Saturday, July 16, 2011

Hurt

We were on our way home from soccer, it wasn't the first time an incident like this had happened. Teale is 12 years old, there have been countless times, but as she ages I feel like people "get it" better and the incidences are less. Strangers who don't know the whole truth, find her to be "different, too loud, obnoxious, rude or just weird." Sometimes they stare, making her and our family uncomfortable, sometimes we see the whispers or they may be more obvious with their judgement and words." Then there are the times we have been directly confronted by people who think they know more than we do, they think she is a bratty or an ill behaved child and needs to be put in her place. They judge Mark and I, treating us like it is "our fault" and they could do better than we are. There have been times such incidences have brought me to tears, a small part of me may have believed it. I was not confident in my abilities and would take to heart the meanness I encountered in the world. It hurt, every word, every stare, every whisper, every glance and every time a person would turn away, avoiding eye contact with me. It was like a piece of me broke, every time. We aren't a family who has kept our daughter with special needs isolated from the outside world. We haven't hidden from the possibility of hurt, we are out there, living life almost the same as any one else, but with much risk. Every time I leave the safety of my home, I am on my guard. I wonder what will happen, if Teale be ok or if strangers will judge and hurt me. Our son, Beau plays many sports, Mark and I both enjoy seeing him play, but it is often with fear we go to his games. Sporting events are a common place for stressful incidents, there are always so many "new people" who need educating on our life. I have handled this in many different ways over the years, talking to parents of other team mates openly about our daughter or even writing letters to the whole team. Usually we end up winning people over, we work hard at being Teale's parents and I think people can see our love and commitment. The opposing teams are tougher to "win over though." They only see a small snippet of our lives, maybe they get it, maybe not. A few days ago Teale was extremely loud and happy at a game. A boy on the opposing team made a sliding "tackle" at the soccer ball, winning it for his team. Teale found his "falling" hilarious, over and over again she would laugh, shout, clap and talk about him "falling." The boys on the opposing team didn't understand, they just found her obnoxious and were talking about her on the field. My son, Beau, heard there hurtful words, "She's obnoxious, someone should shut her up!" There was more I'm sure, but Beau sometimes protects my feelings. After all I have been hurt so many times. Beau has heard my stories and seen me cry when a stranger, a friend or even a family member has gotten the best of me. He knows that sometimes I am forward and brave, sharing a small part of Teale's story, hoping to educate, even just a little. Then there are the times, I crumble, too worn from the every day struggle to educate one more person. This time Beau was feeling brave, he heard the boys talking about his sister, thinking that she was making fun of them, they were insulting her. We were in the car on the way home from the game when he shared his story. Hearing them making fun of his sister he took a stand, right there on the soccer field he educated at least two boys, telling them a snippet of her complicated story. "That's my sister, she has brain damage and I would appreciate you not making fun of her." Their faces were blank, often there is disbelief with such statements. I often find people think of brain damage as physically challenged more than Teale presents. People are more polite to the family who has a child in a wheelchair than they are to my family. We were lucky and won the battle to teach her to walk, she was two years old before she took her first steps but there is much irony in this. There have been times in her life she has needed a wheel chair and during those times there is a different tone from the public toward Teale and us. They "excuse" her behavior and her uniqueness with more grace, the understanding is there and the judgement of us is less. It's ironic to me that we worked so hard to make her be the best she could and yet, if she had never learned to walk, the hurtful comments from the public may have been less. There are many people in wheelchairs with far more "normal" lives than Teale will ever have. Teale has broken her good leg twice and has had surgery once on her leg affected by cerebral palsy, all three times a wheel chair was necessary. Those weeks of Teale in a wheelchair taught me about a different prejudice attitude in this world. The empathy was more from the public with our daughter using a wheelchair, even though the life for us was in some ways easier. With Teale being immobile she is less likely to get into trouble, we were in more control of what she was able to do. Teale in a wheelchair is like taking the skinny girl and putting her in the "fat suit" you see a shift in the way the world treats you. Teale's brain damage affected her severely mentally, physically not nearly as much. To the trained eye, her gait is off, her right arm and hand hangs differently and is much smaller. She never uses her right arm appropriately and it moves awkwardly. To a stranger not looking for such things, they may miss what we see as obvious. As I said before, the incidences are less as she grows. It is more apparent to many that she talks louder than what is socially appropriate, that her voice has a quality to it that is unusual because of her profound hearing loss and that she walks with what looks like a limp. I am open to the public's questions about my daughter, I will share her story in a heartbeat when in the right "place." What hurts me more is the wondering what others may be thinking, especially when she is melting down in public. When you stare at me with what looks like judgement, not compassion, I hurt, wishing you would offer me a lifeline. My skin is thicker as I live this unpredictable life, but I a human and want acceptance. So, as Beau told the boys on the soccer field, we would appreciate you not making fun of Teale, not because she understands your cruel words, but because we do and we love her, unconditionally.


P.S. One of the boys on the soccer field later apologized to Beau. I was touched by his bravery as much as I was by my son's.