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.

It’s not fun to say publicly and in legal documents that our son is “incompetent.” It does not sit well with me, at all. But the bottom line is, he’s not ready to be legally responsible for himself, 18th birthday be damned. Unfortunately, there is not much room for “presuming competence” in this procedure.

I do presume it, though. As his mom, I have to.

Even though my son needs our full support right now, and for the foreseeable future, I still aim for him to have his autonomy in any amount that he may be able.

As our son moves into adulthood, we, as a family, will continue provide him “the necessary accommodations and support” as we have always done, and request that others who interact with him do the same.

We will continue to uncover his personal wants and provide him opportunities to do the things that make him truly happy and content.

We will continue to consider his unique needs when we make decisions about where we will live and how he will spend his time in his post-school life.

We will continue to fight for the preservation of Medicaid and the vital services it provides that are critical for our son’s health and future well-being.

We will continue to help him discover something that he enjoys and can contribute as an active member of our community and society.

We will continue, as his “guardians”—just as we have as his “parents”—to provide him every opportunity for autonomy and self-determination so that he “will be empowered to make an even stronger positive impact on our shared future.”





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.

Read More