His World, My World, Our World

It seemed like such a simple thing. Dear Son was sitting in his wheelchair, straining to look around the vase on the table to see the ground squirrel sitting on the edge of my flower pot. I had just wheeled him into the dining room, so I could brush his teeth and wash his face and hands, like I do every morning when I noticed the little ground squirrel on the patio outside. He’s a cute little fellow, who is the first one at the bird feeder in the morning, stealing all the sunflower seeds from the bird seed mix and storing it away for the winter. His antics are watched closely by our cat Wiggles, who sits next to the patio door, for a bird’s eye view of the activities. The ground squirrel is affectionaly referred to as,”Wiggle’s little buddy.”

The ground squirrel has taken a liking to standing on the edge of my flower pot and looking around or sometimes chirping. The cat sits and watches him, with his tail flopping back and forth and Dear Son enjoys hearing me talk about the activities.

As I washed his face, I pointed out Wiggle’s Little Buddy to Dear Son, sitting on my flower pot chirping. His wheelchair had been facing me so I could wash his face and I was moved his chair forward so he could see the ground squirrel.

His eyes struggled to find him and then they locked onto the squirrel and a broad smile broke out across his face. He knew the ground squirrel should not be sitting on the flower pot as he was going to get in trouble. The prospect of someone getting in trouble, is quite delightful to Dear Son. In actuality, no one really gets in trouble, I’ll just talk as if he might. I tell Dear Son that the ground squirrel had better get out of my flower pot or he’s going to get “in trouble.” Dear Son laughs as he knows I don’t like the little ground squirrel dumping the dirt of my flower pot onto the ground hence the smile. He knew I was going to tell him that the ground squirrel had better get out of my flower pot “now”.

It was a simple thing, Dear Son looking out the window seeing the antics of the ground squirrel, but it was more like fifteen years in the making.

When Dear Son was just a baby, I remember distinctly, trying to get him into my world. It was as if there was a giant clear plastic bubble surrounding him where we could see in but he could never see out of the bubble. His world was defined as anything that happened inside the bubble and he tuned out everything that went on in the real world. Probably too much information or too stimulating for a child with seizures.

I remember the early days, when Dear Son was just a baby, lying on the carpet while I read him books. It was frustrating because I could never get through to him. Sure I’d love him and care for him but the reality was, that he never indicated that he was aware of my activities. I grew frustrated and knew I had to figure out a way to connect with him. I began to read him books, in a sing song fashion, always high pitched of sorts and with the same cadence every time. It was often more like a poem or a song than a book. Each book having it’s own tone. I loved rubbing Dear Son’s little feet, removing his socks as I read him stories. On one particular day, I was reading Dr. Seuss’s Foot book to him and I decided to put in his name and referenced his feet. Prior to putting in Dear Son’s pet name, I changed the cadence ending in a sweet sing song voice with the words, “even Dear Son’s feet.” As I said the words, I grabbed his feet and rubbed them and rocked them back and forth. I read this story over and over and over again, night after night. I would spend hours sometimes reading to him, maybe an hour or so at a time. On one particular night, right before I got to the part about Dear Son’s feet, he made a face indicating that he knew what was coming next, the part where I grab and rub his feet. I don’t remember now if it was a smile per se or just his face lighting up but I remember the fact that he was anticipating what was coming next, the rubbing of his feet, and I knew then, that he had memory. That was huge.

With that information, I continued reading to him but also talking to him a million times a day, about just about anything. But the one thing I could never get him to do was to pay attention to things visually, it was always auditory things that he attended to most, mainly my voice.

As the years went on, I remember trying to get him to pay attention to the things around him. If there wasn’t any interaction, he acted as if he didn’t know it was there. I remember distinctly our mallard ducks, Dolly and Donald, that came to our bird feeder every day. They sit right outside our French doors, eating the bird seed, with Dear Son sitting and leaning against the window, his nose pressed tightly against it, and yet, he never even noticed them. I would point out the ducks and talk about the ducks, but when I would call his attention to something to look at, he never acknowledged it.

Over the years, it never changed. There was his world and my world. Most of the time, he would be in his world, tuning out all of his surroundings. It was odd in so many ways, that he would just tune so much out. I always viewed it as sensory overload even when his seizures were well controlled. I would be frustrated at times, with his inability to connect with the outside world, wondering just how I might get through.

Over the years, you could see glimmers of light. When he was four years old, he enjoyed the Christmas tree at school. He seemed to like the bright lights or more importantly, trying to pull on them. He’d reach and reach trying to get those arms and hands that weren’t functional to work. At some point, his crippled grasp would get entangled with the lights. This was success of course.

These were brief pockets of course, reaching out into the outside world or my world. Most of the time, he’d be oblivious to his surroundings, not noticing a thing as I wheeled him onto the little school bus each morning. I always wondered how I was ever going to get through to him and if he’d ever really be present in our world.

Bit by bit, over the years, he began to come into my world. Looking back, I’d have to say the turning point was probably daycare. When he was nine, I moved to a new area and had daycare for him. The kids were much younger, mostly two to five, and he was the only special needs child they ever had, but it did wonders for him. Soon the outside world, full of the antics of the other children, invaded his world. The kids fed him snacks, they played with him, they talked to him, they held his hand. They went where I could never go and made him want to be in our world. He was especially delighted when things went wrong at the daycare, the more chaos the better and if someone was getting scolded, all the better. He loved the prospect of someone getting into trouble. The daycare owner, in her slavakian accent, would tell the kids not to do something, and Dear Son’s eyes would light up, at the prospect of them getting into trouble. Sometimes, he’d laugh so hard, that the owner and all the kids would start laughing and he managed to turn the whole mood into one of laughter. That’s the kind of kid he was.

So while it seemed like a simple thing, looking out the window at the ground squirrel sitting on the edge of the flower pot, it was huge. No sooner than he looked, the ground squirrel jumped off the rim of the flower pot and ran as fast as he could into the yard. Back into his world. And as for Dear Son, he stayed in ours. Sometimes, the simple things, mean a lot.