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.”

 

MUSCARELLO

 

 

Not a Bad Word

When I was in 4th or 5th grade, my best friend and I created a list of secret swear words.

These were made-up words, each corresponding to a real curse word—the ones we weren’t allowed to say.

Bad Words-M&R photo

…but we were so cute!

I don’t remember using our secret swears in front of other people, we’d mostly just “curse” at each other and crack up at our clever defiance of little girl rules. It made for endless hours of inside-joke silliness. We even made them into a song. We would belt out this nonsense-word melody while walking to school, confident that no one knew we were actually singing a litany of really rude things. We thought it was hilarious. (Sorry, Mom) Read More

Behind the Curtain

We opened the door to the clinic and knew immediately that this wasn’t going to work. The developmental pediatrician’s waiting room was jammed with parents and young children. Noisy children. I was pretty sure most of them were families in those early stages of trying to figure things out for their newly diagnosed kids.

We hadn’t been to this office in a number of years. We are “been-there-done-that” autism parents now, and it’s been awhile since there’s been anything an autism specialist could really offer us.

Well, until now. Our teenager’s anxiety, and the self-injurious behavior and aggression that stems from it, is our reason for returning, to meet with a new psychiatrist, adjust meds, discuss options, and try to find our way back to calm.

So, yes, we brought our stressed-out kid to a noisy, crowded, unfamiliar office to get help for his anxiety that worsens in noisy, crowded, unfamiliar places. That makes sense. Read More