Toward Autonomy – WAAD 2017

This one stings a little bit.

This year’s theme at the United Nations for World Autism Awareness Day is “Toward Autonomy and Self-Determination.”

The Secretary-General encourages us to “all play a part in changing attitudes toward persons with autism and in recognizing their rights as citizens, who, like everyone else, are entitled to claim those rights and make decisions for their lives in accordance with their own will and preferences.”

It is a call to “ensure that all people can contribute as active members to peaceful and prosperous societies” and for everyone to “make available the necessary accommodations and support to persons with autism. With access to the support they need and choose, they will be empowered to face the key milestones in every person’s life, such as deciding where and with whom to live, whether to get married and establish a family, what type of work to pursue, and how to manage their personal finances.”

And here we are, preparing to demonstrate before our local superior court that our son is in need of our full legal guardianship, that he does not have the ability to make those key decisions about his life, and that we need to be granted the authority to make those decisions on his behalf. Read More

I’m Tired

I’m tired.

I think that’s why this election, this result, is hitting me so hard.

I believed that, in Hillary Clinton, my family would have a true advocate in the White House.

She values and supports families like ours. Her inclusion of people with disabilities at the Democratic Convention and in her platform was not just politics. She is a true supporter of families and of those with disabilities and has been for a long time in her career.

So, I was hopeful that we could have a president who sees us, who hears us. Who “gets” us. Read More

The Man He Was Aiming For

After a police-involved shooting, when you hear the spokesman say it was “accidental,” you might start to feel a little better. The victim wasn’t purposefully shot. It was an accident, a misunderstanding, and thankfully he survived. The policeman didn’t mean to shoot the guy while he had his hands up and was complying with their instructions and lying on the ground. Because shooting an unarmed man purposefully in that situation would be very, very bad.
But, for families like mine, this particular accidental shooting is still very, very bad.

Here’s the part that keeps me up at night (quoted from the CNN report below):

“Please be still … get down … lay on your stomach,” Kinsey says in the video.

The man beside him rocks back and forth.

Charles Kinsey, a behavioral therapist, was accidentally shot because the officer was aiming for Kinsey’s client. His autistic client, who could be my son. A 23-year-old non-verbal man, just six years older than my own, whose actions were misunderstood.

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Puzzle Pieces, Part 3: HISTORY LESSONS

When my kid was eighteen months old, and we were still a year away from the diagnosis that would give a name to his speech delay, I got a head start on disability awareness through a work project.

In the spring of 2001, I was hired as the project historian for a multimedia theatre production based on the writings and reflections of Sam L., a local 56-year-old man with cerebral palsy.

Born in 1944, Sam grew up during an era of incredible transformation for those with disabilities in this country, and his stories reflected those changes. I was brought on to collect information, photographs, and video clips to provide key historical context for Sam’s story. Read More