A Few Others

N was the child who initially grabbed my heartstrings and made me consider taking a job working with special needs kids. He was not in my class, but I had been a substitute in his classroom in the beginning of the year and was absolutely intrigued by and devastated over his condition. He has something called Lesch-Nyhan Syndrome which creates a neurological dysfunction producing a desire to harm himself. There are a bunch of other physical and mental dysfunctions that accompany it, but most striking is the fact that if given the opportunity, he would eat himself alive. Yes, you read that correctly. His arms are restrained in braces so that he cannot eat his fingers, his teeth are shaved down so that he cannot eat his tongue, he is fed through a feeding tube, and he is in almost constant pain or discomfort. He cries in pain several times a day, and every single time I want to cry right along with him. Children with this disease most often die in their first decade. He is such a beautiful child, too... it is just the saddest, most heart wrenching thing. What a life to live.

S brought me more joy than any of the other kids because her quirkiness is incredibly endearing and she just lavishes love freely. We connected right away. She loves to be close to people, so if you are sitting in a chair, she will bring her chair literally as close to you as humanly possible. If she could get away with it, she would just crawl right on your lap. When Reade came to meet the kids, she threw her arms around his neck right away just like a monkey and wouldn't let go, even when he stood up. She is losing her vision, so she wears these thick glasses and looks at people in a really funny way. She might be one of the quirkiest people I've ever met, but her quirks are endearing and often have me laughing. For instance, the girl loves carrots. The way she eats them you'd think she would have perfect vision. And in the middle of class time, out of nowhere, she will announce loudly, "I love carrots!" She is verbal, but only selectively; for instance, she will not answer "yes" and she refuses to say her own name. Every now and then she'll call out my name or one of the assistant's name for no apparent reason. Sometimes, she'll follow it up with, "I love you". How could you not adore this child?

K has Cerebral Palsy. She has a twin who is perfectly normal, a father who won't even speak to or look at her, and a mother who gets mad at her if she comes home with marker on her hands. We have reason to suspect that she might be abused, as well. She only has one functioning hand and has a very pronounced limp. Movement is very difficult for her. A 3rd grader by age, she has to wear a bib all of the time because she drools a lot. She can eat regular food if it is pureed, but most of her nutrition comes through a feeding tube (which was incredibly intimidating for me to learn how to operate -- you literally pour milk directly into her stomach). She cannot speak but somehow understands fully both English and Spanish while only recognizing some letters and numbers in print. I look at her young life and think that if I were her, I would have very little to smile about, but she might be the happiest person I have ever met. Genuinely. She smiles all the time, and her face lights up when she sees people she knows. She loves everyone, mothers all of the younger students, and accepts without condition.

A was not one of my kids but was in the class that we shared a room with. She has a seizure disorder called Rett Syndrome. It is a degenerative disease, meaning that she gets worse and worse as she ages. She is in 5th grade now, and some days has up to 4 seizures in a day. Her parents rarely bathe her or change her clothes and made a comment to one of the assistants that, "she'll die soon anyway". They refuse to take her to the doctor, so they just arbitrarily raise or lower her medication which makes her act like a zombie. She lives her life in a wheelchair and has use of only one hand. It is nearly impossible to make her smile unless you sing "The Wheels on the Bus" which almost always immediately evokes laughter. Really, the only other noise she makes is a very sad moaning when she is uncomfortable. Unfortunately, we heard that noise every day; sometimes all day long. She breaks my heart.

G is severely autistic. It took me a long time to find what I called our happy place. She was not actually in my class, but in the same classroom and so I was around her all day long. I genuinely did not understand her or why she hit her chin or squeezed her head between her two hands while making awful noises. It seemed that the only thing that made her happy was to play patty cake and how many stinking times can you play that in a day before you want to pull your hair out? One day, though, I was given the opportunity to feed her lunch and spent the time speaking Spanish to her (she is another one who is nonverbal yet understands two languages -- amazing if you ask me). After that, I began to see the sweet side of her come out and started studying her too. I won't list all of the little things I figured out about her, but I fell in love with this incredibly quirky and particular child, and making her smile would always bring me tangible joy.

E has Down's Syndrome. She was perhaps my most difficult student because she was stubborn and could be quite obstinate. She warms very slowly to strangers. She can speak but prefers to sign. (I always meant to take sign language classes but never got around to it... would have been helpful here. Bummer.) Most often the things she would verbalize were telling the other children "no" or to go to time out. She did not discriminate, though; she put herself in time out all the time too. Cracked me up. She was also the one who would come in and greet each child by name, looking them in the eyes, and often with a hug. She was the only person who was able to get our autistic girl to socialize and play with other children. She was also the most flexible child I have ever met. Sometimes I would look over and see her sitting with her legs up around her head and her tongue reaching up around her nose. She had me laughing all of the time.

There were days when I felt like between the cacophony of noises, the unpredictability of behaviors, and the ridiculously odd quirks that some of these kids emanate, that I would need to head straight to the loony bin by the end of the day. There were other days where I felt like all I could do was laugh. All day long. Still other days, I was gripped by the sadness of some of these situations and struggled to distance myself enough to function as their caretaker. One thing remained constant, though. Every single day I left that school, I was in awe of how lucky I am. How blessed I am. To have a working body, a working mind, people who accept and love me for who I am. What a privilege to work with children who inspire you to be grateful.