Archive | 10:42 pm

The A- Team

18 Jun

An elderly man hurries down a flight of stairs, a packet of medicines in his hand. He stops by the kitchen to get a glass of tepid water and heads to his sons’ room. He opens the lights in the room and picks up things as he makes his way through – a towel left on the floor, a bubble wand thrown under a chair, even a shirt stuffed under the table. He nudges both boys awake, gently calling out their names. The younger boy meekly accepts his medicine, his first in a series for the day, as the older one holds his water ready for him. 

A young man unwraps a sandwich and cuts it into small pieces. He lays the pieces gently into a small plastic plate before handing it over to his younger brother. He wipes his brother’s mouth every now and then and catches falling crumbs on a tray. If he isn’t fast enough, those crumbs are eaten as fast as they are found, even if they’ve found their way to the floor.

The elderly man sits on an old armchair, visibly tired from a whole day of work. It is nine in the evening but his day isn’t about to end just yet. In his left hand, he holds his phone as he checks email and responds in real time; in his right, he holds a towel and clean underwear as he waits for his son to finish his after-bathing “touching” rituals. 

It’s three in the morning. A young man shrieks as the top of his lungs, singing, nay, shouting, his wordless songs. For some reason, he won’t, or can’t, sleep. His big brother, eyes bleary from the lateness of the hour, sits with him patiently as he tires himself out. It will be morning before they even get some sleep. 

This is what every single day is like in my home these long, hard days. And these men are my lifelines to the world. They are my A-Team. My Autism Team. 

Living with a loved one with severe disabilities is not for the faint of heart. Alphonse is 22, a grown, strapping young man by physical appearance, and yet, he remains a young child in many ways. He needs assistance and supervision in almost every aspect of life, from eating to toileting. He needs help asking for things and in getting them. He can’t be left alone for a single second as his compulsions almost always overcome any measure of restraint in him. 

Day in and day out, we work to help Alphonse find peace and joy in this turbulent world. And while I may play a small part in Alphonse’s life, in truth, it is Anthony and Alex who make our challenging lives work. They carry the weight and burden of caring for Alphonse as much as I do, maybe even more. 

Some would judge Alphonse as as unfortunate individual because of his disabilities. I happen to think otherwise. Alphonse, for all his limitations, is doubly lucky because he has the unconditional love and patient service of his father and brother. 

On Father’s Day, I pay tribute to his two fathers, two of the bravest, most loving men I’ve ever known. Would that every child gets loved the very same way. 

“If everyone helps to hold up the sky, then one person does not become tired.”