help, please
We can’t be sure when Adam first realized he had forgotten the wireless controller for his insulin pump, whether it occurred to him as he stood outside the door at school at the end of the day or only after he had climbed in the car to go home, or if he didn’t know until he got ready to eat his snack. We don’t know, because Adam, who besides type 1 diabetes also has autism, either can’t or doesn’t say. But now, as we clear away the dinner dishes, the pump, a disposable device on his arm called a pod, begins to beep; now, as Kevin starts to assemble all the things needed to activate a new pod–insulin vial, alcohol wipe, syringe, the rest of us suddenly realize the mistake.
We piece together this story by way of clues.
“Okay Adam, let’s change your pod,” Kevin says.
Adam swivels on one heel, stopped mid-pace somewhere halfway along the repetitive circuit he makes around the dining table through the living room, popping to glance at my planner on the desk, through the front room, and back to the kitchen. When Kevin calls, Adam always abruptly changes course. The first sign of the problem is this: When normally Adam would plunk down the black bag he wears slung across his lean shoulders, the camera case turned medical device carrier wherein he keeps the controller and all his supplies, instead he pulls his glucose monitor display from his pocket and lifts it in the air toward his dad.
“Uh oh,” Adam says, “it’s looking pretty high.” Adam pulls the phrasing somewhere from his memory, repeats it just the way he recorded it in his mind when one of us–probably Riley, our chirpy Captain Obvious–said it to him. It’s true; the display says HIGH in threatening caps over a blood red drop shape dangerously double-arrowing up, which means that Adam’s blood glucose is not only high but is rapidly climbing higher.
“All the more reason to get your pod changed, then,” Kevin says. “Where’s your PDM?”
PDM is an acronym for personal diabetes manager, that is, the insulin pump manufacturer’s fancy term for the device we need to change and control Adam’s insulin pump. Adam knows the acronym as the name of that device without understanding what the letters represent or what any of those words, save maybe diabetes, means. Adam has been diabetic since age two; I remember the way his chubby baby legs looked bobbing up and down behind the solid, oddly cage-like bars of the hospital crib when he was diagnosed. As far as Adam remembers, diabetes has always been, and now that I consider it, I’m not sure I’ve ever actually heard him label his challenges using that word.
We still don’t get it; we don’t have enough details to add up to anything other than the unusual exchanges we’ve grown used to, but just now, as Adam jams the glucose monitor display back into his pocket (I don’t know if he suspected one diabetes device to be as good as another) and whips around the bar in the kitchen to pick up and proffer Zoe’s PDM in place of his own, we begin to suspect some ripple in the routine.
Kevin and I exchange a glance, Kevin chuckling and turning back to Adam. “No, Zoe’s PDM won’t work. Where’s your PDM?”
I guess we hoped for teenage laziness over other explanations for this uncharacteristic behavior, but when Adam turns again on his heel and flings open the door to the garage, disappearing into the darkness, we know otherwise.
Kevin follows Adam, saying (half to himself), “What are you doing?” I begin flipping through the rolodex of my memories from the afternoon–Adam gathering up a hefty snack, handfuls of things on a paper towel, while I’m cooking; Adam adding the carbs and telling me in that deep, serious voice; me pausing to take note and check his addition. Now that I think on it, I can’t be sure I heard the particular rhythmic tone (our house beeps constantly with medical sounds) that indicates insulin delivery. I had returned to my chopping and stirring and simmering; I’ve grown used to Adam’s independence, at least with pushing the right buttons on the PDM. At supper, we had a similar conversation, Adam and I. We looked at his plate, the steam curling over his food; we discussed numbers–his blood glucose, the carbs. His blood sugar had been elevated then, I remember, but not so much that the number triggered any alarms, and the pump automatically adds insulin to correct. Something had made me pause mid-bite, probably that missing sound, the missing of it finally registering somewhere in my mind.
“Did you enter your carbs?” I had asked, glancing at Adam. He usually keeps the PDM somewhere close but not on the table; I did not expect to see it, and yet, something made me wonder if he had actually given himself any insulin.
“Yes,” he’d said, and only now I think maybe he said it a little tentatively.
I had repeated the number of carbs we counted in question, and he had again replied in the affirmative. But all of that “normalcy” had only been pretense.
Of course, in Adam’s autistic mind pretense doesn’t really exist. He follows steps, and without the PDM, probably only believed that one step to be one he could omit. Unlike Riley, Adam never minds skipping a few steps to finish a process more quickly, but like her, he has no guile and therefore no intention to deceive. He has never really understood the danger bound up in mismanaged diabetes, but he does know how irritated and agitated his parents become when he can’t find his PDM. So, no matter when Adam discovered the problem, it probably only seemed pragmatic to him to keep going through the motions without saying anything. As far as he’s concerned, the fewer the words the better anyway, which makes him naturally reluctant to ask for help. For Adam, this isn’t about vulnerability and pride; it’s about efficiency, sometimes laziness, and the always strenuous challenges of dyspraxia. Dyspraxia, a common difficulty for individuals with autism, makes retrieving words a mental workout. After a lot of painful pushing, that weary muscle just won’t flex.
As a result of these challenges, the years have made me an amateur detective and an expert in Adam. All of Adam’s needs require detection. I have no other way to know when Adam feels sick or needs new shoes or happens to have lost or forgotten something important, and this reality of our lives, this longing to hear my son’s voice, has left me philosophical. I wonder sometimes why those of us who can communicate choose not to do so, why we won’t ask for help, why we leave the most important things unsaid. Why make the people trying to love us solve these endless puzzles? Why go through the motions while the critical things remain lost to us?
Whatever the brokenness in us that impairs critical communication, my life with Adam makes me sincerely grateful to know that when it comes to our needs, God need never resort to guesswork. He doesn’t have to gather up the clues like I do sometimes slowly and obtusely, and his knowledge of us isn’t dependant on the specificity or eloquence of our prayers. I am spiritually autistic; my spiritual communication skills leave much to be desired, but even so, no one will ever know or love me like God. God knows more about what I need than I know what I need myself, and He sees to the needs I can’t express, the longing for which I can’t retrieve words, the vulnerability I just can’t face. So as I put together the pieces of this picture, I can’t help but give thanks that God never puzzles over me.
In a moment, Adam comes inside, his hands still empty. He runs upstairs to his room, his legs beating staccato steps.
“He can’t find his PDM,” Kevin and I say in unison as recognition dawns.
I text our carpool friends and, apologizing for the trouble, ask them to check their car for the missing device. He has on occasion left it on the seat after the ride home. Kevin begins to search the house, looking in all the places lost things go to hide–behind pillows, against the wall beside Adam’s bed. I check the dirty clothes hamper, even the refrigerator. Kevin wanders outside to the trash can to see if the bag slipped in when Adam dropped in another bag. To no avail. My friend sends back a friendly text; they checked the car and don’t see it. I stop short of texting Adam’s teachers. Wonderful people that they are, they will leave their needed rest to drive to school and look, and I don’t want to ask that of them. Fortunately, we began with insulin and syringes; we know how to manage without the pump. But we will have to stow the expiring pod, still beeping like any persistent need, in the outside freezer. Without the PDM, we can’t make it cease its insisting.
“Why didn’t you tell me you didn’t have your PDM,” I am asking, because even though I know why, even though I know it’s hard for him to say, I wish he would try. I wish he could help me love him the way I want to love him. I wish every need he has didn’t require so much guesswork. I take his face in my hands and I hold his gaze, those brilliant, intelligent blue eyes. “We’ll look for it at school tomorrow,” I say, and I let him see in my eyes that there’s grace for mistakes.
He reaches up–relieved that now I understand?–and flicks my ears, which is the first way Adam learned to say, I love you.
