When My Son With Autism Approached a Boy on the Beach About Making Noises

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We were at the beach yesterday, and my son Evan kept vacillating between trying hard to be extraordinarily good and having a hard time controlling his frustration.

He chose the extraordinary good when he decided to approach a boy about his age and his entire extended family. “Can you please stop making those siren noises? It really bothers me,” I heard him say from across the sand.

Evan proudly ran back to me to announce what he did. Evan also told me the kid hit his inner tube after he asked him to stop making the noises. I knew he wasn’t lying, and I was surprised nobody said anything to this boy about hitting my son’s inner tube. I was also mad when I heard the grandmother say, “What was that all about?” I couldn’t understand what was so confusing about a kid asking another kid to stop making a noise that scared him?

I waited until Evan was out of earshot so I could tell her “what that was all about.”

They saw me approaching, and I watched grandma and some other family members tense up. I never like to have these conversations in front of Evan, but this family clearly needed an explanation because I think explaining autism can help raise awareness and, hopefully, acceptance.

— a person who despises confrontation — was surprisingly calm as I walked over to the family at the beach.

“My son has autism and certain noises really bother him,” I said. I was preparing to add more when they interrupted me.

“He has autism, too,” someone said. “He’s mostly nonverbal, and he likes to make that sound.”

I looked down at the boy, who was sitting in a beach chair, his face obstructed by a wide-brim sunhat, and I saw a 10-year-old boy I would soon learn was named Connor. 

His mom and I high-fived each other because I guess that’s what you do when you meet a stranger who understands your unique experiences raising a child who doesn’t fit neatly into a box. Among all moms of kids splashing in the water and digging in the sand, we knew we understood each other more than any other parent at the lake that day.

We talked briefly, trading stats on our kids like they were professional baseball players. But instead of discussing batting averages, we talked about things like sensory triggers and being nonverbal.

I told her what a big deal it was that Evan didn’t just come over and start yelling at her son for making those noises, and that this was the first time I’ve seen him appropriately advocate for himself.

But as we both knew, moms don’t always have much time to chat when their kids are around. Our conversation lasted less than a minute before Evan required my attention.

We said a quick goodbye, and Evan and I had a little talk about autism, too. I told him that Connor also has autism and that he makes those noises because it makes him happy or it helps him feel better. I told him that Connor, who is the same age as he, may have hit his inner tube because he doesn’t have words and was probably upset someone told him to stop doing something that was making him happy.

I think Evan liked meeting someone new with autism, because when we got home he kept saying things like “autism is awesome” and “I love autism and special needs and disabilities.”

I never expected the conversation to go the way it did. I was prepared to unleash the wrath of a momma bear on this family and then get a half-hearted apology. Instead, I met a member of my tribe. We shared a high-five and a quick talk about our sons. 

Evan may say he loves autism. I love that autism can be everywhere because it makes it easier to find understanding in a world that can be cruel and judgmental. 

It was nice to meet you yesterday, Connor’s mom. I’m so glad you were there to understand exactly what was going on and what a big deal it was for Evan to be the self-advocate he was. I hope the next time someone approaches you about Connor’s noises, your interaction goes as well as ours did today.

The author's son on the beach next to the shore

Follow this journey on Special Ev.

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John Cena’s ‘Love Has No Labels’ PSA Inspires Me as Someone on the Autism Spectrum

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“This year patriotism shouldn’t be about pride of country. It should be about love.” – John Cena


This was one of the main messages WWE superstar John Cena shared during a new Ad Council ad titled, “We Are America” that aired on the Fourth of July as part of the Love Has No Labels campaign. In the PSA, Cena is seen walking around a small town speaking straight to the camera about what it means to be patriotic.

One of the statistics he said that really resonated with me is that there are currently 319 million U.S. citizens, 27 million of them are disabled (Editor’s note: While this is the stat in the PSA, it may not be factual. In the U.S. 27 million women are disabled, but it’s estimated 53 million adults have a disability in the country) — and almost half the country belongs to minority groups. As someone who currently lives with a disability in autism, I believe these statistics truly show how diverse of a community we actually have. These are numbers I constantly share in my community as a disability advocate.

I’m inspired by John Cena for taking the time out to do this PSA because it shows us all we are not alone in this effort to spread acceptance for people who may be considered slightly different than the norm. I thank him for using his celebrity and platform to support the cause and making a difference for those who may be considered different.

A line in the PSA that Cena said couldn’t be anymore true: “This year, patriotism shouldn’t just be about pride of country, it should be about love. Love beyond age, disability, sexuality, race, religion and any other labels, because the second any of us judge people based on those labels, we’re not really being patriotic, are we?”

For me, this message is not something we should only be promoting as part of Fourth of July but all year round. Not only in America but around the world. He concludes by saying, “Remember to love America is to love all Americans because love has no labels.”

I hope you will remember this message every day because our community will be much better for it.

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Young mother working with her baby at home

What My Employer Did Right When My Son Was Diagnosed With Autism

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Before I became my own boss, I had a great employer. But what makes an employer great?

After my son was diagnosed with autism spectrum disorder, it quickly became clear my work travel schedule was going to be a problem. I had hoped he would eventually adapt, and realized adaptation was not going to come easily to him. Traveling to all corners of the country once a month (or more) was the exact opposite of the routine and predictability my son needed.

I also needed to learn a whole new way of parenting which, with a steep learning curve, required a lot time and focus, which was difficult given the demands of my work.

I needed to not travel and to have more time. In short, I needed to change foundational elements of my job.

A great employer approaches its people from a place of courage — not being afraid of the things that simply happen with employees, things that frustrate and stress so many lesser employers.

A great employer trusts employees as valued partners, starting from an assumption that each desires to do the best they can at their respective jobs.

A great employer treats problems as individual personnel issues, rather than an indictment of the entire workforce. There is the courage to fire people when needed, instead of implementing fear-based policies and sweeping draconian changes because of one person’s bad behavior.

And a great employer will work with its employees in a spirit of compassion and support when normal life events occur.

When I asked for the changes, my employer worked with me to reduce my travel, then to create a part-time position for me.

When I finally gave notice because even part-time was not giving me the flexibility I needed for my son, it was in no way a reflection on how my employer had worked to meet my needs.

There were four key things my employer did when my son was diagnosed with autism:

My employer was creative.

The goal was to meet both my personal needs and my employer’s business needs. My employer thought outside the box to successfully incorporate me into the existing business framework, even while changing basic elements of my job.

My employer was flexible.

My employer worked with me to set a schedule that would allow me flexibility but reasonable time to get the job done.

I was treated with compassion.

Never was I made to feel that this normal life occurrence was any kind of imposition on my employer, as if mine or my son’s needs were trivial or an inconvenience, or that my personal needs somehow made me a less valuable employee.

I was treated respectfully.

Throughout the entire process I was treated respectfully and as a valued employee, even after I left. Through my consulting work I still have a positive and beneficial relationship with the organization.

Courage, creativity, flexibility, compassion, respect were the things that my employer did right, and the things that make an employer great.

Follow this journey on Autism Mom.

Image via Thinkstock.

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Jackie Marquette's son, Trent

10 Things I've Learned as My Son With Autism Transitioned to Adulthood

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My immediate survival mode kicks in when my 39-year-old son, Trent, stands in front of me looking deep into my eyes, saying, “Big hug,” then asks me what his day will look like. This was his life eight months ago, which was much different than the last 15 years.

Transition doesn’t only happen when high school ends — it can happen anytime in life. Nobody talks about middle-aged or older adults who rely on supports for transition throughout life. It is time to add this to the dialogue when we talk about autism: adulthood, interdependent living and well-being beyond the school years.

Trent was diagnosed with autism in 1980 at 3 years old. He is verbal but has communication and social anxiety challenges. Yet, when he has people around him who understand his needs and see his strengths, he has a general ease and contentment about his life.

His high school years went well. He sang in the choir, which he loved, and he was selected for a new innovative employment program, which offered him two paying jobs. It was awesome. I felt so fortunate for these community employment services while he was still in school. 

After high school ended, the “falling off the cliff” people talk about was real. But it eventually had a positive impact on me. After we landed, we brushed off the dust and I counted the blessings we had. I also got curious about “what was next.” It got me moving. We listened, followed his lead and supported Trent by helping to create opportunities for him.

Of the 21 years of Trent’s adult life, 11 years he had a part-time job at Meijer, a retail and merchandise store. Trent enjoyed his job in the pets department and lawn and garden. He was a team member, worked with co-workers and was appreciated by his employer and the regular shoppers got to know him. One day when I was shopping at Meijer, I overheard the store manager bragging about Trent to his corporate manager, “Yes, Trent is a legacy here, what would we do without him?” His comment took my breath away.

For the past 16 years, Trent rented his house from a family member and has only had two different live-in supports. He used a state grant that paid for live-in support, and he has had and still has a voucher to pay for reduced rent through Section 8 housing.

Fast forward to eight months ago — things changed quickly.

Trent’s live-in support left, so Trent moved back home with his stepdad and me. Similar emotions to what I felt after high school ended came back. I questioned myself — can I rebuild a life of support for him again? I knew it would never look just as it had previously. Now for more change, more transition and new people to find to travel on a new road.

Then along came Hannah, who became Trent’s new daily support and friend. We found her by running into her mother, a friend we knew through the artist community. Hannah is 23 years old, upbeat, fun and a recent college graduate. She and Trent fill their days running around town, painting in his art studio, exercising at the gym, participating in shopping for his personal items and groceries, eating out in restaurants or just hanging out at his home watching TV. Trent started to get his old life back with Hannah, who opened up his world.

Then two months later, my brother stepped forward to be Trent’s live-in support. He and Trent have had a unique relationship for years, and most importantly, Trent feels safe and content with my brother. 

I believe nothing just happens. I want to share with you the 10 lessons this transition and life have taught me. You might consider these, too: 

1. Embrace the uncertain future. I have to be honest, I struggled emotionally with this, but I kept moving, taking small steps regardless of fear and uncertainty.

2. Notice all strengths. You never know what door will open as an opportunity for the individual.

3. Find any way you can to guide the individual to develop their best strengths and interests.

4. Find support people who care and understand the adult. It’s important they follow through to meet needs, challenges, interests and, most importantly, safety. 

5. Create opportunities where the individual can experience everyday community settings for purpose, enjoyment and developing strengths.

6. Create work and career opportunities that offer the individual meaning, structure and interests that align with their personal preferences and strengths.

7. Remain curious about how to help guide the individual to improved life situations. I believe it’s my curiosity that has led me to become open to see potential realities for Trent. 

8. When you are up against a brick wall, try one more thing, just one. I recall those days or months when I couldn’t see my way. I tried just more more thing, one more action or reached out to one more connection. 

9. Don’t let people tell you there isn’t growth after a certain age, because there can be. But let me qualify this — it’s important to have community interactions and positive experiences that deliver safety and predictability to the individual.

10. Advocate for more improved individualized employment and community services/resources for this group.

With these actions and provisions, Trent has been able to:

Create oversized abstract paintings with brilliant color, using his strength in visual spatial ability, which brings him joy

Connect and interact with the art community. It has taken years, but he is exhibiting his art in fine art shows and galleries nationally, including the prestigious Agora Gallery in New York City and the Sweet Art Gallery in Naples, Florida. (Watch a video of Trent painting.)

Follow a daily routine that enhances his connections, communication and flexibility.

Enjoy comfort and delight living in his own home. He is known as a neighbor and a community member.

Know what he can look forward to. He has daily activities he enjoys and things that are important to him, such as his golden retriever, Katie.

Feel and express love and be emotionally and deeply connected to close family members.

Feel physically well. He exercises and takes holistic supplements.

I realize he is vulnerable to this world. I am also vulnerable to the day I will no longer be able to oversee his support needs. I don’t really know what to do about this but to only do my part now in advocating.

My son and other adults with autism who need added support may rely on us to live physically and psychologically safe, connect with others and have daily activities they enjoy. I no longer strive for my son’s “independence.” Rather, we strive for “interdependence,” which means, “we are mutually dependent upon each other, and we each can offer value by contributing our best to the entire group.”

In my view, this is the only way acceptance will evolve in our world. For now, I will do my best to oversee the supports that help him.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

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What We Do to Help Our Son on the Autism Spectrum Sleep at Night

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Sleep has always been difficult for my son, Bam Bam. Before his autism diagnosis, I remember going to the pediatrician’s office on what seemed like a monthly basis trying to seek answers in regards to why my baby wouldn’t sleep at night.

My oldest son, May May, has always been a sleeper and still is. He loves sleep, and it’s not uncommon for him to sleep 12 hours per night. My pediatrician assured me all kids are different, and that some babies are more difficult than others. Bam Bam didn’t have an autism diagnosis at the time, but sleep was my first clue that something wasn’t quite right.

I tried everything. I tried breast milk, gas drops, reflux meds, specialized formula, specialized bottles — the list could go on and on. The truth of the matter is that sleep was an issue for my child when he was a baby, and it’s still an issue for my kiddo as a kindergartner.

As a baby, the only thing that really worked for Bam Bam was the sensory input he received from the bottle. I remember all of the advice people shelled out at me. I heard comments such as, “Let your baby cry it out,” “Your baby shouldn’t be so bottle dependent” and “You shouldn’t willingly give into your baby’s screams.” This is what I really wanted to tell people who criticized me at the time: “I’m so tired from being up almost all night long. So yeah, I’m avoiding a meltdown by giving my kiddo a bottle.”

Bam Bam’s sleeping habits got better as the years progressed. He has gone from being up all hours of the night to now sleeping pretty consistently throughout the night. The challenges we experience now are way different than what we experienced in the early years. We always start the evening by laying Bam Bam down in his bed. Music is extremely calming for him, so he almost always falls asleep to music playing.

The biggest challenge now is getting my kiddo to stay in his own bed throughout the night. He’s an extremely light sleeper, so the tiniest sound will wake him up. His reactions vary from high-pitched screams, running down the hall or sometimes he tries to jump into bed with Mommy and Daddy. My husband and I typically try to bring him back to his bed and try to get him into a calm enough state so he falls back to sleep.

If he’s extremely worked up or if this has happened multiple times throughout the night, we often just let him stay in our room. When we get to this point, he’s exhausted and we’re exhausted. He has school and we both have work. We really just do whatever we can to get him to go back to sleep. We don’t want his day at school to be impacted due to a lack of sleep.

With all of this being said, I do think that Bam Bam is ready for additional methods to encourage him to stay in his bed for the entire night. He does do this occasionally, but not consistently like my 8-year-old and my 2-year-old. We’ve decided to really begin to push the sleep training this summer.

I don’t think he’ll ever be a 12-hour per night sleeper like my other children, but here’s hoping he will continue to make progress. He has already come along way, and I’m hoping he will continue to improve in this area as the years progress.

Follow this journey on Diary of an Autism Mom.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

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To the 'Cool Guy' on the Plane Who Realized My Son Has Autism

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We arrive at Burlington Airport.

At this point in my son’s life, “The Cat in the Hat” is everything to him. He has the book, the movie, the t-shirt. He runs to the gift store and demands I purchase him a Cat in the Hat Pop Up book for $47.95. I comply because I believe this may be the one thing that will get us through the TSA Security Check, onto the plane, and to Chicago without a meltdown, and I know the purchase is in vain.

We get onto the plane, and I feel like every head turns to us at that moment, looking at us with a feigned politeness. I know what they are thinking, “Oh great, it’s a family, please, don’t sit in the aisle next to me.” In my head I can even hear the stewardess saying, “You can feel free to store your… child, in the overhead compartment, or the space beneath the seat in front of you.”

We get to our seats, and we are two rows behind the engine. If we hit turbulence, it will be a bad experience. However, we are a family, and we are flying on a budget. My son sits by the window, my wife, in the center and I take the seat in the aisle. I see this “cool guy” get onto the plane, a man about my age. He is wearing a concert t-shirt, ripped up jeans, he’s listening to punk rock from the 1970s on his iPhone. This guy represents who I was as a traveler before I had a child. He takes the aisle seat directly across from me. I want to say to him, “Look, Cool Guy, you might think you are going to relax and enjoy this flight, but you are part of my family for the next 1400 miles, so strap in, it’s going to get bumpy!”

We take off. Planes are not designed with children in mind. There is no ball pit, no playground and an iPad can be entertaining for just so long. To keep my child occupied, my wife and I take turns walking him from the pilot’s cabin to the tail. We hit turbulence over Buffalo and need to take our seats. The plane is shaking; my son’s ears begin hurting from the drop in cabin pressure, and he has a meltdown. This is a child who has difficulty with crowded social situations and excessive stimulation. My wife and I can do nothing but hold him and live through this moment. I look over at Cool Guy, and he is staring at me, trying to pour a rum and Coke. I want to say, “Look, Cool Guy, I am sorry if we are ruining your time on the bar in United Flight 106, but we have a crisis here, and if anyone on this plane needs to drink, it’s me!”

My son falls asleep out of exhaustion. And that wave of exhaustion flows over my family. I just sit there, listening to the hum of the engine and staring blankly at the Sky Mall magazine shoved into the sleeve of the seat in front of me, hoping we will start our descent into Chicago soon.

Then, I feel something hit my shoulder.

It’s Cool Guy. He hands me two trial-sized Bacardi Silvers and a Diet Coke and says, “You need this more than I do.” I pour the rum into the Coke and that sweet taste of Puerto Rican Rum and bitter aspartame is the most soothing drink I have ever had.

We started talking. He tells me he grew up in Vermont and lives in Los Angeles. He works in “the business.” “You’re brave to take a kid on a plane,” he says. “I have three kids, and I won’t drive them from Long Beach to Malibu.”

“Does your son have autism?” he asks.

“Yeah,” I say and I tell him about some of the difficulties, and some of the triumphs.

He doesn’t say, “That must be hard” or “You’re a great dad.” He just listens to me. Allowing me to feel human for just a few minutes. He turns what was the most horrible flight of my life into the most memorable flight of my life.

We land in Chicago. Whenever I have a heartfelt conversation with someone I am never going to see again I want to say something like, “May the Universe treat you well,” but I never end up saying anything that poetic and goofy. Instead, I said “Hey, if you’re ever in Vermont again…” He stops me, smiles and says, “I’ll stay in a hotel.”

Then, my family and I entered Chicago O’Hare International Airport. My son promptly finds a bookstore and demands I buy him a second copy of the same Cat in the Hat Pop Up book I’d bought him two hours earlier in Vermont.

Thank you, Cool Guy, may the Universe treat you well.

Image via Thinkstock.

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