Friday, April 30, 2010

Imagine That. Kid O For a Day.

The following is my contribution to Blogging Against Disablism Day, which is May 1st.

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.

Saturday, April 24, 2010

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.

Friday, April 23, 2010

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.

Thursday, April 22, 2010

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.

Tuesday, April 20, 2010

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.

Tuesday, April 13, 2010

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.

Monday, April 12, 2010

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.

Why Fumbling About In the Dark?

Because Stumbling About in the Dark was already taken. Next question.

Stumbling, fumbling, and mumbling best describes my experience as a mom of a special needs kid. Especially describes trying to get services for our older daughter and trying to navigate the IEP process.

These posts might end up being edited a lot. I expect that I will be needing to process old anger and grief. So strap on your seatbelts. Might be a bumpy ride.