dad and son walking hand in hand

When a Lady at the Grocery Store Gave Us Just What We Needed During My Son's Meltdown

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I believe when God created this world, he sent in a few angels who would touch people’s lives with their kindness. They would come into our lives and restore our lost faith, our strength, our hope, and our happiness. When others stare or ignore, these angels would reach out and hold our hand; when others stand and judge, they gently whisper, “I understand.” I am lucky to have met one of those kind souls.

Those with a child on the autism spectrum know how quickly a seemingly innocuous event — a walk in the park, a trip to the store, a day at a fair, a birthday party – can escalate into an incident. What we call meltdowns are just an external manifestation of a person’s inability to communicate, the sensory overload playing havoc on his or her mind, and tons of other factors we might not even know.

It was one of those days for my son and one of those days for me when you just feel so defeated you don’t even want to try. We had moved to a new neighborhood and after a lot of searching found a speech therapist. On the first visit, she politely asked us to find another therapist because Vedant was “a handful” for her. His special needs school he was attending had been asking me to find him a new school because he was “too low-functioning” for them. Vedant was having a rough phase. I knew something was bothering him, but I was unable to do anything except watch helplessly. His distress often ended up in him, out of all the pent up frustration, grabbing my hair.

It was one of those difficult times when nothing seemed to go right. However, I had a household to run and so had to go grocery shopping. While I was waiting for my turn at the register, Vedant suddenly started crying and grabbed my hair. He has a death grip when he wants (I must be feeding him something right!), and as he pulled in all directions, I withered in pain, unable to peel his hands off me.

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I could feel all eyes on us, except one — the lady in front of me at the register.

She turned around, looked at me with the gentlest of eyes and asked if I wanted her to help me get stuff off my cart for checkout. I nodded my head, still trying to calm him. When Vedant felt better and freed me of his grip, I went ahead to pay, but the cashier said the lady who had emptied my cart had already paid for me. It was then I noticed that she was waiting for me with my cart while she had another store associate push her own. I went to thank her and pay her back, but she adamantly refused. By now, Vedant had settled down too, and my head with a disheveled mop of hair could think straight again. She asked if she could walk with me to my car. I gladly agreed. She said, “My son is on the autism spectrum too. I understand.” I forced a smile of acknowledgment and walked along.

We walked to my car in silence. She said nothing, but I could feel the warmth that radiated from her. It touched my heart. She did not try to do anything over-the-top to make me feel obligated — talk too much, sympathize too much, preach or try to be condescending about the whole situation. She was there by my side, like a strong support. I couldn’t have asked for anything more at that moment. I just wanted someone to shield me from everyone else, and she appeared.

There was healing in that silence. We reached my car, and she nicely stacked everything in my trunk while I buckled up my son in his seat. I went back again to thank her. She gave me a hug — the warmest and the most honest hug I have ever had — and said, “God loves you.” Then she quietly walked away.

I did not ask for her name or her number or notice where her car was parked. I was too overwhelmed. I watched her walk off, and then I went into my car and cried. I have no idea what those tears were for. Were they tears of exhaustion, of defeat, of fear of failure, of embarrassment, or were they tears of joy, of gratitude and of thankfulness? I’m not sure. All I know was that crying felt good.

Since that day there have been several occasions that Vedant has had a rough moment in a mall or a park or another grocery store. But I no longer feel as overwhelmed as I did that day. Not embarrassed either. I don’t know how that incident affected me, but it changed me to believe I have a kind soul watching over us, and it will come to our rescue when I really need it.

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When Bedtime Brings Clarity for My Son on the Autism Spectrum and Me

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The tension in his little body is visible. I know it is going to be a difficult day. When auditory processing is not easy, it is difficult for him to follow direction. If motor planning is harder today, he might be aggressive, moving his body in frustration.

Today might be a struggle for him.

To help him through this day, I will need to be vigilant with his sensory diet. We will do his brushing and lotion routine when he gets dressed. I will be sure he gets his feedings and medicine right on time. He will do his spinning and his jumping. I will need to provide plenty of opportunities for hard work.

If today is a struggle for him, there will be constant bickering between he and I. He will be sassy and demanding. He will fight every little thing that we need to do, even if it is something that he ultimately wants to do. I will constantly be separating him from his sister. I probably will need to hold him down to get each tube feeding started, while he attempts to kick and punch me. He gave up naps when he was 18 months old, so there will be no break today. I cannot leave him for a moment because I don’t know what will happen, so there will be no cooking meals, solo bathroom breaks or a shower.

Today might be a struggle for me.

We will both meet the end of the day with exhaustion. He will fight bedtime at first, but the routine of bath time, brushing, lotion and lights-out will calm him. When the lights go out, we will say his prayers together. I will ask him to tell God what he is thankful for. He may or may not be able to verbalize an answer, so I will help him. He will drive a little car up my arm and tell me he loves that arm. He will put one hand on each side of my face and pull me in for a kiss. After his kiss, he will tell me he loves me. When he asks me what we should do next, I will tell him that we should go to sleep. He will reply, “OK, Mommy,” and cuddle his face close to mine as he closes his eyes and drifts off to dreamland. As I listen to his breaths become deep, I will thank God for those sweet moments with my darling boy.

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It is in those moments that the stress of our day melts away. If it weren’t for those moments, our day would end with tension and exhaustion. Instead, we are only left with love as we rest up to start anew.

Tonight we revel in the clarity of bedtime.

Follow this journey on Little Mama Jama.

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Image via Thinkstock Images

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I'm Not Asking for Autism Awareness. I'm Asking for Acceptance.

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I have written my entire blog around the theme of being “Anonymous” because many autistic people feel invisible, unseen and anonymous in the world. Autism is an “invisible disability,” meaning you can’t tell someone is autistic unless you ask them (or know autism very well and are paying close attention).

People have awareness of autism – they know it exists, they know autism is a popular conversation, and its prevalence seems to be increasing. In 2014 it was estimated that 1 in 68 children (1 in 42 boys and 1 in 189 girls) are diagnosed with autism spectrum disorder (ASD).

People know autistic children can have trouble in school and may be prone to meltdowns, but they don’t understand what causes a meltdown. Being aware that autism exists and having acceptance of autistic people are two very different things.

October 10th was World Mental Health Awareness Day – but today I am not asking for more awareness. What I am asking for is understanding, true understanding, and acceptance.

Accept me.

When I am staring at you blank faced because I did not understand what you just said, give me some time to process your words. Sometimes my brain works on a delay. It doesn’t mean I am not listening.

Don’t automatically repeat yourself. I may ask you for clarification. I might have heard you wrong. I’m doing my best. Don’t get frustrated if I ask you to repeat something.

I’m not Rain Man.

I shouldn’t even have to say it – but most autistic people are nothing like Rain Man. Some of us have unique skills and abilities, and some of us do not. No two autistic people are the same, and I can’t go into this without ranting because I get the “You’re nothing like Rain Man!” comment far too often.

Understand me.

Sometimes I have a hard time verbally expressing myself. It is hard for me to come up with on-the-spot conversations or talk about my feelings. Words do not come from my mouth easily – if I am talking to you, my brain is working hard and I am doing my best.

If I am not talking, don’t take it personally. Sometimes, if I am worn down and if I am tired, the words get stuck in my mind as if traveling through glue. By the time the words are ready, they are no longer relevant.

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Don’t underestimate me. 

I do have some unique challenges, abilities, and disabilities. My brain works differently than most of the world, but I am not “stupid.” Sometimes people talk down to me or talk to me like I am unintelligent. Technically, despite problems with my working memory, I am an adult, so being talked to like a child is extremely offensive.

There will be things I cannot do from time to time and tasks I may find difficult, but I always try my best and do my hardest. On occasion I may ask for more time to complete or learn something new, but in general I tend to be unstoppable once I set my mind to something.

Stop asking me to blend in (and don’t compliment my ability to hide my autism).

I can blend in if I have to, but passing is a lot of work and takes up tons of mental energy. Let’s say I have 12 spoons to get me though my entire day. I only have so many spoons available to me, and passing costs me about one spoon per hour. I need to save my spoons and  “passing” is too costly. (Please read “The Spoon Theory” written by Christine Miserandino if you have no idea what I am talking about.)

This world was not made for me. Our school systems teach us to blend in, sit still, and follow the crowd. This push to conform has haunted me all my life, and eventually, when trying to blend in finally failed, I ended up with an autism diagnosis.

Let me be me. It’s been hard for me to learn to accept myself. Asking me to blend in, to fake it and be “less autistic” makes me feel as if the “real me” is not good enough. I won’t do it anymore – nobody should have to feel ashamed of they way they were born.

My Mental Health Awareness Day wish – more than anything I am putting out a deep wish for true acceptance. Being aware is not enough. It is important that we accept people as they are.

Editor’s note: Because World Mental Health Awareness Week is also referred to as World Mental Illness Awareness Week, The Mighty and the author of this post just wanted to clarify: autism is not an illness, nor does it require a “cure.” It is a neurological difference, which is why we raise acceptance for it on World Mental Health Day.  

Image via Thinkstock.

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3 Questions for Caregivers of People on the Autism Spectrum

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Dear parents and caregivers of people on the autism spectrum,

I’ve written my share of articles and stories, and even a book as someone on the spectrum myself. Some articles were explaining why I have issues with certain things. Others would describe how I’ve learned to cope and what has helped me to grow. And these stories are important to me. But a good friend of mine helped me realize the other day that all of these writings are one-sided. They are only about what I want to say. And in order to make a difference, there needs to be a conversation — and conversations need to have an exchange of ideas, not just my own.

So I want to hear from you. I want to ask questions. I may not always be able to understand the answers, but I’d like to at least hear what you have to say. Some (but not all) of my questions include:

1. Do you feel like you are being heard? Or do you feel like no one is listening?

2. What can I do that would be most helpful to you?

3. What else do you want to say?

I want to open the door for a conversation. I cannot speak for anyone else. However, I personally want you to feel as though you are allowed to share your thoughts and opinions. Because I know how important that is for me.

I look forward to hearing from you.

Sincerely,

Erin Clemens, an adult on the autism spectrum

Image via Peter Brown.

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Kristina Bant Jenkins Photographs People With Autism for 'THIS is Autism' Series

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As the mother of a child on the autism spectrum, Kristina Bant Jenkins wants people to know her son for who he is and not just what condition he has.

“Early on in the autism journey, I would talk about my son and autism, and people immediately put that label on him, then identifying him with anything attributed to that label,” she said. Others’ notions of her son left Bant Jenkins feeling boxed in, so she decided to use her skills as a photographer to help those outside of the autism community understand that autistic people are more than just their diagnosis.

Young boy smiling

“I want people to know our children for who they are as individuals first, people, children with souls and hearts,” Bant Jenkins told The Mighty. “I didn’t want the first impression a stranger had of autism to be a really negative one, that of expectation of an outburst or aggression. I deeply wanted people to know my child. Who he is, what he loves, what makes him smile and his eyes twinkle with awe. I felt every child with autism deserved that.”

Little boy grinning

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As part of her “THIS is Autism” photo series, Bant Jenkins has photographed 45 people on the spectrum, most of whom are children. While she only photographs each person for 30 minutes, she shoots continuously so she doesn’t miss a single moment.

Young boy outside looking up

“’This is autism!’ I found myself saying every time I showed one of those photos,” Bant Jenkins explained. “THIS is Autism shines a light on what love is in their life. When I look through their eyes, to see their world, I see what they love, then I see their face light up and their eyes shine and their wonderful little personalities come through my camera lens.”

Young girl wearing a fairy costume outside with two other children

Bant Jenkins photos have been featured in a number of publications, and, most recently, at the Love and Autism conference in San Diego. The series isn’t over yet. “Right now, I don’t turn anyone away. I am somewhat limited to Southern California because that’s where I work, but I am open to expanding the reach,” Bant Jenkins said. By the close of the project, she hopes to photograph at least 100 subjects. The last photo in the series will be a photo of Anita and Abraham, an autistic couple Bant Jenkins got to photograph on their wedding day.

Anita and Abraham

“People with autism are individuals just like everyone else,” she said. “We have more commonalities than differences. What we have in common is usually really easy to find – music, our pets, our moms or dads, Scooby-Doo or the Minions, skateboarding, surfing, playing basketball – and a deep need to be understood, accepted and to have friends.”

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How a Question That Led to My Autism Diagnosis Could Help the Country

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Growing up there were two great influences on my life. These influences taught me how to live a life of faith, love and sacrifice. 

My father was a military man. He spent more than 20 years serving our country. As a child, I was privileged to travel the world. I am a better man for it. My father’s time serving the nation deeply influenced my love for multiculturalism. Living with and loving other races, ethnicities and cultures was a part of my early childhood development.

My father wasn’t just a military man; he was also a minister. He was equally as serious about being a pastor as he was a soldier. He was committed to doing both with excellence, and, in many ways, his ability to give his life to something greater than himself influenced the way I serve others today.

Although I had a fairly good childhood, I also had a particularly difficult childhood. I struggled to understand people and to make sense of the world around me. But when you move every few years and live in different countries, those challenges are to be expected. It always seemed as if the entire world was in on an inside joke that I just didn’t understand. Despite almost being kicked out of high school my freshman year, I survived. I made it through college. I got married. I became a father. I earned a doctorate degree. Despite all of these accomplishments, I still had an internal struggle I had yet to address.

In 2013, I finally hit the proverbial wall. My self-taught coping strategies stopped working. I came face to face with the reality that the issues I had worked so hard to hide weren’t as hidden as I had once thought. Success didn’t strip me of my struggle. In fact, to some degree, my success seemed to place me at the center of finally having to deal with my internal struggle.

When you grow up the way I did, you learn quickly how to defend yourself. As a child who was often the subject of bullying, I learned to defend myself. By the time I was 36, I had developed the perfect response to every question about me. When people observed what seemed to be a lack of social skills and social awareness, I did what we all do. I denied it. I defended it. I dismissed it.

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After decades of this battle and the burden it had become on my mental, emotional and spiritual health, I took a deep breath, looked myself in the mirror and uttered four simple words: “Everyone can’t be wrong.” Realizing there had to be a reason for these observations, I finally mustered up the courage to take a hard look at what I was experiencing and what people were observing. The result was that I was professionally diagnosed at age 36 with Asperger’s syndrome, an autism spectrum disorder (ASD).

I am in no way making light of autism spectrum disorder. As autism advocate myself, I take very seriously the need to provide resources and support to those in the autism community. It is a cause to which I have given my life since being diagnosed in 2014.

With that being said, I believe that out of all the factors that may have led to my years of living with ASD undiagnosed, I think the biggest factor is my developmental history is a mystery.

We didn’t know what to look for then, so as the years went on the struggles I had were attributed mainly to character flaws or behavioral issues. My diagnosis eventually helped to bring some closure to a period in my life that was very difficult, but it also helped to promote a series of conversations about both my past development and the future direction of my life. As a result, I understand the world around me in a much different way than before.

In a time of social, civil and racial unrest in our country, I believe we have lived with the same silent struggle I had experienced until just two years ago. America has excelled despite her difficulties. She is indeed a great nation. She has grown up and had a lot of success, but she has still struggled and many of her self-taught coping strategies are no longer working.

Perhaps our great nation also has a mysterious developmental history, and the result is a country that struggles to find herself and appreciate both the beauty and the burden of living up to its fullest potential by embracing its ideals and core values that all people are created equal.

As I child, I learned to give my life to something greater than myself. As an adult, I learned it meant learning to listen to what everyone else seems to know about me except me. Eventually, it meant asking myself a tough question: “What do people experience when they experience me?” It’s the question that led me to the conclusion that everyone can’t be wrong.

Yes, I am sure there were people who didn’t mean me well. I am not totally naïve, but I also believe there were enough incidents and enough verifiable evidence to suggest that I take some of their objective observations seriously.

Our country is great, but she has been left to figure herself out for so long that she learned to deny, defend and, in many cases, dismiss the objective observations of those around her. When people of color, the LBGT community, the Native American community, the disability community and immigrants are all making objective observations about what they experience in our country, it has been my personal experience that everyone can’t be wrong.

While I don’t pretend to have all the answers, I do know the value of asking the right questions. My hope and prayer is that our nation, as great as she is, finds the courage to finally ask herself the question that I had to ask myself: “What do people experience when they experience me?”    

In the end, asking that question has allowed me to become a much better man, and I believe if you have the courage to do the same, you can become a better country, too.

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Lead photo source: Thinkstock Images

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