When My Brother With Autism Approached Our Dad’s Casket

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Death is never easy, no matter how old you are. When November 23 of this year comes, it will be 12 years since my father passed away from lung cancer. He was the first one to die in my immediate family.

Making arrangements and dealing with the loss was difficult enough, but trying to explain to my nonverbal, autistic and developmentally delayed brother that my dad was no longer with us was even more difficult. My mother and I were unsure how much he understood about death. We still don’t know.

Some people who have loved ones with intellectual disabilities do not let them attend the memorial service or funeral. My mother and I felt that my brother needed to see my father one last time. We hoped that he would be able to process his death that way.

The day for my father’s memorial service came. We greeted people who knew my father. Some asked what happened and we had to repeat the story over and over again, shedding tears every time. The minister spoke and then it was time. It was time to say goodbye.

My mother, my brother and I approached the casket. We all gazed at my father. Then my brother tried to lift my father out of the casket. It was almost as if he thought he was sleeping and he was trying to wake him up.

My mother and I almost lost it. It was a really touching and sad moment.

To this day, I wonder how my brother is dealing with my father’s loss, but at the same time, I’m worried how he will handle when my mother passes.

All my mother and I can do is put enough supports in place that will soften that blow.

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This Guitarist’s Experiment Proves How Far Musicians With Disabilities Can Go

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On the surface, The Mendenhall Experiment looks like a typical group of musicians. But look a little closer and you’ll notice something about them that’s fairly uncommon for a hard-rock band — Brandon Mendenhall, the band’s founder and rhythmic guitarist, has cerebral palsy.

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Brandon Mendenhall (second from right) and The Mendenhall Experiment courtesy of Brandon Mendenhall

Mendenhall has been playing guitar since age 19 and knew early on that he wanted to pursue a career in music, but as a musician with a disability, he wasn’t sure how to delve into the music industry. “I was getting really into playing guitar, and I realized I’m not going to be able to join just any band off the street,” he told The Mighty. So in 2008 he created The Mendenhall Experiment, a band based in Riverside, California, to see just how far a musician with cerebral palsy could go.

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Via The Mendenhall Experiment Facebook page

Mendenhall has been interested in playing guitar since he was a child, but for years his cerebral palsy made it impossible for him to use his left hand. Doctors told him that pursuing an instrument would just end in disappointment, so Mendenhall’s grandfather actively discouraged his getting involved in music.

“When I was a teenager, I entered my rebellious phase and decided I was going to play music if I wanted to. So I went out and bought a guitar, but I had to hide it from my grandfather,” Mendenhall, now 31, told The Mighty. “He caught me playing one night, and he told me to stop trying because I’d never be a guitarist. And that was the moment I became determined to prove him wrong.”

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Courtesy of Brandon Mendenhall

Now, he’s determined to prove the world wrong by becoming a successful musician in a society that stigmatizes disability.

“The band is exactly what the name says — it’s an experiment to see if someone with cerebral palsy can make a band and succeed in the music industry.”

Six years after The Mendenhall Experiment’s debut, Mendenhall’s “experiment” has proven successful. The band placed second at Warped Tour’s The Battle of the Bands last year and was signed to Lucent Records shortly thereafter, The Burbank Leader reported. They are scheduled to deliver their first album with Lucent this fall. A documentary about Mendenhall, “Mind Over Matter,” is expected to release around the same time.

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Courtesy of Brandon Mendenhall

Mendenhall is attracting attention outside the world of music as well. Last month, United Cerebral Palsy or Los Angeles honored the guitarist with its first-ever Trailblazer Award. “[Mendenhall is] the perfect example of what this award will recognize,” Amy Simmons, UCP Los Angeles’s chief development officer, said, according to The Daily Journal. “He not only had the courage to overcome his physical limitation, he has taken the opportunity to advocate for others who are fighting the way he did.”

That is exactly what Mendenhall says his band is all about. “We want to play good music that speaks to people, but what we’re trying to do is use the band as a way to embrace disability and raise awareness about not just cerebral palsy, but all disabilities,” Mendenhall told The Mighty. “When people don’t understand something, they’re afraid of it. [We want] people to be more inclined to get to know people with disabilities rather than fear them.”

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Courtesy of Brandon Mendenhall

Check out the teaser for “Mind Over Matter,” a documentary chronicling Mendenhall’s story as a musician with cerebral palsy, in the video below.

To learn more about The Mendenhall Experiment, visit the band’s website, Facebook page and Instagram.

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To the Mother With the Screaming Son at Target

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I noticed you almost immediately. We were browsing the dollar section, looking for something to put in the Easter baskets, when I first heard his cries.

What you don’t know was that I had fled there that morning. Constant requests and screams for a “CAR RIDE!” from my own little one had driven me to finally toss her in the backseat, buckle her up begrudgingly and hit the pavement in a cloud of stress and frustration. I was feeling sorry for myself that morning. I was wishing I didn’t have to drive all the way across Snow Canyon Parkway and down River Road just to calm her crippling anxiety. I was wishing she wouldn’t scream, and ask me for things ten thousand times in a row, and I was wishing we could just be “normal” instead.

So I noticed you almost immediately.

Your son was screaming and arching his back and flailing in your arms. I noticed his dark brown hair and beautiful olive skin. I noticed the chewy tube dangling from his neck, the same one we use, and I immediately recognized his terrified eyes and the way his body was crippling and twisting with crushing panic. I could see my daughter in him. I could see myself in you.

For a moment, I thought about walking away. There were already so many sets of eyes on you, and I was sure you were embarrassed to be wrestling your distraught son into a cart while all of us watched in pity. I am sure you were embarrassed that others pitied you. I know, because I hate to be pitied, too.

As quickly as the thought to look away came, it went, and then I found myself walking over to you, placing my hand on your shoulder and asking you how I could help. I told you that my daughter has autism, too, and although I didn’t know if I could help you, I felt the overwhelming desire to stand there next to you, as all those eyes watched, so they would know we were in this together.

You took his arms and I took his legs and we tried with all our might to get your son to relax his body into that seat. While we worked you spoke calmly to him. You were tender and understanding. You called him “buddy” as he bucked up against your chest and screamed, his fists clenched tightly in frustration. I know I didn’t really get to meet your son that day. I know he was lost somewhere inside himself to a place where we couldn’t reach him. I know you probably wished I could have seen the way he laughs at that one scene in “Toy Story” each time he watches it, or his quiet precision as he builds a tower of blocks, and then screams in delight as the two of you knock it down together.

I know you probably wish I could have seen his sparkle. I want you to know that I imagined it instead.

You don’t know this, but the moment you left the store, I burst into tears for you. I can imagine you walking out of those sliding doors, carrying your son across the parking lot with all the dignity and courage your heart could muster, and then, once you were safe inside the drivers seat, I can see you bursting into tears, too. It’s just so hard sometimes, isn’t it?

I wanted to thank you for your courage that day. I wanted you to know that I saw it underneath your quivering chin and fumbled words. I wanted you to know that I didn’t see you as that frazzled mother you hate to be, but as a mother who would do anything for her child. I saw you as a mother who is doing her very best to build a beautiful life amidst tough circumstances. I saw you as a mother, just like me.

Thank you for buckling your son into the car, and wrestling him into the shopping cart, and giving this thing all you’ve got. Someday I might find myself where you were, and in that moment, I will think of stepping forward to stand beside you, and I will know that I am not alone.

Photo credit: Sheryll Lynne Photography

This post originally appeared on Bozy Babble.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Why I Waited So Long to Come Out of the Autism Closet

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In hindsight, I believe I knew that my son had autism just after birth while I was holding him at the hospital. Motherly instincts really do kick in that early.

I became vocal about my concerns to our doctor by his first birthday and by his 15-month checkup, I was asking our wonderfully optimistic pediatrician if he was going to refer me to a developmental pediatrician or if I had to find one myself.

I knew when he wasn’t smiling by the time he was a couple months old. I knew when he wouldn’t respond to his name or loud noises played in his ears but would run clear across my house when the Barney theme song would come on. I knew when he wouldn’t make eye contact with us.

I simply knew.

By the time he was 18 months old, we had seen the top professionals in town and we had been given our diagnosis. The moment after I heard the words “I’m not going to hedge a guess here, I’m sure he has autism,” I cried. I gave him such a great name specifically for business cards and now I wasn’t sure if he would ever get a job.

That was the one and only time I ever grieved for what my son may not become. From that next moment, and every moment forward, I decided to never put limits on him and allow him to thrive and be everything he was meant to be.

Seven years later, we now know how much progress can be achieved and how absolutely amazing these kids can be. I’m not blowing smoke, I am genuinely in love with and obsessed with our son. Over the years I stopped worrying so much about whether he would be put into general education classes or if he would like sports or group activities and instead I embraced and celebrated what he loved to do and what areas he thrived in.

So if I fully embraced who he is, then why did it take me until after his fifth birthday to use the word “autism”? There are a few reasons that caused me to make this decision right from the start.

By the time Nash was 2, other people could see his differences. He wasn’t waving back or replying to “Hello” and “Goodbye,” let alone more abstract questions like, “How old are you?” or “What’s your favorite color?”

The cashier at the grocery store had no qualms about expressing her opinions and it was becoming more clear each day that the secret was out.

But what was the secret?

Autism was my secret. People speculated but I wasn’t ready to share that word. I was very open about his “special needs” and his receptive and expressive speech delays, but I simply did not want to use the “A” word.

For starters, it is shocking how many people still go instantly to the movie “Rain Man” in their minds when they hear the word autism and I hated that comparison. Also, even though autism education is more and more present, many still do not realize that it is a spectrum and that there are so many varying degrees and levels of this disorder.

I felt that if I kept our description vague, then people wouldn’t make judgements before getting to know my son. I also wondered if that might be something he would want to share for himself instead of me sharing it for him.

As my son got older and I came across families that chose to keep their diagnosis a secret, I realized that the compassion other children had for those kids who were “quirky” but not identified, was very much lacking in comparison to those who were honest about their diagnosis.

I knew of a situation where a boy was exhibiting repetitive behaviors by telling the same story over and over and being socially inappropriate and the other kids around him were irritated and judgmental of him. If the other kids had been told that this child was struggling with Asperger’s syndrome, they would have felt entirely different about his behaviors. I know this for sure because of how wonderfully they worked with the special needs population.

I wanted my son to be able to share his own story if he wanted to, so for the first few years I had a hard time even being with other moms who would talk loudly and yell “autism” within earshot of others, in case someone I knew could hear it. It was a rough time for me because I’ve always been extremely open about all aspects of my life.

By the time my son went to kindergarten and I knew that he would he in a specialized ASD classroom, I felt it was time to share our truth. I personally had to ease into sharing our diagnosis because I felt my son deserved a bit of privacy. I also believed that the public knowledge was limited enough that some would believe he was more different than he actually is.

Then it hit me that no one really knows the personality of another person the first or second time they meet them. It was not necessary for him to prove himself to anyone during the first meeting.

By the time he was 6, I was freely sharing his diagnosis with anyone who asked. I now find myself telling people every day that my son has autism. Even when I could simply say that I have two sons, I choose to add the extra information about my son with autism.

I do get the pity look almost every time I share his diagnosis with anyone who isn’t in the special needs community, but I quickly tell them how amazing he is. He is absolutely our blessing, not our burden.

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It took me longer than perhaps it should have to feel comfortable giving my son a public title. I worried about judgement and preconceptions, but coming out was the best thing I could have done for my son and for myself. I met amazing moms who completely understand the challenges we face, and my son is embraced by literally everyone he meets. Kids from school yell “Hello” to him if we see them out in public and his schoolmates volunteer to be his special buddy.

I genuinely believe that if I had stayed in the closet about his autism, he may have been accepted less because the other kids would not understand why he was behaving differently. Perhaps they would have been put off by him instead of embracing him.

I understand why other moms choose to stay in the closet but I cannot express enough how very important it is for the entire family to come flying out and shout it from the rooftops. We are proud of our autism!

A version of this post originally appeared on Birdhouse for Blog.

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I’m a 35-Year-Old Man With Bulimia. Here’s Why I’m Speaking Up.

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I’m sitting in a fast-food restaurant with enough food to feed a family. I’m going to eat the lot. My heart is pounding. I’m excited. In fact, I’m very excited. I’ve been in a state of frenzy since I walked through the doors and the smell of oil and fat hit my nostrils. I know what I’m doing is going to hurt me, but I don’t care. I want to hurt. I want to eat until I’m stuffed. It’s a compulsion. I’m an addict scoring a fix.

I eat quickly, table manners forgotten. I wash it down with huge gulps of soda which helps it all come back up when I purge. For now, though, I just want to eat and eat until my body can take no more.

Like many men, I refused to accept I had an eating disorder for a long time. I have always enjoyed food, and my weight has yo-yoed over the years. I’m 35 now and have only really been comfortable using the word “bulimia” for a year or two. I’m not alone — an estimated 180,000 men in the UK suffer from eating disorders. The full extent of the problem could be even higher because denial and stigma lead the statistics to understate the situation, although in 2011, the British Health Service reported a 66 percent increase in hospital admissions for men with eating disorders in England over the last decade.

I began purging what I ate when I was 16 as a useful means of keeping my weight down after a large meal. Since then it’s become an uncontrollable monster. When I get the urge to binge, nothing can satisfy me until I feel the walls of my stomach stretched almost to breaking point. Purging is a necessary evil, almost a luxury that enables the binge to take place without affecting my waistline. In the moment of the purge, I feel a rush of satisfaction. I’ve beaten the system and gotten away with it — well done, me! Then I’m overcome by emptiness, regret and shame. Later, I get tired and crave sugary food. Sometimes I’ll have a smaller secondary binge and purge on chocolate.

It’s been my little secret for a long time, but I think it’s time men started talking about eating disorders. We need to fight macho stigmas that can ruin lives. Men like me need to be brave enough to speak out on the subject.

Follow this journey on The World of Harv.

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Why I Don’t Want My Child to Be ‘More Alike Than Different’

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My family lives in an uptown neighborhood of Chicago and the area is among the most diverse in the city. Go for a walk in uptown and in an hour you’ll pass both Buddhist monks walking in silence and women in African garb, laughing and calling to each other as they leave church on Sunday morning. Open the door to Starbucks and hear a multiplicity of languages. Walk by renovated Victorians, condominiums, public housing, community homes for the mentally ill, and tents that serve as homes to people who are otherwise homeless.

The community faces many issues, but the diversity is amazing. Coming from a small, rural, homogeneous town and growing up to be an out lesbian, I place a high premium on surrounding myself with differentness. I originally moved to Chicago looking for sameness in a city with a large LGBTQIA community, but have stayed because I love being part of a place with so much diversity.

So seven years ago, when my son was born with Down syndrome, I had many worries – about his health, his education and his adult future. I did not, however, concern myself with the fact that he is and would be different from both me and his peers in some very distinct ways. But, to my surprise and sometimes my consternation, I often experience the Down syndrome community as a place where differentness is minimized. This is embodied in a the often used assurance to people outside of our community that people like my son are “more alike than different.”

In some ways, I appreciate the intent of the slogan. We all, regardless of our differences, live on a communal plain. I can easily and accurately describe my son in terms that any mother of a 7-year-old might use. My boy loves his mamas, his cat and dog, and the circle of people who comprise his chosen family. He likes music and ball games but is less enamored with the complexities of learning addition. He is scared of doctors. He puts a great deal of energy into skirting the rules we set up to govern our home life.

I do see the importance of his peers understanding him in this light and in seeing commonalities that can form the basis of a friendship. As such, my concern with “more alike the different” has nothing to do with its intent to encourage people to see part of themselves in others. Rather, I dislike the juxtaposition of “alike” and “different,” as if one (alike) is desirable and the other (different) is a negative.

I love different.

Exposure to people with differences is critical to a child developing a broad world view. Different is interesting and adventurous.

Let me describe my son again, this time in terms that the mother of a typical 7-year-old might not relate to. My son has only been potty trained for two months. He needs one-to-one help to manage his school day. He has a spoken vocabulary of less than 50 words.

He lives his life in the moment. He doesn’t label days as being “good” or “bad,” each is a mixture of both, and he makes the most of whatever a given day presents to him.

He has no desire for materialism. He has never asked me to buy him something from the store. He is not jealous of what other children have, only curious.

He makes no judgments of other people. When we walk around our neighborhood he does not discriminate between a person dressed in business attire and one who is filthy from having nowhere to wash their clothes.

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Too many people outside of the Down syndrome community see my son only in terms of the differences that are also challenges. I believe this is why so many people trumpet the notion of “more alike than different” – it’s an attempt to quash the stereotype that people with Down syndrome are nothing but amalgamations of inabilities and challenges.

But if I opt out of acknowledging the “different” aspects of my son, I am also ignoring essential positive pieces of his identify. I am discarding the valuable lessons my son has taught me and am also then discouraging others from taking a broad view of what it means to be different.

“Different” doesn’t mean “less than.”

“Different” means that my son has a unique life perspective that has value to people willing and lucky enough to get to know him. He has characteristics worth emulating and challenges that can be eased with empathy. Parsing his identity into ways he is similar and dissimilar to his peers only reduces who he is. Instead of providing unneeded assurances that he is “more alike than different,” I strive to encourage others to take the time to get to know the whole person, to bond over attributes they share with him and to both learn and teach across the differences.

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