Wednesday, May 12, 2010

Go Ahead and Scream. The Neighbors All Know What You're Like

Grandma had dementia. Or perhaps she was mentally ill. No one ever said. But she was definitely "troubled," as people so quaintly say. I don't know what life was like for her in the old country. I would guess she saw some really horrible things. Ukrainia is known by Jews as the "Anti-Semitism Capital of the World," and so it wouldn't surprise me if she witnessed pogroms firsthand before embarking on a boat headed for Ellis Island. I'll never know for sure.

Grandma was not unkind to me, but she definitely did not conform to the kindly grandma stereotype. Her apartment was not kid friendly. It was barely anyone friendly. Plastic covered everything. The carpet. The couch. Everything. She kept everything spotless. Whenever we visited there, I never knew quite where to sit. I didn't want to sit on the couch. I used to sort of wander around the living room and the sunporch, not sure where to really be. Grandma actually did some nice things for me. She gave me a stuffed dog. I used to make up a voice for him, and we used to have some good conversations. A few years later she gave me an old transistor radio. I used to lie in bed and let that radio take me all over.

On Friday afternoon Grandma would call and say in her heavily accented English, "I'm lonely. Come and get me." We would drive across town and pick her up. Every weekend she would sleep in the spare twin bed in my room. I really didn't want to have to share my room. I wanted and needed my room to be my haven after a week being teased and bullied by school kids. I didn't know how to speak up for myself. I knew implicitly best not to complain. On one hand I was curious about her. She was my grandma and I wanted to know about her. On the other hand I wanted to protect myself from her. I used to do silly things like give myself cootie shots. One time I tried to rig a string that would, in theory, turn the swag lamp on when she opened the door to finally go to bed. There wasn't enough tension in the string to trip it.

Grandma wasn't a bad roommate, really. Despite seeing her teeth in a glass and seeing her in her union suit, we had some companionable moments. What I didn't like was when she would get into arguments with my dad. I also didn't like how she would go around spraching in Yiddish, and I didn't understand what she was saying. "What'd she say, what'd she say," I'd ask my mom. "You don't want to know," my mother would respond. But I did want to know. Gave me a great deal of anxiety not to know. Many years later I found out she was accusing my father of being a thief, among other things. Confirms for me, in retrospect, that she did have some degree of dementia. No one in their right mind goes around accusing others of thievery. And who knows what else she said.

One Sunday my grandma, my father's mother, embarrassed him in public. Not much of the public around, being a cool spring day and only a handful of people looking at the model homes we had driven out to see, but he had had enough of her outbursts. As we were exiting one house and on the way to the next, my grandma, who had chosen to stay in the car, called out to him that she did not come to 'babysit your car." We left for home posthaste.

Once back at our house, my dad grabbed her suitcase and started furiously shoving things into it. My grandma decided she wanted my mother's raincoat despite the fact she was too large for it. Despite my mother's protests, she was determined she was going to wear it somehow or other. I am not sure what happened next, but, before I knew it, my grandma had my mother pinned against the wall. I could barely speak up, but I managed to tell my dad what was going on. He tore her off of my mom, and he and my mom hustled her out the door to the car. Grandma held onto the doorframe with all her might. She was daring my mother to push her into the car. "I'll scream! I'll scream!" she said. My mother responded, "Go ahead and scream. The neighbors all know what you're like." And, with that, she docilely entered the backseat.

I wish I could say "go ahead and scream," to Kid O when she screams and either kicks furiously or turns herself into the Human Board. But I cannot. When she refuses to cooperate in getting into her carseat, all I can do is summon up all my might and pick her up repeatedly until I finally managed to get the buckle to snap shut. Then Kid O can scream all she wants. And I can sit there and catch my breath. She does this whether or not there are onlookers. She even did this on one occasion when we were giving her cranial sacral therapist a lift back to his apartment where his broken down car awaited him.

One time after an appointment with him, she put up quite a fuss. I thought maybe the fella nearby could help me. But, see, he thought she had a spinal injury and I was forcing her to bend. In his accented English, he kept telling me that what I was doing was bad. After I got her into the car and her wheelchair tossed into the back, I thought perhaps it might be good to approach him and explain what the situation was. Again he told me that I was doing something bad. And I could see from the looks on his wife and children, they thought so, too. It was then that I saw the wife's cellphone by her side, and I knew it was best to leave. Right then a squad car came by. At first I thought they were going to roll by, but then they stopped.

The one police man got out. He asked to see both Kid Q and Kid O. I opened the van so he could see in. "Which one is in the wheelchair," he asked. So I pointed to Kid O. "Did you hit her," he asked. "No, I did not," he responded. Satisfied with that, he let me drive off. On the drive home, I was trying not to cry. Neither girl let out a peep. I explained to Kid O that she needs to think about someone other than herself and that she could have gotten me into serious trouble. I explained to them that I could have been arrested and taken to jail, and that they could have been sent away. I exaggerated a bit for effect. And "daddy and I would not be able to find you." Worse case scenario, we would have found out but it would have taken a while, going through the court system.

When Kid O screams bloody murder, it's natural that people will assume that I am abusing her, even though I neither raise a hand to her nor raise my voice. They don't understand that, on account of being severely handicapped, that she has very little autonomy and so that is her only way of getting any. Kid O listens to me but then she resumes her bad behavior. Part of that is my fault. We have never really disciplined her because I have always been afraid that people will hear her crying and assume the worst. And, as you can see from One Primal Scream Will Get You Three... Cops, That Is that people have begun assuming the worst ever since she was a baby. I have been looking over my shoulder since then. I rarely feel safe whether it's in my own home or out in public. If people see my struggling to place her into her carseat, they go the other way. Or they make a phone call.

The neighbors ought to know what Kid O is like, but, problem is, they don't know me. They also don't understand that cerebral palsy happens either right before, during or after birth. I imagine that some even assume, like one man who had his wife call the police, that Kid O has a spinal injury and they assume even further that I must have somehow caused that injury to happen. That leaves me in a very isolated position. I am often left with no one to help me, even when I need it the most. So, instead, the neighbors think they know what I am like. It's not pleasant, but it's understandable. We are conditioned these days to have a kneejerk reaction to a screaming child. A parent rarely, if ever, receives the benefit of the doubt. Possibly from other parents who can remember their own screaming children, but, as I have discovered, people often develop a certain amnesia about these things. Their children always behaved well in public. Their children were never overtired or unreasonable. Their children also always played well with others. And so it's impossible to receive any compassion from someone with such selective amnesia, because, of course, they always had it together as a parent. They were always organized. They were always even tempered. They were always fair minded. They always were well rested.

Back in the 60s when this drama unfolded between my grandma and my folks, the neighbors knew them. And they knew her. And so they did know what my grandma was like. These days its possible that someone might allege elder abuse. And they would do so because many of us live increasingly isolated lives. We are more fearful of each other than not, and that means that people like me do not get the help we need and our feeling of helplessness and isolation increases. How many times have I or any other caregiver been asked how we are doing? I don't know about them, but I can count it on one hand. My mother does not count. Of course she is going to ask. She is my mother and she cares about me.

I cannot blame the neighbors. Much as I'd like to. They could be friendlier, but so could I. Because I have been burned so many times, I am wary. I hesitate to ask for what I need, and, in turn, I continue to have neighbors who don't know me. And, while they may not be judging me, they don't know how to approach me, either. And that is a shame. Not just for me. But for them, too.

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