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


(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.

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

The Journey of Grief

The journey of grief

Love is essential to the human condition, but to give and receive love also means to be to open to the inevitability of loss and grief. In my work I encounter families who are coping with the death of a loved one, and I have the privilege to help tell the stories and celebrate the lives of those who have passed.

This article is the first of a series, written with the hope that the contents may help in some way to guide and comfort those who find themselves on their own journey of grief. Earl Grollman wrote, “Grief is not a disorder, a disease or a sign of weakness. It is an emotional, physical and spiritual necessity, the price you pay for love. The only cure for grief is to grieve.”

The grieving process is a complex one, however. No two people experience it the same way, or on the same schedule. It is okay to cry, it is okay to rage, and it is okay to feel temporarily numb. It is healing to allow yourself to feel and express whatever complex emotions you encounter. Hiding from your feelings, however, can have a negative impact on your well-being.

Healing can be found at times by being alone, and at times by being with other people. It important to find companions that are “safe,” who will provide support and a listening ear as you process your changing emotions.

Grief can also occur in waves, with levels that fluctuate over time. There will be moments when it comes flooding back with fresh intensity. Tracy, a mother who lost a teenage daughter, suggests than when those waves hit you just “ride them out” until it passes.

Over time it will become easier to cope with your grief, but it will remain, just as your love for the departed will remain. Cassandra Clare wrote in Clockwork Prince, “They say time heals all wounds, but that presumes the source of the grief is finite.” Continue reading

Dancing With Flamingos: A Celebration of My Youngest Son

dancing with flamingos

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


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


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