This is inclusion

Yesterday was field day at school, a day that I both love and dread each year with my students. I love it because we get to experience the closest thing to full inclusion that exists for m kids in this county right now. We go out and participate in every single activity that I can possibly modify, adapt, or make accessible alongside the general education population without any distinctions made (no special activities are designated for us, we do not attend at a special time or sit in the back row). We are kids having fun in a swirling mob of other kids. I dread it for a few reasons: 1) the logistics of planning how to adapt activities and to "off road" our wheelchairs up and down giant hills that are never accessible, 2) the logistics of mobile "crash carts" that must be assembled and taken everywhere without attracting attention from the other kids, 3) stupid adults who don't "get it". I must say that my kids had so much fun yesterday and we were able to adapt probably 70-75% of the activities for them to participate in. Favorites included t-ball, the 50 yard dash, the sack race, and the basketball toss. Apparently I throw like a girl (um, I would be worried if I didn't). A few run-ins with clueless or even prejudiced people made my protective emper flare momentarily, but then we moved on and had a blast. For example, a really cool semi-truck came that had a bowling lane in the trailer. I could see the parts to quickly place a ramp over the steps and make it accessible but the two men running it said there was no way to make it so our wheelchairs could go into the trailer, but we were welcome to carry the kids up and inside. HUH?!? Like that is safe, or legal, or not flat-out prejudiced. After my mini-education on discrimination the guys still played (or maybe were) stupid so we just let our sweet girl who can walk cut in front of the 50 other kdis in line and have a turn. We were willing to wait in line if they were willing to make it accessible, but not otherwise. Our other run-in was with a parent volunteers at t-ball who kept directing children to go around us in line and when I pointed out that we were in line replied "well, I just saw the strollers and the babies and thought you were only watching.". WHAT?!? I quickly pointed out that they were wheelchairs, that my kids are in kindergarten, and that they don't generally like being called babies. I said this very politely, but was told not to be snipey. Whatever. We spoke loudest with the incredible hits we made and the laughter that echoed as each child ran the bases. Give us a fair chance and you will be amazed by the things we can do. Label us babies and pass us by, and you will never know the potential we hold. :) Plenty of other people made up for those two issues - a bunch of fathers working the giant parachute jumped in and helped our kids be able to run in and out from underneath the parachute and mae sure we all participated and then asked very insightful questions about our program. At the sack race, kindergarten kids who know my kids from inclusion were cheering on my kids as we raced. ;) A little girl helped my kids at the basketball toss, and at bowling countless kids cheered on my little one who got the chance to bowl. All in all it was a great day. Everyone had a great time, but most importantly they had a great time alongside their peers without any great production made about it. This is inclusion- a little adaptation, a lot of creativity, many tender hearted children, and a focus on ability rather than disability. We make it seem so much more complicated than it needs to be. And instead of the fearful unknown that it is t many teachers, it is beautiful, it is natural, it is children being children before adults muddle it up and complicate it.

She left her handprints on my soul

She was mine for less than 6 months, but the mark she left upon my heart will last a lifetime. When you are attending college to become a special education teacher, it is a common refrain from professors and advisers and supervising teachers that you must learn to separate you heart from your job in order to avoid "burn out". Perhaps this is sage advice, but I can not fathom trying to educate a child without forming a relationship of trust with them and in turn, I can not imagine building up a relationship of trust and understanding without loving the child. The children in my class are "my kids" and I willingly take the risk of loving them, of letting them into my heart, because I simply do not know any other way to be a teacher or a human being. She was "my kid" during my first year of teaching, a rough year for any teacher and an especially challenging year for me as I was indoctrinated using the "sink or swim" method. Her arrival was timed with Christmas, and so she was my present for the new year- a beautiful little girl with a multitude of challenges, so medically fragile and willfully strong. For 5 months I celebrated her steps, I learned the meaning of each sound that she made, I puzzled over ways to prevent her from pulling out her life-sustaining tubes (trach and g-tube), I explored the world with her and her friends. Then with little notice, just weeks after her fifth birthday, she was gone. I had played the odds of teaching open-hearted and lost. At first coping was focused around her family- preparing a yearbook signed by her classmates (fingerprints that I labeled) and teachers/therapists, printing all of the photoraphs we had taken of her, gathering her artwork, colecting donations to help the family pay for travel expenses, and sending out cards to them that came in from classmates. Then coping became about making it through the rest of the year in the classroom where she was noticably missing. Finally it became about finding the peace to know that loving her was worth the pain of letting go, and that the risks are worth the rewards. Yet I could not settle on such an inward transformation not somehow being outward; this little life has forever changed mine and I needed (need) that to be evident. So in a delicate line-drawing upon my back I had a tattoo plaed of a child's cupped hands opening to release a butterfly. It is the closure I needed, the permanent reminder I hold dear of how one life short on years can have great impact, and the hope (faith) I have for the future that love is always worth the risks.

Conflicted

This is my first year teaching in a program for students in grades Kindergarten through 2nd grade who have multiple and/or severe disabilities. While I could write a novel already on the rapid learning I have had to experience (because no one ever thinks to provide you with necessary information until after you manage to screw up - not with the kids, with curriculum guidelines, classroom organization, unwritten rules, etc.), I am currently very conflicted about one hot button issue. Inclusion is the hot topic in our district. You would think it was a new invention the way it is being talked about and handled instead of a practice that has been demonstrated beneficial and successful at all grade levels and at all ability levels (based upon what criteria you are assessing). We are not actually anywhere near full inclusion, and I don't think anyone mentions that, but we have inclusion committees at every school and we dance prettily around the issue to keep everyone happy (or at leas amused). My class is in a general education elementary school but my students are primarily self-contained, if not entirely self-contained (the most inclusion any student receives is up to 2 hours per day). I can argue both sides of this issue convincingly after hearing all of the debates since I was in high school and am not conflicted over that. What I am conflicted over is a long-standing "tradition" at my school. Apparently it is traditional to have each and every class at each and every grade level come into my classroom to "meet" my kids, to be "introduced" to them, and to "ask any questions they may have" - all in the name of promoting acceptance, tolerance, and inclusion. While I agree that information is power and I support a climate that welcomes diversity and is accepting and appreciative of all students I do not feel like this is right. Having four or five classes at 6 grade levels come into the classroom (over 600 students) to sit in rows and stare at my kids just feels wrong. My kids deserve the same dignity, respect, and integrity that is offered to all of the other students. They are not tools t be used in an object lesson. They are incredible individuals with unique thoughts, unique spirits, with unique desires, with unique likes and dislikes - but they do not have the ability to speak for themselves and say whether or not they want to be used in a lesson on disability, inclusion, tolerance, acceptance, and being different but still the same. So I feel that it is my job to speak for them, and my voice in my heart is screaming "NO!", it is screaming that this is degrading, that it is dehumanizing, that it is only further separating my children from everyone else in an "us and them" mentality, that instead of creating inclusion it will create a "school mascot" situation where they will be patted on the head and talked to as if they are cute little pets. Yet this has supposedly been done for years with tremendous success. Am I overreacting and reading too much into this? Or am I the first person in a while to consider that perhaps my children deserve a little more dignity and respect? Please share your opinion!!

The List

Every so often I open up the wooden box that holds my most precious little treasures and remove a single piece of paper from the plastic bag that protects it so that I can not just read the list of dates and times that cover both sides but touch them. I can feel the writing that records each time my infant self danced with death, and each time those who love me cut in and reclaimed me. Some of the dates are simply noted with a date and a time, some are noted with a date and time, others indicate that 911 was necessary, and then a few are circled to indicate that these were the episodes when I danced with death the longest. One in particular is circled in red, the episode that changed how my entire family views life. When I was 5 months old, my parent's were asked to meet with the group of doctor's that were providing my care at Children's Hospital in one of the conference rooms. I had been diagnosed with what was then labeled "near miss SIDS" a month or two prior when my mother discovered me without respiration or a clear pulse shortly after I had fallen asleep. No medical explanation for the severe apnea episodes was ever established, and so after running every test they could imagine the doctors had sent me home with an apnea monitor and the reassurance that I would outgrow the episodes by my first birthday. The issue was that in the early 1980s the apnea monitors were not very portable, and they did not function at all in automobiles. My parents had stayed out later than they planned, and on the drive home I accidentally fell asleep in the backseat. My mother was frequently checking my breathing, but in between those checks I slipped quietly into an apnea episode. When she discovered that I was not breathing the choices available to my parents were limited - the stimulation that usually roused me was ineffective, there were no cellular phones, and attempting CPR on the side of a rural Michigan road could be disastrous if I did not respond a there was no way to summon help. My father immediately began to drive to the nearest hospital while my mother attempted CPR (CPR in a Jeep at night is quite a challenge). When they arrived, my mother ran into the Emergency Room carrying me (at that point I was a limp infant lacking both respirations and a heartbeat and had progressed from the familiar blue tinge to a grayish color) in her arms and screaming. She noticed a doctor behind the counter and literally threw me to him screaming that he had to save her baby. Somehow he managed to convince my little body to restart itself, but he was so certain that I would crash again and not survive that he traveled with me in the ambulance for the transfer to the Children's Hospital well over an hour away. After stabilizing me and conducting further tests, my parents were asked to attend that meeting. It was at that meeting that the doctors, among the best pediatric physicians in the region, pronounced that I had been without oxygen for far too long and had suffered profound brain damage. My prognosis was officially changed to terminal with a life expectancy of less than 1 year of age, and my parent were told that even if a miracle occurred and I managed to survive longer my brain had been so badly damaged that I would never progress any further than the skills I possessed prior to that night in the Jeep. They strongly encouraged my parents to leave me at the hospital and allow the medical staff there to care for me until my imminent death. I do not know how my parents processed all of the information that was thrown at them, but I went home with them very soon after that meeting. I continued to have apnea episodes, some minor and some severe enough to require full CPR, up until just before my first birthday and then they abated just as originally predicted. As far as the doctor's predictions, my parent's fears dissipated slowly as I met each developmental milestone and then were dismissed when I began to read at the age of 2 1/2. The only remaining signs of any brain damage are gaps in my abilities to process visual-spatial information. There is no medical explanation for how or why I defied every single prediction of the doctors and the word miracle has been used even by those in the medical community. When I was sixteen years old, my mother and I returned to the emergency room where I was first treated on that night when I was 5 months old, and had the opportunity to meet with the doctor who had cared for me and gone above and beyond to ride with me in the ambulance during my transfer to Children's. As my mother began to explain who she was, he instantly remembered that night and offered condolences to her for her loss as he was certain that I had not survived. It was an amazing experience to be able to thank him and to be a living example of the fact that statistics are just numbers on a page and God is never limited by something so small. As a result of having to fight so hard to keep me alive as an infant, not to mention an entire childhood of battles, my family learned to live in each moment with no regrets. I never had any illusions growing up that I was invincible or that lie was a game; I knew from as far back as I can remember at least on some level that every moment was one that according to everything medical science knew I should never have had the opportunity to experience. So far I have now had 26 "bonus" birthdays that my family was told I would never experience (I just turned 27) and 26 "bonus years" of incredible experiences, memories, and love. When I become too caught up in the small things in life, when I lose sight of just how incredibly blessed I am, when I begin to get frustrated over the medical issues that continue in my life, or when I just want to reconnect to the incredible gift that each moment of my life truly is and the responsibility that I have to live my life in every moment with purpose I simply return to that list of dates, times, and the amazing effort that not just a family but an entire community offered up to give me a chance to be alive.

Perfectly Imperfect

One of the greatest gifts of humanity is that of imagination, the ability to look beyond the situation and see what could be, what might be, what is possible, or even what may see impossible but wonderful. Imagination allows all progress to occur, it allows for innovation and invention, it allows for creativity and art, it creates opportunity for reflection, it offers beautiful escapes. It shapes friends for young children, dream worlds, wishes that we hang upon stars, goals that we strive for, worlds that we long to create, and an ideal of how we can make a difference. Yet with imagination comes a darker side, the ability to look at a situation and imagine all of the possible different outcomes, to ask over and over the two word question that can rip apart the soul, "what if?". We can spend our entire lives imagining "what if" things had been different, "what if" one event had been changed, "what if" this or that had never happened. I used to imagine what my life would be like if I had been born healthy, with every gene perfectly in place and every cell programmed to work exactly as designed. "What if" I had never experienced repeated periods of severe oxygen deprivation as an infant? "What if" I did not have dysautonomia, juvenile onset SLE, ataxia, etc.? "What if?" I had not been the child that was always slower at physical activities, that sometimes actually wished that the hidden medical differences were somehow physically apparent so that others could better understand, that was intimately familiar with hospitals and doctors offices? In my heart I rebelled against "being different" and detested that which I felt made me so, even as I was drawn to and adored the differences in others. As I have grown older I have realized that trying to imagine my life without these characteristics is virtually impossible. It is like trying to imagine a world in which you exist but you are a stranger to yourself. From where I am now, I realize that in order to become the exact person that I am, in order to be able to offer the exact set of skills and insights in my work as a teacher and in my life, in order to have the appreciation of life and the awareness of its incredible fragility, I could not have traveled any other path. As strange as it may sound to anyone else, I am thankful for the exact experiences that I have had, for the exact way that God has made me, and for the fact that I was made perfectly imperfect. That does not mean that I do not become frustrated at times with the limitations of my body, with the seemingly endless medical tests and appointments and medications, and with the conflict between the desire of my heart and the function of my body. There are times when it seems overwhelming, or when it seems like almost any other way would be easier. But no other way other than the one I have already traveled could have lead to where I am now, to who I am now, which I would not sacrifice for anything. Even though the journey has been and most likely will be incredibly difficult at times, I can say with certainty that the views along the way are breathtaking, the companions you meet life changing, the wisdom you gain beyond expectation, and the destination worth any sacrifice. So instead of following my imagination along the endless loop of what if, I have discovered that I am incredibly thankful and proud of the fact that I was created absolutely perfectly imperfect.

I prefer INtolerance

Over the past several years, schools and activism groups have grabbed firmly onto the concept of tolerance. The ideal is presented as creating a culture of tolerance, where all differences are recognized and accepted, where diversity is centered on tolerance of one another. We teach tolerance in schools as part of "diversity education", we preach tolerance from pulpits, we sell tolerance as a movement and an idea. At first this seems like a tremendous improvement in society, to create a culture where there is not open discord over differences, where there is no open exclusion based upon diversity, where everyone is welcome because of tolerance. However, there are significant undertones to the message of tolerance that I refuse to accept. Tolerance does not mean that individuals who do not meet the current social definition of "normal" will be appreciated for their differences, or valued for their unique abilities and insights, or treated with respect and dignity. All tolerance guarantees is that their presence will be allowed and accepted without open hostility and aggression. It does not guarantee that individuals will be viewed as having an equal purpose, equal value, equal worth in life but only that they will not be treated with forthright disrespect and scorn. The very use of the word tolerance suggests that those who are to be tolerated are less desirable, less worthy, less valuable than those who are tolerating them and that it is only through the grace and kindness of others that they are tolerated. For example, we appreciate fine works of art, gourmet meals, beautiful sunsets, symphony masterpieces. We tolerate bugs at a picnic, long lines for bathrooms at concerts, scorching hot cars in the summer time, and relatives who invite themselves for a visit and stay too long. No one wants to be tolerated. Tolerance should never be the goal we set, the message that we send as being what is appropriate. Instead we should be working towards creating a society where differences are not tolerated but valued, where there is no question about the intrinsic worth of a person regardless of how they may meet up to the standard societal definition of "normal" or "appropriate" and where diversity is not a buzz word but a natural part of daily life. I can not imagine why anyone would ever desire to limit themselves to just tolerating someone who is not identical to themselves when they could share with them, learn from them, and value each of their uniqueness.

Rewriting the Bible

As part of the curriculum of the day camp, we teach the Bible twice a week in my classroom. Our lessons this summer are about the different names of God in the bible (i.e. Jehovah, Abba, Elohim). Apparently my kids are writing their own version of the Bible. Below are some of their personal adaptations.
* God's son? Now named Eve.
* Jesus? He is coming back to the city to visit each person who believes in Him and hang out with them.
* Abraham? That refers to Abraham Lincoln.
* When your sins are forgiven God puts them far away, like in a desert. (which totally explains Los Vegas)
* God loves everyone, but He loves some of us more than others.
* God created video games, swimming pools, candy, dirt bikes, televisions, and money. These are needs, not wants.
*God is everyone's Father, but we don't need anymore brothers or sisters. (quote - we were talking about God being everyone's father and the kids were talking about the idea of us all being brothers and sisters, and one boy said "No!! I don't want any more brothers or sisters!!")
* Drawings of Jesus are actual pictures of Him - apparently there were cameras 2000 years ago.