The Obsessive Joy Of Autism

5 Mar

Bek:

This: “If I could change three things about how the world sees autism, they would be these. That the world would see that we feel joy—sometimes a joy so intense and private and all-encompassing that it eclipses anything the world might feel. That the world would stop punishing us for our joy, stop grabbing flapping hands and eliminating interests that are not “age-appropriate”, stop shaming and gas-lighting us into believing that we are never, and can never be, happy. And that our joy would be valued in and of itself, seen as a necessary and beautiful part of our disability, pursued, and shared.”

Originally posted on Just Stimming...:

I am autistic. I can talk; I talked to myself for a long time before I would talk to anyone else. My sensory system is a painful mess, my grasp on language isn’t always the best, and it takes me quite some time to process social situations. I cannot yet live on my own or manage college or relationships successfully. I can explain, bemoan, and wish away a lot of things about me and my autism: my troubles finding the right words to say what I really mean, my social processing lag and limits, my rubbery facial expressions, my anxiety, my sensory system’s dysfunctions, my brain’s tendency to get stuck in physical self-destruct mode and land me in the ER. I can complain about the suckiness of being socialized and educated as an autistic and as an outsider, about lack of supports and understanding and always needing to educate.

One…

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Please welcome…

12 Feb

Oliver
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& Dave!
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Kid has been talking about adding a furry critter to our family for quite some time. I’ll admit that I have been entertaining that idea for a very long time.

I really wanted to adopt a rescue pup, but right now I’m barely coping with the second bout of severed iron deficiency in under 6 months. I feel lousy. Walking a dog a few times a day just is too much to ask of this sore body with it’s tired blood.

Not that these cutie pies don’t require lots of care and attention.

They need so much more EVERYTHING than I would have ever imagined, even after reading everything I could set my eyeballs on.

They do not need to be walked, though.

Everything else can be spread throught the day, especially the snuggles and playtime and the neverending supply of hay and veggies.

So far, so wonderful.

Kid is over the moon and we are all very attached to our new family members and they are settling in nicely.

Electricity

16 Aug www.sunshinepostcards.com

I caught this to share with you…

I watched the night sky crack over and over again.

The pulses of light were like memories returned.

A few moments (a long, thirteen second exposure) calcified, concentrated on my screen (once the vocal billows rumbled past and I could plug in again),  and the fine, reaching, dendritic threads appeared and yes, this is precisely how it feels to have lost moments returned after a decade or more.

One small sparkle reaches and branches into more crackles into cracks like a heavy foot on the lake, not yet settled fully into winter.

People can tell me a memory, but it just doesn’t feel true, organic, like the deep in every cell, electrifying every nerve of a firsthand memory, and these second hand memories just can’t capture the intricacies of how my senses & mind focus and capture each morsel, waft, tactile, auditory, proprioceptive vision in an overloaded, carnival ride.

Each large crack, each branch, each baby eyelash and hair-thin thread a sensory memory, each grouping creating a breathing, visual, auditory, wildly flavorful, supersaturated, olfactory snapshot in time, in my strange and wonderful curious, thirsty, synesthetic, autistic, insomniac, famished brain.

It is electrifying.

-b.

You might be an autism parent if….

6 Aug

You might be an autism parent if...

You put chocolate hazelnut butter in the nutribullet to smooth out some of the natural graininess to make it more palatable for your texture-sensitive kid.

(Note:  this experiment would have worked a bit better with a larger amount of this tasty stuff.  Unfortunately, I didn’t even think of getting him to try it again until I had polished off almost the whole jar. It’s not like I went weeks without that occurring to me.  A jar of Justin’s Chocolate Hazelnut blend only lasts a couple of days, at most, around here. It’s irresistible. Really. Our supermarket and Target both carry it, and the Maple Almond (so good on cinnamon toasts). You can also find it on Amazon: Justin’s)

He did ok with the Chocolate-Hazelnut, on warm toasted baguette, but not that enthusiastic.  He did eat three pieces of toast (small pieces) slathered with it, though, and that’s freaking amazing.   I also got him to eat three (individual raviolis) Amy’s frozen Ravioli even though they clearly had some degree of tomato sauce on them (I scraped off as much as I could. How am I the only person in our family who has zero Italian roots and I’m the only one who will touch a tomato, or sauce?!).  YES!

I’m still finding protein and fresh veggies to be a challenge for him, as he won’t eat nuts (Barney Butter thankfully is smooth enough, and available at Publix and Target(woohoo!) that he accepts it as a peanut butter substitute, as PB is off our menu due to G6PD Deficiency), can’t eat legumes (again, G6PD Deficiency is a factor) and he is mostly vegetarian (we are not, but he just can’t deal with the tearing and chewing of ANY meats), so he consumes quite a bit of milk and I make him a super-smoothie every couple of days with bananas, berries, hemp seed, almond butter, chia seed, yogurt, etc..to try to get at least some variety, as far as nutrients go, into him. He also really likes Life cereal and Cheerios, so at least those are fortified. He is growing and healthy, and the kid has a brain on him, so this seems to be working. Of course, I’ll never stop introducing new foods to him and now that he is older, he doesn’t protest but instead tries everything (serious progress!), so it is easier.

You can share your “You might be an autism parent if…” moments on two fantastic facebook pages:  You might be an autism parent if. and one of my favorite special needs parenting resources/communities:  Shut Up About Your Perfect Kid (seriously, if you don’t have the book, you NEED their book AND their Facebook community/page.  This was the first thing I read when I realized that this journey was veering way off path (and at the time, through what looked like an impassable thicket, plenty of prickers, nests of dangerous beasties, etc)…  Here’s a link to the book on Amazon: Shut Up About Your Perfect Kid: A Survival Guide for Ordinary Parents of Special Children.

I also got him to eat fresh cherries (not fresh picked, fresh from the supermarket… we have been mostly housebound this summer… long story for another time) WITH the stem and stone intact!  So I’m not rocking the Lady Macbeth manicure from pitting the damn cherries this go around.  Here he is, after I carefully demonstrated and gave him instructions on how not to break his teeth but still enjoy a good, sweet, juicy cherry.

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A frozen cherry did not fare as well:

Found it.

Peace,

Bek

Rare Disease Day Festivities

1 Mar

Whooo has a rare disease?  

I do. It’s not really that rare in this country, it’s just that we don’t routinely screen parents prenatally (they didn’t check for it in the two rounds of genetic counseling I went through, having nearly zero family medical history, and hahahahahahhahahah, of course I have mutations from both sides of the gene swamp.  The universe is a $&@!ing comedian.) and worse, only two states in the US routinely screen newborns.  For the love of Pete!

This is wrong wrong wrong wrong wrong.

So, here’s how we can make the medical establishment pay attention (that isn’t as likely to get us hauled in like my previous plan to flash my pale, porcelain white boobies while holding up an anti-legume placard to illustrate that not only darker skinned males, but also pasty females, can have this disorder. Don’t fret, my dears,  I’m not flashing anyone (not on purpose, anyway. Sorry about the other day, new neighbors across the way).)

In honor of all of those living with Rare Diseases, please (PLEASE 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. Thank you.

Thank you.

You are the best.
G6PD Deficiency Newborn Screening Petition

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