my ostomy bags, which expanded whenever I ate. After a snide comment from a bridesmaid that “I can always just not eat that day,” a brief pity-party and a little me time, I told myself the dress will look as beautiful as I feel in it. And so, with my medical situation in mind, the dressmaker and I were able to meet in the middle. My dress was not skintight, but it fit me in all the right places, embracing the medical bags that had saved my life years ago.

Looking back on my wedding day, I cry when I see myself floating across the dance floor in that giant cake of a dress. I look beautiful, happy and in love. And that’s because I was and I am.

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Former President Jimmy Carter Says He Has Cancer

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Former President Jimmy Carter says he’s been diagnosed with cancer.

During a recent elective liver surgery, doctors found that cancer had spread to other parts of Carter’s body, according to a statement released Wednesday on Carter’s website.

“I will be rearranging my schedule as necessary so I can undergo treatment by physicians at Emory Healthcare,” Carter, 90, said in the statement. “A more complete public statement will be made when facts are known, possibly next week.”

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To the Classmate Who Told Me I Couldn’t Have Autism Because I Could Talk

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Dear Classmate,

I know you may have not believed me the day I told you I was on the autism spectrum. You said it was the first time you met someone who had the disorder. We were both in middle school. I’d only just begun telling a few of my peers that I was on the spectrum. A year a half earlier, my parents told me about my diagnosis. I honestly had no idea what it meant other than this was the reason people had said I have “special needs.”

kerry grad photo It didn’t really faze me when you said, “You can’t have autism! You can talk!” I started discussing the facts and statistics about autism I’d heard to help you understand why what you said was inaccurate. As time went on I forgot this talk ever even happened.

I recalled the conversation when I started to become an autism advocate in college. Even though many individuals in our community can’t talk, some still communicate with amazing grace and ability. Some exceptional persons I’ve met on the spectrum have gone on to give talks around the world.

So as an addendum to our conversation that day in sixth grade, I just wanted to tell you this:

If you’ve met one person with autism, you’ve met one person with autism. Don’t think of autism as a one-size-fits-all disorder because you will be wrong. I was nonverbal until I was 2, and it took many years to be able to speak and have conversations with my peers. Being able to talk today is a blessing I will never take for granted. I can now call myself an author and a professional speaker. Now I give talks about combating bullying, but more than anything, I try to give our society an education on how different is beautiful. We all have our unique traits that make us who we are, and that’s something to celebrate.

I hope now that we’re both in our mid 20s, that if you ever come across this letter, you can educate your friends, family and community on what autism is. We all need to start thinking about how we can make an impact in a world that’s getting more diverse by the day. It can start with us right now if we want it too.

Your friend,

Kerry

This blog originally appeared on KerryMagro.com.

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What These Athletes Want You to Know About People With Disabilities

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The Special Olympics World Games aim to make the Earth a more inclusive place, to better the world for the 200 million people with an intellectual disability. While we couldn’t talk to all 6,500 athletes who participated in the 2015 Special Olympics World Games in Los Angeles this summer, we were able to ask some participants what they think everybody should know about people with disabilities. Here’s what they had to say.

1. “I want them to know that people with disabilities are good people and they can participate in any sport.” — Reagan Robinson (Zimbabwe, Golf)

2. “See the ability first then after see the disability.” — Tess Trojan (Canada, Golf)

3. “That we can pretty much achieve anything we want to as far as jobs and life.” — Jennifer Maddox (US, Equestrian)

4. “We are who we are and we are like everyone else.” — Janine Schwirblatt (Germany, Equestrian)

5. “Just treat them like any ordinary people. You know, just because people has an intellectual disability or disability doesn’t say that they’re not the same kind of people.” Oliver Doherty (Ireland, Golf)

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I Used to Apologize for Our Special Needs Family in Public. Now I Do This.

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Growing up with a socially different mom had its challenges, and most of them were made up in my head.

When all eight of us kids were small and growing up with a single mom struggling financially, you’d imagine going out for meals would be an almost-never experience. And yet, because my mom knows the value of learning social skills and loves teaching in real world environments, and because eating has to be done anyway, going out happened most months.

Learning social skills was a pretty big deal in our house! My mom adopted six of her eight kids, and five of my six adopted siblings had various special needs. Fetal alcohol syndrome, autism, Irlen syndrome, Tourette’s — the list of words we learned while growing up with my adopted brothers is almost endless. Of course, because my mom herself grew up with similar words thrown at her, she never saw words when looking at us kids. She saw people.

People in the restaurants we visited didn’t usually follow in her footsteps. To them we were messy, loud, rude and scary. And for too many years, I was on their team.

I liked eating in restaurants because it meant not having the chore of doing dishes. But I found myself always apologizing for my family, especially my brothers. And I found myself wishing my mom wouldn’t be so rude or expect the world to be accepting in ways it obviously couldn’t be.

My brother might steal a french fry from a neighboring plate and my other brother might climb the table or put his lips on your fork, and my mom would look at both patrons and staff with a curt smile and expect them to be OK with it. Believing that as the strangers watched her explain to my jumping, stimming, squealing brothers why they couldn’t steal or lick people’s forks, they’d see she was dealing with it and it would be water under the bridge. And almost always at some point during the meal she’d let everyone know it was too cold in the restaurant and she had to go now. That we needed doggy bags and the bill now.

My mom had sensory issues and synesthesia, and she assumed the world dealt with similar issues. She had an overflowing basket of children and love, and she expected the world to understand, or at least try to.

But I mumbled apologies and I begged Mom to do the same. I gave waiters and cashiers apologetic glances and looked at my own family with troubled eyes that saw mess and inconvenience.

Why did I care so much about the strangers? Why did I care so much that I would apologize in front of my brothers, hinting to them that they were a problem we were carrying around?

Because despite my mom teaching me otherwise, I let the staring and fear of strangers speak louder than love, that’s why.

But it’s also true that my mom’s socially different ways didn’t let her put artificial politeness ahead of people. Especially not her people.

Going out to restaurants with my family was about teaching my brothers, my sisters and I social skills. It was not supposed to be about apologizing for our challenges. While I apologized, Mom taught. While I felt embarrassed, Mom felt encouraged by little lessons learned.

But Mom wasn’t just patient with my brothers, she was also patient with me; she was teaching me. And over time, I too learned to teach and celebrate rather than apologize. I began to see all of us through the eyes of Mom, eyes that saw us all as beautifully capable.

Going out to eat with my family now is still noisy, but it’s inclusive. We are friendly and largely appreciated by patrons and staff. We are certainly strange, but kind. And we are unlikely to apologize.

My mom was socially different and rarely saw what we would want to apologize for. I’ve finally been gifted with that social difference, too.

Follow this journey on Autism Answers With Tsara Shelton.

The Mighty is asking the following: “Staring” is a topic that comes up so much in our community. Tell us about one unforgettable “staring” experience you or someone you love had that’s related to disability, disease or illness. 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. Check out our Share Your Story page for more about our submission guidelines.

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