Coleman has recently become hyper fixated on old videos of himself. Billy and I both have a bunch of videos of Coleman on our phones, and one day while we were scrolling through them, Coleman overheard the sounds and came right over. He pushed his way between us and watched the screen closely. I watched his face and a huge smile emerged as he watched himself. Since then, he asks every night for one of our phones.
I sit with him tonight after he asks for my phone and watch along with him. He chooses the same video every time. In it, his face is full and he looks so young. The video shows him watching a DVD and laughing with such a big belly laugh that it makes him smile now as he watches himself. He looks up at me. “That’s you!” I say, wondering if he understands or remembers. He slides the play bar on the phone and replays the video again. I wonder what he thinks watching the video. Does he wish he could be that happy again? Because when I watch those video, I wish he could be that happy again. I look at the date on the top of the phone – it was four years ago. How can so much have changed? Autism and PANS have stolen that laughing, silly little boy from us.
Relatively speaking we are in a ‘really good’ spot at the moment, and Coleman is happy. But it pales in comparison to the happy child he used to be. He laughed so often and so freely, and found so much joy in in simple things. He was happy. But somewhere between then and now, that child has slipped away and the child that remains is changed.
Even in these ‘good times’, he is relatively un-engaged. It seems like he wants to be happy, but he just can’t seem to get there. He asks every night to play a game. And of course we comply, excited maybe that he will hear that belly laughter again. But instead, he is barely present as we play. No matter the game, his participation is emotionless. Even the falling on the floor thing that he used to love has become meaningless for him. He used to beg Billy to fall down and when he did, Coleman would laugh out loud like it was the most hilarious thing he had ever seen. We all pretended to fall from time to time to get a good laugh out of him and it always worked. But that’s gone too. A couple of weeks ago, in a great display of showmanship, Billy walked through the kitchen, pretended to trip and with loud “oohh noooo” and “ahhhh”, fell to the floor in a great heap. Coleman glanced up at him, completely unfazed, as if nothing had happened at all, and looked away without so much as a grin. There was a time that Billy and I would have laughed over that, Billy practically breaking his back to get a laugh and getting nothing from the kid. But this time the moment seemed so much more sad than funny and Billy and I just stared at each other, aching. Missing someone who is gone is hard, especially when they are physically still here.
It’s hard to tease out how much of the change in Coleman is puberty and how much is the PANS. At the recent MGH PANS appointment, the Doctor reviewed some of the lab work we had done with Dr. Bock. He stared at it for a long time before looking up at me. “I have never seen results like this. They are all high, and not just a little high. They are 3x and 4x normal.”
I thought about that a lot over the last few weeks. I wonder if he is in pain, a pain he cannot verbalize but has learned to live with. What would Coleman be like without that inflammation? Would he be back to his old happy self? We have tried several anti-inflammatory meds which are the simplest, least invasive treatment option. We’ve had mixed success. We’ve been lucky to see many good months. But the reality is the pattern repeats, and a flare will send us toppling down again. And each time he goes down, it seems to take a little bit more out of him. And when he rebounds, that little bit doesn’t come back at all. I fear that there will come a day that he won’t come back at all and only a sad, confused child will remain. And that is terrifying.
For now, things are good. We are in the upswing. Coleman is actually smiling and laughing again, even though it is only a glimmer of the happiness he once had. Still, we enjoy these good days, going places and doing things to try to spark some joy in him. We are constantly joking with him. All of us. And being who we are, it’s become a bit of a competition among us, who can get him to belly laugh. I’ll say so far, none us of are succeeding. We are making complete fools of ourselves trying. But we do have the old videos, and if all else fails, we pull those out and his face lights up with a big smile as he watches, and we hear that belly laugh again.
💖💖💖
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