My son is six. He still needs me to prompt him to use the toilet or he doesn’t go. I want to watch a movie, even a children’s movie. He cannot sit still or pay the least bit of attention to any children’s movie other than Cars 2 for longer than 10 minutes. Right at about 17-18 minutes into Cars 2, he is fully running around, talking, asking questions, engaging in loud echolalia, and leaving to play with toys, although we did make it through that one – twice.
I watch very little grown up television (I have been able to sneak in some Food Network, House Hunters, and a glimpse of the Olympics). I have no idea what movies have been released on video, have never used NetFlicks and have no idea what’s been on the big screen in the last six years because he is with me 24/7 except for a few hours when I try to accomplish some work as an attorney.
There are no trips, no vacations, no travel. There are no community events. No fairs. Maybe 6-10 family outings a year, lasting no more than a couple hours each.
If I want to cook, something comes up half the time. Most of the time, I rush the meal, or give up because my son decided it would be a good time to use the restroom. Other times, I will be doing laundry, dumping garbage or other glamourous duties when he announces he needs help with his Wii, batteries changed on a toy, or he cannot find something, all of which will trigger a meltdown if I do not drop everything and help him. Sometimes I do. Sometimes, I let him work through it. Sometimes, this works. Mostly, it does not. He melts, recovers and follows the exact same course that led to the last meltdown.
I get him dressed and undressed. I have to because if left to his own devices, he puts both feet in the same leg of his pants, shorts and underwear or sits naked for an hour with the clothes next to him while he plays with a toy. He has difficulty pulling shirts over his head because he tries to use the arm hole as the head hole. He has a 50-50 chance of getting the clothes on backward. If he puts shoes on by himself, the heels are tucked under and cut into his feet or they fall off and he falls, injuring himself. He cannot do or undo a button or tie his shoes.
He will tell me he is hungry or thirsty, but if he gets something on his own, he almost never closes the fridge and even then, I must open containers or break pieces of whatever limited food he will eat. I will go in the kitchen three hours later, only to find the fridge door wide open.
I brush his teeth, supervise the washing of hands to assure the soap is on and then off. I dry his hands and comb his hair. I choose his clothes and administer the nine regular medications and vitamins he takes every day. I bathe him. I would never even consider leaving him alone for a second in the tub. He is too clumsy and unaware of that danger.
I assure he eats and drinks. I wipe his face and clean his boogers. I keep him entertained. I pick up after him. I read to him. I educate him. I drive him from therapy to therapy. I hold his hand in parking lots so he doesn’t walk into a moving car while staring at the Viper parked at the other end. I open and close heavy doors for him.
I talk to him. I decipher what his needs are by reading his body language and keep a constant vigil for things that could cause illness, danger, meltdowns, fear, or sadness.
There is no one to talk to about these things. My husband thinks all this should be “standard” wife and mother stuff. I have no friends who are going through similar situations to share their wisdom. If I look around, certainly, there are friends. No one though to talk about the common experiences that make up my daily life.
Except for here, in an electronic universe of words, where other mothers like me, get it. They understand the devotion, set backs, trade-offs, long-forgotten careers, and the daily sacrifices. We listen to the same sentence 113 times in a row and then when we hear sometime new, unrehearsed, we cheer. Oddly, that is more heart-warming to me than hearing it out loud from someone I know.
I had to throw a party this weekend. Even though my mom was just barely out of the hospital, I could not back out. Everything had been ordered, paid for – done. It was for my husband’s birthday.
People were in my house. They were nice. They were friendly. I spent most of the time, chasing my son, responding to his requests for attention, calming him. I was literally alone in a room full of people. And though the party was okay, those people in my house don’t “get” it.
Those who “get it” are people I’ve never met. People I have learned to care for through stories on an electronic medium that unites us. It’s what helps me survive. Because for the “in real life” part? It’s just me and my son. My husband is with us – maybe- if I added it all up, an hour a day. And though I love my son to pieces, I cannot talk to him about his echolalia, how tired I am, how much I worry, and what I should do about his behavior.
I am fortunate in many ways. I know enough to be grateful. But, most of the time, I am just, plain alone.