Monday, April 01, 2013

The rant is ON

Today’s Adventures In Going Amongst The People brought a braying jackass well-intentioned woman basically opined that Captain Adventure was horribly afflicted with a terrible disease, and needed – needed – to be “cured.”

You know, so he could be a “normal” person. (<= hint: this sentence contains a keyword which comes with a money-back guarantee to set me off in a big way) (additional hint: it has quotes around it)

And she was ob-frickin-noxious about it. Reared up on her hind legs hee-hawing all sorts of nonsense to a train full of captives…one of those types who read two articles on some website and is now a self-proclaimed Subject Matter Expert™, who knows eeeeeeeeverything about how {evil} is {evil conspiracy plot} aided of course by {obligatory governmental connection} to {evil act}.

I’m afraid I was so pissed off by the time she wound down her little speech on the train that I just about lost all powers of speech, and thus could only mutter something indistinct that probably sounded like “…grrraumph hem-haw fizzle vetch…” at her as she was practically trying to ram her stupid pamphlet down the front of my shirt.

I really didn’t want to “discuss” it right then. Mostly because “discuss” would have undoubtedly ended up being “screaming about” – and there likely would have been vulgarities uttered.

But in some ways, I find myself sorry I didn’t haul off and hit her upside the head with a few choice adverbs. It’s been itching and itching, ever since.

MIND YOU, I’m not about to burst into some musical number about how perfectly awesome it is to have an autistic kid. It’s not perfectly awesome. There are things about it that straight-up suck. There are times when I look at him as he’s stomping around being autistic and think, …dude, I’m just…kind of TIRED of this right now…it’s also loaded with uncertainty, fear, doubts, inconvenience, embarrassment and other negative sorts of things.

But at the same time, I really don’t think he needs to be “fixed.” He’s not broken. Plus, autism is deep in his wiring, so to speak; the way he views the world, the way he thinks, the way he translates various sensory inputs, is just different from most people.

To “cure” him would be to…change him.

To make him not my Captain anymore.

My mind rejects that concept rather violently. The idea of taking away something that is so central to who he is appalls me. It feels a lot like she was walking up and saying, “Oh, wow, you got one of those models? They’re defective, ya know? You should throw that one away and get one of the newer ones.”



And much as I know that’s not what she meant (exactly) and that I’m probably being overly sensitive about the whole thing and should just let it go already…well.

You know what? I don’t want to “make him normal.” I just want to figure out how I can help him figure out how to get the things he will want to have, or do, or be. Because you know what? He has special challenges, sure, but he also has special strengths.

Those too are part of this thing she calls a “horrible disease.” They’re part of what she wants to “cure” in the name of making him “normal.”

Shall we throw those away, just because they’re stronger than “normal” child strengths? Or consider that collateral damage acceptable because it would be more convenient, or less embarrassing, to me not to have to put my hands over his when the flapping is getting out of hand in public? 


It’s “Autism Awareness Month,” of course. There are people doing really good work under the same banner; but inevitably, you’re going to get the people who just…don’t necessarily think these things all the way through, who are innocently trying to “help” when they say “Oh, you should murder that child, then resurrect him as a different, more desirable one!” (Oops. Apparently, I have still not quite gotten the ire out of my system…)

And I have to acknowledge that it is entirely possible that I’m the weird one for feeling that way. I have to admit, there’s a certain likelihood that a “normal” mother would want to change her “Not-Normal” child.

“Normal” is, after all…safest. A “normal” child has a higher probability of having a “good” life, a steady, improving-on-what-my-parents-had sort of one-foot-before-the-other life.

A “normal” child won’t be labeled, won’t have to explain themselves, won’t have to carry notes from their doctors or wear wristbands or any of that.

So, maybe I’m the one who needs to reexamine their reality a bit.

But still.

I wouldn’t change a hair on his head. Or a thought inside it.

He doesn’t need to be cured of being himself. No. There is nothing, nothing wrong with who he is.

He only needs to be helped, so that he, not his autism, can decide what his life will be like.

That’s how I see it, anyway.

And how I always will see it.


Anonymous said...

Such eloquence in the face of ignorance ought to be considered a super power! Your words have reached through the screen and touched me. The love you have for your son is so plain to see, "normal" boy or not. Thank you!

NightOwlKnits said...

Stay right where you are. You're so, so right!

It is sort of ironic that your son's nickname is Captain - it would seem that he has been indeed the Captain of your journey as a parent.

I also have a special needs son - now full grown - that I fought for and learned so very much from. He has made me (and continues to challenge) me to be so much stronger and patient than I think any average parent would or could ever be.

I know that my son will always have limitations and will always need assistance but if Captain can learn and grow and be safe while doing so - to hell with what everyone else says. You are his best and perhaps only true advocate. Trust your gut.

Jane said...

My grandson was born with a cleft lip and palate; the suggestion was made before he was born, that he should not be born! so I know where you are coming from. He is one of the funniest, sweetest kids I have ever known! To think that he wouldn't be in the world leaves me speechless.

PBear said...

Nope, you're spot on. I wouldn't want to change mine either - he wouldn't be the same kid! Make things a bit easier for him, sure, but I want to do that for my NT daughter too - what mother doesn't? But FIX? Nope, he's not broken.

And I admire your restraint. The older I get, the less I have...

Jeanne said...

As far as I know, there is no guarantee that so-called "normal" children will be problem free, or that they will grow up to do better than their parents. The best we can do as parents is love our children for their strengths AND their "weaknesses" and stop beating ourselves and other parents up about what we perceive to be "better." Thank God that Captain got you for a Mom and not the woman on the train!

Booa said...

Gah, I hate the word normal. How about typical? Or, when I'm angry, how about pedestrian, run-of-the-mill, mediocre, average? Gah, gah, gah. Sorry.

There's nothing wrong with being typical, and there's nothing wrong with being atypical--you just have to work a little harder to make the muggles understand you, and the muggles have to work a little harder to make you understand them, but in the end, I think we're all richer for the experience.

But yeah, even when my boy is making me nuts with his complete lack of tact, he has superpowers, too. He thinks the best of everyone, and he doesn't even see power structure, so he's never nice to someone because of their title, or rank, or anything like that. He's as likely to befriend a janitor as a rock star. He's not afraid of people.

And despite being high-functioning autistic, he is still often more sensitive to my moods than my supposedly typical husband, so you know what? Anyone who thinks he's less than because he's different can stuff it. (He wouldn't tell them to stuff it, but I'm a beyotch, so I'm happy to do it for him.)

I think you were wise not to engage the person on the train, though--you have to pick your battles, and wage them where they're most likely to bear fruit.

Hester from Atlanta said...

One time I was out for a walk/ride by the beach with a friend who was a quadrapalgic in an electric wheelchair. This woman came up and told my friend, "If you really believed you would be able to walk out of the wheelchair." I was ready to give the speaker what for, physically as well as verbally, but my friend in the chair took it much better than I could. She said, people come up to me and saya this stuff all the time.

Aside from everything else, sometimes people are just plain RUDE!!!

Good for you for ignoring her as best you could. Captain Adventures is an amazing DUDE!

julia said...

Okay, but see you have a high functioning child. I do believe what is often called autism is often caused by our runaway vaccine schedule and the other chemicals our children were exposed to. I do want our children healed from their bowel pain, their seizures, and their head banging. I want our children to be able to verbalize their needs and participate in their families and communities. I want our children to be toilet trained. Many of our kids can't do this because of their injuries. Do I want my child cured? Absolutely. Does that mean I want him to be someone else? No, but I want him not to have the limitations that he does have. I accept him as he is, but if given the chance to be healthier, I would certainly choose healthier.

Steph B said...

You are my hero. I would've totally flipped out on the woman and then broken down in tears of frustrated rage over the absolute stupidity of the whole thing. The Captain is just fine. You love him for himself, and that's the best thing in the world for anyone, "normal" or not.

Colleen Mole said...

That was an awesome post Tama. I would have smacked the *(&% out of that woman. Not to mention, why would anyone want their kid to just be "normal"?? Screw that. I want my kid to be exactly the best Teagie she can be. And knowing who her parents are, that is sure to be a quirky yet passionate woman. :)