This blog post floored me. Not because it was shocking, or anything I haven't thought a million times myself...but because it IS so honest. I pride myself on being the "tell it like it is" kind of gal, but I clearly am not. I guess deep down I sugar coat it because that's what others want to hear- or so I think. I know my family and friends love seeing Nate's adorable smile or hearing about the awesome connection he has with his sister. I mean, these things are all real and true and part of our life too..but they aren't the majority of it. I guess that's what I CHOOSE to focus on most of the time too- the other is just too draining.
Maybe I just fall somewhere in the middle. I do cringe at the Autism Awareness hoopla- because just like cute Breast Cancer Awareness, wearing a pink hat might make you feel good, but it doesn't cure Cancer. I still encourage my family and friends during Autism awareness events- even though I am fully aware that some have no clue still what so many families live with. I feel that at least they can show support and pass the word on..which is something 6 years ago, I was painfully unaware of. BUT as far as actually curing a disorder, um, no.
I still have people ask me questions to this day that I find ignorant. I mean, I am THRILLED they care enough to ask questions, but so disappointed at how little people know. My lovely Mormon neighbor for example. She has been a 3rd grade teacher for MANY MANY years before leaving recently to stay home with her newborn daughter. She always tells me about all the kids in her ward (aka LDS neighborhood church-thingy) with Autism and disabilities. She names them off and tells me where they live as if I will be like- oh yea, I know him! It's like saying you know a kid with brown hair, yes, well, so do I. No, I guess that's harsh, she means well. I know it's from a good place...I just get so frustrated that an educated woman who works so closely with children is clueless. She continues to ask if there are different kinds of Autism. Um, yes. I REALLY hold myself back at almost all times as, to be honest, it is EXHAUSTING having your life be seemingly defined by the word AUTISM. I kindly say yes and briefly explain things in a simplistic manner that she seems to grasp. It's not that I expect HER to know better, or anyone i suppose, it just makes it so much more difficult to talk about. Nate is on the severe end of the spectrum. It is maddening when he is compared to a child with Aspergers(typically high functioning) in my neighborhood ("who is just the nicest boy and you would never know anything was 'wrong' with him- let me get you his mom's number!").
Anyway- If you are a close family member or friend of mine, please take a few minutes and read this. This mother explains things in a way I never have. Her words speak reality- not rhetoric and platforms... but it's the truth and in many ways, this is about Nate. In many ways it is not but it is a view worth reading..and I will fight like hell to change his path, but I am also a realist. But please trust me when I say that although my feet are FIRMLY planted on the ground, I will never stop reaching for the stars for Nateman. I promise you that.
http://michellemguppy.blogspot.com/2011/04/what-autism-awareness-month-means-to-me.html?spref=fb
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