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Wednesday, February 19, 2014

"Break"

"School break" is an ugly phrase amongst parents of special needs children. Break does not mean "break" to us like it may to you or the school staff that gets the time off from our kids. Deservedly, they get a vacation and I am not arguing against the need for educators to have time off. I am just shedding light on how "vacation weeks" effect families like mine and more specifically, my own family. My family is made up of five people, myself, Ellie, my husband, Mark, and our three children, Beau, our son (18 years old) and our daughters, Teale (15 years old) and Gwenn. (11 years old) At times in our marriage, our family has also included my nieces or my Mother in law who also lived with us. Our home has always been busy and full of life. Mark and I had run in home daycare for over fifteen years together, so "breaks"often meant more kids in our care. But daycare days ended about 2008 when it became obvious that caring for kids in our home was no longer the occupation we could continue as the parents of Teale. We had been barely surviving Teale's increasing behavior challenges and felt we were  putting ourselves, the children and Teale in danger. We hired extra help but the increasing care of Teale  made it impossible to do our job as well as we wanted to. We made the decision that the daycare had to be closed. Those were tough days, starting over, the uncertainty of our future for ourselves and our family was overwhelming. Six years later, we are still trying to find ourselves. Mark has a decent job, but we still struggle financially. We make far less and the cost of living has sky rocked. Not to mention the hidden costs of raising a child with special needs. I no longer work full time and because I am not college educated, I can not find anything that both pays a decent wage and respects my families need for me to be home often. I've worked here and there, but I have not fallen into a career path that is profitable for my family and flexible to our unique needs. I have vast experience in caregiving, of both children and the elderly. I know much about the special needs population and I have years of both advocacy and care taking. Yet my experience in the world today counts for basically nothing unless it is backed up by a degree. "Break" used to be a fun time. Maybe a vacation to somewhere sunny or just time with the family. Now I refer to school vacations as "survival week" or sometimes even "Hell week." Teale's behavior is off, she misses school, routine, her friends, but doesn't verbalize those feelings, just strikes out at us, her family. Today I am worn, a rage that caused a broken lamp, glass everywhere this morning has also caused my heart to ache. Teale lashes out at me, like I'm the cause of all her deep anger and frustrations. I am usually good at not taking it to heart, but today, I am feeling drained and angry at her pain. My PTSD is up, I'm on my guard, waiting and or wondering if she will snap at me again. I feel anxious, old and tired. I need to take better care of myself. I need to eat better and exercise, but I'm stuck and feel broken at times. It's stress that makes me want to eat sugar and I'm in a vicious cycle. I think it still amazes me how challenging life is with Teale, even though these are the golden years, compared to some. We all suffer, we all live our life in fear and we tiptoe around Teale's needs. May God hold us in the palm of his hand & may survival week fly by...with not too much of my spirit being broken. 

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