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

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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, 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.

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