The Incredible 10-year-old Advocate I Met at the Sprayground

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(Description of top image: A young boy with brown hair and a smile on his face leaning his head lovingly against his mom, who has awesome purple hair and is wearing a “Panic! At the Disco” shirt.)

This is what advocacy looks like. I recently had the privilege to meet this exceptional young man who is going to change the world. Actually, he is already changing the world.

It was a hot summer day so I took my two children to a local sprayground. We brought some toys to play with in the water, including a bright beach ball. My youngest son and I tried several times to get the bach ball to float on top of the water jets that came out of the ground, but we weren’t having much luck. Another little boy came over and started trying to help, striking up a conversation with me in the process. His name was Xander. My own son got bored and walked away, but my new friend and I kept trying, laughing at each failed attempt. Finally, after several tries, we accomplished our goal and let out a cheer.

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Image description: An orange and white beach ball that is being held above the ground by the jets of water beneath it.

Soon after we were able to get the ball in the air, however, Xander’s little brother knocked it down. He obviously enjoyed manipulating the water flow and watching the ball fall to the ground. Again. And again. And again. His fun was different from the one we had in mind, but he was still having fun.

His repetitive, single-minded behavior seemed familiar to me. What was even more familiar was the fact that he was so focused on what he was doing that he didn’t seem to his hear his older brother when he protested, “Stop!”

“Sorry about that,” Xander apologized, “He’s ADHD.”

I braced myself for what was going to come next, because I mistakenly thought that he was about to disparage his brother and his behavior. As the mother of an autistic child, and as a neurodivergent individual myself, I get sad when I hear family members talking down to or about their loved one.

I shouldn’t have worried.

Xander continued talking, “He’s not a bad kid, he’s just ADHD. He doesn’t hear me when I talk to him. Well, he can sometimes hear me, but he processes differently. He’s, like, a Windows phone in an Android world.”

“I get it!” I replied.

“You do?” Xander asked, incredulously. “I’m glad you get it. Some people don’t understand. They think he’s a bad kid, but he’s just different. There’s nothing wrong with that, though. But one time some people called the police on us. They don’t get it.”

Other people may not “get it,” but it was obvious that young Xander did. It was also obvious that he was being raised in a household where acceptance was actively taught. I stood there listening to him wishing I had a photographic memory. I wanted to remember exactly every word this remarkable young man said to me. His way of speaking about his brother was so incredibly heartfelt and supportive that it made my heart and my eyes swell. I was amazed that he had the bravery to talk to an adult to explain and support his brother. He cared very much about making sure that I understood his brother and didn’t judge him unfairly.  Continue reading

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Dancing With Flamingos: A Celebration of My Youngest Son

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Parenting my youngest child has been quite an adventure. He is funny, kind, smart, creative, exuberant, and autistic. Every day, it seems, he teaches me something new. His unique perspective on the world is often surprising, and the way he fully engages with whatever experience life has to offer is a constant delight.

Something that happened during a recent trip to the zoo is a perfect example. We were watching a flock of flamingos when suddenly they all began to vocalize at once. It sounded like a bunch of noise to me, but I noticed that my son had begun to move. First he bounced, and then he was dancing; feet shifting, arms outstretched. He instinctively sensed the rhythm and the music in the flamingos’ calls to one another, and he couldn’t help but join in. His body demanded it, and he gave himself to it freely and joyfully.  It was beautiful to see.

My son dances quite often, no matter where he is or who is watching. His big brother asked him once, as big brothers do, “Why are you dancing?”

My youngest simply replied, “I do what I want!”

He often operates on pure instinct and emotion. Continue reading

Holocaust Remembrance and Nazi Eugenics

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Many years ago I had the privilege of meeting a Holocaust survivor during a chance encounter in the store. She was a gracious, gentle woman who had been imprisoned as a child. The numbers on her arm were a painful reminder of the dark acts of which humans are capable.

What stayed with me the most was that the hand-inked numbers on her arm started out uniform, but then became more and more uneven and jagged. My heart wept as I pictured that small child fighting against the torture of each new number with increasing intensity. It broke my heart to know that someone so young had experienced such horrors.

When I became a mother those images took on new meaning. I learned that Nazis not only targeted Jews, but also waged a eugenics campaign against those with disabilities. The evils of the Holocaust somehow seemed even more horrifying with the realization that my own child could have been a target.

Is he more safe in today’s world than he would have been back then? Is society more accepting, more caring, more unified?

Let us strive to be better. Let us not forget the evils of the past, or we risk making the same mistakes again.

I reflected upon these things when I first wrote a post about that life-altering encounter, and I thought it seemed appropriate to revisit on Holocaust Remembrance Day :

On this day I stop to remember, and ponder, and listen. I reflect upon the atrocities committed by a group of people driven by greed and a lust for power, blinded by prejudice. I pause to hear the voices that cried out, yet were silenced too soon. I will not forget them.

Many do not realize the expansiveness of the list of groups targeted by the Nazis. It included not only Jews, but also “Gypsies, Poles and other Slavs, and people with physical or mental disabilities.” During their quest for racial purity the Nazis strove to eliminate the “unfit” as well as any who would oppose their quest for domination. Continue reading

Why Some “Good Deed” Stories Can Do More Harm Than Good

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Another day, another “feel-good” story. But what if these stories actually do more harm than good? Before you judge me for being cynical, let me explain.

What often happens is there is a person who has some sort of disability and they might also need some assistance. Then some “typical” person decides to be kind and help them. Usually that’s fine. Great even. We should reach out to our fellow humans. The world needs more genuine compassion and caring.

Sometimes a third-party happens to witness the scene, and interprets it as the grand gesture of an amazingly generous individual who took their time to help out a poor, pitiable and helpless disabled person. Then pictures are taken without asking the permission of all the parties involved, because they want to spread the amazing, feel-good story throughout all kinds of news outlets and social media platforms. Still sound great?

There is nothing inherently wrong with positive stories about people with disabilities or tales of good deeds. It’s the motivation behind it or the way the subject is handled that can be problematic. Sometimes the individual performing the good deed or telling the story does so with motives other than just being kind to someone else; sometimes they do it for notoriety.

In other cases I don’t doubt that the overall intention of the story tellers was good, yet somehow things took a turn. Often that is the fault of the tactics used by the media, who love a heart-tugging, viral story. News sources often spread these “feel-good” messages at the expense of the dignity of their subjects, presenting the person with a disability as merely a pawn in someone else’s story. It is designed to make US, not them, “feel good,” and praises and elevates the person performing the “good deed.” These stories do all that at the expense of the recipient, often without their consent. Stories like this are commonly referred to as “Inspiration Porn.” Continue reading

See Different, Be Different: Thoughts on Neurodiversity and More

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I was recently asked to speak at at Autism Awareness Month event that was held by the exceptional education department of our local school system, and the audience was parents of autistic children. This is the transcript from that event, and is basically most of what I want to say about autism and neurodiversity all crammed into one post. But first some disclaimers: I am not perfect, I screw up all the time, and am still fumbling my way through this parenting thing.

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I am also not an “expert,” nor am I Autistic* (see update), although I am neurodivergent. I am a mom and an advocate and a writer,  and I learn through experience, by asking a lot of questions, and by doing a lot of research. (*UPDATE: A few months after I wrote this post I was unofficially identified as on the spectrum by a therapist. In my FORTIES. It was based upon her observations rather than diagnostic testing, but nevertheless it was a revelation.)

My perspective may also be different than yours, but one thing I have learned along this journey is to not devalue someone else’s opinion just because their situation isn’t the same as my own. We should be open to considering one another’s viewpoints. We also should avoid the danger of turning this into a competition of whose struggles are worse, and unfortunately we have all seen that happen.

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(Image is inspired by the post “20 Things That Parenting a Child With Special Needs has Taught Me About Life in General.”)

We ourselves may have fallen prey to the dangers of comparison, by saying things like, “Well, at least your child can…”, or “You don’t know what it’s like to…” Friends, let me warn you that kind of thinking is a trap. Parenting is hard, I know that. Some days are exhausting and even sad. Life in general can be hard, and living with any sort of disability can be hard. But we are all in this together, and no matter where we are, or where our children are in the journey, we can learn from one another. Then when we get weary we have each other for support.

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One way I try to help encourage other parents and support the Neurodiverse community is by writing and sharing my voice. I hope to help make the world a safer place for those who are different. I want to help de-stigmatize DIFFERENT. Because without our differences, the world would be VERY boring. Different is the new normal!

So I came up with the slogan: See Different, Be Different (image at top of post). Different is not bad, it’s not broken, or as Temple Grandin says, different is not less.

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Continue reading