It's that time of year again. April is upon us. It's Autism Awareness Month. Again.
I have three kids on the spectrum, two of whom are now adults. I have to admit that part of me wishes the whole awareness thing would just go away. Haven't we pretty much saturated the world with awareness by now? Shouldn't we be moving on to other things at this point... like maybe Autism Understanding Month? I haven't met anyone in the last several years who hasn't heard of autism. What I have met are hundreds, no thousands of people who don't actually have a clue what it really is or how to deal with people on the spectrum.
Oh, there are people who think they know, and even think they have the cut and dry one-size-fits-all answers. These are the people I would like to eject from the planet. When it comes to autism, one-size-does-not-fit-all. That's one of the things that makes Autism so incredibly difficult to treat. Every single individual with autism is exactly that: an individual. What works for one may not work for another. What one thinks or feels may not be shared by them all. In fact, it very rarely is. If ever.
This morning I published the article "Autism and Geek Culture: The benefits of fandom". I got an amazing response that was, for the most part, very positive. Quite a few people thanked me for it. But, there are always those people...
One lady private messaged me to tell me that I had done the entire Autism Community a horrible disservice by promoting the idea that people with autism should be allowed to throw themselves into their obsessions. This, right after my niece, who is also an Autism Mom, told me about how people at certain meetings tried to essentially bully other parents into depriving their affected children of TV and video games.
These are the kind of people that need to go. This is the kind of thinking that needs to stop. This "My Way - No Highway Option" sort of thinking and acting is doing more harm to the Autism Community than any single recommendation or point of view out there. It's like the people who insist that Autism is caused by mercury and that's that. I had all of my children tested for heavy metal poisoning and guess what? Nada. In fact, one of my kids was suffering from a slight copper deficiency. I had no idea that could be a problem, but a single injection of special vitamin cocktail that would allow her to retain copper was all it took to settle that issue.
And she was still autistic.
Does that mean that mercury doesn't cause autism? No, it just means that it didn't cause my kids' autism. But going around shouting at me that I'm neglecting my children because I haven't gotten them Chelation therapy, when I know for a scientific fact that they don't need it, doesn't help. In fact, it makes you look like fool. It also spawns Bad Ideas and Bad Situations, were young parents find quacks who are willing to do the the therapy willy-nilly and kids end up dying for no reason.
And yet, some people's children have been relieved of their autism symptoms through Chelation and the relief of heavy metals poisoning. One size does not fit all.
Likewise, telling a young mother that she has to deprive her child of television and video games can be just as ridiculous and narrow minded. Geek Culture helped my children, and continues to do so. That's the entire reason I started writing about it for that publisher. If that's not a fit for you and your family that's fine.
As for me and house, we are Whovians. If you have a problem with that get off my planet.
And as for April... Welcome to Autism Understanding Month!
Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts
Monday, April 1, 2013
Tuesday, February 7, 2012
I'm not autistic, I'm merely 'different'
Are you one of those people who say that higher functioning forms of autism are not a disability, they're merely a 'difference'? If so, I have great news for you! The fine people at the American Psychiatric Association (ASA) agree! They've recently released the proposed changes to the diagnostic criteria for autism for the Diagnostic and Statistical Manual 5th Eddition (DSM-V), and all of those who are merely 'different' will no longer qualify for a diagnosis of Autism Spectrum Disorder (ASD).
My children, however, will still be autistic. So, once these fine rules take effect I'm going to start bitchslapping people for telling me my daughter's problems are just bad manners, poor parenting, because we homeschool, or I'm making them up, because, after all, you, or your kid, was "diagnosed with that too" and you, or your kid, are merely 'different'.
Really? Have you not read the Letter to Grandparents? (Click here stupid)
My kid is different alright. She's different to the point of being disabled. My child is probably going to need supports for the rest of her life. Oh wait... I have TWO minor children with autism. One is very obviously autistic. After 5 minutes of talking to her even a complete stranger can visibly see there's 'something wrong'. The other one though... not so much.
That one is still going to be considered autistic after the new criteria go into effect. I've already talked to her doctor about it. He says the only change that he can see will be a change in formal diagnosis from Asperger's Syndrome to moderate ASD. Oh yeah, she's being downgraded. Why is none of your business.
What is your business is the load of hell you're going to get from me and people like me if you keep this "it's only a difference" stuff up after the DSM-V is released. The people who are merely 'different' will have been weeded out.
Unfortunately, some people (both kids and adults) who actually need help will be weeded out right along with you. But, take heart, your inscesent whining paid off. Your image will be protected. Meanwhile, my friend's kid, who is one anal retentive trait short of an ASD diagnosis is going to fall through the cracks. His parents will start, and actually already have started, scrambling to figure out a way to get him the help he needs so that he can be something resembling self-suffient as an adult so as not to become a welfare burden on your tax dollar. Oh wait... it will be you kids' tax dollar. Nevermind that at least half of those kids won't pay taxes because they won't have jobs... because they're 'different'.
Am I mad? You tell me. No, I'll tell you: I'm fricken furious!
Go ride your tricycle.
My children, however, will still be autistic. So, once these fine rules take effect I'm going to start bitchslapping people for telling me my daughter's problems are just bad manners, poor parenting, because we homeschool, or I'm making them up, because, after all, you, or your kid, was "diagnosed with that too" and you, or your kid, are merely 'different'.
Really? Have you not read the Letter to Grandparents? (Click here stupid)
My kid is different alright. She's different to the point of being disabled. My child is probably going to need supports for the rest of her life. Oh wait... I have TWO minor children with autism. One is very obviously autistic. After 5 minutes of talking to her even a complete stranger can visibly see there's 'something wrong'. The other one though... not so much.
That one is still going to be considered autistic after the new criteria go into effect. I've already talked to her doctor about it. He says the only change that he can see will be a change in formal diagnosis from Asperger's Syndrome to moderate ASD. Oh yeah, she's being downgraded. Why is none of your business.
What is your business is the load of hell you're going to get from me and people like me if you keep this "it's only a difference" stuff up after the DSM-V is released. The people who are merely 'different' will have been weeded out.
Unfortunately, some people (both kids and adults) who actually need help will be weeded out right along with you. But, take heart, your inscesent whining paid off. Your image will be protected. Meanwhile, my friend's kid, who is one anal retentive trait short of an ASD diagnosis is going to fall through the cracks. His parents will start, and actually already have started, scrambling to figure out a way to get him the help he needs so that he can be something resembling self-suffient as an adult so as not to become a welfare burden on your tax dollar. Oh wait... it will be you kids' tax dollar. Nevermind that at least half of those kids won't pay taxes because they won't have jobs... because they're 'different'.
Am I mad? You tell me. No, I'll tell you: I'm fricken furious!
Go ride your tricycle.
Saturday, January 28, 2012
Tricycles and Semi Trucks
To those who think they 'know' what my life is like becuase they've 'met' a person with autism... to those who think they know because they know me, and have met my children... especially to those who've yet to have children of their own...
There is a point when a child is only 5 weeks old, when the new has become painful. When you're woken by a cry for the thrid time that night, and it's only midnight. When you feel like you will never be allowed to sleep again. When you think bright yellow cottage cheeze-looking poop is the worst thing you have ever smelled in your life and you don't think you'll ever get away from it. There is that point. Take heart in the fact that this, all of this, will pass. Eventually it will end. Feel blessed.
Now, when you are sitting there at 2am, trying to think of this, think of me. Think of my friends who have children with disabilities. Think of all the smart mouthed know it all crap you said to us. Then realize, truely realize that this point will pass for you, but it will never pass for us. For us it is forever. It does not end. As our kids grow older one issue is simply swapped out for another. The sleepless nights don't go away. We know that newborn baby poop is not the worst smelling thing in the world. We don't hold tinly little bundles who can't stop crying and we don't know why. We hold fully grown bundles who can't stop crying and can't explain why.
In that moment, picture in your mind a tricycle with a cute squeeky little horn. Picture yourself sitting on that tricycle tooting that horn. Then look up. I was the armored semi truck in front of you. I was the one who your were sqeezing your little horn at while insiting the road was yours. Now realize exactly how close you came to getting squished, and be thankfull.
Be very, very thankfull.
There is a point when a child is only 5 weeks old, when the new has become painful. When you're woken by a cry for the thrid time that night, and it's only midnight. When you feel like you will never be allowed to sleep again. When you think bright yellow cottage cheeze-looking poop is the worst thing you have ever smelled in your life and you don't think you'll ever get away from it. There is that point. Take heart in the fact that this, all of this, will pass. Eventually it will end. Feel blessed.
Now, when you are sitting there at 2am, trying to think of this, think of me. Think of my friends who have children with disabilities. Think of all the smart mouthed know it all crap you said to us. Then realize, truely realize that this point will pass for you, but it will never pass for us. For us it is forever. It does not end. As our kids grow older one issue is simply swapped out for another. The sleepless nights don't go away. We know that newborn baby poop is not the worst smelling thing in the world. We don't hold tinly little bundles who can't stop crying and we don't know why. We hold fully grown bundles who can't stop crying and can't explain why.
In that moment, picture in your mind a tricycle with a cute squeeky little horn. Picture yourself sitting on that tricycle tooting that horn. Then look up. I was the armored semi truck in front of you. I was the one who your were sqeezing your little horn at while insiting the road was yours. Now realize exactly how close you came to getting squished, and be thankfull.
Be very, very thankfull.
Sunday, May 8, 2011
The Mother's Day That Sorta Isn't
I don't really like cake. I don't like parties in my honor. They make me feel weird. I tell you this to help you understand why my family has decided to postpone Mother's Day this year. I don't do Mother's Day when it's all about me. I don't even do my own birthday, and it has nothing to do with the fact that I'm getting older. I'm quite comfortable with my age. I'm about to turn 39 in few days, and the idea of pushing 40 doesn't bother me.
What bothers me is doing a bunch of work to put on a party when I'm the guest of honor. I don't need much. I don't like cake. I don't eat a huge breakfast, so a fancy brunch in my honor is kinda pointless. All the work that goes into putting on things like Mother's Day and my birthday isn't for me. It's for those around me.. which sorta defeats the point. And for those of you who think someone else should be doing the work, hehe, you don't have autistic kids. Aside from an 8yo in a wheelchair there is no one else in my house to do the work.
So, we're postponing Mother's Day until the 21st, at which point we will also celebrate Cinco de Mayo, my birthday, and Memorial Day. We're calling it the May Daze weekend. Why are we doing this? Because that's when we'll be able to afford to bring my mother down from the old hometown via shuttle. I'll have someone else to concentrate on as a guest of honor. I love spoiling my mom, so it works great for me.
As for today, the day when everyone else is celebrating Mother's Day, I plan to work. I have some articles due to a few different ezines, and I plan to get some of those finished. I'll also sit vigil on the APOV groups in case another autism mom (or dad) has a bad day and needs a friend... which happens pretty much every year. Autism and Mother's Day don't seem to mix well for many people. Our chatrooms and satellite groups tend to fill up fast on holidays.
So, to the rest of you who will be observing this particular holiday on it's appointed day, Happy Mother's Day. I hope it turns out great for you! I've heard the urban legend that this does occasionally happen from time to time, lol.
XXOOX
What bothers me is doing a bunch of work to put on a party when I'm the guest of honor. I don't need much. I don't like cake. I don't eat a huge breakfast, so a fancy brunch in my honor is kinda pointless. All the work that goes into putting on things like Mother's Day and my birthday isn't for me. It's for those around me.. which sorta defeats the point. And for those of you who think someone else should be doing the work, hehe, you don't have autistic kids. Aside from an 8yo in a wheelchair there is no one else in my house to do the work.
So, we're postponing Mother's Day until the 21st, at which point we will also celebrate Cinco de Mayo, my birthday, and Memorial Day. We're calling it the May Daze weekend. Why are we doing this? Because that's when we'll be able to afford to bring my mother down from the old hometown via shuttle. I'll have someone else to concentrate on as a guest of honor. I love spoiling my mom, so it works great for me.
As for today, the day when everyone else is celebrating Mother's Day, I plan to work. I have some articles due to a few different ezines, and I plan to get some of those finished. I'll also sit vigil on the APOV groups in case another autism mom (or dad) has a bad day and needs a friend... which happens pretty much every year. Autism and Mother's Day don't seem to mix well for many people. Our chatrooms and satellite groups tend to fill up fast on holidays.
So, to the rest of you who will be observing this particular holiday on it's appointed day, Happy Mother's Day. I hope it turns out great for you! I've heard the urban legend that this does occasionally happen from time to time, lol.
XXOOX
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