People I Want to be More Like in 2016

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Instead of making resolutions this year I have decided to try and emulate some people that I admire. This is a reflection on some of their positive qualities that I think make the world a better place, and I know I would be a better person if I was more like these unique individuals.

I want to feel free to be unapologetically, enthusiastically myself just like my youngest son does.

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They say, “Be yourself, ” and “Dance like no one is watching.” That is what is embodied in this picture. My 4th-grade son is awesome. He is also Autistic. (No, that is not an offensive term. Please read this information if you are unfamiliar with Identity-First language.)

This picture was taken during his older brother’s 5th-grade music performance. Younger brother had seen the performance, complete with choreography, earlier in the day during  a school assembly. By the time the PTA meeting rolled around that night he had somehow memorized most of the songs AND the corresponding movements. After seeing it only ONCE. The unique way his brain absorbs information astounds me! So he sat there in the audience and participated in the performance, singing and dancing right along with the 5th graders. It was AWESOME. He didn’t care what the people sitting around him thought. He didn’t care that he wasn’t supposed to. He just did, and loved every moment of it. And he ROCKED it. I need more of that in my life. I briefly thought about the possibility of asking him to stop in case he was disturbing those around him. I decided against it since he was doing the same as the children on stage, AND I felt it was important that he feel free to express himself. I didn’t want to squelch his indomitable, exuberant, creative spirit that bubbles out of him. It brings me, and others, great joy.

I want to have a heart full of compassion and kindness like my oldest son.

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Continue reading

Autism and Self-Advocacy: Trusting that my son can speak for himself

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My son has been on this earth for over 9 years, and Autism is an integral part of the person that he is. It has helped shape him into a unique individual who perceives the world in fascinating ways. He sees things I would never see. Autism has also presented him with some challenges. I still recall so vividly the first time he asked me, “What is Autism?” I tried to be empowering with my answer but also honest about how it may cause him to have to work harder at some things. The conversation helped him understand himself better and why he feels frustrated at times. He also became excited about his “special brain” (as he calls it), and he has embraced his Autistic identity.

At the beginning of our journey I was the one who spoke and advocated for him. As he grew older we began to tell his story together. One of the ways we did that was by starting a yearly ritual of explaining Autism to his classmates. He and I decided together what we wanted to share. I was so proud of him and his 1st grade classmates when I first watched them have a honest conversation about being different. You are never too young to learn to be kind and accepting of one another!  Continue reading

Autism DOES NOT Create Mass Murderers

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Autism does NOT equal mass shooter. However, the media often includes information in their stories that may lead the general public to make that assumption. Right now the tragic and senseless shooting at Umpqua Community College in Oregon is all over the news, as well as the subject of Autism. For example, the Today show ran a news clip on 10/6/2015 (the day of this post), with the description that “Information about the gunman in last week’s mass shooting in Oregon is emerging, indicating that his mother may have had an impact on his fascination with guns.” Then the first part of the piece proceeded to discuss not guns, but Autism. Here is a link to the clip:

http://www.today.com/video/new-details-emerge-about-oregon-shooters-mother-539317827583

The reporter Miguel Amaguer says, “Starling new revelations about the mother of Chris Harper-Mercer, a shooter who killed nine people at Umpqua Community College last week. For over a decade Laurel Harper, a registered nurse, offered online advice on various medical issues like Asperger’s Syndrome, an Autism Spectrum disorder that she wrote both she and her son struggled with.”

The story also mentioned that Harper wrote of dealing with a “screaming autistic head banger.” Why was that necessary? It then without explanation segued into the portion that was actually related to the story’s description: that the mother’s involvement with guns and the way she exposed her son to them may have possibly helped contribute to her son’s obsession with firearms.

So what was the link that viewers were supposed to make between the “new information” about Autism within the family, and the new information about their involvement with guns? What was Today trying to imply? Why was Autism even relevant to a story that seemed to be about the fact that the mother taught her son how to shoot guns?

It seemed to me to be to be a sensationalistic treatment of Autism, NOT relevant to the story, and disrespectful to Autistic people in general.

Stories like these are potentially damaging and can help foster the fear and stigma that is so often faced by Autistic individuals.

(Update: I did not address the gun issue in this post because this is a discussion about Autism. My point is that the news report purported to be about guns, but then also included seemingly unrelated information about Autism. I am not making any sort of commentary about guns one way or another. While it is an important discussion, that was not my focus here.)

Years ago, while the world was reeling from what transpired at Sandy Hook, best-selling Author John Elder Robison wrote an article for Psychology Today called “Asperger’s, Autism, and Mass Murder.” Speculation had arisen then, as now, that the shooter may have had Asperger’s. Robison is himself Autistic (he describes himself using both terms Asperger’s and Autistic), and warned, “Let’s stop the rush to judgment.” He also stated plainly, “Correlation does not imply causation.”  Continue reading

Autism and the Theater: THANK YOU Kelvin Moon Loh!

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Kelvin Moon Loh is a performer who is currently in ‘The King and I’ at Lincoln Center. The day prior to this post there was an incident with an Autistic* person during one of his shows. His response was amazing, and he actually began a discussion about it on his personal Facebook page. Since some of you don’t have Facebook, and also because THIS IS IMPORTANT, I copied his responses and posted some screenshots here. Shared with his permission.

(*Yes, I said Autistic, not with Autism. I am not being disrespectful, I am simply reflecting the way that an increasing majority of Autistic individuals wish to be identified. If you are not familiar with the identity-first movement I encourage you to learn more.)

Here is what Kelvin’s Facebook post said (screenshot is at the top of the post):

“I am angry and sad.

Just got off stage from today’s matinee and yes, something happened. Someone brought their autistic child to the theater.

That being said- this post won’t go the way you think it will.

You think I will admonish that mother for bringing a child who yelped during a quiet moment in the show. You think I will herald an audience that yelled at this mother for bringing their child to the theater. You think that I will have sympathy for my own company whose performances were disturbed from a foreign sound coming from in front of them.

No.

Instead, I ask you- when did we as theater people, performers and audience members become so concerned with our own experience that we lose compassion for others?  Continue reading

In the Blink of an Eye: Autism and Wandering

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We had a little scare yesterday. I went to pick the Ninjas up from camp and found the littlest Ninja waiting outside the building by himself. He explained matter-of-factly that he was just really ready to leave, so he decided to go look for me. It didn’t even occur to him that he was doing something wrong until he saw how upset I was.

For anyone who has ever questioned why I am so hyper-vigilant with my son, this is why. Because incidents like this can happen far too easily.

I immediately brought him inside to the director of the camp and the three of us had a talk. The director was horrified, apologetic, embarrassed, and very concerned. They had let their guard down for just a second, and it happened in the blink of an eye.

It usually does. Children with Autism can be prone to wandering behavior, and that can put them at risk. Caregivers must put strict measures into place to help ensure a secure environment. Turn your back for just a moment and you could have a dangerous situation on your hands. We want to keep these precious children safe!

In the case of my young Ninja he can be impulsive, distractable, and not have a clear grasp of danger. He is also creative and wonderfully inquisitive and notices things the rest of us do not. Unfortunately that can mean that if he is busy noticing something interesting he does NOT notice if he wanders off or gets left behind. It has happened to me, and it was frightening.

I explained this about the Ninja when we first came to camp, and stated that a watchful eye was needed during transitions. I know from experience that dangerous situations can happen to even the most vigilant and nurturing of caregivers. People often assume that the Ninja functions on a certain level because he is able to be mainstreamed, and can forget that he still requires a certain level of care. He was once accidentally locked outside his school because he was behind a climbing wall and didn’t hear his teacher call the class inside at the end of recess. When he realized what happened he was left pounding on the door, crying and alone. Within a few minutes another teacher let him in, but it left him (and me) shaken.

While I am upset that these incidents occurred I am also grateful that my son escaped harm. I want to help prevent similar incidents from happening to ANY child. That is why I am talking about this. Not to shame or chastise anyone, but to help raise awareness.

When a parent tells you that a child in your care is prone to wandering, BELIEVE them.

I am still pleased with the camp and the leadership. They have been supportive and accepting of BOTH Ninjas. They’re also going to put more strict safety measures in place from now on. Still, when I stop and think about it I get chills. The adult watching the door looked away for just a second yesterday, and that’s all it took. My son slipped out in the blink of an eye.

It makes me want to sleep with one eye open from now on, just to be safe.

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