Feeling The Loss of “What Might Have Been”

This is an old blog post about me as a parent trying to make sense of the newness of my son’s Autism diagnosis and the resulting grief and loss over “what might have been”.  This picture is from 3 years ago.


An old friend of mine, who is an exercise enthusiast, came to visit me and I brought him to the aerial silks class I teach and afterwards I wanted to know how he liked it and if he had any tips for me. He told me he loved it so much that he was going to try and find an aerial studio back home, however his one suggestion was that I give my students a step by step explanation of what I was going to teach in the class, so that they knew what to expect.

It was a simple suggestion but in all my years of teaching it had never occurred to me to do that. I implemented it the following week and it seemed to have a great impact because many of my students came up to me after class commenting on how it had made such a huge difference for them.

Predictability and knowing what’s coming next is calming and grounding.

Parenting a child is very similar. Kids make transitions more easily if you give them a count down or tell them “first we are going to do this, then we will do that.” In the parent training class that Nick and I have every month, we have learned that the term for this is “priming.” We prime for everything in our house.

We prime Ryu for everything you can think of, “First we are going to have dinner and then bath”, or “first you need to put your shoes on before you can have that toy.”

It makes sense. We implemented this suggestion immediately and saw great results. We felt in control, like “great parents” and put 10 gold stars on our imaginary star chart in our minds.

I often forget that my child is on the spectrum, you probably wouldn’t know unless I told you. There are things undeniably that make him unique from other children his age, but to be honest I haven’t fully accepted the diagnosis of autism, not because I’m ashamed, but simply because I don’t know how.

He’s quirky, repeats phrases, likes to do his favorite thing over and over, and he does interesting things like, mirror your body language to say hello, instead of actually saying hello. And he is also affectionate, and social and empathetic and many other non-spectrum characteristics that leave me with the feeling of just not being sure.

Regardless, there are things we are working on and one of these is communication.

The other day, we were practicing quiet time and I told him:

  1. Stay in your room, 2. I will set the timer 3. Play quietly on your bed 4. I will come and get you when the timer goes off.


I went to the other room and set the timer and did some work around the house. It was 5 min till the timer should have gone off when I heard:

“You’re gonna be in trouble, you’re gonna be in trouble”

I went to his room knowing he had told on himself for doing something wrong, (the rule follower that he is) and opened the door hoping he had not broken anything. Instead I found him pantless, attempting to climb back onto his bed and asking nicely

“Can you wipe me pleeeeaasaasse?”

I looked down and saw a grown up size load on the floor, I swept him up to the bathroom resisting the urge to yell and scream.

To be clear my son is not a poop thrower, or poop enthusiast, so this was completely out of character for him. What he IS, is a rule follower and often keeps himself in check more than I do by telling on himself, or telling other people what they are not supposed to do. And I had told him to stay in his room until the timer went off. I was pissed, but clearly this was my fault.

It hurts my brain sometimes to think about all the things I must tell him to do and not to do sometimes. But that is because, like him, I am learning a new skill and communicating this thoroughly does not come naturally. For instance, I love the phrase “you know what I mean, right?”

But Ryu doesn’t know what I mean unless I tell him step by step what it means. The subtle ways in which we all communicate are skills he must master. We may say hello and the other person knows to say hello back, I ask you to play and then I wait to see if you say yes or no, and then there are more serious things like, we all understand danger, that running out in the street, or touching something hot, or jumping in a pool and not knowing how to swim are things that could harm us. These are things that we must prime for, every day until he knows the script, because this kid is fearless.

Autism or not, I am grateful for the diagnosis that has challenged me to be a better listener and more conscious communicator, and ultimately, a better mother. I take these skills into the bootcamp classes that I teach, in my relationship with Nick and with the clients that I work with, and I count my blessings everyday for this beautiful human being that is my son.