What It Is Really Like To Have A Child With An Invisible Disability

A few weeks ago I sat with a dear friend in her kitchen. Outside, the sun and the shadows were swirling. The snow melt into the waterfall was loud and resplendent. My friend poured herself a cup of coffee. I watched the steam rise with little bits of dust in the sunshine streaming in through the window. She said something that has stayed with me. I’m paraphrasing. She told me that nothing made her sadder than the fact of how little we see of each other. In childhood and beyond. I thought then of icebergs. We see just the top bobbing along a surface but submerged beneath is, well, just everything. She is right. There is so much we miss.

One of my children has true and life-altering ADHD. As the parent of a child with an invisible disability, I want to tell you what it is like. People don’t see him the way I do. He is the best child. I believe in him with all the force of all my being, and into him, I pour my soul. I have to believe that somehow he will come out on top. For now, though, his struggles cause him to be left out of almost everything. Because of the constant blare and blade of cutting senses, information and the need to keep things straight he misses things and social cues. He concentrates on the one task at hand before it slips away.

There are hidden troves of promise in his struggles. The prison (or the gift, depending on the day) of the white noise he occupies as senses, information, and images fly at him is revelatory but I can’t translate it. He finds beauty turning things over and looking where no one thinks to look. I remember him at a winter festival, where I once saw him standing at the edges of things with throngs of children playing nearby. He held a lantern and a candle and asked someone he loves to see the flame dancing within. His face was all lit up and my heart surged with happiness that he could find that joy.

Still, I can’t tell if he’s lonely or just alone.

And then there is my secret. I am forever isolated with him. Having a child who learns differently isolates their parents in very particular ways. I am never fully in the world. I semi-dread (no, let’s be honest I dread) things like school picnics. I know I’ll see the groups break up and head to town afterward. No one will ask him. At the very moment I arrive at the picnic, I am legit already plotting my escape route. I don’t make plans with people if it means that he has nothing to do. I stay home instead and we enjoy each other’s company, we read books, do things. I personally love it, but that’s not the point. The point is that if he is not fully accepted in the world, I hang back with him. And that is my honor – but is it his? The dialectical of parenthood means that he will always be enough for me – but I will not (nor should I be) always enough for him.

Sometimes parenting a child like this feels one as intense as any love or any grief I’ve ever felt. Sometimes I go into absolute flatness and autopilot where, in a social situation, I can see he wants to find a way in and can’t. Then, I go to what therapists have cultivated in me as safe places. Memories of where I was safe and I let the breath leave me and I kind of exhale me from myself. I am there without being there.

There is little daylight between my son and me. But we are looking down the barrel of the teen years and I’m getting scared. I cry almost every day. I often have clinical anxiety attacks.

But my true fear is more immediate. It is also as inevitable as death. It is the creeping knowledge that I won’t always be enough. As it is, I’m living on borrowed time from this obliging boy of mine. What will happen to him when his mother cannot offer the companionship I suspect he craves on some level? He has a little group of friends I hear about but don’t see. Things aren’t terrible for him. It’s just that I wonder if they could be better.

Parents are strapped for time and cash, and working so hard to get ahead – to be enough. The wells run dry, mine does too. I could do better. It’s only that I get tired of unreturned emails asking to get the kids together. I understand that it is not personal — but it’s hard to remember that, really.

I hope that folks who read this might consider whether they take an active stance when it comes to inclusion. This is a gentle reminder that in the parenting village we are meant to help each other. My child needs help finding his way into groups. When you see someone like me, or like my child, please remember us. Please harness the immense power you have in one small act of kindness.

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