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.

Tuesday, May 11, 2010

What the Nurses Saw: A Dark Farce In One Blog Post

Hard to imagine that three women could so badly mistake an underwear crease for a scratch, but they did. Perhaps the nurses convinced the teacher that is what it was. The teacher was genuinely concerned about skin break down which can occur when a person sits in a wheelchair for long periods of time and knees together. The way she chose to deal with, or, rather, not deal with the information, is what set this dark farce into motion. She told the two women, "handle this for me." What she had intended was for one of them to call me and tell me what they thought needed to be addressed, sooner rather than later. What one of them did was contact the Department of Children and Family Services instead.

And, so, on the afternoon of Thursday, March 25, 2010, I came this close to losing my children. And possibly my freedom. Given the location of the alleged scratch, it's likely that the assumption was made that this was no run-of-the-mill abuse but likely sexual abuse. At least that is what comes to mind when I put scratch and labia together. The investigator made it really graphic. "Some people use utensils." I wonder if I looked as horrified as I felt. I think I gasped. I felt vaguely nauseated.

I was disturbed that anyone could even begin to entertain that thought about me They wouldn't, if they knew me. Even a little. They wouldn't if they knew how much I love Kid O. They wouldn't if they knew how she is the child of my heart. Now, granted, abusing someone and loving someone is not mutually exclusive. But I would wager that people who abuse their own children don't really love them, but that gets into deep psychological and emotional territory that I can only hazard a guess at. I am only qualified to talk about me and my feelings.

I won't lie to anyone. There have been times when taking care of Kid O have felt as if it's a soul crushing experience. There are times when I feel the resentment rise inside of me. But when I stop thinking about it as caregiving and more in terms of doing something for someone I love, that attitude softens considerably. There are times when this feels like drudgery, and, if I am not careful, I can start to feel burnt out. When I am more able to accept things, then there can be moments of joy and love and affection. More than that. Great good humor.

Kid O has a wicked sense of humor. If a person looks in her eyes, they see more than her humanity. They see her capacity to express much mirth. Her laugh is infectious. I can forgive her just about anything, over and over and over again. When I think about Kid O's laughter, I cannot imagine being separated from that mischievous sprite. Or from my magical younger daughter, Kid Q.

That Thursday evening my husband and one of his sisters examined Kid O, because, naturally, we took this very seriously. They were perplexed as to what was being reported. My sister in-law said to us that all she could see was a crease. The following morning the pediatrician and I saw the same thing: a pull up crease. And, what I didn't realize, but in that moment, I was exonerated. Also what I didn't know until a month later, was that I was the only one being investigated. The person making the allegations had never considered that my husband would do his share of the care. Just as well that it hadn't occurred to her, given the circumstances. When I mentioned that to the investigator she said, "Isn't that a girly thing?" I am thinking, what if we had been divorced and he had part time custody? What would he do then? Or worst case scenario, he'd entirely be a single dad. Or what if Kid O had been a boy? Would it be awkward for me to care for him?

Essentially then much ado about a crease that was presumed to be a scratch. How is it that three professionals could not tell the difference between a crease and a scratch? A crease is reddish but flat. A scratch is bumpy, reddish, probably scabby and definitely inflamed. The only description that was accurate was length and width. Purely a superficial resemblance. A perplexing conclusion, assuming that the report was not made with malicious intent.

What is still jarring is how quickly things can change from a OK day to a really horrible nightmare. Because reports can be made anonymously, there is no such thing as a heads up. No way to mentally prepare. There is a sharp rap at the door. No time to pick up the house. No time to tell Kid Q to put on some clothes. Suddenly I have a woman in my house towering over me, tapping her finger at the report and insisting I take Kid O to the pediatrician RIGHT NOW. I explain that by the time I get the carseats back in the car the pediatrician's office would be closed. Then she insists I have to take Kid O to the ER. I tell her I am not going to take her to the ER for a scratch. Then I say that even if I wanted to, what, indicating Kid Q, would I do with her? I look up and see that Kid Q is wearing nothing but underpants, and is dancing about with a unicorn on top of her head. I am wincing, but I have since been told that Kid Q being so at ease and friendly may have been what saved my sorry ass.

There's a joke in there somewhere. Take a seat. Have you heard the one about...

Saturday, May 8, 2010

How I Became MissShuganah

I was walking to the house where I went for lunch. The older girls across the street were singing, "They're Coming to Take Me Away, To The Funny Farm Where Life Is Gay." At first I smiled. Silly song. And then I realized that the fat one kept pointing at me. Oh. They wanted me to know they thought I was crazy. I was only eight. They laughed. I don't think they knew I got it. These girls were recess monitors. Fifth graders. Why would they they have a need to make fun of me? I should have been insignificant to them. I didn't even know their names. To this day I am perplexed as to why they would do that. Yes, they were what we'd now call Mean Girls, but, even so, would never make sense to me.

The girls I knew were quite mean and subtle in how they tormented people. On the surface they perpetuated the myth of sugar and spice and everything nice, but, really, girls can be quite cruel. They can also convince boys to do the heavy lifting for them. Boys are dumb about things like that. They will believe anything the girls tell them, and they will do their bidding. The boys would more openly torment me while the girls would sit back and laugh at their foolishness and at my pain. I knew what the girls were doing, but I wanted to be liked so I never let on. And I played my role much to their entertainment. I didn't have enough sense to refuse. More to the point, receiving their negative attention was better than being invisible. In retrospect, invisible would have been preferable. When you are driven by a need to be liked and loved the way I have been and still am, you will do just about anything, even if it means being humiliated almost daily.

My life would have been much easier if I had had the wherewithal to turn things around and Make Them Laugh. I internalized everything. They were laughing at me, and I couldn't laugh at me with them.

I had to provide my own safe haven. I used to console myself by walking around my room and talking to myself in my best Captain Kangaroo voice. I could identify with Captain Kangaroo. Mr. Moose and Bunny Rabbit would promise not to hurt him, ie, drop pingpong balls on him, and, every day, it was the same broken promise. And, despite that, he could offer soothing tones to his young viewers. I remember, too, that instead of being hurt by the shenanigans of Mr. Moose and Bunny Rabbit, he would just look chagrined and shrug it off. Captain Kangaroo with Mr. Moose There was something hopeful to me about that. The Captain could remind me, pingpong balls on my head or not, I would somehow manage to survive another day. I also knew that somewhere out there was one kind, compassionate adult. It helped that I could internalize that. It was OK to be me, even if a lot of people didn't think so.

One of the problems I have had over the years being implicitly or explicitly labled as "crazy" is that it has broken down my sense of self esteem and self worth. Worse than that it has caused me do doubt my own very good intuition. I have struggled with pushing away thoughts like, "Maybe they really are right." That would not be so bad if it were just me that I am concerned with, but I have a family now and I must find a way to do what is best for all of us. Along the way I have learned to trust my intuition and my judgment, but often those old doubts still nag at me.

When I advocate for Kid O and for Kid Q, I don't let the doubts enter into my thinking. I know that what I have observed and experienced goes counter to what the professionals say, but I do what I feel is right. That may cause the experts to doubt my veracity, but I will always continue to stand up for my daughters. And for me. That's not so crazy. But it does mean I am MissShuganah.

Saturday, May 1, 2010

Railing Against the "C" Word: Crazy

This is a difficult post for me. Not because I am conflict adverse because I have a residual need for approval. Please like me. Please love me. Whatever you feel, please do not be silent. I cannot abide by it.

One of the people on Twitter whom I respect the most used the "c" word in a post and it made me uncomfortable. No, not that "c" word. The other "c" word: crazy. It's one thing when that word is applied to a situation or ideas, but quite different when applied to a person. "Crazy" and words hinting at someone with poor mental health are tossed around to discredit someone. I am particularly sensitive to the use or misuse of this word because it's been applied to me or insinuated about me for most of my life.

I am not MissShuganah for nothing. Yes, it's a joke name, but it also is my way of turning that label into something positive. My dad used to push my buttons and then freak out when I would get all angry and upset and demand an apology from him. He would say to my mother, "get that mad bulldog away from me." That would have been unforgivable if he hadn't had many, many, many redeeming qualities. What I didn't understand then was that my father was already starting to sink into a dementia related to his Parkinson's. In those moments he was not himself. Or, perhaps, in some ways, he was more himself. They say that when a person has dementia they resort back to their more base personality. In either case I prefer to remember the man who taught me how to be an honest, ethical, compassionate human being. Every day my critieria is: Can I look at myself in the mirror? At the end of each day, I hope the answer is yes, but I am fairly certain I often fall short of the mark.

For those of you who follow me on Twitter, it should not surprise you to know that I think the world of Ira Socol. An Apple for Mr. SocolEver since I have appeared on Twitter, he has been a good, strong supportive ally. One of the reasons I respect him so much is because I know that he's overcome so many obstacles to get where he is now -- just a few months away from being Dr. Socol. I also know that, as a writer, Ira, like me, is sensitive to language. He is aware of many nuances. All the more reason why it surprised me to read: "OK, easy target. This guy is pretty crazy..." in what is otherwise yet another fine post, Now, granted, it's not the same as saying to someone's face, "You are crazy." So why even bring this up? Because it's still a way to discredit. We don't know this man, but hearing a phrase like, "this guy is crazy," already prejudices us against him. We are prepared to dislike him. More than that. We are prepared to doubt his veracity. And therein lies the problem.

If a typically thoughtful man like Ira Socol is inclined to label someone as "crazy," then imagine what rhetorical violence is done every day in both the virtual and real world. I am not sure if the solution is to ban the "c" word, crazy, as we strive to ban the "r" word, retarded, but I feel that people need to be educated about this all the same. Casting aspersions about someone's mental health is just as damaging as suggesting they are not all mentally present or complete. More so, I would suggest, because a mentally handicapped person might be accepted in society, but a mentally unhealthy person is a frightening prospect. Conjures up images of a person ranting on the subway. People won't necessarily move away from the mentally handicapped individual, but they most definitely will from someone they perceive to be mentally unstable. Entirely understandable. No one wants to put themselves in danger. And, so, if someone is referred to as "crazy" they are automatically assumed to be someone who lacks judgment and character.

There's a huge difference between someone having an opinion you disagree with or don't respect, and someone who really is mentally ill. No one deserves that lobbed at them, no matter how distasteful a person they may be. Stepping back and letting a person to destroy their own credibility is one thing. Calling them "crazy" on the onset is quite another. And so I ask all of you reading this to please think next time you are inclined to refer to someone as "crazy." Just as with the "r" word, we, as a society, have become desensitized to using the "c" word as well. We all need to consider the impact of labels we use.