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Saturday, August 23, 2014

Words Do Hurt

I talked her into walking over to the elementary school play ground because I was taking care of my friend's son, Colby and he really wanted to go. It was my second attempt at asking her and to my surprise, this time she said yes. So she and I walked and Colby rode his bike that he had brought. Caring for the two of them all day is tricky, Teale and Colby both have their own issues. Sometimes their needs clash and it can be not so pretty! But I get Colby and I'm one of the few his Mom can trust to care for him and sadly I get that too. I can't leave Teale in just anyone's care, we need people we trust, who have understanding, humor and a whole lot of patience! So having Colby adds to the stress of the week off with Teale, but he also brings a different joy. He accepts Teale, he gets her and for him, she is just Teale. When I told him I couldn't leave Teale home to take him to the playground, Colby said happily ~ "She can come!" So as we walked and Colby rode, I was aware of how we must look. Teale's gait is off because of her cerebral palsy, she talks loud and her speech is not that of a fifteen year old girl. Plus there is that, she is fifteen, walking with her Mom to the playground. The image is kinda funny, as she and I look much alike, but she is bigger and taller than me. Sometimes it feels like she is my shadow and I realize this will be my life, possibly forever. I picture myself an old lady and Teale forty something, still following me, her an image of my younger self. The walk was filled with me shouting to Colby to wait for us or not to go too far ahead. Sometimes, although Teale doesn't always follow rules well, (like be nice to your sister :) another person not following rules agitates her. So I was thankful Colby was listening so well to my instructions. Overall, it was going smoothly but as we walked I thought about what was ahead? Would there be other kids at the playground? Would Teale and Colby get along with them? As we approached the playground, I realized no one was there and I felt both relieved and disappointed. Teale and Colby have special needs and neither have much opportunity, besides at school, to interact with other kids, so a public place like this often is the best opportunity. I knew Colby would want to run around and play, Teale may just sit and watch him, she's aware of her size and seems to kinda get she's too big for a playground. So Colby ran off and as I went to sit on a bench with Teale, she handed me her water and walked toward the swings. She used to swing for hours in a day when she was little, but these days she never swings at home anymore. I've seen her on the swings at her school, but there she is comfortable and her friends are swinging too. Somehow this move by Teale surprised me and to tell the truth saddened me too. In elementary school, Teale swung, a lot both at home and at school. We had a special needs swing with a back when she was small that my husband pushed her on for countless hours. He would sing to her and sometimes she would sing along. The amount of time he devoted to Teale was astonishing. I would have Beau and Gwenn while he stood outside in all sorts of weather pushing Teale and singing. The back and forth rhythm calmed her, it brought her peace and therefore it brought our family peace. She didn't want me, so giving him a break was impossible. The swing brings back memories of isolation too. Teale was alone, she really had no friends to hang with as a child, so the swing was her favorite place. As she grew we got a swing installed inside and there she would sit, watching music videos for hours on end, swinging back and forth. The sound of the creaking swing actually calmed me. I knew where she was when I heard it and I knew she was safe. Those were the days when she often went after our youngest daughter, Gwenn, so hearing the swing stop moving meant I better check on her, or Gwenn might get clobbered. In the Summer Teale's desire was to be outside again, so we bought an upright hammock swing that she could push herself on. We also got her a CD player with headphones so she could swing and listen to her music. Many years of swings go through my head as I watch her, she is alone swinging and watching Colby play. My heart breaks a little at the memories. I have this intense visual in my head of her fifth grade picnic while she was still in an integrated setting with typical peers. The kids were all enjoying time with each other, playing fun games and I was volunteering at one of the games. But I could see Teale alone, on a swing, going back and forth with just adults within sight. She had all these kids but she was more comfortable being on a swing by herself. Back then I knew I wanted her at the school she is at now, for just this reason, all the typical kids had grown above her and even surrounded by peers, she was alone. Suddenly my mind changes direction as a huge group of boys approaches the playground. They are older than Colby but look younger than Teale. They may think it is odd a fifteen year old is there with her Mom swinging. I watch as Colby observes them, but then he walks to Teale and sits on the swing next to her. I guess he feels safer with Teale than he does with strange boys, somehow the irony of this strikes me. Teale and Colby both suffer a lot of isolation, yet here they are, finding comfort in each other. The group of boys start a game that is similar to Marco Polo, just played on land instead of in a swimming pool. The game seems pretty difficult for the boy who is "it." He walks around with his eyes closed and the other boys are hiding up high on the playground equipment. Then it happens, one of the boys who is hiding calls the boy who is "it," a retard. My heart jumps, normally I would address this, normally I might try to make this a teachable moment, but I'm worn from the week I've had. Weeks off from school are tough for Teale and today has been edgy and she has been off. If I approach the boys, I know it may not go well. I know the tears sitting in my eyes behind my sunglasses may fall down my cheeks. Teale has a difficult time with emotions of others, especially mine or Mark's. If I cry, it actually upsets her and often causes anxiety and anger. She can not process sadness and wants you to stop being sad instantly. I sit there thinking about all the people I'm letting down by not speaking up. I'm part of a community that many are not. I love many people who have developmental delays. I know how amazing these people are and the gifts and the joy they bring to my life and the world. If our daughter Gwenn was here, I knew I would have to say something. I also know our son has been in similar situations and has been brave enough to educate. I feel like a fake, yet I sometimes need to give myself a break, because it is hard being Teale's Mom and this week I'm just drained. The boy says it again to his friend, I look for a reaction from Colby but am pretty sure he can't hear it. I know Teale can't and I'm sure she would not understand the word anyway. Just my heart breaks and I wonder if the boys parents know he uses the "R" word? I wonder if he has ever been educated on how hurtful that word is? I wonder if he cares. His friends don't correct him, even though I'm sure at least one of the boys knows who I am and who Teale is. We are in my neighborhood, just minutes from my home and honestly, most neighbors know us and they know Teale. I decide not to say anything, I feel guilty and I feel sad, but today I'm just not strong enough to confront a group of boys. So I'm addressing it here and hoping at least one parent, one person, will share with their loved ones that yesterday my heart broke just a little bit. Mostly because my developmentally delayed daughter did nothing to deserve the challenges that she lives with. And contrary to that old nursery rhyme, words do hurt. 

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