I wrote this post on Care2.com about 20 year-old Bryan Nevins who died last Saturday after being left in a locked minivan by two caretakers at the Langhorne, PA, residential center where he had lived since he was 14 years old. Bryan and three other Woods Services residents had gone to Sesame Place, an amusement park in Pennsylvania. (We've been there with Charlie once.) Last Saturday was sweltering here on the East Coast. A coroner said that temperatures in the minivan, with windows shut and doors locked, would have reached 125 to 130 degrees Fahrenheit in an hour. Bryan, who was non-verbal, was found lying down in the backseat.
Yesterday, disability advocates protested at the Woods Service building: How could those two caretakers not have realized that Nevins was still in the minivan?
How, why, what the.
I've had Brian and his family on my mind since I read about him Wednesday morning. Threaded through my thoughts was the question: If Charlie were in a similar situation, would he try to get out? Would he rap on the windows, try to break a window? Call out or otherwise raise a ruckus? Or would he remain buckled in his seat as he knows he is supposed to do in the car, assuming that someone would come to get him?
My first thought was that Charlie would try to get out.
Then I realized, terribly, that I'm not so sure.
Charlie is often ready and wanting to go out before Jim and I are, and will (after asking) go to sit in the white car in our driveway. He routinely shuts his door. Because there have been times when various items have been defenestrated by Charlie (while the car is on the road), and when Charlie has attempted to open the door of a non-stationary vehicle, we still have the child safety locks on for both back seat doors. But what keeps Charlie safe while the car is in motion could also, it occurs to me, prevent him from getting out of the car to safety, when the car is parked and locked. Charlie has figured out that, if he's in the backseat, and no one is in the front seat, and the car is off, he can climb into the front seat and get out via either of the two front doors.
But really, I don't know what Charlie would do should he ever (and we're not going to let that happen---and I'm sure Brian Nevins' parents said the same) find himself in the terrible situation of being locked in a car and no one around. Charlie can talk and he does ask for help in certain situations (if he's not sure how to open a container of food). But he doesn't usually raise his voice loud enough so that he could be heard in a different room, and he only sporadically goes to look for us if he needs help and we're not nearby.
From all this, I'm reminded for the gazillionth time, we never can be too careful when it comes to taking care of Charlie and certainly when it comes to who are Charlie's caretakers. I actually can tell when Charlie is asking for help to open a jar if he's in the kitchen and I am, say, upstairs putting away laundry, based on the thumps of his feet and what doors (cabinets, refrigerator) are being opened and closed. But I can tell this because I've spent so many years learning to listen for Charlie, learning his particular ways of communicating. Jim and I have spent one moment after the other checking to make sure of Charlie's whereabouts: Since he was born back on the 15th of May in 1997, I've never not known where he is.
We'll keep working on teaching Charlie to learn to ask for help; to go to find someone to ask, if he's alone. These are the sort of skills that are especially challenging to transfer to real-world situations. Charlie can know what to do to get himself out of trouble in one situation, but not in another.
It's another reason he favors familiarity, and that we seek to help him deal with new situations and, too, with small twists in his routine.
One routine that Charlie has gotten into is after-school snacks then a bike ride. Thursday evening Jim was to visit a friend's American Studies graduate course to speak, and asked Charlie if they could ride bikes soon as they came home. Charlie assented: As Jim said to me later, right now riding bikes is Charlie's main thing.
After they came back, Charlie and I zipped Jim over to the train station. We spent the next few hours engaging in said snacks, taking a long walk, and using the computer. With more than an hour remaining before Jim would return, Charlie asked to go. I set the timer and he stood for over a half-hour in our living room, looking at the changing numbers. After that, Charlie insisted on the car and I did a little hemming and hawing. We drove to the train, Jim texted me that he would meet us at the local carnival (where Charlie was wanting to go) and thereto I drove. We saw Jim just after we had parked the white car. Charlie was a little more anxious but, after getting in his customary three rides, was ready to go home and listen to some music and go up to bed with a smile.
He most certainly had not wanted to wait for those rides but he did.
And, I had actually had set the timer for an hour, but Charlie was fiddling with it and set it off somewhat earlier---a hopeful sign, perhaps, that he'll take the measures he needs to?
Maybe. In the meantime, we're certainly trying to do all that we can, to take the best care possible of our boy. It's not easy: It's something we embrace every day, and with all of our hearts.
Thinking and thinking, and thinking, about Bryan Nevins and his family.