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Derailure to Communicate.

27 Feb

Interrobang!?*

Pardon my puntification.

Sorry.  I just couldn’t stop.

I’m all done now.  Let’s carry on as though that didn’t happen.  Thank you.

I know a few folks who seem to be experts in this sort of derailing, and sometimes it can be difficult to determine if they are being unintentional asshats, are just not savvy in the realm of interpersonal communications, are intentionally gaslighting you (link to a fantastic piece on The Good Men Project), or are disordered something-paths or narcissists that only dwell in their own little realm of precision asshattery (or assmillinery.  Yes, I know a few that not only make their own hats but they trim, bedazzle, bejewel, and embroider their asshats to dazzle and confuse unsuspecting people trying to communicate and generally live with them.)

This is a fantastic piece that came to my attention, awhile back, courtesy of The Perorations of Lady Bracknell.  I am sharing this version, as it originally appeared and now, thankfully, appears on Bird Of Paradox.  The website, Derailing For Dummies, is back online, but I can’t seem to find this particular piece native on their site/blog.

I hope it brings some clarity and awareness of communication etiquette, be it your own or that of someone who is a serial derailor (derailetor?).

Even the most adept communicator can benefit from this gem.

Here’s the link:

Derailing For Dummies (reconstructed from Google Cache, by BirdOfParadox.Wordpress.com)

Cheers,

B.

*Stylized Interrobang ink by Matt Lackey at Howl Gallery Fort Myers, Florida.  I’ve had this for over a year.  I like the versatility of the interrobang.  I also have an asterisk to tell folks that there is more to my story.

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Tiny Drawings

6 Nov




Originally uploaded by The Happy Aspie

Alex hands me his completed homework & announces “I like to draw a picture with my name. I draw a different one everyday. Today, I made a square wave, sawtooth wave, triangle wave, and a sine wave.”

Whoa.

These things are tangible and for him, they come easier than multiplying single digits.

He also vocalizes the different sounds which correspond to the various waveforms.

I’m officially lost but not as far lost as when my last math teacher attempted explaining the concepts to me ad nauseam. I get it more now.  Maybe. 

Thankfully, this kid has great patience for his Mama, when it comes to sharing what he has learned thus far.

Whoa.

No Beans About It.

20 Jul

Fantastic article on G6PD Deficient patient diet suggestions.

I am a person with G6PD Deficiency (and female so I got my mutations from both genetic parents, which is a little more rare as far as probability goes, but not as rare as once believed.) I am raising a son with G6PD Deficiency and doing my best to not have him endure the oxidizing damage due to contraindicated substances that I have endured in my lifetime. I am hoping that by spreading the word and correct information regarding G6PD Deficiency that awareness will smother ignorance and stupidity that seem to come into play all too often.

Historically, it has been considered a disorder mostly of everyone but white females (and men, but men have been more widely studied and they only need one affected X to be fully deficient…) Women, need mutations on both x’s (one from each parent) to be considered deficient so we are less likely to be fully deficient, and more likely to be partially deficient, meaning we have one x with the affected gene instead of on both x’s. Once upon a time, the term carrier was used but the term partially deficient is coming into vogue as for many women, due to the particular variant or due to lyonization, it is a more accurate description. Of course, as is the case with many disorders that are believed to either include or exclude a particular gender, race, or geography, it is revealed that the excluded race or gender was never really studied, due to many circumstances, but it really is starting to look like an unfortunate tradition that has killed and injured so many people just because they didn’t fill the prejudicial mold and were believed to be categorically exempt or that it was an incredible rarity.

As it turns out G6PD is not as rare as once believed, particularly in females. G6PD Deficiency is one of the top 5 genetic disorders of pre-natal origin causing 26% of global common birth defects.

It is real and it goes beyond avoiding fava beans. The website G6PDDeficiency.org is a phenomenal resource on many aspects of G6PD Deficiency, including handy lists of contraindicated medications (don’t assume your doctor knows what is safe. Check and double check. I have found that a good pharmacist is worth their weight and seem to have a better knowledge of contraindications, but still I would check and double check and check again for good measure.

The article/page I have linked to, below, offers an excellent rundown of how we do need to be vigilant about what we put in our bodies, as there are different degrees of deficiency just like there are over 400 identified variants of this particular enzymopathy.

Why G6PD Deficient Patients Should Avoid Legumes.

I’ll post more about our experiences living with G6PD Deficiency as I get around to it. Awareness does seem to be growing in the USA. I was thrilled to see that the writers of the USA Network’s “Royal Pains” included a female patient they eventually diagnosed with Favism/G6PD Deficiency. I was even more excited when they suggested testing her young daughter due to the hereditary nature of the disorder. It was really fantastic to see awareness of this disorder and that it can impact females, as well, raised in entertaining “Royal Pains” fashion. Pretty great.

PLEASE PLEASE PLEASE consider signing the petition over at G6PDDeficiency.org.  Dale Baker, the force behind the site and a lifesaver, is collecting signatures to present to hospitals and physicians to super-emphasize what all of us know, that routine newborn screening will save lives.  It will take you just a minute, but it can save lives and make all of our communities healthier.  After you sign, or even if you don’t sign, please consider tweeting a link to the petition or this blog post.  Awareness is powerful.   Thank you. 

G6PD Deficiency Newborn Screening Petition

An Obvious Sign.

25 Jun

Obvious sign of a day that needs to come to a close… Not being able to find my reading glasses.
Yes, I was wearing them.  It took me 10 minutes of squinty searching and they weren’t in the freezer or the spice cabinet.  I found another pair and popped them on.
I was, then, wearing two pairs of reading glasses on my face, and another on the top of my head, with one pair hooked on my collar, while I searched for any single pair of reading glasses so I could check my email on my ipod and recline with a cup of tea.

At least it was only four pairs time.

It’s progress.

(four weeks into summer break so far)

My boy is the sweetest, kindest, and most patient person I know. When I apologize because I’m too tired to take us on any big adventures on the average day, or when the pain gets bad enough to warrant a day of Spongebob and Cheerios, heatpacks and drawing, he gently tells me that my apology isn’t appropriate because I didn’t choose the pain or the fatigue and he tells me I’m his “sweetest, cutest, nicest Mama”. I tell him that I’m also the luckiest girl in the world because I get to know him and be his Mama.

I don’t want him to ever feel like his role is, primarily, soother. He is my child and I am his Mama. We are best friends and on our really difficult days, we are kindred spirits who just don’t fit in easily but always fit in with each other. (Though these days he’s getting awfully close to the border of where I am really embarrassing in my goofiness, when we are out in public. I get reminders before we get out of the car.) At the same time, there is so much negativity out there about how hard it is to be the parent of an autistic kid and I make sure he knows that the difficult parts of parenting and his autism is other people and not him and that he is a joy. I also remind him that we are all works in progress and he has been saying that, lately, whenever either one of us has a particularly spazzy or goofy moment.

I am the luckiest girl in the universe.
I am the luckiest Mama in the universe.
I am fortunate beyond measure to know this remarkable kid.

Here he is, jumping for joy:
So happy!

And right now I need some sleep.
There will be a post to catch up on the events that I have skipped over… Eventually.

Goodnight.
xo
B.

Image

AccidentalThong.com celebrates 1000 Ausome Things #AutismPositivity2013

30 Apr

Here are a few of my favorite images which remind me of three of my favorite things about autism:
-When we are given the space to be ourselves, we soar.
-There are always new angles and new ways to approach everything (when in doubt, SPIN!)
-We understand each other even when we can’t find our words.

AccidentalThong.com celebrates 1000 Ausome Things #AutismPositivity2013
These are two of my favorite things! Happy Autism Acceptance Day!
Two Happy Aspies

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