115. Self


We took a very grown up decision today. So much of special needs parenting is way too much adulting, but then it is also a daily life filled with everyone’s inner child being on call all the time.

But today was difficult and grown up.

Up till recently, making decisions for A was challenging, but we pushed through by telling ourselves that he was too young to thrive without our assistance.

Now, though. Adolescence and free will and the need to participate in your own life path start to add layers to the process.

With kids like A, how do you find ways to factor their wishes in meaningfully, when their focus is mostly narrow, and targeted to the immediate?

I am going to say something deeply personal here. If you are generally uncomfy with personal things, feel free to stop reading.

At times, I have felt paralyzed by the weight of this responsibility. Angry, too. I want my kid to be able to tell me profound things. To understand that his wishes matter. To make choices like soccer or baseball. To have people to do those things with. Most days I don’t mind meeting him where he is, but sometimes where he is is a place I cannot join him in peace.

It’s not his job to take on that kind of parental self doubt, though. And this journey takes parents like me well beyond the constraints of what popular culture portrayals of special needs, or admonitions about self care can encompass. If I am to do justice to the child who will never not need high levels of intervention, then inward is where I need to delve to find the treasures that will yield a lifetime of hope and resolve and stamina.

This is my little expression of gratitude for professional mental health help. It is a strange process, and not a comfortable one. But it has helped me be more accepting of myself. Give voice to anguish. Face wrenching truths. Heed the messages in my own heart.

We are none of us flawless beings, but we can learn to trust our deepest instincts, release some of our most profound terrors, and be guided by our own imperfect illumination.


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