Kid O Is CPed, or How Crippling Language and Sentimentality Dehumanizes Disabled Children and Adults

This past Monday I came back to Twitter after a weekend away only to have to face up to the error of my ways in regards to the word "handicapped." This led to much anger, angst and upset on my part. Yesterday morning I logged into Twitter to this post from a twitter friend. (OK, it's Ira.) focusing on whether Tiny Tim was a negative or positive portrayal of a disabled child. I've read Dickens but not A Christmas Carol, so I've only had the Hollywood sentimentalization to go by.

All these years I felt that Dickens was presenting me with a caricature of a disabled child, when, in fact, it was Hollywood all along who was deserving of my contempt. I should have known better, as works like Bleak House, for instance, point out how acutely aware Dickens was of the struggle of the working class. I wish that my Victorian Lit class had been taught incorporating Ira's historical knowledge, as it would have been a much more meaningful experience for me. I was so uninspired by the class that it's the only time I needed a professor to pick a paper topic for me. This was a graduate level class, too.

I always objected to the pure sentimentalization and emotional manipulation of Tiny Tim as depicted by Hollywood. Now that Ira Socol has separated out Hollywood versions from the original, I now understand how Tiny Tim was included within his family while not being included by the rest of society. There is perhaps a subtle irony with which Dickens has Bob Cratchit report Tim's assertion that, "...he hoped the people saw him in the church, because he was a cripple, and it might be pleasant to them to remember upon Christmas Day, who made lame beggars walk, and blind men see.'"


The bitter truth is that those attending church that day very likely looked the other way because they did not want to be reminded of disabled children and other imperfections of creation. After all if there is a God then there'd be no misery of any kind because God would be merciful and not allow for such blemishes on his peoplescape. Religious people do not want to have their sentimental visions of a god who answers their prayers shaken by harsh realities. Sorry, Tim, they are more likely wishing that you and other disabled children would conveniently disappear. Or, at the very least, get swept under the rug. Out of sight and blessedly out of mind. We cannot have emotional discomfort, especially on Christmas Day, which, since the mid-19th Century, has been subverted from celebration of Christ's birth to the the worship of material wealth and comforts, which in turn leads to shallower expressions of emotion in the form of sentimentality and nostalgia, as opposed to deeper, more authentic expressions of emotion in the form of compassion and genuine empathy for one's fellow man. That in turn leads to objectification of the disabled and other less desirable members of our society. When we objectify disabled people, we turn them into people to be pitied rather than people to be empowered.

Some of the worst offenders for rolling out the disabled child to ensure that the tote board total jumps up is Jerry Lewis and the MDA telethon. Thankfully there are organizations such as Jerry's Orphans that vividly portray what it's like to be a grown up "kid". Adults suffer from forms of muscular dystrophy, too, but they are rarely heard from.

The Kids Are All Right


The kids are all right. So are many disabled adults. I am just starting to learn about person first language. Until recently I saw no problem with the word, "handicapped." Cap in hand. Although the phrase "cap in hand" does not come from "handicapped," the connotations and images remain much the same as language evolved. And in Kid O's case, it connotes someone who could end up on the fringes of society working in a sheltered workshop.

I also realized I had never asked Kid O how she would like to be labeled (other than just a kid, that is). Given her limited ability to effectively express more complex ideas (note: not the same as being able to comprehend more complex ideas), I asked her, using a two hand system. Touch this hand for answer a) and this hand for answer b) She ruled out "handicapped" in favor of "disabled." So I took it one step further. She prefers being known as someone with cerebral palsy. My small problem with that (OK, sometimes huge amounts of angst) is that you can say, "she is handicapped," or "she is disabled." But, try as you might, you cannot say, "she is cerebral palsy." Others have suggested saying that "she is a wheelchair user." But Kid O does not use a wheelchair in the sense that she is able to wheel herself around. She sits in a wheelchair and others push her, ie, "use" it, if you will. So I am thinking I need to coin a new phrase. "She is CPed." I could give into convention and say Kid O is disabled, but that is too encompassing a word. She is CPed. Kid O doesn't have CP as if it were some dread disease. But CP is part of her identity. Kid O is a girl who has CP. It's cumbersome language. If we can say "she is handicapped" or "she is disabled," why not "she is CPed?"

Now that may seem like quibbling to some, but there is a difference between being something "blind, deaf," and having something. You have an illness. Someone may be a cancer patient, but, passively, they have cancer. Does that mean they own the cancer or that the cancer owns them? There is no ownership of cerebral palsy. It just... is. Kid O is CPed.

Kid O is not differently abled. She is not "handi-abled" as the gym teacher on Glee says. Kid O is CPed. I am not circumferentially challenged. I am fat. Kid O is not physically challenged. Kid O is CPed. Kid O is physically disabled. Kid O is a kid, actually a teenager, with many positive traits and many flaws first and the disability, cerebral palsy, that defines her second. Kid O is not an angel flying too close to the ground. Kid O does not have special "other" powers. Kid O is a human being. Sugarcoating the language about disability is to sentimentalize Kid O to the point of creating a caricature and denying Kid O her humanness. Sometimes she is a human board. Sometimes she is a mule kicking machine. Sometimes she is very primal in her communication. But one thing Kid O always is is very human. Kid O is CPed.

If we deny the disabled their right to call themselves what they will, and if we use feel good sentimental language, then we are doing a disservice to the disabled individual. Furthermore, we are doing a disservice to ourselves by denying our own discomforts with truths about the human condition. There are the infirm and disabled and disfigured among us, and we need to stop cheapening their lives by using disabled people as props and considering them objects of pity. When we objectify a human being, we are committing an act of psychic and linguistic violence. We need to look inside and figure out why we are not comfortable around certain people. We, as a society, need to confront our disablism. Disabled children and adults do not have deficits. Disabled children and adults are whole, just the way they are. Disabled children and adults are just human. Kid O is CPed.

One Mother Desperately in Search of a Village

When I was a brand new mother, I needed compassionate neighbors. Instead I had judgmental ones I had a special needs child, and I had postpartum depression. One or the other would have been enough of a challenge. I was hit by a double whammy. Judgmental neighbors. Friends and family seemingly putting on track shoes and checking their watches. I had my mother to talk to, and thankfully I found a good therapist. But I didn't seek her out until I was months into going it alone with Kid O. Family and friends and one neighbor apologized, admitting they didn't realize how difficult Kid O was. But that was could comfort at the time when I was going through the worst of it.

Kid O was too tiny and I was too top heavy. I couldn't breastfeed her. I needed both hands to lift a breast, and no one who could help me with the mechanics of it. I hurled the book, Womanly Art of Breastfeeding against a wall. Even now when women speak about the endorphins, I feel hostility rise in me. The smug, self-righteous slogan, "breast is best," leaves me wanting to scream, "I tried it, OK? Now get off my back." We still have the rocking chair I was going to nurse her in. I pumped for three months. I felt I owed Kid O that much. Kid O was a preemie and I couldn't keep up with her demand. Nothing made me feel more like a failure as a mother.

Any romantic notions of motherhood I had went out the window. Not only couldn't I provide Kid O with nourishment from my body, I couldn't seemingly do anything right. When she was two months old, she started putting her fist in her mouth. The one mother who would talk to me told me she was teething. I told that to the doctor. He found it hard to believe. But the mother down the street was right. Preemie or no, Kid O was teething. And she was miserable. Possibly it was her disorganized nervous system or possibly it would have been that way, anyway, but meant for a lot of long nights. Kid O would scream bloody murder whenever I would try to put her back in her crib. I felt self-conscious about it. The neighbors were probably awakened by the screaming and that is probably why they called the police. Their sleep was only interrupted for twenty minutes. Mine was interrupted for several hours.

There was a pamphlet about cerebral palsy they had given me as part of a packet they probably give all mothers with preemies. One of those what to look for things. But no pamphlet or pediatrician could explain to me why this baby cried every time she had a bowel movement. When I switched pediatricians, even she couldn't tell me. But knowing it was CP finally caused it to make sense. Kid O had very little in the way of abdominal muscles needed to have a dump without pain. It's really a common sensical explanation, if you think about it. So why didn't the pediatricians? And why didn't anyone recommend a diet that would have been easier for her to process?

No one had answers for me. There was no one who could whisper reassuringly, "it'll get better." Intellectually I am sure I expected as much, but in the throes of it, things felt hopeless. I needed answers. Why me? Had somewhere in my youth or childhood, I must have done something bad? Really, really, really bad? Why her? Kid O was an innocent, was she not? What fine print on what contract? I spoke to God, and was met with a deafening and a seemingly indifferent silence. My therapist said that God was big enough to take my anger. After a while I stopped talking to God. I decided this had to be entirely random because no God would cause such a thing to purposefully happen. As what? A form of punishment? It's then I decided that God had left the building and left no forwarding address. This was just between me and the universe, and the universe simply doesn't care. The universe is random, and events that happen are random, too. Someone could answer that I somehow missed the point about God, but I figure that is as good an answer to why me and why her as I am going to get. When I stopped trying to receive answers, a lot off my pain went away. It just was. Life was unfair, and that was that.

I remember consciously thinking that I had to recover my sense of humor in order to somehow get past this overwhelming grief and depression and frustration. At the very least Kid O deserved a mother who could laugh. What mattered is that, despite me, she was seen as a joyful child. I have no idea how Kid O managed to develop her wicked sense of humor. She was and remains quite an imp. Along the way Kid O taught me to laugh again, and she taught me and continues to teach me to never give up. I have had a lot of low points over the years, and then I look at her continuing to figure out how to do simple things and I remind myself that she is the one with the disability. Not me.

I managed to overcome many emotional and psychological challenges. Other women have not been so fortunate. You read about them every day. They kill themselves. They kill their children. They don't have a support system in place. Or they don't have my emotional strength. There were times when I didn't think I was going to make it. That is why we need a village and not just lip service to the idea of a village. I don't know what the statistics are as to how many suicides are in direct correlation with post partum depression. Does it matter? What matters is that women are suffering, and so are their children. Postpartum depression is very real, and we need more support for those women who suffer from it.

We do not really give people with any level of mental illness permission to express themselves, let alone women with postpartum depression. We don't want to hear about anything negative that will place cracks in any myths we have about motherhood. Motherhood is supposed to be about women cheerfully bustling about baking cookies, taking children to the park, singing songs, and kissing skinned knees. Motherhood is supposed to be Snow White writ large, bluebirds fluttering about while dishes are being done. Motherhood is expected to be effortless. We do not want to hear about primal screams or crying jags or women resorting to drinking or pills. We do not want to hear about women with a brand new baby thinking all is hopeless. We do not want to hear about women being angry or resentful towards this tiny being they chose to bring into the world. We resent these women for showing us the downside of motherhood. How dare they wave their unhappiness in our face? And so women like me quietly suffer, and some of us slip into oblivion. We act out on our darkest fantasies because we don't have anyone who will whisper to us, "Hang in there. It'll get better."

We and our children end up as unfortunate headlines. Or worse. We are castigated by smug, self-righteous people who assume that somehow they would not have slipped into this abyss. They would have done better. I can count on one hand how many times I was asked how I was coping. We judge ourselves for our failings. We do not need to have other people compound those harsh judgments. Too many of us feel inadequate. We do not need to be handed a larger club with which to beat ourselves. We need neighbors, friends, family who will ask us if we are OK. We need kindness and compassion. We need casseroles. We need someone who can lend us an ear or a shoulder. We need people who can help us remember how to nurture ourselves. We need people who can help us laugh again. In short, we desperately need a village. Please help a mother find a village. Before it's too late.

The Unforgettable but Frequently Forgotten Kid Q

Kid O's younger sister, Kid Q, is my magical child. I had given up on the idea of Kid O having a sibling when it was confirmed that Kid Q was growing inside me. I laughed. I was 42. Shortly after my 43rd birthday, Kid Q was extracted from me via a second c section. Kid Q was a propaganda baby. She got up. She ate. She went back to sleep. Quite a change from Kid O's intense babyhood. Kid Q is, in a certain sense my calm child, although that is at times misleading. When I needed to pick Kid O up to take care of her, Kid Q did not get upset when I put her down. Perhaps on some level she understood that Kid O had special needs.

Kid Q was pretty placid. That is, until she got her legs underneath her. Having dealt with a handicapped child, I wasn't prepared for that. She stood up one day and that was that. Kid Q is also very flexible and athletic. When she was starting to really take stairs, she used to pretend to lose her balance. Took me a few times to realize that was a game for her. Even so there was one time when she lost her balance. She was coming down the basement stairs to find my husband and me when she lost her balance and somehow landed in a big, tall box right by the stairs. She managed to grab on the top of the box and held on like the cat in one of those "Hang in there," posters. We raced to her, and she was none the worse for wear. I have no idea how she managed to have the reflexes and the presence of mind to do that. I am exceedingly grateful she did.

Kid Q didn't really talk until she was four. She gesticulated a lot. To this day she will wave her arm in front of my face to request water. Because she didn't really speak and given superficial characteristics, some assumed she was a Down's child. When she was evaluated for pre-K, she was labeled as having a "slight cognitive delay." This label stuck until last January when she turned nine. Now she is labeled as being learning disabled, although, what precisely is that disability has yet to be determined. I am OK with it because Q does have sensory issues. She is also emotionally and socially behind. Doesn't matter to me what the disability is, just as long as she is in a class that is right for her. She is not being wedged into a classroom with 34, 35 other kids, and that is probably half the battle. She is being given age appropriate work, and she is in a regular classroom for her morning reading class.

Back when she was in first grade, they tried to immerse her entirely in a class team taught by both a Special Ed and a Gen Ed teacher. I was told that she started to show signs of sensory overload shortly after lunch, so it was agreed that she would finish up the day in her old Special Ed class. I was disappointed, but I knew we had to do what was best for Kid Q. Then, after five weeks,they switched Special Ed teachers for that classroom. Shortly that the new Special Ed teacher was absent. I got a call I had been dreading. "Mrs. (real last name), Kid Q is in the principal's office with the assistant principal." My stomach lurched. "The Special Ed teacher was absent, and the Regular Ed teacher didn't know how to handle her." Kid Q had had an entire sensory overload meltdown. In front of thirty-five kids and one teacher, she stripped down to her underpants. She was going to to back to her old Special Ed room. No discussion. No passing Go. No collecting $200. It was for the best, I told myself, but I was mortified, all the same.

The following year her second grade teacher tried to have her included in a Regular Ed Reading class. "She is climbing all over the bookcases," I was told. We had a meeting. She was promptly yanked from the class. A month or two later, when it was determined she was more mature, we tried again. Different class. Different teacher. She thrived. I was relieved. This year she is once again in Reg Ed reading, and the rest of the day in Special Ed. Seems to work for her. I am hoping that, in time, Kid Q will spend more time in a Reg Ed setting, but, for now I am content that she is exactly where she needs to be. Overall her behavior has improved, and she is being a better listener.

Kid Q did not have a good start academically. Having Kid O as an older sister confused her. I imagine she reasoned to herself that since Kid O got her needs met without talking, why did she have to talk? Thankfully the principal of the school where Kid O was already attending, recognized that Kid Q would do better if she were in pre-K, and she pulled strings to make it happen. Once Kid Q was attending school, she took off like a shot. There was no holding her back. Suddenly this child who was only gesticulating and grunting was speaking to me in whole sentences. Not over night, but steady progress. She took to reading very readily.

I knew she was a creative kid. Kid Q is a prolific drawer. I have large folders of her drawings and other artwork from early on. A couple of Chanukah, Christmases ago, Kid Q took a toy kiddish cup and placed a tiny Christmas tree basket inside of it. She made two drawings of it. Both look like Art Nouveau. I am still astonished at how she decided to put together things as a model for a drawing. That never would have occurred to me. Technique will come, but no one can take away from her creativity and her innovation.

Kid Q also has rhythm. I would never tell her this, but she is never going to have the body for a ballerina. She has a slight birth defect of a concave sternum that affects her overall structure. Causes her belly to stick out, and, I am told, will later give her quite the cleavage. Her natural athleticism lends itself to a Gene Kelly style of dancing. Not a bad thing. I hope she gets to explore that in years to come. I wouldn't consider her graceful in a ballet sense, but she has a fine sense of balance, and her flexibility has earned her the nickname of Little Houdini. As her yoga instructor can attest to, she is a natural yogini. She could do the sleep pose long before she took a single class. For those who do not know what I am talking about, that's being on one's back with feet up against ears and arms coming through opening where feet are pressed together. (Apologies. Not being kinesthetic, I have difficulty describing physical and spatial things.)

When Kid Q was little she used to make up really elaborate dances. I have always marveled at this girl, who remains small for her age. Her older sister may be Little Comedian, but Kid Q will always be my Tiny Dancer. And she will always be my Kukla, from when she was a baby. Not much hair, bright red cheeks, and a very sweet demeanor. I have since shown her old videos of Kukla, and she loves it. Kid Q also bears an uncanny resemblance to my dad and to the rest of his family. My father died December 9, 2000, and Kid Q was born seven weeks later. She was named for him,and, whenever she makes faces I am reminded of him. Kid Q is truly unforgettable.

We're Gonna End up a News Story, or, Don't Worry About Me, I'll Sit in the Dark

Q--How many Jewish mothers does it take to change a lightbulb?

A-- Don't worry about me. I'll sit in the dark.

"We're gonna end up a news story," I used to say over the phone to my husband.

Kid O was a beautiful baby. Every unwanted or unexpected noise or motion would upset her. She used to scream in my ear as I held her in my lap. A sister in-law recommended a nanny to give me a break. She had had experience with preemies, I was told. But by the time this woman had met that preemie, the little girl was more like a normal baby. No complications. I knew my nanny was quitting the moment she handed Kid O back to me as if passing a football, and bolted out the door.

The neighbor woman who had had a child about six months before me, found other women with babies to stroller with and go to the park with. Kid O and I were alone. I would take us out. Sometimes, like most babies, Kid O would doze in the stroller. But other times she would scream bloody murder. Resentment welled up inside me. I wanted to get out and get some sunshine, see the flowers, and I felt that this tiny person was denying me that pleasure. I also felt extremely self conscience. There wasn't a large enough rock for me to crawl under. Intellectually I knew that she wasn't doing this on purpose, but that's how it felt.

I had a baby who hated being in the stroller, got upset by every single train, plane and automobile and even quiet conversation from below our second story window. Until I shifted us from the sun porch to the back bedroom, would take me on average four hours to feed her. Kid O would keep me up for hours while she was teething. She would scream on average twenty minutes if I tried to put her back to bed. She wasn't even sitting up on her own, never mind standing or walking. I couldn't breastfeed her. I was too topheavy and Kid O was too tiny. In frustration I hurled The Womanly Art of Breastfeeding clear across the room.

There were times I wanted to hurl Kid O across the room, too. Even now, years later, I fill up with shame that that thought even entered my mind. I used to imagine it in grim detail, with my husband coming home to find me sitting on the couch and a broken body nearby. What stopped me was that, aside from not wanting to go to jail, was being fearful of losing his love. That's right. I cared more about having my husband hate me than whether or not I still had a baby. Of course I would have felt tremendous remorse. Kid O is the child of my heart, and I would have been beside myself. But in those moments, I didn't care. I just wanted my time back. I wanted my sleep again. And I wanted a "normal" child. Like all the other moms. I wanted a child who was physically able, and, above all, I desperately wanted a child who would say all those cute, clever and precocious things that other kids seem to say to their moms. I am still waiting for "I love you, Mommy," although I know that Kid O and I have a very deep connection. She was and remains my "beautiful mystery."

Why didn't I snap? I often wonder how I managed to survive Kid O's first two years. I have always had a strong moral compass, and I always had a deep reservoir. Even at my lowest, there was always something I could reach in and grab and use. I did this even though I had post-partum depression. Aside from my mom, I had no one to really talk to. My husband was crew for a sailboat race team, and when he wasn't doing that he was off riding his bike. We have healed from those early days, but it was difficult. Family members always seemed to have their track shoes on. No one seemed to have time for me. Or for Kid O.

Months later I received an apology from a friend of mine. She hadn't realized just how difficult a baby Kid O had been. My next door neighbor apologized right before she moved. Seemed as if someone from their birthing class also had a preemie who had cerebral palsy and a disorganized nervous system. This couple was forced out by their condo association. No screaming baby in their building. Nosiree. All of it was cold comfort. Where were they when I needed them?

I looked into a support group. Even if we had a car then, I am not sure I would have gone. I am more of a cave dweller than a joiner. The woman I spoke to talked about her child needing a feeding tube and oxygen. At least Kid O was healthy, as handicapped as she was. I felt as if my need for support was somehow illegitimate. It was a foolish notion, but I never again looked into it.

Sometimes my rage turned inward and I became suicidal. Sometimes I turned my rage outward. I didn't recognize this rage filled woman. I always felt really horrible whenever I expressed rage. I would make the same promise that all abusers make to themselves and to the people around them. I will not do that again. I promise. Thankfully it was sporadic. Didn't make me a bad person. When I wasn't expressing rage and more myself, I was a kind, compassionate, loving woman.

My struggle with rage came to a head when two friends of mine, independently of each other and several months apart, told me that they would no longer deal with my tantruming. I took a good, hard look at myself and decided that somehow or other, the rage had to stop. That was not who I was. That was not who I wanted to be. I did not stop the rage cold turkey. But I did stop. The pain and the shame slowly lifted. There is still a lot of work I need to do, but at least I have overcome the worst of it.

When I first started to leave the dark places behind, I was sure the light was an oncoming train. And then I started to see that it was daylight. I am still getting accustomed to that. Joy is slowly returning, and I am starting to feel whole again. I have returned to gardening. I have a better outlook. And all because people cared enough about me to tell me the truth --- that I was driving them away.

It is easy to judge people, especially when you don't know them. If people had only assumed the worst about me instead of looking at me as a whole person, I'd be in deep trouble now and so would everyone around me. When I read news stories about a mom or a dad harming a disabled child like Kid O, my first reaction is self-righteous anger. How dare they harm a child. But then I think about how life can change in an instant. I ended up with what seemed like an impossibly difficult child. I developed coping skills, but, also, just as I thought that no one cared, people reached out. Many times I could have been that news headline. But somehow I wasn't. When I read these stories I always think: could have been me.

Just One More Thing, Or I Was My Very Own Crime Show Episode

10:35 PM. My husband and I were sitting in our living room watching Dave begin his monologue. Five minutes later, there was a loud knock on the door. Two cops from SVU, a man and a woman, were on our doorstep. We were shouting. They were shouting. Finally the male detective shouted for all of us to shut up. I already knew I was under investigation by DCFS for medical neglect, as the after hours investigator had been to our house. What I hadn't known was that whenever something happened that involved an ER or a hospital, cops were automatically called in to conduct their own investigation. The male detective, who did most of the talking, assured us that, as far as they were concerned, this was not a police matter. Instead, they were just there to ask me my version of things.

As I answered questions put to me by the hospital staff, a bored Kid Q entertained herself by turning lights on and off and moving the curtain separating the beds back and forth. The repetitiveness of the questions was perplexing and exhausting. Why, in particular, were they asking me if I had said that Kid Q had Down's. Seemed they were stuck on that detail. I was relieved when they finally gave me a glass of water, as my voice was starting to give out. When my husband showed up, he asked me why I hadn't called him to tell him for sure that we were all at the children's hospital. The hospital staff was questioning me so incessantly, I hadn't had the chance. I am glad he guessed right.

Shortly after ten that morning the school nurse called to tell me that Kid O had had a seizure that lasted three minutes, and she had called the paramedics even though it was borderline duration for CPS protocol. I was annoyed with her for making what seemed like a arbitrary decision, but the only thing I could do was to call up the girls' pediatrician and skedaddle over to the ER. According to what the ER doctor has his nurse tell DCFS, I took an hour and a half to meet the aide and my daughter in her ER cubicle. Despite light rain, a forgotten turn, and a scramble for parking, I got there in less than an hour. I know because I looked at the clock in the ER cubicle when I arrived.

I threw the notebook down with tremendous force and shouted, "This is bullshit", startling Kid O and causing her to cry. The teacher's note stated she had timed the seizure out at two minutes. There was no reason for us to be in an ER cubicle with an unresponsive doctor, who who had a brusque manner and who had, as it turned out, decided I was guilty of medical neglect. Days later I found out that he had told a nurse to tell the DCFS investigator that I had thrown the notebook at him. I wanted to show him the teacher's note, but there's no way I would have risked getting cuffed and hauled away. I took the nurses' warnings very seriously to stay away from the ER doctor, but I also wanted information. A woman had come to draw blood, and no one was explaining why this was necessary. Finally the doctor told me that "if we don't draw blood, they won't even look at her over there." Ah, good. So they were going to follow through on transferring Kid O. That's all I had wanted to know.

When I returned later that afternoon with Kid Q, the woman at the desk to the ER almost wasn't going to let her come in with me. "What am I going to do with her," I asked. Reluctantly she let us both go back. I signed the release forms so that the paramedics would transfer Kid O to the children's hospital. "Aren't you going to go with her," the nurses asked. "Can she come along," I asked, indicating Kid Q. No, they responded. Well, then, we will follow in my car. Thankfully that satisfied them, especially since they are the ones who insisted I had to return to the ER to begin with. I couldn't just sign for the transfer and meet Kid O at the next hospital. No one ever said as much, but I am guessing they thought I intended to leave Kid O on her own. The thought never entered my mind. All I wanted was to see if I could save myself a return trip.

DCFS seems to have an uncanny way of showing up just as a kid comes off the bus, or just when you arrive home from the hospital. Maybe the after hours guy was already parked and waiting for us. I spoke to him on our front porch. Finally he asked to see Kid Q. She spoke to him with confidence, as if he were a family friend. As he was leaving, I heard him say to his supervisor that this was not a Down's kid. I am guessing that the ER doctor made this superficial assessment and wanted it to sound as if having to pick Kid Q up from school was an inconvenience. Or perhaps as if Kid Q herself were an inconvenience. Even if Kid Q had Down's, I would never think of her as an inconvenience. She would still be my magical child.

The after hours DCFS investigator kept returning to ask yet another question. For a while I thought I was in the middle of a Columbo episode. I didn't know whether to laugh or feel exasperated. "Now what, Columbo," I wanted to ask in my best Robert Culp voice. He informed me that the regular DCFS investigator would be in touch with me the next day. Perhaps then he was the DCFS investigator of Things Past, and the following day's investigator was going to be the Investigator of Things Present. What he didn't tell me and had to have known, was to expect the cops. That would have been an announcement of Future Things Surreal, as if the day hadn't been surreal enough.

"Whatever DCFS tells you to do, just do it," the male detective emphasized to us. Seemed strange hearing that from a man who was such an imposing figure. Were these tough SVU detectives intimidated by DCFS, too? Or were they simply making sure we understood the gravity of the situation? Knowing that they didn't consider this a police matter was reassuring, as I knew that is what they would tell whoever the investigator turned out to be. The male detective gave me his card. I was to call him as soon as I knew who the investigator was, and I was to give the DCFS investigator his information. I still have the detective's card, even though I was cleared several months ago. I figure it can't hurt to have it as a talisman.

Oh, yeah. Just one more thing.... Chung, chung.

Kid O, Comedic Queen, Traveling in Style

When Kid O was very little, I used to take her on the subway and el two, three times a week to various appointments. Often stations were inaccesssible, and I would be asked to take her out of the stroller and walk through the turnstile. I'd tell the CTA worker behind the cage that I would have Kid O walk through if I could but she ablebodied and so I needed them to unlock the gate so I could roll her through. Most workers would grudgingly comply, but this conversation happened too often. I'd have to threaten to take down names and numbers. At least one woman didn't care if I did.

Subway steps are tricky enough without someone unexpectedly lifting up the bottom half of Kid O's stroller. Without a word, a hand would dart out, followed by a second hand and then a torso would appear. All followed by the friendly face of some well meaning human being. And, all too frequently, I'd have to tell that friendly, well meaning person to let go. Many would let go right away, but others would only respond to me harshly insisting. All too often a look of hurt would register on their faces. They were presuming to offer help that I never requested and were throwing me off my rhythm. One false move and I could have tumbled down the stairs. And Kid O with me. At least if someone asked first, I could waive them off with less consequences to a would be helper's psyche. Most would immediately move out of the way. A few persisted. If I wanted help, I would have asked. Sometimes I accepted help from people if I were trying to pull Kid O up the stairs because I knew that I was impeding their progress. I actually preferred their impatience over someone with a need to be helpful.

Snowplow operators are notorious for piling snow high up against crosswalks, and the blizzard of January 1999 was no exception. Was a mixed bag. I could stroller Kid O through the streets, but crossing them was a challenge. I had to lift her, stroller and all, and carry her over snow drifts. Each time Kid O would laugh uproariously. While I was happy to hear her laughter, I was always fearful I would slip. Sometimes when I'd be strollering Kid O in the street, I'd have to make way for cars. I remember having Homeresque reactions, "All right, all right, I'll walk in the mud." Mud. Slush. About the same in terms of difficulty. Kid in stroller for an additional challenge.

Kid O did love it when her dad or someone else would take the bottom of the stroller, and I would have the handles and carry her up the stairs. She loves being carried like the pasha. Just this past winter when the lift malfunctioned, I had a neighbor help me lift her wheelchair and all. More uproarious laughter from Kid O, comedic queen. She is the queen, and we are all merely servants. That's how Kid O likes it. Traveling in style.

The Moon Keeps Going Kaboom

When I was a kid my dad and I used to sing an call and respond song that, near as I know, he made up. My title for it is When the Moon Goes Kaboom. He would sing in his nice clear tenor, "When the moon goes kaboom, will you put it together, put it together, put it together. When the moon goes kaboom will you put it together with me." And I would respond, in my shaky alto, "When the moon goes kaboom, I will put it together, put it together, put it together. When the moon goes kaboom I will put it together with you."

As he declined in ability, I would often think of that song. I would think of it as a commitment that I was failing to meet. I couldn't somehow find a miracle cure for Parkinson's. I couldn't find a miracle cure for his aphasia. I could not find a miracle cure for his dementia. I could not help him pull out of his downward spiral of depression brought on by lost physical and mental ability.

For much of that time, I was taking care of Kid O while my mom was taking care of my dear old Daddio. We would commiserate on caregiving frustrations. My mom would meet Kid O and me for lunch and then off to one of Kid O's Feldenkrais lessons. A busman's holiday for her, and companionship for me. One of the things I struggled with then was how much of a toll my dad's caregiving was taking on my mom. I resented him for wearing her down.

One day Kid O and I were waiting for my mom to join us for lunch. I was alarmed when I saw that she got off a stop past us. I was even more alarmed when I realized that she wasn't walking right. She had had a stroke. I was sure of it. She was titled at a roughly ninety degree angle. I couldn't leave Kid O in her stroller, and so I stood, frozen and silently hoping my mom would not tip over. When we entered the restaurant, it was even more evident that something was wrong. She was disoriented. We had a bite to eat, and I insisted on calling a cab for her. She didn't want to miss Kid O's appointment, but I insisted. I also made her promise to call her doctor as soon as she got home. A few hours later my dad's helper called me to let me know she had called an ambulance for her. I was right. My mom had had a mild stroke.

Over the years I have wondered why I have been meant to learn about neurological problems and brain damage. My paternal grandpa had Parkinson's. My father had Parkinson's. My daughter has severe cerebral palsy. Each one of them had loss of speech, the difference being onset at old age instead of at birth. Regardless of cause it results in a person being largely locked away inside themselves. My dear old Daddio would awaken like the Dormouse in Alice in Wonderland. He'd say something lucid and then drift off again elsewhere. Or sometimes he would communicate something that came from what? Where? Seemed as if he were going places. Perhaps what we call dementia is really nothing more than drifting into another realm.

Many years ago a woman who had been my mentor at work told me that she was concerned about how she was losing vocabulary. I told her she was stressed out and depressed and that is what happens to people who are stressed out and depressed. She was convinced she had early indications of Alzheimer's. Instead she had a malignant pear shaped brain tumor that was pressing on her speech center. The doctor gave her six months to live. She only lasted three. A co-worker and I would visit her at her mother's where she was receiving home hospice care. Two weeks before she died, circumstances prevented my friend from accompanying me. My mentor was already slipping into light comas and losing language. I sat by her bed. She woke up and looked at me. "You are here, but where is the other one," she asked me. I explained to her where "the other one" was. She closed her eyes again. And then she said, "It'll either be bargainzee, bargainzee, bargainzee or bargainzee, bargainzee, bargainzee. You'll see. You'll see." Perhaps some day I will understand what she was trying to tell me. Perhaps she had seen the venner velt, the other world. Or maybe the tumor had overtaken her language center and there wasn't much more to it than that.

Kid O laughs uproariously at some joke. She has no way to share the joke, but that doesn't seem to bother her. How many small ways does her world go kaboom? We can only skim the surface of her thinking. She is always pleased when we get it right. My world goes kaboom every day as I try to figure out how best to help her. Another day. Another failure. Or so it seems. And yet there are moments when it seems like we can really put the kabooming moon back together again. Moments of quiet companionability when it doesn't seem to matter that the world is incrementally falling apart.

One thing that Kid O has taught me is that life is not a tragedy but some absurdist comedy. When I laugh with her, it doesn't matter that I don't get the joke. Just that we laugh. There simply is no answer or great vision. Nothing to set out on a quest for. Maybe I should stop searching for meaning where there is none. And just be. The gods may be crazy, but I don't have to be.

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.

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...

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.

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, http://speedchange.blogspot.com/2010/04/anthony-orsini-please-shut-up.html 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.

Imagine That. Kid O For a Day.

The following is my contribution to Blogging Against Disablism Day, which is May 1st. http://blobolobolob.blogspot.com/2010/04/blogging-against-disablism-day-will-be.html


Imagine that you awaken one morning to discover that you have metamorphosed into a fourteen year-old girl who is severely handicapped. You find yourself suddenly strapped into a wheelchair. You cannot reach the wheels or the breaks, so you cannot go anywhere. Your wheelchair does not have a power joystick attached to a battery pack. And, even if you had one, your fingers are unable to bend so that you could use it.

Imagine that you no longer have the ability to speak. The only voice you have produces the most primal of sounds. You can scream. You can shriek. You can cry. You can also laugh and make babbling sounds. You cannot use your hands to gesticulate because they are too spastic. That means that sign language is out of the question. You also do not have the dexterity to text or write. Imagine that you don't have any assistive technology. You can only answer yes/no questions by moving your crippled left hand to some ablebodied person's outstretched hand. Since they are on your right side, you must slowly move your left arm across your body to accomplish this. Your default answer is yes.

You have to rely on others to feed you, clothe you and tend to your every need. Miraculously you can use the bathroom on your own, but that is the only thing you can do for yourself. The real Kid O cannot. Because you have to rely on others and they are not telepathic, you need to be flexible. You have to wait for a caregiver to help you. You are allowed to whine. It may be that caregivers are tired. Or maybe they are in a bad mood. Or maybe they are otherwise occupied. Sometimes these things cannot be helped. You can be very vocal about it, or you can wait silently.

Imagine that people don't talk to you. They talk around you. You can hear and understand everything is being said, but, because you cannot express yourself, you are treated as if you are incapable of understanding even the simplest of things. Even some of the people closest to you, who you know love you a lot, infantalize you by having the most simplistic conversations with you despite evidence that you comprehend well beyond that. You can forgive them for that because you know that they mean well and that they want what is best for you.

Imagine people don't look at you but through you. Imagine them never looking in your eyes. Imagine that you are bored to tears because people around you are only giving you two options to choose from. Imagine they misinterpret what little you can do as lacking in intelligence. Imagine that they do not understand that the game you devised of ablebodied fetch serves a twofold purpose: you practice your dexterity, and it's one of the few ways you have of interacting with those around you. Imagine that, because you cannot speak, that you are denied assistive technology because people need to know first if you can tell the difference between blue and yellow before they will give it to you. You refuse to answer because you think it's a silly question. You don't want to activate the switch because the recording still has your dead teacher's voice on it, and hearing her makes you sad. You are relieved when your mom bends down beside you to ask you if that is why you are reluctant to use the switch, and they agree to record over your teacher's voice.

Imagine that little kids ask your mom if what you have is contagious. That is OK because they are little kids. They want to know about you. You wish they didn't feel uncomfortable around you. You know that your mom was upset one morning because she discovered the word "mental" written in chalk on the masonry. You also remember when the boy grunted at you when your mom was rolling out you to the school bus. You know that people don't honor your humanity. You also know that many people do. You know that if they were to look in your eyes, that people would see your indomitable spirit and understand that you have a wicked sense of humor. You also know that it doesn't matter what other people think. You are exceptional.

Ingenious Nonsense: Tugging at Blankets and Ablebodied Fetch

The pediatrician suggested I try to have Kid O be on her belly. I knew she hated that. Even so I thought it may not be a bad idea. It was essential she learned to move. I placed two baby blankets on the floor. On one end I placed several of her favorite toys. On the other end I placed her. And then I left the room. She was pissed. I knew she had to figure this out for herself. I went into the kitchen. She was tantruming loudly. I thought I'd give her a few minutes. She was carrying on something fierce. And then silence. I rushed back in and was both surprised and amused by what I saw.

With crabbed claws Kid O had pulled the second blanket, bringing the toys to her. No attempt at crawling. That stubborn cuss had thwarted me on that. She solved the problem the way she wanted to. And was content. And probably a little bit amused. To me it remains a remarkable achievement and a testament to the sheer determination she was born with.

When she was born, Kid O had fisted up hands. Her dominant left hand even turned outward, yet that was and remains her stronger side. That gives you an idea as to what tenacity she has. I have yet to meet anyone who is harder working or more focused. When she was two, a Feldenkrais instructor, with many years of experience, told me that Kid O had the best attention span of anyone she'd ever worked with, including many adults. Even when it looks as if she is not doing much, Kid O is always trying to figure out how to move, and, occasionally, how to speak. The last word I heard her say was something that sounded a lot like "book" and that was several years ago. She obviously must think about what she wants to say. Back in January 2001 when Kid Q was born, a proud older sister would tell anyone who would listen, "Momma, baby, momma, baby, momma, baby." The people at school were entirely surprised. We were not surprised. What is perplexing to us is why she seems to be able to express herself and then suddenly not. The acceptable explanation is that she is focused more on movement over speech. The nervous system can only do so much. Perhaps.

Kid O likes to play a game we call ablebodied fetch. On the surface it looks much like what toddlers do. They drop objects over and over again to see what happens. Problem is to convince educators that there is more to Kid O's game than that. She is practicing her fine motor skills in a very focused way. If one pays attention, the observer would see the look of concentration on Kid O's face as she does things like rummages through a crayon box, for instance. This is all practice for her, even if it seems silly to the casual observer. This is a serious past time for her. Little by little, Kid O gains in dexterity. In just the last few months, she has gain use of her right arm and hand that shows a reduction of spasticity and an increase in intentionality.

When we go to visit my mother, one of the things we do is roll Kid O up to her piano and see what happens. This one time I rolled her up with her right side closer. Kid O was stymied at first, but, after a little bit, her right hand slowly rose up and hit the keyboard. She solved the problem. In all likelihood she had been working on that problem for many, many, months, trying to get her brain to send the proper signals to her right hand. To us, looking for signs of progress can be like watching paint dry. We don't see the day to day progress. We need confirmation from occasional visitors that something is going on. And it is.

Kid O is always thinking about how to get her limbs to move past the spasticity that seems to always impede her progress. Anyone who looks into those smoldering amber eyes would know that there's all kinds of mischief and a wicked sense of humor behind them. When I have moments when I feel like giving up, I see how hard she is working and why I must continue to seek out those who would help her reach her full potential.

One Primal Scream Will Get You Three... Cops, That Is

Kid O was teething. She was in pain. I was frustrated. I put her down some place safe, went into the bathroom and let out a good primal scream. A moment later I returned and placed her in her crib for a nap. Then I went to take a bath. I was rummaging around for clothes when I heard a loud rap on the door. I closed up my robe and looked out the peephole. To my great concern, I saw three policemen standing in the vestibule. I opened the door. The oldest of the three explained to me that they had received a call about a screaming baby. I picked Kid O up because the loud noises had wakened her up. The eldest cop looked like he was a grandpa. He asked me, "how old is she?" I told him she was six months. Then he said, "Is she teething?" And I told him, yeah. And told him the rest. I'll never forget the look on his face. "A mother is having a temper tantrum and for this we get called." Without saying another word the three of them left.

I have been living in a fishbowl since 1996. Shortly after Kid O was born, my nosy neighbor came over with something for me to read about pre-eclampsia and how I could have prevented it. I waived her away. I already knew that I could have prevented Kid O's premature birth. The nosy neighbor at least meant well. She was not the one who called the police on us. That was likely the downstairs neighbor whose husband was always yelling at their son. Or it could have been the couple who had given birth to a perfect son, another 90th percentile. She made a point of telling me her son's head was in the 99th percentile.

I dubbed the baby girl next door and the baby boy upstairs, baby giants. On one of the few occasions that the woman next door invited me to stroller our babies together, we stopped at this very tiny, quiet park. As we sat there, she said to her daughter, H., "You are a baby, and she is an infant." I was perplexed. I thought a baby and infant were one and the same. I also wondered, why the need to compare? Did she want me to admit that her baby was far superior to mine? She found other moms with higher quality babies to walk with. I was surrounded by baby snobs. Kid O and I were not good enough to be seen in their company. We were fine with staying with if someone locked herself out of the house. Or if upstairs mom needed some company because her husband was out of town. No trips to the playlot for us.

I felt isolated and I felt fearful. Kid O and I didn't measure up. Since she was only six months old when the cops were called, I knew or imagined that people were always assessing me in a way that they would never have done if Kid O had been ablebodied. Every scream had to mean we were maltreating her. When we tried to put her to bed just like any other parents, the police were called again. We were forced to wait until Kid O was sound asleep before putting her to bed. Every time she'd wake up on account of teething pain, I'd have to try two, three times to get her back to bed. And each time I was fearful there'd be another knock on the door.

Everyone would always ask me if Kid O was OK. No one would ever ask me if I was. No, I wasn't. I had a difficult baby and neighbors who assumed the worst. I was frazzled. I was constantly looking over my shoulder. And, on top of that, I was trying to overcome my anger and grief over not having the same kind of child as everyone else. How could I be OK? Kid O didn't like to be in the stroller. Kid O didn't enjoy the sun porch. And milestones were not being met. No one could explain to me why not. I was starting to intuit the worst. I named it to myself months before any pediatrician did. I knew Kid O had cerebral palsy. I knew that she was handicapped. I knew she was a great gift, too. I knew that I'd never take basic movement for granted. Ever again.

Our Hearing Is Fine. How's Your Listening?

"You need to get her hearing tested," they insisted. I tried to say she hears just fine, but the experts weren't buying it. So I wasted time and energy. The tests were inconclusive. My intuition told me that the tests were more than that: they were bogus. We were not there to satisfy the experts. I had had enough. I also had a baby who took, on average, four hours to feed because every train, plane, automobile and even casual conversation underneath our second floor window would upset her. The social worker on the phonebank at the hospital told me that Kid O was suffering from "distractability" and would eventually outgrow that. She suggested I find a quieter place to feed her. I was disappointed about moving us from the sun porch, but I knew I had to do something to make everything more bearable.

The social worker was right about that. What she wasn't right about was the cause. This baby didn't have "distractibility". She had a disorganized nervous system. For all we know, the sounds she heard were magnified beyond what anyone could tolerate. The back bedroom wasn't nice and sunny, but it was considerably quieter. I'd turn on NPR and we would listen to the news while I fed her. Not the way I had envisioned being with my baby, but not all a bad way to spend a day, either.

Stop and go traffic would upset KId O so much that she would cry herself to the point of vomiting. Nothing could be done to console her. Except stop. I discovered that being in her stroller would also cause her to cry hysterically. Walks to the park were tortuous. We lived close to the North Branch of the Chicago River. I wanted her to see some birds and flowers.Like any mom, I wanted to get in some sunshine and have a change of pace. Kid O would scream bloody murder. I'd try not to well up with resentment on the walks home. There weren't rocks large enough for me to crawl under, and, even if there were, deep down I understood that this baby was not doing this anger me. I wasn't always so understanding or compassionate, but I always loved her. Anyway.


I don't think anyone understood just how severely disorganized her nervous system was. Even the pediatrician who eventually diagnosed Kid O with cerebral palsy had not even the remotest understanding as to why this child was the way she was. At least this woman took the time to make a diagnosis. The original pediatrician was too freaked out to be in the room for more than five minutes. The senior members of that practice were even cavalier towards me when I insisted that this child was already teething. Yes, she was a preemie, and, yes, even for full term two months was on the early side for teething, but all the mothers up and down the block knew the universal symbol, fist in mouth, as an indicator for teething. This doctor refused to believe what he saw in front of him: a two month old baby who was teething. He told me that she couldn't possibly be cutting her first baby tooth. But she was. And, as with everything else that pointed to a disorganized nervous system, Kid O's teething pain was off the scale.

One day a neighbor who had a full term baby came over. She was convinced that she could soothe Kid O in a way that I could not. I meekly handed Kid O over to her. And, after a few minutes of inconsolable crying, she gave up. "This always works for H," she said, of her full term, in the 90th percentile baby. I took Kid O back and asked my nosy, judgmental neighbor to please leave. Thankfully she did so without creating a scene. You see, she had been watching my husband working on his catamaran that weekend and was certain that come Monday morning I was gonna crack. And that is why she was poised at the rescue. Except that this was really about her showing me that she was an infinitely superior mother than me. Months later she apologized to me because even a couple in their childbirth classes had the unthinkable: a child with cerebral palsy. So maybe I wasn't all that deficient. Maybe I was just a mom who was overwhelmed because no amount of "What To Expect" books could have prepared me to expect the unexpectable. And the unpredictable. No one could have also have prepared me for my really bad post-partum depression either. Even so I stayed with this beautiful mystery of mine and tried to understand her. I developed an almost telepathic ability. I was listening intently to her with my eyes as well as my ears. I was listening to her, albeit, in retrospect, rather imperfectly, but still better than anyone else could or would since.

The New Darkies

When people say, look how joyful or she will have a good, happy life, it may be well intentioned in desire to comfort, but, more likely than not, if it comes from an authority figure, it's meant to put the kibosh on questioning their authority. My reaction to these authority figures has been to wonder if they think I am some kind of dummy. Comments like that are only said for one reason: to shut someone like me up. The metamessage is quite clear: your kid is as dumb as a post. Now go and play on the freeway.

Mentally and physically handicapped children are the new darkies. If these kids are joyful and will have a good life, might as well sit on the plantation steps with banjo in hand and have done with it. Yes sir. We may as well just pick and grin. Beats trying to be taken seriously by those in charge. Less wear and tear on the walls. But not less wear and tear on the heart as one watches one's child slowly slip between the cracks. Even those who are paid to help don't really. The man explained to me that his organization couldn't make many waves because they couldn't alienate the Chicago Public School system. The woman who had argued the landmark Corey H case, I was told, "she will not speak to you," and then I discovered why not. In reality she didn't have anything to offer.

As I understand it, Gorey H was more about establishing quotas than helping out anybody. The change in the law gave the Chicago Public Schools broad language to work around. All they had to do was what was most "appropriate," and that is a huge loophole. There is no real objective criteria. Quotas may help for inclusion for kids like our younger daughter, Kid Q, but do nothing for kids like Kid O except help sweep them further under the rug, or, if you will, throw them deeper into the br'er patch. And once a kid is thrown into the br'er patch, they are just about irretrievable.

There is a way out, but it's an unchartered path. Form a new school. That's what this Little Red Hen intends to do. If the system refuses to integrate these kids, then I will find a way to do so. Form an underground railroad if it comes down to that. Leading these children to educational freedom will not be easy. But it's necessary. The far greater risk is to see more and more of these kids fall through the bureaucratic cracks, and that is unacceptable to me. If I have what it takes, then no child need ever be a second class citizen because they have mental or physical handicaps. This cannot be done in isolation. This requires the consent of community. It's going to require many courageous people who would be willing to have their ablebodied and perhaps even gifted children exposed to those who are typically considered less desirable. Who will join this Little Red Hen in forming a new school where community matters more than who is in what grade or at what level? I need courageous, compassionate people who are willing to truly look beyond what they see right in front of them and see, instead, content of character, as Dr. King so eloquently phrased it. Only then will we have equality of education and a chance for these typically forgotten and ignored children to rise to their potentials and to be loved and accepted for who they are. Maybe then we will be able to stand up from the plantation steps and toss those banjos aside.

Green Grass, Blue Skies and Running Water

Greetings from the reservation or from the plantation steps. Either way it's an invisible existence. Special Ed kids are expendable. Overcrowding problem? Send those Special Ed kids elsewhere. Never mind those promises of the "you can stay here as long as the grass is green and the rivers run" variety. Truth is there is an inherent not in my backyard attitude towards Special Ed kids. Special Ed kids are neither to be seen nor heard. By law the school are supposed to do what is appropriate. That gives schools a lot of wiggle room. Almost as much as defining what "is' is.

The school that Kid O is at now entirely segregates Special Ed population from the rest of the school. They built an addition to the building and the Special Ed kids are all on the main floor in a separate wing from everyone else. Regular ed kids don't have to interact. Neither they nor their parents need to ever encounter Special Ed kids. Except maybe in the lunchroom or school assemblies. Doesn't sound legal, but the law is open to broad interpretation. The teacher is good. She has resources and is willing to consider the big picture, even as she has her doubts. Even so it is problematic how often this kind of segregation occurs. Few people care about these kids. The more severe the mental handicap, the more likely the Special Ed kid is going to be warehoused.
I doubt that parents of these kids are happy about it, but I doubt that they have the resources or the wherewithal to do anything about it. . Even an educated woman like me finds this process intimidating. I looked into a hearing once and quickly dropped it. I likely would have stuck to my guns if we could have afforded an attorney. The Chicago Public Schools attorney was a shark and would have had me for breakfast, lunch, dinner and midnight snack.

I have encountered educators who assume that if parents don't step up it's because they are indifferent. Some in fact may be. But I suspect that many more are simply overwhelmed by the barricades that are in place. If a parent doesn't have the exact precise language then services will be denied. Or, if they do not even know that services exist, then it amounts to the same thing. Also helps to know exactly which bureaucrat from which department to ask for. If educators do not provide the answers then parents end up not being able to help their kids. If parents give up then the bureaucrats and administrators win. And the child loses. Big time. And, in the long run, so does society. We need more productive members of society. Not less. We certainly are the richer when we have diversity and that includes honoring and acknowledging all members of the community. Unless a person choose to be an anchorite, they have a right to be seen. And heard. This is a fundamental human right that is denied to Special Ed kids every day.

What Holmes Said to Watson

What Holmes Said to Watson

Sherlock Holmes said to Watson, "you see but you do not observe." Watson was chagrined, to say the least, to hear this pronouncement, but Holmes did have a point. Many medical practitioners and special education educators presume they know more than a child's parent. They will feign humility, "you are the parent, you know best," and then proceed to tell you how, no, they really know better. It's offensive. It's disrespectful. it's maddening. In all likelihood, most parents will not question what a school psychologist or a principal says to them. I myself have done my share of shrugging off my intuition even when it's screaming at me, because, well, why would the principal, for instance, lead me astray?

I should have insisted on having Kid O transferred from her first school to her second school when she was five. The principal persuaded me to have her stay a third year even though that didn't feel right to me. "Her next teacher has raised her own special needs kids." There are special needs kids and then there are special needs kids. This woman raised two kids with a congenital disease, which, if you didn't know them, these kids would come across as "normal". This teacher had no idea how to teach Kid O or how to really communicate with me.

As the year dragged on, my heart sank deeper and deeper. Became increasingly clear to me that the teacher, principal and educational psychologist were intent on labeling Kid O as severely to profoundly mentally handicapped, although, at the time, i didn't really understand that was what they were doing. What I did understand that it didn't matter what they saw, they would find a way to dismiss it or deny any observations to the contrary. When my husband and I presented them and the rest of the staff with a video showing Kid O taking yoga instruction, we were told that this evidence was inconclusive. And, over the years, any evidence that might negate the original diagnosis of severely to profoundly handicapped would be squashed. Any pleas I might have to really look into Kid O eyes and see the intelligence there would routinely be dismissed as coming from a desperate mother who was simply in denial. Anyone who really knows Kid O has been able to observe her intelligence, her focus, her tenacity, and, above all, her wicked sense of humor. But no friends, family or outside therapists have opinions that count for anything, and so, with few exceptions, Kid O has had very little in the way of an actual education.

Preferring Paris

There's a story that makes the rounds on email and other places about preparing for a birth, or as the analogy goes, a trip to italy, only to land in Holland. Out go all the Italian lessons. Stuck with Gouda and herring. Apologies to Holland. There are many fine museums in Amsterdam, and, of course, there's always Delft. There's an inherent snobbishness built into the whole idea of choosing Italy over Holland, and, by analogy, that somehow the special needs child is going to be lacking. Can't get much more insulting than that. Truth be told, I don't want to be in either Holland or Italy. I'd rather be in Paris.

Our daughter is neither Paris nor Holland nor Italy. She is a kid first and special needs kid second. She has a wicked sense of humor. She can tantrum with the best of them. And, so, neither all good or all bad. Just different. Of course I would give anything if she could speak or stand or walk. But she can't. Makes it more challenging. But. Not a disappointment. Would I give anything to hear her say, "I love you, Mommy?" Of course I would. But that doesn't make her lesser. The only way she could possibly be lesser would be if I were a shallow person who cared only about "how it would look" to have a special needs child. There are some parents like that, sad to say, but I am not one of them.

It does take some adapting. There is a kind of initial complaint. A whine, if you will. A question of, but why isn't she precocious like those other kids? A persistent why me? Notice, not why her? Why me? It's natural to be a bit self-absorbed when bringing a child into the world especially when so many of us buy into the"perfect child" brand, and, yes, it is a brand. That is why it's so hard to accept someone less than perfect. There is a desire to consult the brochure. Or ask the travel agent. "But you didn't tell me..." When a child is born with special needs there's no customer service to complain to. One just has to deal.

The reaction snowballs. It's not just your reaction. Or your spouse's reaction. It's the entire extended family. Awkward pause. When Kid O was born, she was a preemie. Only 3 lbs, 8 oz. A sister in-law recommended a friend of hers who had been a nanny to a preemie. The difference is that baby had been in the NICU for six months and was essentially "normal" despite her premature entry into the world. Kid O was and remains intense. What we didn't know was that her nervous system was disorganized. After few days of helping me out, the friend passed her off to me as if she were a football and bolted. I didn't even have to ask, "are you coming back?" I knew she wasn't. And so began a largely lonely journey.

Kid O and I weren't in Paris or Holland or italy. We were in unchartered territory. Not even the medical experts were able to explain to me how to care for her. The more senior pediatrician of this one practice insisted, for instance, that she couldn't possibly be teething at two months. But she was. And in more pain than most. The pediatrician we saw in that practice could not explain to me why she had painful bowel movements. If a person has weak abdominal muscles, that is what will happen. The woman who did the preemie follow up insisted I take Kid O to get her hearing tested. The exam turned out inconclusive. Not because she was hearing impaired but because she was unable to turn her head to indicate that she had heard a sound. I tried to tell the woman in charge of the clinic that Kid O had very acute hearing. A short time later, I removed Kid O from the preemie follow up program. I sensed that the research they were conducting was going to be flawed because they were really bad observers.

My Beautiful Mystery

i discovered, as an auditorily centered individual, that I am a receiver. That is what has made it possible to read Kid O the way I do. Of course, she is my heart, so why wouldn't I? It is not telepathy. But when you take care of someone, and they cannot speak and they came from you, concentration is everything.I have always had to work harder at figuring out what she needed. I was determined to figure it out. I remember looking deep into her eyes. Almost as if I were connecting soul to soul. You'd think that when a woman carries a being for close to nine months, it's be second nature. But it's not, especially early on. There is no common language. She was and remains my beautiful mystery.

There is sad violin music that accompanies us. A single refrain. Sad, lonely, imploring. Beseeching her to please speak. It is not so tragic, but it was at the beginning. I felt it deeply. I was felt such desperation. To bring a being into the world and never be given the chance to hear her voice... utterly heartbreaking. At least at first. I did wonder, in a self-centered fog, did I do something wrong? Not why her but why me. I still wonder that sometimes, but the feeling has diminished over time. There is communication. Just not in the conventional sense. I discovered, over time, I needed to listen with my eyes. I needed to look into her eyes, and, when I did, the spark of being was undeniable. They say that speech is God's alone to give, but the divine spark is within her if one but pay strict attention. I had to pay strict attention in order to discover what she needed. And, later on, to understand her as a person. How can anyone deny her humanity? And, yet, under the misconception thatspeech is what makes a person human, many overlook it. And that is what I battle against year in and year out. That outrageous ignorance. It is maddening.