Ali Family Autism Truths #20 – To Just Be Present

April 20, 2015, Autism Awareness Month, Autism Truths #20

He grows sleepy, trying to find a comfortable position in the uncomfortable waiting-room chair as the medicine takes it’s effect. I put his head on my shoulder, but in a few seconds he moves it away. I put my arm around him so he can lean on it, but he shrugs away. D’s never been one to lean on anyone too much. He seeks out foot pressures and back rubs sometimes, but more often he shrugs our hand away.

The sleepiness is coming in waves now, and just as I’m about to go get a technician, the woman comes out to me with the wheelchair. I help him sit in it, and she wheels him off. I wait in the waiting room for it all to be done, hoping things go well, hoping he’s sleepy enough for them to do what they need to do.

We’re at the dentist’s office getting in a cleaning, x-rays and general check-up. In years past when D younger and smaller, our special needs pediatric dentist, a very patient and thoughtful dental technician and I would talk D through check ups, positioning him in my lap so the dentist could do his work. But as D grew and his anxieties grew, it didn’t matter how I tried to acclimate him to the process or how patient the staff was. It became impossible to accomplish.

So, like many other individuals with autism for whom a trip to the dentist is extremely difficult, we now help D get really sleepy before doing the exam. Alhamdullilah, it goes pretty well, from start to finish. Soon enough, we are back in the car driving home. Once inside, I get D to the sofa and get him comfortable. He is still sleepy and a little loopy. I feed him his breakfast and bring him lots of water to drink. I get up to retrieve something else, but he pulls me back down to the couch.

And there we sit/lie together, for the next hour or so — Him with his head in my lap, body intertwined with my legs. Hands sometimes holding mine, sometimes buried behind my back. I rub his hair and stroke his back. Rain kisses on his neck. This is an unprecedented level of cuddling and clinginess from him. There is nothing to do but be present with him. He is burrowing into me, and I feel his warm breath on me. Just stay here with me, he seems to be saying with his body language.

So I stay.

So many times we want to help D. We want to make better that which isn’t. We want to ease his anxiety and pain, give him what he needs and do whatever we can do to make things better when he is upset or unwell. With my other children, when they are upset or unwell, it can also take time to figure out what exactly the problem is and what are the right words or actions to make things better. Sometimes nothing makes it better — only time and our presence. But at least, for the most part, we can figure things out.

But with D, too often there is nothing we can do. When the neurons are firing out of control and he is held prisoner in the throws of a meltdown or terrible anxiety, when he draws upon self-injurious behavior or other things to express his pain and frustration, there is little we can do to stop it. We can only try and keep him as safe as possible. It’s a helpless feeling I wouldn’t wish upon any caregiver. All we can do is be present — let him know we are there.

Be present.

I don’t know who it’s for sometimes – D or me. Does it make him feel better to have our presence there, especially when nothing we say or do helps him through whatever he is going through? Maybe it’s for me. If I can’t sometimes do the fundamental thing a mother is supposed to do — understand what is causing her child distress and help him feel better — then maybe just being present is the best option I have.

The truth is — it can be the only option I have. But I have to believe that it is enough.