I've been off the grid and now I'm back. With a vengeance. I don't know why I'm in such a funky mood. Maybe the Autism Speaks controversy rears its head about this time avery year? Maybe I just get tired of Autism Awareness? This isn't going to be a popular posts (for many reasons), but this is my therapy, so here goes.
A couple of things said to me recently have gotten my panties in a twist. One statement was from a person who has been a source of good autism related information. Her son is about 9 years older than mine and she called me out of concern for my Facebook postings. (The ones on my personal account.) Somewhere in the course of the conversation she tells me that I still seem angry and that in time I will learn that "it is what it is." I deeply regret keeping my mouth shut, but I can't afford to lose ANYONE in the position to help me navigate the waters of finding services for my son. What I WOULD have said, had I not let cowardice control my voice, was 'WHAT THE HELL? I will not sit back and say this is all there is, AND ALL THERE WILL EVER BE.' I don't believe that. I know it not to be true. I've seen my son change in the most productive ways. I've also seen what the 'helpful' (read with sarcasm) school has been able to undo. Temple Grandin may say that she is okay with being autistic. That is wonderful, for her. My 7 year old son was just potty trained last year. He can't ride a bike, even with training wheels. He has food sensitivities to: gluten, casein, soy, peanut, mustard, eggs, chicken, malt and asparagus. He has never eaten a hamburger. He has never said Mommy. He speaks only a few words: okay, Daddy, no and panda. At least those are the clearest. He has fallen back into the bad habit of stimming. I could go on, but I would need a stiff drink to get through the rest of the afternoon. I cannot sit back and say this is what I want his life to be like 10- 15 years down the road. I do not want to think about his older brother having to care for him for the rest of his life. I want him to be able to function in society. Whether it is as a high functioning autistic person, or as a non autistic person, I will not rest until I get results. Or I will die trying. But in the end, I will know that I have done everything possible.
Of course that comment goes hand in hand with those who don't understand what we've done this past year and it grabs me somewhere in the gut that I was not able to continue as I had hoped. You see, Choo and I spent 2011 in another state to pursue therapy. Poor Dude had been so neglected by me in my absence that I have been trying to repair our relationship, coupled with the fact that I haven't lived with Bear for about a year. Hard transition. And still hard. Because the realization hit me from an acquaintance in D.C., that my state lags about 5 years behind in autism services. Choo doesn't have 5 years. (Taking a break to breathe....) I've got the best chance to make a change while he is still young. I want to be able to have dinner out at a restaurant as a family. I would like for the whole family to cheer Dude on at sporting events. Hell, I'd love for Choo to show an interest in sports, or art, or SOMETHING!!!
Okay, now that I have wound myself up, I need to eat and some housework done before the kiddos come home from school and my tutoring session starts with Dude.
A couple of things said to me recently have gotten my panties in a twist. One statement was from a person who has been a source of good autism related information. Her son is about 9 years older than mine and she called me out of concern for my Facebook postings. (The ones on my personal account.) Somewhere in the course of the conversation she tells me that I still seem angry and that in time I will learn that "it is what it is." I deeply regret keeping my mouth shut, but I can't afford to lose ANYONE in the position to help me navigate the waters of finding services for my son. What I WOULD have said, had I not let cowardice control my voice, was 'WHAT THE HELL? I will not sit back and say this is all there is, AND ALL THERE WILL EVER BE.' I don't believe that. I know it not to be true. I've seen my son change in the most productive ways. I've also seen what the 'helpful' (read with sarcasm) school has been able to undo. Temple Grandin may say that she is okay with being autistic. That is wonderful, for her. My 7 year old son was just potty trained last year. He can't ride a bike, even with training wheels. He has food sensitivities to: gluten, casein, soy, peanut, mustard, eggs, chicken, malt and asparagus. He has never eaten a hamburger. He has never said Mommy. He speaks only a few words: okay, Daddy, no and panda. At least those are the clearest. He has fallen back into the bad habit of stimming. I could go on, but I would need a stiff drink to get through the rest of the afternoon. I cannot sit back and say this is what I want his life to be like 10- 15 years down the road. I do not want to think about his older brother having to care for him for the rest of his life. I want him to be able to function in society. Whether it is as a high functioning autistic person, or as a non autistic person, I will not rest until I get results. Or I will die trying. But in the end, I will know that I have done everything possible.
Of course that comment goes hand in hand with those who don't understand what we've done this past year and it grabs me somewhere in the gut that I was not able to continue as I had hoped. You see, Choo and I spent 2011 in another state to pursue therapy. Poor Dude had been so neglected by me in my absence that I have been trying to repair our relationship, coupled with the fact that I haven't lived with Bear for about a year. Hard transition. And still hard. Because the realization hit me from an acquaintance in D.C., that my state lags about 5 years behind in autism services. Choo doesn't have 5 years. (Taking a break to breathe....) I've got the best chance to make a change while he is still young. I want to be able to have dinner out at a restaurant as a family. I would like for the whole family to cheer Dude on at sporting events. Hell, I'd love for Choo to show an interest in sports, or art, or SOMETHING!!!
Okay, now that I have wound myself up, I need to eat and some housework done before the kiddos come home from school and my tutoring session starts with Dude.
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