Friday, June 21, 2013

Some People Are Just Assholes

Wow... Some people, I swear. I fight for Autism Education, and light into someone who thinks that the diagnosis of Autism is "Bullshit", and I get reamed because I attempt to point out that perhaps said person should ask the parents who have to fight with insurance companies, school officials, have to leave a grocery store or a restaurant because of a meltdown, whether or not Autism is an actual disorder or not. Now apparently I'm a bigoted asshole, because I dare to say someone has a lack of empathy for these parents to someone who until just now has never made mention of his Autistic status? BS. Autistic or not, you're still acting like a spoiled brat with mommy issues. Believe me, I understand the difficulties. And if these recent news reports about parents and caregivers killing their Autistic children are upsetting to you, you're not the only one. I'm upset by them too. HOWEVER... They are not the norm. And to lump us all as "Monster parents who forget that Autism isn't about them." is a pretty serious accusation. If you have issues with how your parents treated you, take it up with them. But to say, "Ooh, poor parents, Fuck them... it's not about them." only shows just how angsty you really are. You come off as a 15 year old. Certainly not the autistic parent of three non-autistics who was raised by an aunt with neuro issues of her own and an autistic cousin... ::brain implodes a bit:: I wonder ( /endsarcasm) where all of that anger comes from? IF your story is true, and I say IF, then perhaps you have deeper issues than just autism. 

The facts remain the same. Autism isn't JUST about one person. It affects the ENTIRE family... especially when that family is a close family unit. These parents who do anything and everything they can to make the world a little bit less stressful for their children DO DESERVE to have some empathy. Hell, I'll say it.. We deserve a little sympathy too. And every so often, we deserve to have someone pick up the pieces for the night and say, "You deserve some time to yourself." If that makes me a selfish, horrible, monster of a parent, then so be it. I guess I'm a selfish, horrible monster of a parent, because I spend 23/7 thinking about my son, who has autism, and the effects his autism will have on him, and his neurotypical brother throughout their lives. I spend that 23/7 trying to advocate for better services, better insurance coverage, less political crap in our medical issues, attempting to educated the public about autistic behaviors that they may not understand, to help make the world more autism friendly so that other parents, like myself and my husband can feel confident taking their children out to a restaurant or a movie theater without fear of some ignorant jackass making a scene, or throwing us out because Malcolm decides to stim during desert, or through the opening credits. That one hour that I left out... I spend trying to squeeze in a shower, eat something that isn't part of Malcolm's typical 'yellow diet' routine, or I don't know, have a conversation with my husband that isn't autism/child related. 

So go ahead. Judge me, if it makes you feel better about your lack of whatever it is that has you so freakin' angry. I will tell you the same thing I tell my son though. Autism or not.... you do not get a free pass to be an asshole.

Friday, June 14, 2013

What The Hell Is Wrong People???

Alex Spourdalakis' mother, godmother charged with 

first degree murder: Police


Do I understand the desperation, isolation and frustration that Autism creates? You betcha! We deal with these 'side effects' of autism EVERY day! HOWEVER!.... NEVER has my brain questioned whether or not KILLING MY CHILD would be the appropriate way to handle my own stress. NEVER have I endured a 3 meltdown in 5 hours, been punched in the face, kicked, spit on, yelled at, or watched as some expensive item in my living room shatters and thought, "A kitchen knife could fix this." Okay... it's taken me a couple of days to process my thoughts about this. They don't vary much from my initial reaction upon reading this story though.... So many people are so eager to jump up and defend and excuse these two women. "Ooh, no one understands how difficult Autism can be." or "The system failed them." 


Guess what? The system DOES work... if you do your part! These two women CLEARLY gave up on this boy. They gave up on themselves. There ARE resources out there, and I find it incredibly difficult to believe that they were handed the diagnosis and then sent on their way without ANY of these services and resources HANDED to them. Matthew and I left that particular doctor's appointment with our arms FULL of booklets, info packets, pamphlets, business cards, and more! Our job as an Autistic Child's parent and advocate does not end with the diagnosis!!! And clearly, she had enough of a voice to question whether medicating him with psychotropic drugs was appropriate for him. 


The fact of the matter is this. Did the system fail her? It's possible. But who failed Alex? Stop crying about how tough SHE had it. Yeah, like I said, it's HARD! But imagine what this young boy was going through! I'm certain it didn't scratch the surface of HER stress. And here's the thing.. If she were truly justified in her actions. If she even FELT justified in her actions, why did she, and the Godmother, attempt suicide right afterwards? Most people, who are steadfast in their convictions.. don't run away and hide after acting upon them. They are clearly, two cowards who deserve everything they are going through now. THEY failed this child. Not his doctors. Not the government. Not any other 'They' that people want to throw out there in an attempt to prove that the system is broken. 


Someone, on another page said, "DO NOT FORGET WHO IS ULTIMATELY RESPONSIBLE" then concluded with "Hint: It is not his mother." 


Seriously?


As his number one advocate, it wasn't the responsibility of the medical community at large to take care of him or his needs, it was HERS. If she felt they weren't listening, there ARE services out there, ACROSS America, that can help with that! Believe me, I understand the desperation and the isolation that she faced. I face it too. And I reach out for help. As hard as it is sometimes, I ASK for help when I am reaching my limit. I didn't HAVE a support group in my area, where I could connect with other Autism parents. So what did I do? I MADE one! No, it's not an easy road, Autism. It's a scary, ugly, lonely road. You doubt yourself as a parent, as a friend, as a wife/husband, as a human being. Regularly. Relationships suffer because of Autism. Self esteem and self care suffer because of Autism.


My point is... When does it STOP being everyone else's responsibility to take care of Alex? When does it become Mom's responsibility? She GOT the diagnosis. Is that where she believes her responsibility in all of this ended? She was able to use her voice and advocate her dislike of using medications to contain his behavior? Where was this voice when these other services and providers 'failed' her? 


And that is the key for me. They failed HER. Well.. WHO failed Alex? If she was unable to cope... and she gave up... that isn't the fault of his doctor's, or CPS, or whatever other 'They' everyone is trying to blame. THAT particular fault, lies solely upon the two who executed this child. THEY GAVE UP ON THE CHILD. THEY FAILED HIM. So absolutely, yes... DO NOT FORGET WHO IS ULTIMATELY RESPONSIBLE for what happened to him...


Hint: They wiped the knife they used to stab him with before taking a handful of pills to medicate and wipe their guilt away.

Studio 13

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