All the struggles and triumphs of my little family of 3 who all share the very misunderstood condition of Tourette Syndrome.
Tuesday, February 5, 2013
Why I haven't updated
I haven't written a post in awhile, and I'll try to explain why there's been such a lull. When the Newtown tragedy happened, there was a blog post that was circulated around the universe called, "I Am Adam Lanza's mother." In this post, a mother of a child with a mental illness talked about how she could relate to the mother of the child who grew up to kill a large number of children after killing his own mother. And let me tell you what struck me very hard in reading the comments and numerous counter-blog posts - the amount of people who railed against this mother for speaking about her child's struggles in a public forum. I was devastated to read that so many people thought she was exploiting her son or embellishing his troubles for attention. There were other mothers of special needs children who scolded her for painting her child in a negative light or for publicly humiliating him. And I brooded on this for a very long time. And then I read my previous blog posts as if I were Perrin reading about how difficult some of his behaviors are. I pictured him reading about his psychotic episodes that he very likely doesn't remember happening. And I weighed his possible reaction against my desire to not only chronicle our lives for our own record but to possibly help other families that may be living with a child with Tourette's. Or a family who has been fighting the losing end of a public school battle and may need some encouragement to pull that plug and homeschool. And I honestly don't know where to go from here? Perrin already resents me for pulling him out of school because he doesn't fully understand what went wrong there and sees me as the mean mom who took him away from his friends. He gets very angry with me if I try to guide him to a place where he is able to work through his tics so that he can do schoolwork. I am already the bad guy. I don't know if there is anyone that I have helped or if it's worth continuing to write about our family if it means potentially embarrassing or upsetting our son when he's able to read this on his own. My hope is that, at some point, he would want to be a contributor and be able to speak with his own voice what he goes through. But that time is not here yet. And I'm not sure I have the right to speak for him. John never told any of his friends in high school or college about his Tourette's, and he doesn't speak openly about it at work. Is it fair of me to publicly display Perrin's disorders for the world to see before he is mature enough to consent? I would honestly love to hear any opinions from those who have read this blog. In the meantime, I'll brood a little more.
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Tucker, do not beat yourself up. I think you have helped a lot of people who do not know about Tourette's (including me). I think it is good to share our stories so we do not feel so alone. I like your blog and learn a lot from it.
ReplyDeleteFor what is worth, I admire you for homeschooling. I know I could not do it.
You are blogging YOUR journey and experiences. He happens to be part of your world. We can never know what they will think about it later and really, we just need to move ahead doing what we think is best and trusting that we can only do so much to build a relationship with our kids that ensures them we meant them no harm in the process. We do that for countless decisions. This is just one of them. Hugs, mama
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