Friday, July 12, 2013

I can't say that!

Why is there an incredible lot that special needs parents aren't allowed to say? We cannot admit publicly that our lives might be hard. We're not supposed to say, "God, I wish my life were easier. I wish my kid was speaking. I wish for normal, whatever the hell that is."

When someone tells me my life must be hard, I typically tell them, "No harder than some other people's, probably." Because I don't know how other people live their lives and I have very little to compare my life to except for what I see. I know how I have it. My kids are great. However, I also know that other families don't have the same worries my family does, so sometimes I allow myself to drift into the "what if" categories in my brain. They aren't pretty. I don't stay long.

Guilt used to eat me up for doing that. Then I realized that these thoughts aren't so different from being a "typical" parent who wishes for a nicer car, cleaner home, and a maid to do the laundry. Maybe I'm simplifying things, but hopefully, you can catch the sarcasm.

In the blogging community, there seems to be a lot you cannot write, for whatever reason. Here, have a sampling:
  • You cannot admit to jealousy of other parents because this might imply you hate your children. But it doesn't... unless you're actually hating your children and specifying this. Because then you get attacked with pious bullshit. By the way, for an excellent way of expressing your jealousy, check out Lexi's Listen to Your Mother reading, "I'm Jealous of You."  

  • You can't say you dislike what Autism is doing to your child without someone jumping on you and saying that you're saying you hate your Autistic child. Which you don't. You're hating the meltdowns, the pain your child is in from the overhead lights he can hear, and the sensory processing problems which seem plague your child. Because, dammit, sometimes this isn't a walk in the park. There is no sugar coating it. 
  • You cannot admit how scared you are. You just can't. Because someone is right there wait to pounce on you and call you an ableist and tell you check your privledge. Folks, I'm this kid's parent and I'm worried. This is my place to talk about it. I try to be respectful and so do my friends who write. Get the hell over yourselves.
  • You cannot say that you disagree with someone who has a different ability such as Autism without being called a bigot. I call bullshit. BULLSHIT. You can have different opinions from me and I from you. This doesn't make me an abelist bigot because I'm saying I disagree with you. Not the color of your skin, your sexual orientation, or your ability. Just you. You know, you can be wrong or have a different opinion than me without resulting to name calling. Also, I can think you're an asshole without calling your different ability into question.
  • You can't talk about therapies, to an extent without wondering if someone is going to malign you for torturing your child. Yeah, torture. That's what I'm doing by trying to ensure my son is learning life skills. Thanks for that one!
  • You can't talk about medicating your child. That's a big no-no. We're talking about launching the atom bomb of "Holy shit, did she just write about that?"
  • You can't talk about how hard it is to go to the movies, out to eat, pee alone, any of this. Because someone will jump on you and call you selfish for wanting to do any of this stuff in this first place. Again, I call bullshit.
  • You cannot say that some days your children are just jerks. Nothing to do with Autism, really, but they were jerks. I won't even apologize for putting that out there. Maybe I need to develop a tougher skin, but when my sons tell me they hate me, it hurts. Or when they destroy something I cherish, it sucks. Okay? 
  • You cannot wonder out loud what life would be like if it were different. Ever. That's bringing in the big guns.
  •  You cannot pretend, with certain groups of people, that Autism is anything less than a gift. I get it. My son is an amazing person with incredible abilities. However, I don't perceive those abilities as anything less than what they are- the way his brain is wired. I wondered how this looks from the other side of the fence, so I asked my friend, Flannery. Her take? "Autism means I can no longer be a regular woman, with regular worries and fears. I must pretend that autism is like a special gift from the baby Jesus... Sometimes Autism is like a one-legged whore, working the street corner at 2am."
  • You can never say that, if you're expecting another child and have an Autistic child already, then you hope this new child is a NT. You just can't. It would imply that you loathe the child you already have, love, and cherish. Who you are fighting for in the schools, in the doctor's office, in public, in your family and who you would fight the devil himself for. But no, you can't admit that.
  •  You must never, ever, EVER joke about Autism. Ever. I say screw that. If you can't laugh at something, then what's the point?

I, as a parent blogger, have a lot to say. But there is a lot which is not supposed to be said in the open. I'm guessing I probably messed that up today. If it offends you, move along. This is my truth. I'm not sure why others are allowed to speak theirs and yet I and my friends are supposed to be silenced. 

Oh, right... I'm not supposed to say that, right? 

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