To that “Other” Mom at Zumba

Dear Vigilant Mom at Adaptive Zumba,

I was watching you in Zumba class and I hope you don’t mind if I offer a bit of advice. This class will be really great for you and your son …. if you could just chill out a little. (No, this isn’t a critique of your dance moves, that’s for another letter.)

I bet you heard about this fun cardio-fitness class offered by a local parks and rec adaptive program from other parents whose teens/young adults attend. I’m sure it took you a few months to get up the nerve to sign your son up, because you just never know if he’ll like it. But the once-a-week class is less than 20 bucks, right? So, you gave it a try.

I heard you tell the instructor that your son has never taken a class like this before, but I could tell from the first day that your kid really likes being here. Oh, I know there was some anxiety at first, since he (and you) didn’t know what to expect. But it was clear by the third class, he was so happy to be there. I mean, of course he was. Upbeat music. Repetitive movements. Welcoming instructor. Enthusiastic peers. Wall-to-wall mirrors. It’s like Zumba was made for him, right? It’s a dance party in here.

I watched you encouraging him to follow the instructor, and showing him the steps. You were so happy every time he started to move his arms or legs (but usually not both together) to follow the routine. He truly has such good rhythm! But he’d only move for a few beats and then pause to stand and watch or spin those beads. You seemed a little disappointed when he stopped dancing, and I could see that you were struggling to find the right balance between insisting he dance more (“I know he can do this!”) and letting him do his own thing. Read More


Hello, 2018

At first glance, it doesn’t seem like January 1, 2018 is all that different from January 1, 2017 for us. We’re still plugging along on all of the same things, still working the same issues, still in familiar places and routines, scripting the same old movies.

But, in reality, life has shifted quite a bit from this time last year.

This time last year, Read More

Building Skills

We’ve been focused for many years at school and home on increasing our son’s independent “life skills.” But with the end of traditional school looming ever closer, we’re even more aware of the importance of teaching him how to do things on his own, helping him find success in completing daily tasks, and in being as independent as possible. 

 In turn, I have to learn how to get out of his way.

As I’ve said before, I’m fully aware that my kid has “mom-enabled” deficits. I try not to do too much for him, but I don’t always succeed. Sometimes it’s because we are rushing to get somewhere and it’s easier for me to just DO all the things. Sometimes he is debilitated by anxiety and inability to communicate, and I’m doing what I can to lower his stress, which is clearly not the right time to add in a skill lesson. 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