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What mother wouldn’t want to hear this?

June 11, 2012 By 2 Comments

I had posted THIS conversation with Ash to FaceBook, and it lead to a friend joking that Ash aught to marry her daughter and have brilliant children who like to do lots and lots of homework.  That lead to my noting that he does aspire to find his “love match”, get married and become a Daddy when he grows up.  That lead to the following comment of hers, which just made my day:

“As amazing and awesome as he is, how could he not aspire to that?!?!?! :) I, for one, would be honored if, someday, someone so incredible chose to pursue my daughter… and I hope I’m raising her to understand that she should be too! :) ”

What mother wouldn’t love hearing that about her son?  Well….ok, what mother who doesn’t want to keep her son a little boy following close at her heels forever, whether or not he’s capable of more, wouldn’t want to hear it?  (Switch to the cliché-for-a-reason of overprotective Daddies and their little girls, if you like.)  And of course, I’m not just any Mommy, and Ash isn’t just any son.  Sadly, it is also probably relevant to note — in case you didn’t infer it from how the quote was written — that the friend’s daughter in question is “just any”, in the sense that she is neuro-typical.  It already hit me hard when romantic prospects were casually laughed about in only the best-natured of ways, when the future partner for Ash that was speculated about between glompings was also a special-needs child.  There is a whole ‘nother edge to it when you’re hearing it like this….when you’re hearing it from someone who knows that normally, eventually, how cute (in more than one respect) Ash is, is likely to be overshadowed by how different he is, how challenging things are for and with him.  I mean, it’s only natural for me to feel that he deserves for the whole world to love him, and that such will be true even when it comes to romantic love (if it turns out that that’s indeed in his matured nature, and in his future — a doubly loaded question with Autism).  I’m me, though, and we’ve been over that.  I also know, though, that it’s not in everyone’s nature.  In fact, it’s not in a LOT of people’s natures, especially if it’s not already more than the typical concern for their own children.

So thank you, Julia.  Thank you for not being most people, and for trying to raise your daughter to not be most people.  The world really can’t get enough of people like you, because the world really does have a lot of people….overlooked, misunderstood people….as incredible as my son.

The photo valentine I made in 2009, playing up to what a heartbreaker Ash had always been and still was, and amused by the fact that "aloof" is not really him at all.

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Adding to my resume as a professional amateur

May 12, 2012 By 1 Comment

I know you’re waiting for a post about Ash’s birthday party, but since I’m still collecting and editing the photos from you, you’re going to get another tangent in the meantime.  You won’t mind tooooooooooooooo too much, hopefully, since I am kind of proud of it.  Well, the content of it.  You’ll see.

Ok, so remember when I posted a photo of the ‘special interest’ cake that I made for Ash’s 7th (yet first, in a way) birthday party?  It was kind of a birthday post teaser with the excuse of being for my last, actually-got-it-up-amidst-the-chaos Wordless Wednesday.  I was pretty damn proud of that dragon cake.  I AM pretty damn proud of that dragon cake.  He had requested, “A chocolate dragon cake shaped like the real thing, that looks like a purple dragon with blue and green polka-dot scales all over.”  He was also rather intent on the fact that Mommy was going to be the one to make it, so what was a Mommy to do?!

Short Answer: Overachieve!  ;-D

Longer Answer: Spend about 7 hours total, making the cake and its components….which, since I’d never made the like before, and considering the number of scales applied, really isn’t too bad. The body was made from two round cakes (Devil’s Food chocolate), cut, arranged and trimmed to give the dragon its shape. Layers were glued together with strawberry preserves. Then the outside got painted with chocolate frosting, so that the “skin” could stick on — that was homemade marshmallow fondant, colored with Wilton icing pigments. The fondant was used for the skin, scales, the white parts of the eyes, and the nose. The pupils were chocolate chips pushed in point-first, and the nostrils were jelly beans. The claws, tail-tip, spikes, wings, horns and funky dragon eyebrows were made from chocolate. I just got one package of white melting chocolates, used the pigments to color different portions of it, roughly painted the desired shapes, via chopstick, onto some wax/parchment paper, let it re-harden, and there you had it. Unfortunately, I had to patch a horn with fondant and move the wings back so they were partially supported by the hind legs, after things got a little roughed up in transit. The dragon lies on its hoard of “gold” chocolate coins, curled around its clutch of foil-wrapped candy eggs. It’s on a saran-wrapped cutting/draining board, because that’s what I had that was big enough, and already clean, and I was in a hurry to get a ridiculous number of scales stuck on.

Credit goes to Steffan for helping me get the fondant kneaded in the first place, and to Ash’s “AuntieTora” for helping me knead the pigments in later on, sparing my wrists some strain.  Tora also sat there with me for a few hours and made tiny balls of scale-colored fondant, to speed up my process of making the scales.  Still, the cake was all-me enough that I don’t feel like I cheated on Ash’s request, and yes, I am damn proud enough of that thing, to say so again. Sure, I can pick out things that could look better, that I would’ve done differently or more effectively or more elaborately.  Sure, it pales in comparison to some of the professional dragon cakes you can find if you brace yourself and then do a google image search for “awesome dragon cake” — although to be fair to myself, I think it looks cooler than a lot of the cakes that also appear as results of that search, that were done off the same base model that I spring-boarded off of.  In any event, for an amateur with no special training or tools or practice or anything, I think I made a pretty spiffy dragon.

It certainly made an impression at the party!

Thus far, I’ve at least looked through 3 out of the 4 sets of photos I know were taken at the big event, and am stuck reeeeeeeeeeeeeaaaally hoping that somewhere in that last set is a good photo captured when Ash first saw his completed cake.  ::sigh::  At least I have the memory.  ::laughs::  He was actually stunned enough that what I suppose I’m really hoping for is a photo of the moment AFTER he first saw the cake, because it took him a bit of processing what he was seeing, before he reacted.  Heehee.  And oh, almost all of the boys at the party were oh-so-disappointed that knight-dressed Ash would neither make a big show of slaying the dragon, nor let them be the one to decapitate it!  In fact, Ash, who has no concept of torture, insisted that the cake be eaten tail-first, because it seemed both kinder, and to preserve this new dragon of his longer.  (And yes, I was relieved that he did not backpedal on his acceptance of the fact that a dragon CAKE is meant to be EATEN, not preserved as a keepsake toy or decorative item.)

That actually leads me one step closer to the tangent that prompted this post.  See, Ash’s Auntie L-, my sister-in-law, does fancy baking professionally.  When she’s not indulging nieces or nephews with birthday cupcakes, she’s making things like wedding cakes.  It’s a recent business but it’s been picking up speed, and with good reason.  She’s taken the classes, she’s gotten the books and tools, she’s practiced and improvised and gotten really GOOD.  Good enough that I felt a little bit bad about taking her up on the offer of birthday cupcakes again this year, even if, yeah, she always does do it for her sister’s kids, and for her and my BIL S-’s friends, etc.  There’s a part of me that still felt like it had to lead to commissions from parents of party-attending kids, for it to be worth her while.  Regardless of how it got there, it’s still my baggage, and I’ll own that.  Eniways, I did take her up on her offer, figuring that it might be a good idea to have something in an alternative flavor, for kids (or sticking-around-ing parents) who don’t like chocolate.  It happens.  So, pending her agreement, I requested vanilla-with-strawberry-filling cupcakes (since Ash likes that flavor combination too), decorated with either green dragons or blue castles resting on cupcake-mounds-turned-hills-of-grass.  Lucky me, one of her books had gum paste castles and dragons in it — proving yet again that although Ash’s special interest isn’t the most mainstream obsession for little boys right now, it’s not impossible to find if you look!  Yay!  Well, L- made them (along with a few that had crowns on them, instead), and they were SO CUTE.  I mean, seriously, look at these fabulous cupcakes!  There’s a lot of detail there!

I told her that if she could make them from gum paste she could make them from clay, and should consider doing so!

Here’s where it gets a bit weird for me, though…

Her cupcakes weren’t exactly dismissed, but by all accounts from kids, parents, and other present adults, they were overshadowed by my dragon cake.  I mean, even by people who had no idea that I’d made one and not the other, or either of them, and had any reason to want to make the exhausted Mommy feel that little extra bit better.  I’d be all, “Ash’s Auntie made these cupcakes, aren’t they awesome?!”  The response would inevitably be something like, “Wow, yeah, those are really cute….but OH MY GOD WHO MADE THAT CAKE?!?!!”  Cell phones were snapping pictures.  One mom posted a blurry picture of my cake on FaceBook, and about 60 strangers had left “likes” and comments going ga-ga over it, by the time I was even home from the party and glanced at the computer.  I quite possibly managed to stay awake only because all of the blood was rushing to my head while I blushed through all this.  Most people ate their way through the cake first, and then a number of the boys asked if they could also have a cupcake….it turned out that they wanted the chance to decapitate a dragon!  (::shakes head, laughing::  And hey, while we’re laughing at gender clichés, I should point out that most of the little girls were asking if they could take a piece of the dragon’s gold.)

Let me reiterate: I am grateful for the cupcakes, which I thought were yummy and looked awesome.  Ash, and everyone else, agreed.  Major props to my SIL.  What gets me is that you’d EXPECT her to earn props, as it were.  She’s the professional.  You would not….or at least I would not….expect me, the amateur on my first try here, to earn MORE props from people for my work than she did for hers, let alone without even earning them because my work WAS coming from an amateur.  Yes, I am capable of baking yummy things.  Yes, I’m crafty in general.  That doesn’t mean I know what the hell I’m doing when it comes to specialty, decorative, sculptural, baked goods.  Except….apparently I can fake it really well.

Here’s where it gets even stranger for me…

There was a supportive push for me to think about NOT being an amateur.  Several friends suggested submitting a photo of my work to certain shows (seriously….it’s not THAT good by a long shot!), or at least certain websites, before someone else did it.  Several friends said that if I lived close enough to them, they’d totally have me make special birthday cakes for their kids.  One of the moms at the party kept telling me what kind of price tag she’d expect and accept, on a cake like the one I’d made.  And, of course, I attempted to take this in graciously, but brushed it all off in favor of being relieved that I wouldn’t have to bake anything elaborate again for a good, long while.  I mean, the majority of the time, I can’t even get my body through preparing a simple meal, and if Steffan also happens to be too tired and/or ouchy and/or sick to cook or even assemble some basic edible, we simply don’t eat.  So, in the wake of a 7 hour cake project, I declared a number of times that I was not going to be making any more cakes, any time soon.  I meant it when I said it.  It was not meant to be a challenge.  With a professional fancy-baker in the family, the only family members who would want me to make a cake for them are my immediate family members, and lo and behold, we’d just gotten through the run of OUR birthdays.  I had a year’s reprieve from trying to do (let alone try to out-do!) that again, and I was glad and grateful for it, despite my pride over what I’d managed.

And then, I got a call from the aforementioned mom.  She’d been gushing about my dragon cake to her sister, who was now interested in hiring me to make the cake for the upcoming birthday party of A-‘s cousin.  Would I be willing to talk with her?

I was nearly speechless, though not so much so that I couldn’t laugh at myself.

A-’s cousin is having a 9th birthday party today.  It’s luau-themed.  And yes, I made the cake.  It took me about 10 hours (including some experimentation time, which was part of the deal since she wanted me to make something I’d never made before) and I’m still paying a hefty price, physically, but after needing to buy 3 tires and patch another the same week earlier this month that we paid rent, I was not in a position to turn down the commission.  Oh, if she’d wanted something covered with gum paste hibiscus flowers or something like that, well, I’d have had to pass it on….ideally, to my SIL.  She liked the idea of a “birthday island” type deal, though, when I started giving her ideas about the kinds of cake I thought I’d be able to make.  She liked the idea of sticking a shining, red, number-shaped candle at the top of an exploding volcano — which is why there’s as much lava as there is — and of having palm trees and sand and assorted other things that one might not necessarily expect to be edible decorations.  That, I thought I could pull off.

Since she came a little too close to running off the road a few times because she couldn’t stop staring at the cake I’d made for her, I guess I DID pull it off.

Welcome to Birthday Island!

The palm trees growing on Birthday Island have pretzel rod trunks, chocolate coconuts, and fondant leaves.

The sand on Birthday Island is a mixture of grushed cinnamon grahm crackers and edible, gold-colored sugar, stuck with a thin frosting wash to colored fondant. It sparkles just a bit, like real sand does.

A thin coating of blue glitter gel icing over irregularly pigmented fondant, gives the river/waterfall flowing down Birthday Island a liquid gloss.

Yes, I’m pretty proud of myself again.  I improvised the concept and the creation, and I think it came out rather well….as well as fairly close to some professional models, apparently.  (In fact, the woman who commissioned the cake reports that similar cakes from a professional bakery, “Start at $500,” so with this one costing her a little less than half that, including the grocery bill, I think we both made out pretty well.)  The island is constructed from three layers of homemade funfetti cake (vanilla cake, with flower-shaped sprinkles of assorted pasted colors, scattered throughout the batter).  Vanilla frosting infused with hazelnut extract and turned pink with Wilton no-taste red icing pigment, glues things together.  The fence is made from wafer cookies filled with chocolate-hazelnut cream, and stuck in place by the aforementioned frosting, sans-pigment.  Ice cream sugar cones give the volcano / mountain peaks their base form — they are covered with fondant and have a chocolate lava flow, although the peak of the volcano is plugged with fondant so that it’s easy to stick in a candle.  Homemade marshmallow fondant also makes the grass, the base for the sand and for the water, the leaves on the palm trees, and the writing.  The palm tree trunks are made from mini pretzel rods, and they have chocolate coconuts.  The sand is made from crushed cinnamon-grahms, and edible, gold-colored sugar.  The water has an overlay of blue glitter gel icing.  The rocks are a combination of chocolate-covered malt balls and just chocolate, partially melted, molded, and then given some extra pigment.  It all aught to satisfy her daughter’s sweet tooth!

This time, though, I’m serious.  Really, really, in a stick-to-it-no-matter-how-enticing-the-payment, sort of way.  No more cakes.  Not for at least a few months, anyway.  We have to move in a few months, Ash has a CSE meeting coming up later this month….I’ve got other things I need to do, right now.  This wasn’t something I was planning on doing, anyway!  I was giving out my SIL’s business info, not expecting to get business for doing the same kind of thing, myself!  In fact, I’ve resisted posting my triumph on FaceBook, because I don’t want to risk it getting weird with my SIL.

…But yeah, I’m kind of proud of myself.

 

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Some defiance from a mom told her child wouldn’t survive infancy, on the eve of his 7th birthday

April 23, 2012 By 2 Comments

Ash was two days old. It would be days yet before I was allowed to hold him.

7 years ago tonight was the last time that I had every reason to believe that my baby would be born in July, and that we’d have a fairly typical (or as typical as we are(n’t), anyway) parenting experience.

I feel the annual, impending-birthday sniffles coming on, the sneak-attach flashbacks to the NICU days, to the doctor who told us not to get attached, because we couldn’t expect our baby to survive.

Well screw you, Dr.P-.  ASH IS ABOUT TO BE SEVEN AMAZING YEARS OLD.  Typical he isn’t, but I have far more hope for him than I do for you.

 

 

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Easter 2012

April 12, 2012 By 2 Comments

Last year Easter was ON Ash’s birthday, and Steffan still wasn’t allowed to take the day off.  I had staged an egg hunt in the living room (see photo HERE), and that was about that, for what we could do for the holiday.  This year, Steffan has a boss that tries harder to remember — and accommodate — the fact that my husband is a person with a life and a family, and not just a hard worker in a cruddy job.  (♪♫ And the choirs of angels sing! ♫♪)  Despite the fact that April currently has more events, occasions, appointments and meetings than days, Steffan has had his work schedule arranged in a dysfunctional way that actually allows him to have the time off he needs for them, instead of a dysfunctional way that doesn’t.  This is a considerable relief, as well as cause for celebration!!  (I mean, Steffan even manages to have a day off for the family birthday party, for Ash’s actual birthday, AND for Ash’s birthday party!)  And after a day when Ash had a show to do, followed by an Endocrinologist appointment for me, followed by a doctor’s appointment for him….following a day when a doctor’s appointment for him was followed by a Rheumatologist appointment for me and then his show….a day off together that was only being spent on Easter, was going to come as a celebratory relief anyway!

There was another photo in which Ash's new hat wasn't falling over his eyes, but he happened to have his arms outstretched in a "Ta Da" gesture, and it looked like he was trying to crucify himself. Just....no.

Steffan is Cathoic, so Easter Sunday started with church.  Now, normally if Ash and I accompany Steffan to church, it’s to a special GLBT & Friends mass held in the evening.  That mass has the benefit of being smaller, being quieter, being more personal and informal, and being entirely comprised of people that are so happy we’re willing to let them get to know our son, and let him get to know them, that they are more than happy to be extra understanding of his special needs.  (It’s quite sad that that’s the way it is….but that’s the way it has been.)  This, though….this was a standing-room-only, 9am Easter Morning, gospel-style mass.  Honestly, Ash held up pretty well.  It might actually have helped that, with nowhere else to fit, we ended up being herded into the front pew, where few people automatically go no matter how friendly the church.  Being in the front put us closer to the loud music, but it did allow him to watch the amusing antics of the man at the piano, as well as randomly get smiled, winked and waved at by the Pastor, as well as a member of the choir that knew us.

I have to say, too, that I am ever impressed by this church.  I mean, it’s not every Roman Catholic church that a spiritually eclectic woman can show up at on a High Holy Day, and not feel offended by or at least uncomfortable with a regrettable chunk of the proceedings.  I mean, the Pastor is such an avid and outspoken supporter of….well, the same kinds of things we are….that we sometimes find ourselves wondering how he has managed to not get stomped on by Vatican hierarchy, yet.  Eniways, there were only two bits that made me twitch a little, instead of cheer.  One was a direct bit of required liturgy straight from Paul, in which the Jewish tradition of Passover was used as a metaphor for purging yourself of the sinfulness of Judaism.  Paul’s so good at that kind of thing.  The other was a line from the homily in which it was noted that eggs have been a symbol of Easter for hundreds of years, and went on from there….but the part of me that knows about things like “pagan” traditions older than Christianity, and Eostre, and eggs coming into things as a fertility springtime symbol….well, it got a bit fidgety, and wished that among the many religions the Pastor made a point of including in his goodwill, he’d thought to include those “New Age” ones that are actually really, really Old Age.  Ahh well.  It’s a learning process, at at least his mind is far more open to lessons, than most.

Overall, since Ash handled things well, it turned out to be an enjoyable Mass.  One cute moment thrown in was when the Pastor surprised a child congregant with a 4th birthday cake, and having everyone sing the birthday song to him.  (He also snuck over to Ash afterwards, and whispered to him about how he knew HIS birthday was coming up soon, too, and he hoped to be able to do something to celebrate it.  As it happens, our annual mass family birthday party thing is this coming Sunday, which is also the GLBT & Friends Anniversary Mass, so the Pastor, as well as some of our friends from that, are probably going to stop by the party on the way there.)  Another highlight was watching the baby who got Baptized — a baby who looooooooved bathtime, and considered water dribbled on his head to be close enough to provoke a lot of giddy arm-waving, drooling grins, and hiccupy giggles….also a baby who apparently passes out cold, mid-giggle, several seconds after bathtime is over.  ;-)   It was pretty adorable.  And of course, Ash loved getting to wear his own special outfit that let him be dressed-up like the grown-ups.  Steffan and I both wore burgundy-and-black-based dressy stuff, so that we’d match Ash, and we drew a lot of attention that Ash quite enjoyed.

There was an egg hunt for the kids after the Mass, but it just involved some eggs scattered loosely over a small patch of lawn, and by the time we’d spent a few minutes taking the pictures Ash wanted, all the eggs had been collected.  Excess candy was offered to us for Ash, but it’s not really a candy thing for him, it’s an issue of the fun of the hunt, so we thanked them and told both them and him that I’d just give him an Easter Egg hunt in our yard.  He wanted to change into a bunny for the egg hunt anyway.

I didn't get around to making face paints, so I just used some of my eyeliner to give him a bunny nose and whiskers. His re-used froggy Easter basket was still waiting, full of things like filled eggs, so we just did the hunt with empty eggs I had left over, glued together from broken ones, and a basket that the parent of another child in his class, had given out.

Doing the egg hunt in the front yard worked out rather well.  We got through one round of him finding the eggs after I hid them, and then N- the neighbor’s boy, and a young cousin of his, noticed us and came over.  Ash showed them the basket of eggs he had found, and they decided to get involved.  We spent the next hour or go getting into switched-up teams, and taking turns hiding the eggs and finding them, in different combinations.  Ash was re-introduced to the game of “Hot / Cold” during this activity.  Now, our front yard does not make for a very challenging egg hunt despite the need for mowing (and our back yard still has piles of deer droppings all over it), but everyone had a good time anyway.  In fact, N- later whispered to me, “You know, I did not think it would be so much fun to play the Easter Egg Hunt game.  I was just doing to to be nice to Ash.  But actually, it was a lot of fun!  I had a really good time doing that.”  Of course, as the mommy of a sensory kid, I also have to note with pride that Ash kept those ears-on-a-headband and that almost-face-paint on, the whole time.

He's just as giggly as a bunny as he is as a boy.

Ash's method of hiding eggs is to toss them around randomly. Then even he doesn't know where they are. ;-)

After we’d used up our steam for finding eggs, N- and his cousin wanted to know if Ash would like to come to the park with them and play “soccer” — which really meant taking turns trying to show off how far they could kick or throw a soccer ball.  That itself was amusing because N- in particular wanted to show off for Ash, but N- has only a smidge more athletic prowess than Ash does….and Ash doesn’t really have any.  Still, it all worked out well enough for them.  N- and his cousin were eventually ready to move on from there to the playground, still with Ash, but Ash was wearing out between his continued recovery and the excitement of the day, so I thanked them and excused us, so I could take him home to rest for a bit.

"Daddy, wake up! I'm pretending to be the Easter Bunny and I found and hid and found all the eggs, so now you have to see what I gave me!"

Easter goodies left under the Easter card that Ash had made the Easter Bunny.

After a bit of a breather, it was finally time to discover what the Easter Bunny had left him.  I’d covered the area with a blanket, earlier, because I knew if he got distracted by it before church, things would not go smoothly.  When the great unveiling occurred, Ash found that under the card that he’d made for the Easter Bunny (and mind you, I had just suggested making an Easter picture….it was Ash’s idea that it was meant to be a card to be left for the Easter Bunny — we’d never put much fuel into the EB myth, but he’d picked it up at school), was left a bunch of goodies for him.  The EB had filled his old froggy Easter basket that we’d left out.  There were Easter/Spring-y pencils, since he enjoys choosing between thematic pencils whenever he does his homework.  There were two brother-bunnies, both small and soft and otherwise identical, but one with blue fur, one with purple fur.  The EB must’ve heard about his interest in matching up his stuffed animals into likely genetic as well as emotional families.  There were a few shiny plastic eggs, one filled with a few sour-sugar-covered jellybeans to try (in a tiny ziplock bag, so they wouldn’t spill all over the floor when he opened the egg), one filled with a new red wiggle worm to replace the one that broke, and the rest filled with animal stickers of that variety where if you tilt them, the picture changes.  Ash can’t get enough of looking at animals, after all.  There were 3 small chocolate bunnies (he gets to eat half of one of them, if he first eats a significant quantity of something healthy he doesn’t normally consume a significant quantity of).  There was also one of those gel-and-air-filled sensory fidget squishies, shaped like a yellow chick, that had an LED ball inside it that flashes colors for 15 seconds or so, after you whack it.

There was also a DVD of “Pete’s Dragon” from our friend Jessica.  On top of that sat this year’s traditional bunny, which actually looks a bit like it might be the baby of the bunny featured in that linked post.  There was also a fabric flower with a bendy-stem, from us.  I’d thought of getting him a blue flower mylar balloon for Easter, since he enjoys them so much.  I’d also thought of getting him some manner of blue flower, for his school performance.  Since I didn’t have the opportunity to get that far, I reconsidered the balloon plan, and decided to get this sort of blue flower, for Easter, instead.  Now it can be a (somewhat) permanent prop for his imagination play — whether he’s acting out a more elaborate story in which a flower is featured somewhere, reflecting on the number of times he’s come across a reference that people often give flowers as a token of affection, or merely pretending that he can smell flowers.

This is the Easter card that he made the Easter Bunny.

Oooh....all kinds of good stuff in there!

 

 

 

 

 

 

 

 

 

 

You can't see it in-frame, but Ash is holding up the DVD triumphantly.

Ash is "smelling" his flower. Just take his word for it.

Those stickers are pretty cool, and it hasn't even factored in yet that they are stickers.

 

 

 

 

 

 

 

 

 

 

The chick glows!

The chick's head kind of goes BLORP, when squeezed.

 

 

 

 

 

 

 

 

 

 

Magic Wiggle Worms. $6 at the zoo gift shop, $1 at DollarTree.

After a while of playing with his new things — by the way, the chick is no longer capable of going BLORP, although it does still light up — Ash settled down to watch Pete’s Dragon, while Steffan made ham for dinner.  Specifically, pieces of ham were grilled up in a base of orange juice and cinnamon.  Ash likes ham, but has never had it coated with anything before.  He ate it anyway!

Under all of the circumstances, he was allowed half a chocolate bunny for dessert. He kept making it hop to his mouth. Gee, and as a kid, I wasn't sure which made me feel worse....going straight for the head, or torturing it by eating up from the feet.

And that, my friends, was Easter.  Well, aside from the bit where the evening before, Ash dyed eggs for the first time…!

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I know who to be on guard against, all right.

March 27, 2012 By 7 Comments

WARNING: This hoodie contains one special-needs Mommy. Her pockets currently contain a cell phone, keys, non-driver's ID, and a library card. She could really mess you up with that library card.

Ash saw a photo of Trayvon the other day, when I was reading an article.  His response to seeing him there in his hoodie? “Mommy, his hood was up so I think his head must have been cold. Could you give him a warm hug?”

Wish I could, sweetie-boy….wish I could.

~~~~~~~~~~

By the way, the kid that almost knifed Steffan in the gut was NOT wearing a hoodie.  In fact, he was just wearing a white t-shirt….two, if you count the one he tried to steal.  Current suspicion is also that he was not a 14 year old wannabe gangbanger — although they think the friend that helped usher him from the store once he was also caught with the knife in his hand, is the same teen that was wanted two years ago for breaking into cars in the area — no, now it is suspected that he’s actually the 12 year old 5th grader who was recently kicked out of the school district for pushing his principal down a flight of stairs.

Well, that’s just grand.

~~~~~~~~~~

So, today I wobbled off to the local library branch to meet a woman who had found out from a mutual acquaintance online that we were trying to pull off a birthday party for Ash, and was interested in asking if she could help in some small way.  Lovely woman.  Well eniways, while we were at the library talking, some other random local woman I’ve never met before, apparently overheard us and took it upon herself to listen in on fragments, from the fringes.  From what I gather, she listened to some of the part about how Ash almost never asks for anything, so when he asked, with so much emotional investment, for this party, we really wanted to make it happen for him.  From that, she concluded one thing.  She also must have overheard the part where I noted that Ash has Autism.  From that, she concluded a whole bunch of other WTFery.  (Yes, you may use the term “whathefuckery” in your own life, if you want to.  It’s lamentably useful.)  Where this gets really good is that she must have left the library before we did, because just about when the lady I had met was dropping me back off at my driveway to spare my legs another walk through the cold, the stranger was cutting on foot through the park by our house, to continue down the street in her own direction.  The stranger recognized me, and felt the need to run up to me before I finished getting into my house, and impart her opinions.

“Wait, you son is mentally disabled? You had sounded like a good parent to me, but I guess not. I mean, I can’t really encourage you if you’re raising a gay kid.”

Whoa.  MATRIX moment.  I mean, I had to really be on the internet just then, not “real life”, right?  That woman was seriously trolling.  She lurked, took fragments of overheard conversation out of context, completely twisted all possible sane conclusions that could be drawn from them to create an offensive contender for MOST LUDICROUS AND INFURIATING THINGS SOMEONE HAS SAID TO ME TODAY, and then went out of her way to deliver her message into my personal space.  Tell me that, if not told otherwise, you wouldn’t have assumed that the quotable above came to me by way of blog troll?!

I guess I sounded like a good parent from the part about wanting to actually be able to give my un-spoiled child something he really wants.  Unfortunately, I suppose, it turns out that he’s Autistic.  That brought her to mentally disabled, which it seems is not only a travesty, but all my fault.  But then — because that just wasn’t borked enough! — she jumped from mental disability to sexuality.  All those with neurological….sorry, forgot to be vague enough….all those with mental disabilities are gay?  Who knew?!  (I’ll be sure to tell my almost-seven-year-old that he can only invite boys to his party, because they are the ones that some day he might want to screw.)  And, of course, any child that is gay is gay because of their own bad choices, except insofar as it is the fault of their parents.  Indeed, I can see why she needed to run over and make sure I knew she couldn’t support me.  I mean, how messed up are WE?!

I bet she thought she was being all sensitive because she didn’t use the word “retard”.

Don’t worry, despite my black hoodie, I did not decide to open her mind by carving intricate fretwork all over it, Melnibonéan torture style.  I said, “There are so many things wrong with you I don’t even know where to begin,” closed the door in her face, and went downstairs to make myself an ice cream cone.

~~~~~~~~~~

By the way, EVERY SINGLE (somewhere around 7) “black” person that passed me as I walked to the library in my hoodie, today, nodded and smiled at me appreciatively — which is a more flattering proportion than is typical.  I got a fist-pump from the one latina I passed.  Of the 5 “white” people who passed me, one said, “Word,” one (who was also wearing a hoodie) nodded, and three looked at me suspiciously.  I thought it was interesting.  My wearing a hoodie was never intended or presumed to make a statement, in the past.  My wearing a hoodie could easily have been intended to make a statement today….but in all honesty, I would’ve been wearing one anyway because it was that kind of day.  My wearing a hoodie in the future will also not ride on whether society views it as threatening, should view it as threatening on me if they are going to view it as threatening on someone of a different skin color, or needs to bloody well learn that my wearing a hoodie no more means I’m likely to do them physical violence, than my wearing a Victoria’s Secret camisole under said hoodie means that I am inviting them to be sexually violent towards me.  And yet….AND YET….almost everyone who saw me in my hoodie today, took for granted that it told them something about my personality, and not just about how there was kind of a cold wind today.

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Birthday plots, birthday schemes, birthday dreams

February 21, 2012 By 3 Comments

Ash is a complex child who lives in a world of simple magic. This is part of how I celebrated it for him, last year, when he turned six years old.

Ash will be turning seven this year.  SEVEN.  That’s just crazy.  Completely crazy.  It’s surreal, too.  I mean, it’s probably even more surreal for him, since he remembers most of those 2,557 days, and probably with a lot more clarity of detail, if not context, than I do.  No, really.  I know the kid’s got an eidetic memory, but even so I was impressed when he handed me a memories from infancy, like the exact appearance of one of his crib toys, or how I wore my hair when he was a baby.  That was, it impressed me until he handed me a memory from his first two months of life.  I mean really, is it any wonder he has trouble pulling the right information from his head, with so much in there?  If living spaces are hard to keep organized if you have more stuff than room, imagine head-spaces!  And living spaces don’t have neuro-disorders, to boot.  Well, I do wonder about that one place we rented where there were no right angles and I think the architect had a better grasp of M.C. Escher than of basic spacial math…

Can you tell I’m a bit out of it?
Yeah….and I haven’t even quite entered that period before any given birthday of Ash’s, when I get all wonky-emotional because he’s about to be however many years old, and we’ve come so far since the beginning, and by the way F*CK YOU DR.P-!  *ahem*

Eniways, so yeah, I’ve got this amazing kiddo, and he’s lost 6 baby teeth so far, and he’s completing the 1st grade, and he’s making his first career aspirations and wedding plans, and DRAMATICALLY DELIGHTED DRAGONS, BATMAN! he’s going to be freaking seven years old, by the end of April.

Did I mention that he’s going to be turning seven?  Yeah, it’s nuts.

And I’m nuts enough to want to do something about it.  Something good.  Not something “good enough“….something that Ash would love even if he wasn’t him, and will cherish forever because he is.  It doesn’t hurt, of course (except in the ways that it does hurt), that Ash wants it too.  For the first time, last year, he started having ideas about what he wanted to do for his birthday….and last year really didn’t work out in terms of pretty much anyone’s plans.  It’s not that he wasn’t still happy with what I improvised.  It’s not that he had really expressed all THAT much, in specifics, about what he hoped for, or about how he felt about it not coming to fruition.  Of course not — he’s him.  He doesn’t get anything resembling ‘the wannas’ all that often, and whether that makes it more or less surprising, he doesn’t handle it badly when ‘the wannas’ can’t be or aren’t indulged.  Maybe part of it is that the struggle between reality and what he wants, needs and/or expects from it, is pervasive in his life anyway, because of the Autism, because of his Sensory Processing Disorder.  Whatever.  I’m rambling.  Fact is, Ash has once again started whispering tentative mentions of things like the fact that his birthday comes in April, and that this school year he hasn’t been to any birthday parties yet, and gee, do I think he’ll go to HIS OWN birthday party?  He’ll bring up the fact that last year (albeit on a delay) we made him his castle bed, and then ask if I think any friends will come over to his castle.

Other kids are starting to care….and not in a good way….that he’s different.  The years of kids inviting everyone in their class to their birthday party, by default, are already ending.  How many chances does he have left — even faint chances — of being a part of that kind of social dynamic?  How many does he have left of having that kind of social dynamic celebrating HIM?  Don’t answer that.

I want him to have the experience of a bunch of kids all coming to celebrate his birthday.  Would everyone invited, come?  Undoubtedly not.  Would some come just because it’s a party, and they are not yet so old that going to the party of someone not everyone wants to party with, is going to be held against them?  Probably.  Would that bother him?  Just yet, probably not enough to make it less worth trying.  Algernon‘s flowers haven’t been picked yet….there is still some time, some innocence, even for my painfully perceptive child.

I know what I’d like to do.  I’d like to use the park next door (and hope for compatible weather), which has a handy stone gazebo with picnic tables already under it, and a large, empty-except-for-one-tree, flat-bottomed bowl of grass below it.  I’d like Steffan and I to be there, so at worst one of us would have to excuse ourselves so we could take a kid over to our house for a bathroom run.  I’d like Ash’s Uncle A- to be there, so he could help take lots of pictures (which at this point Ash is possibly more obsessed with than I am).  I know we’ll never afford one of the giant inflatable castles, but I’d like to decorate the gazebo to be castle-ish (because there’s no way a party is happening in Ash’s bedroom), no doubt largely care of some cut cardboard, paint, cheap-o fabric, and creativity.  I could turn one of our chairs into a birthday boy throne.  I’d make thematic invitations myself, and invite guests to come dressed up if they want to.  I could make cheap tunics for the boys and princess hats for the girls, and Ash, well, he’s already got a pretty awesome costume, thanks to our RenFesting tradition, so switch things around and add an accessory or two just to make it special for his birthday, and he’d be good to go.  I could combine table wear, an activity and a party favor by getting plastic goblets from DollarTree and a bunch of stick-on rhinestones, and letting the kids decorate their own.  Ash has a black and white hobby horse from DollarTree that just needs to be stuck on a dowel rod or piece of PVC piping instead of the thin, broken plastic it’s on now, and I could get one of the blue unicorn ones from DollarTree and do the same with it….use some ribbon scraps and stuff I already have, to make fancy harnesses, and we’ve got mounts for jousting with pool noodles we could also get from DollarTree and just wind around with colored Duct Tape to make them a little less floppy and give them some trailing ribbons…  I could make a bad-guy knight out of painted cardboard to hang from the tree, and put score-zone lines on him so the kids would score points based on if/where they hit him with their lance.  I could make a cardboard dragon with an open mouth, and fireballs made from little rubber bouncy balls tied into some fabric scraps, and the kids could have a toss game.  There could be stick-the-kiss-on-the-frog-prince.  There could be a wizard freeze-dance game, or musical dragon-eggs, or whatever.  Whoever won each game could choose a small prize like a glow-dagger or glow-fairy-wand from DollarTree, and whoever got the most points overall could win a bigger prize, like one of those inflatable dragons I’ve seen on Amazon.com for a few bucks.  I could make strawberry lemonade to drink because it’s less scary than store-bought punch, and Ash would have to have pizza, of course….but I could make him a cool cake shaped like a shield or castle or dragon.  Or, perhaps, his aunt would do so, as she’s started a cupcake/cake business, and her nephew’s party should certainly make for decent trade-off advertising.  I haven’t asked her yet.  I haven’t talked with anyone about all this.

The fact is, even without booking a venue or a giant inflatable castle, even with a bunch of home-made props, silly games, and cheap favors….I know it’ll add up.  I know we wouldn’t be able to do it without my fund-raising.  We’re still trying to kill off debt, and all that.  We’re going to have to move again this summer.  There are….endless considerations.  Can I really even dare to try fund-raising just for THIS?  I’m not sure if it takes more or less chutzpah than trying to fund-raise for uber-expensive therapy stuff, or for the first vacation my family would take in Ash’s whole life, or for an eventual service animal, or for….who knows.  It’d take a lot less, sure.  But it also lasts one day, give or take the memories and some re-usable souvanirs and trappings.  Is it frivolous to want to be able to give him this, not even knowing how it would turn out?

If you were me, would you try?  How would you go about it?  If you were you, would you help me fund-raise for something like this?

I needed to push myself to work up the nerve to even ask THAT.  All things considered, there’s only about two months to work with.

 

 

 

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Bullying doesn’t have rules. Bullying is emotional, rules are logical.

January 26, 2012 By 2 Comments

I found this photo via an Advanced Google Image Search. I don't know who to credit for it, though. In the meantime...RAWR!

Some of you, who also know me from elsewhere, might remember a time earlier this year when I muttered, “I will not eviscerate a 6 year old girl….I will not eviscerate a 6 year old girl….I will not eviscerate…” to myself.  As it turns out, I will once again not be eviscerating her.

Really.

I promise.

…which, of course, doesn’t mean that I am not baring my teeth and growling deep in my throat while I say so.  Or that I am exaggerating just now.  Or that I have not, in the past, made 6′-something, 300lb men FLY backwards in their hurry to get away from me, by growling at them.

And that was before I had a kid.

First, let me back up (slowly) from my own snarling Mamma Bear instincts, and offer a little bit of context.

Lions.  Every two years or so, lion society gets a shake-up when mature males cross territory lines to challenge for dominance of a different pride.  (This can be otherwise thought of as, “Hey….instinct tells me that it’s bad for evolution if I inbreed too much with my own daughters and neices and granddaughters, so howzabout I come over and try clawing your entrails out and biting through your mane, and then get me some action with the gene pool on your side of the water hole?”  That is, however, besides my current point.)  Dominant males of any given pride put off this challenge to their rights to steal the lioness’ kills and father a bunch of cubs with them, by more or less loudly proclaiming, in lion-y ways, “I AM HERE.”  If you forget to mark the hours with a cry of, “If you can tell who is roaring at you, you’re too close to my territory,” or if the borders of said territory don’t reek freshly enough of your urine and feces, you’re just ASKING for some tail-swishing upstart to come and ruin your nap.  If you do, though, the upstarts are going to decide that maybe challenging you can wait until after a few more days of fun annoying the local hyena gang….and they are going to decide this before they ever get a look at how big and tough you seem to be, compared to them.

What the hell am I talking about?!

I’m talking about bullying, believe it or not.  Here’s the thing — whatever other excuses are found to target someone for bullying, a decent amount of the time, those excuses are never looked for if the potential target exudes enough confidence.  The potential target simply doesn’t register as such.  Again, this is not a “rule”….but it is certainly a trend.  My mind goes back to a particular kid I was in high school with who was scrawny, awkward-looking and stand-out smart, and who was also enough of an arrogant asshole to be one of the cool kids, despite that.  I can also think of a girl who was a gorgeous,rich, talented, hilarious misfit, but who radiated enough of her own conviction that she was a dork, that I would get asked why I wanted to be friends with her — and I was certainly not one of the cool kids, though I was asked this by the stray members of each social clique, that I inevitably was always at least casually friendly if not friends with, despite that.  As for myself, I had a long history of being the on-again-off-again target of various forms of bullying, which was attempted, just as inevitably, by other members of just about every social clique.  Had anyone asked me why this kept happening, I probably would’ve told them one of the things that easily came to mind, like my not being one of the pretty girls, or summering at the rich kid clubs, or being allowed to do X, Y or Z.  What retrospect figures it really boiled down to, though, was that it didn’t matter what I did or didn’t have going for me.  I exuded the expectation of being treated poorly.  Ask anyone who struggles to escape a pattern of getting into abusive relationships….insecurity is a like a potent pheromone for people who get a hard-on over making someone else feel bad about themselves, and it attracts their attention.

If there WAS a rule….if self-confidence really did give a person a sort of magic forcefield that bounces off all the haters….I wouldn’t be writing this post.  Not quite this post, anyway.  The thing is, Ash is and has always been, a remarkably secure, self-confident child.  Everyone remarks on this — strangers, friends, family, teachers, therapists, evaluators.  He’s not arrogant.  He’s not self-centered.  He just believes in everyone’s potential to be awesome, knows that others see it in him, and has learned to see it in himself (while always still pushing himself to get a closer look).  It’s not that we’ve overly sheltered him from exposure to a world in which not everyone has been preemptively set up to adore everyone else.  It’s not that we’ve never confronted him with knowledge of negative reactions he has, or might, evoke from people.  He can’t stand the thought of giving anyone a reason to feel bad about themselves, or about him, but he’s always been able to work through it, and come out the other side none the worse for wear, and just that little bit more aware.  The astoundingly few experiences he’s had with people he didn’t win over simply by being himself, have always confused him and shaken him slightly.  Try as he might to understand, he just can’t relate to people who DON’T find everyone interesting, and DON’T think everyone deserves care and concern, and another chance.  He doesn’t hold it against them, though.  He seems to think it’s an issue of momentary confusion, a rogue blip in the common sense of the universe as he sees it, and he never expects that anyone will — let alone more than once, and briefly — actually be OPPOSED to the idea of someone charming the pants off of them.

And that just makes it worse….that despite the fact that he exudes confidence, despite the fact that he’s a handsome little devil, and smart, and funny, and nice, and not yet showing signs of our financial situation, and not yet old enough that his being small especially stands out, and not beyond acting impish in the face of authority, and generally always being surrounded by friends….he’s still being targeted by bullies.  He’s being targeted by bullies, and it’s only just the beginning, and despite the after school specials and well-meaning books, there is only so much he can do about it, and only so much anyone else can do to prevent it.  And….he doesn’t understand that.  He is DIFFERENT.  He is ALWAYS going to be different.  And, no matter how good he might or might not ever get at hiding it, and no matter his perspective on wanting to, there are always going to be people who pick up on it, and pick on him for it.  No matter who he is, that’s who THEY are, and if they change, well, there will always be others.  That’s the way our advanced society works.

Even if his shit stinks strongly enough, someone is going to come along and decide it doesn’t stink RIGHT.

See?  I went back to the lion thing.  Sort of.  There is method to my madness.  Or at least, frayed mommy nerves.  Oh, just toss me some chocolate and keep reading.

I’m going to get to what actually happened, next, I swear.  I guess it’s just that the incident itself feels secondary to me, relative to what it means.

THE BULLYING BEGINS… (aka, what actually happened)

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Season’s Greetings!

December 21, 2011 By 8 Comments

Ash has always been excited when given a candy cane. This is the first year, however, that I believe he's actually tried licking one.

Here’s the deal: If I know you celebrate Christmas, I’ll wish you a Merry Christmas.  (And post Ash reading a story to you for Christmas Eve, too!)  If I know you celebrate Chanukah, I’ll wish you a Happy Hanukkah.  If I know you celebrate Yule, I’ll wish you a Blessed Yule.  If I know you celebrate Kwanzaa, I’ll wish you a Proud Kwanzaa because I’ve never noticed anyone settling on happy vs merry vs whatever else.  If I had remembered in time and I knew you celebrated Bodhi Day, I’d have wished you an Enlightened one of those.  (I think those are the only holidays being celebrated in December of this particular year, but if I’ve forgotten one, feel free to correct me.)  Now, if I don’t know or am too wobbly-brained to remember what you celebrate, OR if you’re one of my friends who just likes tradition and friendship and family and goodwill and presents and sparkly decorations and whathaveyou, without giving credit to any particular spiritual or natural event for the occasion — I’m gonna wish you happy holidays (which, since the word traces back to mean “Holy Days” is INclusive, not EXclusive) or season’s greetings, or Merry Happy Blessed Tra-La-La SmooshyLoveLaughterTime.  For some of the particularly frazzled among those I know, it’s “holiDAZE” and that’s just fine.  Overall, my guide in all this is respect, care, and occasionally humor.  My only request is that you offer me the same.  Wish me ANYTHING in love, and I’ll appreciate it.  I’m flexible like that.

No, really.  Don’t even bother asking what you “should” say to me.  Say whatever honestly feels to you that it expresses the best goodwill to me & mine.  For one thing, I’m spiritually eclectic.  I was raised by people with little religion and no spirituality, and was moved by that to make a lifetime study of various religions, philosophies, and spiritual traditions from around the world and through recorded time, many elements of which are woven together into the tapestry of my belief system.  I didn’t come out of it with a sense of knowing it all, I came out of it with a sense that it wouldn’t be right to feel I knew it all.  I also tend to feel comfortable sharing in any faith tradition which sits well with my personal morality, and the majority of people interacting with me assume I am of whatever faith they are….at least, until they suggest something like the fact that it is surely the only/best/true Way.  In the meantime, I’ve been to a decent variety of churches, temples, mosques and monasteries.  I’ve also meditated with Zen Monks, chanted with Native Americans and danced with “pagans”.  I’ve moved people to pray who never prayed before, and I’ve been cut off from friendships because I resisted evangelism.  I promise, I’m no scarier a person than I was before you knew this.

If I am talking with you and you wish to hear something in particular, feel free to remind me of what you celebrate.  In case it wasn’t clear yet — I won’t be offended, so long as you don’t sound offended, and will in fact be thrilled to accommodate your beliefs.  Have a long-running joke with friends about Festivus?  No problem, I’ll just smile wryly and look for the Superman somewhere behind you.  Just don’t expect me to only say to other people what I am saying to you, or suggest that I am disrespecting you by not doing so.

This is not ammunition in a “War against Christmas”.  This is why.  This is why, too.  I will, in fact, be celebrating Christmas with my family in a few days.  Yes, the Jesus part and everything.  Hey, he was a good guy.

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My autistic son considers his own future

December 9, 2011 By 2 Comments

Ash’s future….now that’s a loaded topic.  Forget living day to day.  Most of the time we live hour by hour, minute my minute….some days, living second by second isn’t at all an exaggeration.  With the depth of his sensory issues, let alone how they and the manifestations of his Autism are affected by even things as uncontrollable as the sky, even Ash can’t know what he’s going to be capable of, or not capable of — for better or worse — from one moment to the next.  That makes our parental job of actually PLANNING, just a touch more interesting.  Do you know what I’m usually doing until 3 or 4am?  Preparing for the morning that will be starting in 3-4 hours, and the 10 possible ways it is most likely to go, based on how the last few preceding hours of Ash’s awake time went.  Maybe he will be capable of startling eloquence.  Maybe he won’t be able to do more than make squeaky shrieking sounds and keep repeating whatever single word or short phrase his head has most recently become “stuck” on trying to process.  (Right now “forget” and “understand” are the words used, and misused, ad nauseum.)  Maybe he’ll be able to pick his own clothes and completely dress himself.  Maybe getting him dressed in the morning will resemble a “Moving People” skit from Whose Line Is It Anyway?  Perhaps he’ll be whining for help with everything, or desperately insistent on doing everything all by himself, regardless of how the preceding set of options fall.  Maybe he’ll maintain his sweetness, his gentleness and his infectious happiness regardless of what challenges the day and his brain throw at him.  Maybe he’ll be consumed by a burning frustration at feeling like he just can’t seem to get out of bed the “right” way, and before he’s made it out of his bedroom, he’ll already be unwittingly acting out scenes from horror movies he’s never seen.  Even the simplest of things ‘going smoothly’ usually takes preemptive excesses of psychological and environmental manipulation on my part, and if that’s required to get Ash through needing to wear galoshes TO school tomorrow but sneakers once AT school, how in hell can I plan for, oh, say, puberty?

All that is without getting into the “big” questions, like whether or not Ash will ever be able to have a romantic relationship (kindergarten crushes….literally….aside), perhaps even raise children some day.  Will he even be able to live independently, or should we keep working on getting out of medical debt and repairing our credit so we can buy a duplex townhouse and try to live forever, because the news — and what never makes it into the news — makes it too terrifying to even contemplate having to rely on anyone else for his responsible care?

Beyond all that, what does Ash want for his own future?  Regardless of neurological circumstances, one can only take just so seriously the claim of any six year old boy to his Mommy that she shouldn’t worry, for he will stay together with her forever and ever.

Brief tangent here…  When I was a little — and not so little — girl, and was asked what I wanted to be when I grew up, my answer was always, “Happy.”  Oh, if asked more specifically about career aspirations I could easily enough spout out one goal or another, but that was never my default and truly honest answer, if the question was more open-ended.  And, while it would have been foolish to get into explaining and expounding, my notion of what Happiness was likely to entail involved the defiantly optimistic ideal of having Love….love from others that I could believe in, and love for others that I didn’t have to second-guess.  Friendship, yes.  Romance.  Parenthood.  As my mother always said, I always made things more complicated.  ::wry smile::

While my dreams of what I wanted for myself in life were crafted from the harsh awareness of things I knew I most certainly did not want, Ash appears to take after me when it comes to the goals his mind instinctively leans towards, and yet….and all those who know Steffan and I will tell you it’s not so daring for me to claim it….Ash’s inspiration is, you might say, far more direct.  With his common failure to fit into stereotypes of Autism, Ash often enough expresses not just an expectation to, not just an interest in, but the desire to end up married and a parent.  “I’m too little to get married, but I need to grow up and get older so I can have a wedding,” Ash once said.  Why, so he can dance his pants off?  No.  “Because that means I’m supposed to found my love-match like you and Daddy.”  Nope, he doesn’t take for granted that it always happens.  After confirming that so-&-so and so-&-so are husband-and-wife or husband-and-husband (the combinations he personally knows), he’ll usually follow it up by asking me if the couple are, “Love-matches like you and Daddy and I.”  So, when he grows up, he can find his love-match and get married.  “And then I think I can be a Daddy, too.”  Oh, yes?  “Daddy, you are Mommy’s big love, and Mommy, you are Daddy’s big love too.  And I am your little love.  And we are all love-matches together in our family.  And so when I get bigger I can have a love-match and then it will be my big love and I will be big so I can be a Daddy so I will have a little love.”

□ Does the patient evince an interest in other people?  √

□ Does the patient develop emotional relationships?  √

□ Does the patient try to express his feelings?  √

□ Does the patient…

Yeah, screw that.  My child is autistic and he is totally into the idea of forming relationships with other people of distinct strengths and types.  Maybe that’ll change as he ages, as it might with any other child, but that’s the thing….“As it might be with any other child.”

In fact, he’s been expressing hopeful intentions of growing up to be a husband and father for longer than many of his typical peers have been telling people that they want to be a princess / astronaut / dinosaur rider / doctor / etc., and Ash is certainly no more ignorant of examples of jobs, fantastical or otherwise, than he is of examples of relationships.  Until now, however, he has never been able to answer the clichéd question of what he wants to be/do when he grows up.  If someone tried asking him, they generally got a somewhat blank stare and a reflexive so-long-as-I-smile-at-them-and-they-smile-back-it-will-all-be-good smile.  If they kept pressing and providing cues, he might get as far as telling them he’d be [one year older], or that he’d still be [his name or one of his nicknames].

You caught the, “Until now,” up there, though, right?  Mmm hmmm!  That’s right, Ash has, for the first time, considered, concluded, and expressed a desire to have a particular sort of job when he grows up!

“Mommy, when I grow up I can be a zoologist like Jarod Miller, because I love learning about animals and then I can always see them.”

You know what?  Aside from him needing to learn how to control his excited jitters and managing to move less erratically, I see no reason why he couldn’t rock at it.

 

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World Aids Day — are your children aware?

December 1, 2011 By 2 Comments

Image found here.

For about a quarter to a third of the world’s population (and that’s just an estimate of the actual Christians who celebrate Christmas), it’s, “Well, now we have no excuse not to get our butts in gear and prepare for Christmas” Day.  For the majority of people with Seasonal Affective Disorder, it’s, “Thank goodness there are only 20 more days until the Winter Solstice, and then we’ll start getting more daylight again” Day.  Both of those carry with them a certain amount of anxiety, and a certain amount of hope.  The same might be said for the formal assignment (by the World Health Organization, in 1988) of this date — World Aids Day.

Yeah, you heard me.  I’m talking about AIDS.  The sad thing is, that will still shock people.  It will also confuse some of them.  When I mentioned on Twitter earlier that I was going to be doing this feature, I started getting direct messages from people asking why I would focus on this kind of subject when my topic here is supposed to be “Special Needs Kids”.  Well, that’s one of the easier questions I’ve had to answer.  Maybe the reason has something to do with the fact that census data from 2007 shows 563 new cases of AIDS in children up to the age of 19, (in the United States and District of Colombia,) and 16,467 cumulative estimated cases for the same age range, between the recognized US outbreak of the viral epidemic in 1981, and 2007.  3,792 of those children were under the age of 13.  The vast majority of these children acquired HIV from their mothers during pregnancy, labor, delivery or breastfeeding, which rather dings the argument that a discussion about HIV and AIDS with or about children who have the disease necessitates immediate discussion of drug use, unprotected sex (and good grief, no, not just “gay sex”), etc. — though obviously, plenty of arguments can be made for (and there’s no avoiding the “against”, either, yes I know, I’m braced for your comments) considering discussions about those means of contracting the virus that can be controlled.  It’s true, children do not comprise a large percentage of AIDS cases, and, in fact, the numbers are decreasing.  During 2006 there were an estimated 28 pediatric AIDS diagnoses, compared to 195 in 1999 and 896 in 1992.  (The decline in pediatric AIDS incidence is associated with more HIV testing of pregnant women and the use of antiretroviral drugs such as zidovudine (AZT) by HIV-infected pregnant women and their newborn infants.) All the same, the numbers can’t be denied, and should not be ignored.

And, of course, those are just some numbers for children who have AIDS themselves.  (If you don’t think they count as special-needs kids, please think again.) As President Obama noted in his proclamation, “With an infection occurring every nine-and-a-half minutes in America, there are more than one million individuals estimated to be living with the disease in our country. Of those currently infected, one in five does not know they have the condition, and the majority of new infections are spread by people who are unaware of their own status. HIV/AIDS does not discriminate as it infiltrates neighborhoods and communities. Americans of any gender, age, ethnicity, income, or sexual orientation can and are contracting the disease.”  Guess what?  That means that even if your child doesn’t have the disease, they very well might know someone who does.  Directly or indirectly, our children are living with this disease.

Image pulled from this article.

And yet, while the United States is turning from fear towards respect when it comes to AIDS — with the Centers for Disease Control & Prevention reporting that the 1987 policy barring entry by HIV-positive visitors and immigrants will be overturned (effective early next year), according to President Obama, and that with the repeal of the ban, the International AIDS Society will hold the 2012 International AIDS Conference in Washington, D.C. — we’re still big fans of hiding when it comes to our children.  Did you hear the rumor about the world’s first HIV-positive Muppet?  Yeah, um….it’s not a rumor.  Introduced in 2002 in Takalani Sesame, the South African Sesame Street co-production, the character of Kami made the international news, and has since appeared at the United Nations UNICEF events, at the World Bank, and at the Peabody Awards.  She was interviewed by Katie Couric on NBC news, and starred in a commercial with Bill Clinton.  The yellow-furred, eternally-five-year-old monster has been named a UNICEF Ambassador and Champion for Children and has appeared in Takalani segments alongside, among others, Desmond Tutu and Nelson Mandela.  With a name derived from Kamogelo — which means “acceptance” or “welcome” in Setswana, Zulu, and Sesotho – the orphaned Kami, (who is not only HIV-positive but lost her mother to HIV/AIDS,) acts as a strong role model in South Africa, providing hope for 28,000 HIV-positive children and 1.4 million orphans of the disease.  She deals with the insecurities related to acceptance, she talks about coping and loss, and she teaches about the disease in age-relevant ways, like showing that it’s ok to hug someone that has HIV, without fear.  Sounds pretty threatening, huh?

Besides, the USA-based Sesame Street’s 40 years on PBS, has never really pulled a lot of punches.  They have tackled sensitive subjects such as death, divorce, pregnancy and childbirth, lying, stealing, racism, and gender stereotyping. (In some countries’ Henson co-productions of the show, difficult and painful political situations, even including the bloody conflict between Israel and Palestine, have also been depicted in an age-appropriate manner.) So when Kami was reportedly originally presented by Joel Schneider at the 14th International AIDS Conference in Barcelona, Spain in 2002, media reports at that time gave many the impression that this character was proposed for the American version of the program.  I mean, after all, we do have those children dealing with HIV/AIDS here.  But no.  Nevermind that when you’re talking about a communicable disease, awareness….for which actual TALKING helps….can make a monumental difference, both in terms of slowing the spread of the disease, and in terms of improving the quality of life of those who already are touched by it.  This subject was still too taboo, too inappropriate for American children.  Sparks flew from conservatives, controversy flared, and Republican congressmen Billy Tauzin, Chip Pickering, Fred Upton, Joe Barton, Richard Burr and Cliff Stearns cautioned PBS against introducing similarly-affected Muppets to an American audience, just….you know….reminding PBS that Congress could withhold funding.  And so it is that although Kami has made appearances in the United States (where her character is performed by Fran Brill), she has yet to incarnate in the American production of Sesame Street.  In fact, although there are versions of the program in over 140 countries, South Africa’s remains the only one to feature an HIV-positive character.

Kami’s been in the American awareness since 2002, people.  HIV/AIDS has been something we couldn’t ignore here since 1981.  How long will it take us to teach our children about this?  How long before they learn that it’s ok to have a friend with this special need, too?

 

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