Letting Go of (Some) Control

If my kid were typical, he would probably have flown the nest by now, and would have the right as an independent young adult to make poor choices, learn from his own mistakes, and realize, at some point, that his mom was right all along.

As it happens, my son is fluffing up those twigs to stay in this nest for awhile. Due to his disability, he needs full-time care and may never be fully independent. 

But that doesn’t mean he shouldn’t have some level of agency to make his own dumb decisions as young adults do. Read More

Getting to Know Him

I’ve been working on setting up some new opportunities for my son, new therapies and other classes he’s going to try out. This always means I am asked to describe him on intake forms and in phone conversations, to explain his “level” of ability, his challenges and strengths, his preferences and dislikes.

It’s a necessary evil, to attempt to distill my son’s attributes and needs down to shareable soundbites. Semi-verbal. Developmentally delayed. Autism. Anxiety. History of self-injury (but better). Understands more than he can say. Can read. Sensory issues. Likes Pixar.

But no amount of questionnaires, recent evaluations, or interviews could ever provide a full picture of this kid, the picture that you need to really “get” him.

You just have to be here. Read More

Talk it Out

You know that feeling you get when you gather with friends or family and swap stories? When you tell and re-tell those crazy things that happened to you, with everyone else nodding and laughing along? 

I wish my son could tell his stories.

You know that feeling when someone you just met tells a story that resonates with you? When you get past the perfunctory “what do you do” questions and hear something familiar that you didn’t expect?

I wish people could get to know my son that way.

And, you know that feeling when a friend or a therapist helps you unpack some troubling experience? When you figure out how to verbalize how you felt in that moment, or what you think it means now?

I wish, for all the world, that my son could share his thoughts and worries.

This is not just a selfish mom-wish to hear his voice. Read More

Stepping into the Next Decade

After our son’s 20th birthday celebration, my husband and I were reminiscing about this emerging adult of ours. I had to admit, though, that sometimes his younger years are hard for me to remember.
I remember all the things we tried and did, how crazy-busy life was, learning how to be parents and then how to be special needs parents.
But it’s somehow hard for me to fully remember him, his little personality, what his language and behavior was like when he was just a wee guy.
I catch glimpses in my memory of a happy, quiet kid—content to watch the same movies and read the same books over and over; to dance with his reflection in the sliding glass door; and to play in the sand in the corner of the playground while other children ran together around him. But I feel like I don’t remember as much as I should.
Then, I happened across this email, written to my girlfriends a few months before my son turned 10:

Read More