Tuesday, July 19, 2011

Domestic Enemies of the Special Needs Mommy

This post is brought to you by our very good friend Stark.Raving.Mad.Mommy who is awesome and amazing except sometimes she seems to share a brain with Lydia.  Her blog is incredible and hilarious and if you haven't read it, you really should. She is one of our very best bloggy friends and we're thrilled to share this with you.

 I wrote about my little corner of Mommyland (which is called either Special Needsville or Yes My Child Rides the Short Bus Damnit) last year in a post called A Rant from Special Needs Mommyland. However, I am still fielding jackhole questions from random muttonheads, so apparently I need to be even more specific about the Domestic Enemies of the SPECIAL NEEDS Mom. Do you know some of these people? Feel free to share this post with them. If we all work together, we can cure Jackhole Comment Disorder in 2011!

The Nosy Parkers
I was well-familiar with the Nosy Parkers before I even had Little Dude. My first two babies are twins, and believe me, people have no qualms about asking questions like "Do twins run in your family?" when what they really mean is "Did you do fertility treatments?" Which, in turn, actually means "please tell me about the most emotionally difficult time in your life so I can compare you to Octomom later when I tell my friends about it." (For more about jackholes and multiples, see the excellent post Domestic Enemies of the Multiples Mom.
Now that we have Little Dude (and now that my twins look so different that no one thinks they're twins), the questions have changed.

How about I just answer all the questions right now?
  • No, he is not "just like" Rain Man.
  • Yes, I know he doesn't "look" autistic. (I'm not sure what people think autism looks like. They seem to think this is some kind of compliment. It's actually just confusing.)
  • No, praying really, really hard will probably not "cure" him.
  • Yes, I know he's really cute. It turns out the Special Needs Fairy doesn't care.
  • Yes, we do discipline him. But no, we're not going to "spank the autism right out of him."
  • Also, please know that if you ask me if I took antidepressants while I was pregnant, I may punch in you in the throat.
The Parenting Experts
Little Dude is five, and not toilet-trained. He often needs to be carried; usually this is because he's overwhelmed by his surroundings. The Parenting Experts like to ask back-handed "helpful" questions, like "Isn't he getting a little big for Pull-Ups / being carried / having a meltdown on the floor of Target?" The thing is, he's autistic, not deaf. And while he's emotionally 36 months old, academically he's seven years old. So he knows what you're saying, jackhole. And you putting pressure on him to change things he has no control over? Does not help us one bit.

Here's a pro tip: If you see a kid who looks "too big" for diapers, believe me, the parent a) already knows his/her child is in diapers; b) is not lazy (it's actually a lot of work to change diapers year after year); and c) has already tried every suggestion you have. Telling us your 18-month-old child potty-trained in two days because you used a sticker chart is not helpful advice; it's showing off. Shut. Up.

Then someone says, for example, "Isn't he getting a little big to be carried?" they're actually saying "put that kid down and stop spoiling your child." The thing is, when I'm holding my freaked-out, 50-pound child while simultaneously pushing a grocery cart, it's not really the best time for me to stop and explain about autism, sensory integration, frustration tolerance and how overwhelmed and terrified he is right now. I'd hand out little cards to explain it, but I'd need a third hand for that.

I honestly don't understand why anyone gives a crap if, when, why, or how long I carry him. It's not like I'm asking the Random Muttonheads to lug him around. It's also an excellent upper-body workout for me, and Maude knows I don't have time/money to go to a gym. And yet, it inexplicably bothers some people tremendously to see me comforting my child in this way.

A family we're friends with has a son with microcephaly and ataxia (loss of motor function). Because he's obviously profoundly disabled, most people have the good sense to just shut the hell up. On the other hand, because he's obviously profoundly disabled, sometimes people think he has no idea what's going on around him, which isn't true. It would be awesome if you didn't ask about his life expectancy in front of him.

Speaking of horrifying comments, I also have friends with a daughter with both autism and a degenerative mitochondrial disease. They have been asked, "So how long are you going to let her live like this?" By actual nurses. Um, holy crap. On a less chilling note, these parents also constantly get the "isn't she getting a little big for pacifiers?" Really? You want to take away the one thing that, oh I don't know ... pacifies a child who's in almost constant pain? Bite me.

The Medical Experts
Autism is in the news a lot. Sometimes it's in the news because a celebrity has written a book about their autistic child and how he or she was "cured" through the use of prayer / ABA Therapy / chelation / organic zucchini / oxygen chambers / leeches / Eye of Newt imported from Transylvania.

The one thing scientists know for sure about autism is that it can't be cured. There are therapies that help, but no one therapy helps all autistic people. Lots of kids feel (and behave) differently depending on their diet; going gluten-free, for example, seems to help some families. The important take-home message here is that reading a review of a celebrity book in People does not actually qualify you to give me advice.

The Actual Medical Experts
Sometimes the actual medical experts are more annoying than the faux medical experts. I've read enough studies on things that might cause an increased risk of autism, thanks. Also, we've had enough studies that conclude that girls are slipping through the cracks of autism diagnosis. How about you get back to me when you've figured out a better way to diagnose them?

Also, a lot of medical specialists like to play a little game called Pass the Annoying Incurable Buck. Neurology would like you to see Orthopedics, who sends you to Psychology, who tells you to see the Feeding Clinic, where they tell you to see Gastroenterology, which sends you to Allergy, which recommends Neurology. By this time, Mommy needs to see both Psychology and a Financial Advisor.

The Starers
When Little Dude has a public meltdown, it's a spectacle. I get it. And if you're under the age of, say, ten, go ahead and stare. I'll just smile weakly and wave. But if you're a grown adult, you don't get to just stand there, mouth agape, and stare at my son. Yes, I know he's kicking the floor, crying, and screaming incoherently. The starers are thinking either "get control of your child" or "just go ahead and buy him the Snickers bar already." You know what those thoughts get you? A sure bet that your next child or grandchild will be the meltdown-havin'est baby evah. So good luck with that.

 "There's nothing to see here, folks. 
 Just a child having a meltdown.  Move along."

Next time you see a mom at Target with a melting-down child, here are some alternatives to staring: Smile. Nod knowingly. Offer the "we've all been there" commiseration. (On the other hand, if you see a child with a melting-down mom, you should do what Kate did.


Don't forget to check out Stark.Raving.Mad.Mommy - she's awesome! 

(c)Herding Turtles, Inc. 2009 - 2011

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