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Now, wait just a minute.

This can’t be right. 

OK, I’ve known this day was coming.

But, there must be some mistake.

Sure, I’ve been talking with lots of people in preparation for this day, arranging for things like “legal guardianship” and “transition” and “adult services.” Read More

Can You Hear Me Now?

It takes a certain amount of skill and creativity to communicate successfully with this kid. We incorporate multiple strategies to explain things to him – simplified language, repetition, verbal cues, written cues, social stories…the list goes on.

But there’s someone who works even harder than us to make that connection. Someone who lives under the daily pressure of being unheard or misunderstood. That’s my kid.

This past Sunday, he gave us a new demonstration of just how tenacious he can be when he wants us to understand him.

He was relentless. This boy was on a mission to explain his needs and persuade us to respond positively.

Unfortunately, this was a case where we already understood exactly what he wanted. The outcome was just out of our control. 

It all started when we had to say “no” to an expected part of his weekend.

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Read More

Your Current Wait Time Is…

It’s your life
And you can do what you want
Do what you like
But please don’t keep a-me waiting
Please don’t keep a-me waiting
‘Cause I’m 
So tired
Tired of waiting
Tired of waiting for you
        —The Kinks

“C’mon, I’m standing here like a doofus waiting for you.”

This phrase, or some variation of it, is said multiple times a day in this house.

My husband and I are the doofuses.

My son is the one we are waiting for. Read More

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