Tuesday, September 17, 2013

What is being taught?

I know that I can sit on my soapbox as easily as the next NT parent and argue it is my right to feel how I want about my son's neurology. Because it is. You should own you feelings at all times. But what happens when those feelings are a possible detriment to your child?

What are we, as parents, teaching our children about their own diagnoses? Are we telling them it is okay to be different? To be autistic? I know what I am teaching my sons about acceptance and promoting that. However, I worry what Morgan (and Bay) learns from other kids who have been taught inadvertently or overtly that his neurology and their own are bad.

To me, autism isn't bad. It's not always great in this house. It just is.  

Once my kid leaves my house each day, I have little to zero control over what kind of attitude toward disability he will encounter. Even when I am with him, I cannot control the looks of pity, sometimes anger, confusion, or anything which could be construed as negative toward his being autistic. How do I explain the conflicting attitudes?

Yesterday, we were driving home from school incredibly happy. "Mom, look! Autism ribbon!" I heard from the back. I squinted at the car in front of me... yes, it was an autism ribbon, of sorts. In the center loop of the ribbon, I spied the acronym "F.U.A.," something which I've grown familiar seeing tattooed on parents, on bumper stickers, some memes, and within statuses and blog posts. I tried brushing it off with something, but Morgan was too sharp. "What's fu-ah?" "Um, it must be an autism organization, honey." "Are you in that?" I answered firmly, "Nope."

It is more than okay to feel as if your kid's autism is kicking both of you squarely in the ass. God, I feel like that on a lot of days. But that is my son's neurology kicking my ass and his. I could not separate it from him if I tried. It is okay, I think, to not love the hand you are dealt. I don't love that my son blacks out and is incredibly aggressive with me sometimes. I don't love that I am his trigger some of the time. I don't love that I lose my shit and yell, "That's it! I'm done for the day!" and then I feel like shit.

But am I teaching my son that I am done with autism, him being autistic, or him? This is beyond hard. Where is the line I have to toe?

I don't want Morgan to grow up and think that autism is a reason to be hated. To be looked down upon. To be abused. To be pitied.  But if I were to allow him to read any of the news, or watch it, he might glean that. If he, even once, hears "I don't know how you do it," what is he learning? And please, don't tell me he doesn't understand. He does. He might not "get it" in the way the society thinks he should. He might internalize things that I think he should not, but I'm presuming competence here, going out on a limb, and assuming my son understands that these things being said about autism aren't great. I'm keeping my news turned off lately because I don't want public perception to teach him that autism is a reason to be violent towards your child or that autistics are all violent.

Sometimes, on the very hard days, when I want to break down and cry, I can't. I keep a shaky resolve up, I put my kids to bed, and I take my very weary body outside on the balcony and then break down. I think that I'm not strong enough to raise an autistic son. I get so damned tired of second guessing every single thing which comes out of my mouth or my actions before they happen. This isn't the way I ever thought I would parent- counting milestones that others don't even know exist, walking on eggshells, and not daring to look into the future because regression might steal something. But dammit, I won't say any of this in front of him. He's worth every bit of every thing I do.

Perception is everything. Am I teaching my child to perceive his abilities as bad things?


  1. Woah. I've never seen the FUA thing. And it took me your explanation to understand what it meant. And now I sit here looking inward. It's super easy to judge that bumper sticker, out there for the world to see. I need to make sure that I am not projecting that on my kiddos. Thanks for the shake up this morning.

  2. Thank you for this. Just...yeah. Thanks.

  3. I think that regardless of how you resolve it (where "it" = whatever child-related/parenting issue might be rearing its ugly head)...if you approach it from a place of love and respect, then the resolution has to be the right for your kid.

    It's difficult for me to see how FUA is approaching the challenges of autism from a loving respectful place, especially as framed by your post.

    Seems like you're doing good.

  4. I have been thinking long and hard these days now that I am passed the initial confusion of the diagnosis and what it means. My mind is starting to change quite a lot about what autism is, how I feel about it etc. I used to look at it as if it were similar to my anxiety and depression. I see now how so much of my initial responses aren't the ones I want to hang on to. This post, and others like it, have really helped me stand back and approach things differently. Thank you for writing and sharing.

  5. Thank you. I needed this tonight.