Harambe the gorilla.

Mom 'Lets' Child Escape Into Gorilla Enclosure: I Am That Mom

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I am a mom. I am that mom.

I have four kids just a few years apart, and my oldest is on the autism spectrum. I have managed to lose each of them at different times for varying amounts of time.

When we lived in the city my son, a ball of pent up energy, would race ahead of me on his scooter while I ran to catch up, pushing his sister in her stroller, screaming for him to slow down, to wait for me, to stay within, if not my reach, at least my sight.

I’d hold my breath when he turned the corner for his preschool and the few moments I could not see him. Should he have been abducted in the time it took me to turn the corner, it would have been my fault.

My oldest, my daughter, who’s on the spectrum, tends to wander. She is distracted and
fascinated by escalators, books and animals. She would have wanted to touch and hug a live gorilla.

I have lost her in the city. I have lost her in the country. I have lost her in my own home.  It was never my intention to lose her. I lost my mind every time I did. During a family gathering when I thought she was upstairs reading, a friend found her sitting in the middle of the road in front of our house. Had something happened to her in any of those locations, it would have been my fault.

The level of venom and vitriol unleashed at this woman, at this mom, blows my mind. I wonder if her critics realize she did not arrive at the zoo that morning, a bevy of kids
in tow, with the intent to kill. Have they somehow mistaken her for someone on safari tracking, shooting and posing with the carcasses of an endangered species? Don’t they understand she was trying to occupy her kids for a few hours on a long weekend?

I wonder if her critics have ever tried to corral a group of young children. I wonder if they know that often they move in opposite directions or simultaneously drop their ice
cream and need their shoes tied. I wonder if they know that sometimes kids don’t listen, sometimes they whine and cry and fight and distract you from yourself.

I wonder if they know that sometimes they shake loose and run away further than you can see. I wonder if they know the terror that strikes when they are out of sight.

I wonder if her critics have ever loved someone who cannot care for themselves – someone whose safety and life depends on you. I wonder if they know what it feels like to lose someone you love.

And I wonder what they would sanction to get that person back.

The Mighty is asking the following: Describe a moment where you experienced intolerance or inaccessibility. What needs to happen to change this? Check out our Submit a Story page for more about our submission guidelines.

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The Kid in Harambe's Habitat Could Have Been My Autistic Brother

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John Bonilla
My brother John

By now, you’ve heard about the controversial and tragic death of Harambe, the endangered Western Lowland Silverback Gorilla at the Cincinnati Zoo. The internet has gone ablaze about who should be at fault for Harambe’s death. People are passionately divided. Opinions vary from backing up the Cincinnati Zoo’s decision to charging the zoo and the mother of the young boy with criminal negligence. Some have gone as far to say that if the child would have died at Harambe’s hand, he would have deserved it for wandering in there.

When I first saw the footage, I felt sick to my stomach. Being the primary caregiver of John, my autistic brother, I understand how easy it is for a young child to slip away. I am in no way condoning the mother’s actions, or lack of actions, depending on your views.  But, I do understand how in a second everything can change from calm to life-threatening. John slipping away happened to us, more than once.

Autistic children are at risk of eloping or wandering. If they are in a situation causing them to have a sensory overload, if they’re scared or if they’re fixated on a particular person, animal, object, sound, and/or smell, they might walk/run off. Wandering was a constant challenge for us, especially in John’s younger years. When John was the same age as the boy at the Cincinnati Zoo, our family went to The San Diego Wild Animal Park. While on the tram ride, which goes around the main animal preserve, John tried to jump out. He wanted to pet the animals.  Since there were no seat belts on that tram, Dad had to hold John on his lap to keep him safe. I could only imagine how terrifying it would have been if John was able to get down to the animals.

I remember the looks on the faces of our fellow tram patrons as dad was holding John.  John was having a meltdown. Since these patrons were with their children, you would think they would have been empathetic. But sadly, this was not the case. I heard some of them whispering, accusing Mom and Dad of being “bad parents and John of being a “spoiled child.” Even if Mom and Dad had explained John’s autism, I don’t think it would have helped them. The judgmental patrons would have probably have stuck up their noses.

As the wandering continued, our parents decided to put John in a leashed child harness while in public. This made going out more difficult. John despised the harness. Then, John figured out how to get out of the harness. We spent most of our time at home and had to take extra security measures to protect John. This included adding higher deadbolts to our doors, installing a television surveillance system, getting a car with child locks and registering John with the local police department as a potential wanderer.

For the next few years, our family took extra precautions. John had a constant chaperone who would always hold his hand in public. By third grade, John developed more speech and went to an elementary school, where the security and teachers took extras measure to make sure he didn’t wander. John’s wandering decreased, but he still wanders to this day.

Recently, John and I were walking to the bus stop. Afraid we were going to miss the bus, John tried to run across a crosswalk with the red light facing us. It was difficult to hold him back from oncoming traffic. As John’s caregiver, it is my responsibility to make sure he is safe.

When we are outside of a situation, it’s so easy for us to stick our noses up and say, “I would never do that, ” or, “That would never happen to me. I’m a responsible parent.”  Yet, at a moment’s notice, things can change dramatically.

For resources on autism-related wandering, head here.

The Mighty is asking the following: Describe a moment where you experienced intolerance or inaccessibility. What needs to happen to change this? Check out our Submit a Story page for more about our submission guidelines.

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My Autistic Unwavering Sense of Youth Is a Good Thing

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One of my favorite features of being autistic is the fact that I have an unwavering sense of youth — a seemingly endless childhood, if you will. I have never lost sight of that childlike sense of wonder.

I’ve never felt nor acted my age. I remember acting young for my age even when I was little. I was 9 and still found my interests were those of someone about 5 or 6, such as Barney. While I had some things in common with my peers, I never  have been on quite the same page as them.

Fast forward to middle school, where my fellow female classmates were starting to develop different interests. Boys, makeup, clothes… things that all seemed foreign to me. I was into video games, toys and being goofy. I was also focused doing well in school. I had no interest in these other “strange” things, and I didn’t envy the other girls, either.

In high school and college, the other kids started dating, partying and talking about things that still didn’t interest me. Video games, toys, animals and helping others were the first things on my mind. I just had no desire to do any of those other things that still seemed too “mature” for my liking.

After college, some of my peers began getting into more serious relationships, and now in our 30s I see many of them starting families. This couldn’t be further from what my priorities are right now. I still want to help people. I want to have fun. I want to be carefree. I don’t want anything tying me down. I can’t imagine the level of responsibility raising a child entails.

I totally respect that everyone is different and we all have different lives. I’m happy for people who have that life and desire it, however it’s just not for me. I still want to live like I’m in my late teens or early 20s, and there’s nothing wrong with that; it’s what appeals to me.

Ever since I was little, it seemed to puzzle my parents that I acted differently from my peers. My dad would always try to push me to act older than I felt was right for me. I tried to explain myself for years; I told them this is who I am and I’m only acting naturally. Finally, at some point when I was in my 20s, and especially after learning I was autistic and going through the diagnostic process, my dad no longer pressed the issue. He seems to have a much better understanding of me now and knows I’m not going to change for anyone or anything. This is me.

Though I’ve faced confusion and questions from the world around me, I’ve always taken pride in who I am. I feel blessed to have this sense of youth, and I think it only makes me enjoy life more. I have an innocence about me, and I see things for what they are. The littlest things will captivate me and I have simple pleasures. I feel about 10 or 15 years younger than I am and have the same interests I did then. It’s almost as if years have gone by, and I’ve been frozen in time… and I feel that’s a good thing! I’m living my life to its fullest. My motto is this: the younger you feel, the longer you’ll live!

The Mighty is asking the following: Describe your experience of not quite fitting under one specific diagnosis or a label your community identifies with. Check out our Submit a Story page for more about our submission guidelines.

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Young Scientist's Viral Video Takes on Debate Around Autism and Vaccines

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Meet Marco Arturo. At only 12 years old he is a self-proclaimed scientist, and the latest to tackle the debate surrounding autism and vaccines.

In a video posted to his Facebook page, the youngster took the issue head-on. The two-minute video, titled “Vaccines DO cause autism,” begins with Arturo presenting what he calls a “folder full of evidence.”

Except, as it turns out, the papers that fill the folder are blank.

“I think it might be because there is no evidence to support the statement that vaccines are linked to autism in any way whatsoever,” Arturo says in the video.

The belief that vaccines cause autism is largely the result of a study published by The Lancet in 1998, which claimed autism was linked to the measles, mumps and rubella (MMR) vaccine. The Lancet retracted the study in 2010 after scientists were unable to replicate its findings. The study’s author, Andrew Wakefield, lost his medical license the same year.

The controversy made headlines again this March when Tribeca Film Festival co-founder Robert De Niro, whose son is on the autism spectrum, nixed Wakefield’s film “Vaxxed: From Cover-Up to Catastrophe” from the festival’s lineup.

In the midst of it all, Arturo began several months of research on the anti-vaccination movement.

“I realized that the arguments they used could be easily refuted, and that the actual scientific studies denied anti-vaxxers’ position on the topic,” Arturo told The Mighty. “After that, I thought to myself, ‘Why don’t you make a video about it?’ And so I did.”

His tongue-in-cheek video has already been watched 4.8 million times, racking up an impressive number of Facebook shares, including a repost from actor Ashton Kutcher.

Arturo said he’s been pleased with the acclaim his video has gained so far. “I thought it could be taken as a positive thing by the scientific and medical community as a whole, and I thought it could be a good idea,” he said.

Editor’s note: The headline of this article has been changed to avoid misrepresentation of the story.

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To the Doctor Who Called My Son With Autism 'Unfixable'

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Dear Doctor, 

Remember us? I was the frazzled young mom who waited two hours to see you that afternoon. I’d only slept for an hour and a half the previous night, as that’s all my child on the autism spectrum would sleep. I robotically tried to keep that same child busy while you took your time getting to the exam room.  

When you did grace us with your presence, you accidentally hit my kid in the head with the door. You got to witness a meltdown in full force. I clearly remember you trying to step out. I was over it at that point, so I refused to budge from the door. Yes, I did tell you to talk over the screaming. 

You looked me dead in the eye as you boldly proclaimed my child was “unfixable.” You told me to find a group home for him immediately before I “got attached.” What? Who tells a mom to do something before she gets attached to her child? Newsflash, doctor, my son knows what my heart sounds like from the inside. We’re already attached forever. 

boy playing with trains

The rest of your words were a blur. I heard the word “autism.” I took the brochures from your hands. I heard you say my child would have no quality of life. Autism had “stolen him away from me.” There was nothing I could do now but have another child and get on with my life. I couldn’t breathe as the tears fell freely down my face. You almost stole my hope. Almost. 

No one does better research than a mother whose child is struggling. I spent every available hour at the library checking out books. In a time when Google was new to the scene, I commissioned my husband to find out everything we could about autism. We poured over therapies, costs, diets… anything autism-related. 

We took stock of our financial situation. We literally listed every challenge Logan had that we needed to address and then prioritized what to work on first. We spent hours upon hours filling out applications for services, all while caring for this child. Our family was in survival mode, but that was about to change. 

We stopped listening to doctors who were more interested in telling us how awful our situation was, and turned to others who were interested in helping. We discovered we were smart as well as capable enough to know how to help him. We knew his needs. We researched ways to help him both conventionally and unconventionally. We started caring less about what other people thought and more about what helped our child. 

We remained committed to helping our child with whatever resources we had available. We lost family members, friends and money, but we never lost hope.  We drove clunker cars, skipped meals and sold our belongings.  

You’re probably wondering why we would do that for a child deemed “unfixable.” Let me tell you a secret. He wasn’t broken. He legitimately needed help navigating this world. He needed interventions to make life bearable. He approached life from a different angle. His  brain is wired differently. We had to be creative in teaching life skills as well as academics. 

All that effort culminated this week when that “unfixable” child graduated on time from high school. That “unfixable” child will start college in the fall albeit on a slower schedule than his peers. That “unfixable” child will get his learner’s permit this summer. I anticipate that “unfixable” child being able to live independently within the next five years. 

Instead of telling parents their child is “unfixable,” perhaps you could tell them there is hope. Their child may look different than they envisioned. Their future may seem uncertain. They will want to quit on more than one occasion. What they need to hear from you is that no matter what happens, there is hope for their child.  

I still pray for you after all these years. I have long since forgiven you. I am grateful you felt it was your job to make me aware of how “unfixable”  my child was, as well as what you deemed the correct course of action. Eventually, I would accept the challenge to prove you wrong. Challenge accepted and accomplished. 

Follow this journey here.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. Check out our Submit a Story page for more about our submission guidelines.

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