You are currently browsing the tag archive for the ‘autism’ tag.

Dear Mom and Brandon

I am terribly sorry I made you mad. Its just that I don’t like that chore. Anyway I am probaly not going to argue next time but I still don’t like picking up dog poop. I hope you will at least get over what I did today and just remember I say this only once tomorrow is a new day just like heaven is and a new life. Oh and two more things use the money I give you for something you want or use it with other money and two solve this riddle so I at least don’t have to be yelled at.

riddle: what do you call a crazy man?

thank you

Jacoby [middle][last]

aka troublemaker

P.S. I will be in my room if you need me but take you time on this letter

That’s what Jack would like the name of his biopic to be someday. I’m down with it.

We watched Temple Grandin last night, and there’s no real clever or undramatic way to say that I pretty much cried from beginning to end. Little rivulets of wet just slid down my cheeks, whether my eyes were wide as I calmly watched or I was doing my involuntary mouth-scrunched-to-the-side attempt to stop from launching into full-on ugly cry. I think it was a little disconcerting to Brandon, since he kept asking why I was crying now, and I just kept shaking my head and saying because. Which is the most helpful kind of answer, I know.

And it wasn’t necessarily that I was overcome with sadness, though I’d be lying if that didn’t have a component. I think it was simply the recognition I was seeing, over and over, that hit me so hard. It was really hard to see all of the mannerisms you stereotype for Asperger, being so subtly and incredibly acted as if the story was about my son and not someone else. The familiarity of Grandin/Danes’s stims and actions (reactions) were so familiar to me it was shocking, though I suppose in fairness I’m not sure why. Probably because Jack is Jack to me, and I (obviously) forget that some of his behavior is not personal or individual, but tied into his hard wiring. Which even if these behaviors are not always.. mmm.. awesome, it’s simply hard to accept that once again, my sweet monkey is at the mercy of something bigger than he.

More than that is the idea that if Jack views his world the way the movie suggests, he really is the most resilient little kid I’ve ever known. All kids are resilient, sure, but I don’t know if I could continue to truck along like he does with that much sensory overload and confusion. And I know he trucks along because he doesn’t know that this isn’t life for everyone, but that ignorance itself makes me sad because it simply hurts me to think that there’s no foolproof or guaranteed way to protect or even help him navigate this. And that’s so maudlin and dramatic, I know, but fuck if it isn’t actually true. He told me a few weeks ago that he knows his brain is different, and that he has ‘storms’ in his brain when he feels himself getting upset, and the thunder and the lightning get to be too much and that’s when he needs a break and he KNOWS THIS and he’s ONLY SEVEN and it simply hurts me that it hurts him.

And what if this is what his life will be like? Always being unable to read people or situations, cringing when he hears the hand dryers in a public bathroom or flinching at automatic doors? He does those things, and I hate it for him. He’s grown so much since he was little, but do I really think he’ll ever just ‘catch up’? I don’t know. I still think so. Maybe that’s denial.

And I don’t pity him as if I think he will never be successful or will live a life less fulfilling than mine; I have the wisdom to not presume other people’s happiness. But what makes me sad is knowing that he struggles far more than my other child, and his struggles don’t always make him wiser or stronger –  they’re just things he learns to adapt to because he wants to be accepted. I see him wanting to understand the game, but not knowing how to ever play, because the rules elude him. How tiring must that be? Kid sleeps like a rock; I would, too.

So yeah. I don’t feel this degree of sad very often, because it’s not helpful. I focus on the wonderful things about him because he deserves it and I agree with the movie’s motif of different, but not less. But regardless of why or how it’s there, the fact remains that my child functions in a way that makes it harder for him, and my inability to ease or protect him like any worthy supermom could, sucks. Period.

Where I listened as Lazlo lazily declared that Asperger Syndrome is made up, and just an excuse for dorks to be dorks, unabashedly.

To which my question was what syndrome does he have to be an asshole, unabashedly, other than Ratings Whore?

Coach: “Jack go stand on the field by the ref.”

Jack: “OK, what’s a ref?”

He is not good at all, people. Like, at all.

But I truly can’t explain how proud I am that that has nothing to do with autism, and everything to do with his being related to me.

Short NPR article discussing autism dx and parental levels of education.  Seems obvious to have to state that the correlation/causation caveat is (in part) due to educated parents knowing to even seek out said autism dx, but I also don’t think their little maps can be written off quite so tidily. Because although I still every once in a while see articles on epigenetics and such, I have to wonder if eventually autism will be posited more convincingly as an evolutionary shift. It just makes sense to me to think that our technological growth is possibly (simply) becoming matched neurologically. And I wish I could find where I saw the stat that said people with Asperger were twice as likely to have fathers and grandfathers as engineers. I mean, come on. That’s pretty compelling if not full-on fascinating.

All the more reason why I personally think eugenics is reprehensible. Whatever.

More importantly, I wish people would stop polarizing into neurodiverse/curebie camps, because NOTHING IS THAT SIMPLE, and maybe it would slow people down from doing things out of desperation. Massive chelating of metals in the brain and restrictive diets and injections and everything else that scared parents are funneling into their children? It needs to slow down. Not because I’m against alternative medicine in the least. But because I’ve been that panicked parent, and at this point I want to have on the table the idea that perhaps if your child improves from whatever impaired state of functioning they were in, maybe they weren’t ever actually autistic in the first place – but merely (if merely can be used respectfully) just bodily toxic. And if that could be acknowledged as a possibility, surely it would be easier to mitigate the eternal fear surrounding autism. …Which would obviously foster better acceptance. …And also lessen the obsession to find a causation. I dunno. Call me crazy.

In the end I know I don’t have any more actual facts than probably anyone else with a strong view, professional or otherwise. But that’s pretty interesting, too. And worth noting.

So go Cats woot woot let’s all go crazy

and yay! for fellow (well, sort of fellow – I was English but I WROTE for the paper and all of my FRIENDS are J-schoolers so whatever) Kedzien Sam and his awesome, awesome.. awesome story – thanks BHS for the linky

and the world might have actually stopped spinning for just a wee moment when I recently realized that I can actually like a Weezer song (no really, I serious) and, in fact, secretly really really dig this one – though I still think their hubris is obnoxious so don’t get too excited

and happy Thursday everyone.

So this morning as the kids and I trekked across KC on our thrice-weekly school vs home commute, Jack all of the sudden burst into tears. I did that swerving-thing where you spin around in your seat and try to gauge based on sight if he’s just upset or if he’s bleeding or on fire or something. He had his head tipped back as far into his hood as he could, and tears were just streaming down his face. When I finally got him to answer my pleas for an explanation he said he wanted to know why Lucky had died. And where he had gone. And who took him there. And what he did there. And if his mom was sad. And if that meant that great-grandpa Woody or Grandpa Great were going to go, too. And last of all if heaven was on the moon.

Jesus Christ, I hadn’t even started drinking my coffee yet.

So I scrambled (because in the end all parents know that most life-defining moments sprung on them are flat-out scrambling), and quickly tried to weigh validating his sadness with how much time we could really spend on this if he had to go to school. Also up there is the fact that validating Jack’s anxieties too much might have him spin out completely, and he was already having one hellaciously kind of existential crisis for 7:40 in the morning.

I told him that Lucky had been sick and old, but that he was happy now.  “With Nana’s dog, right?”  Yes.  “Is he with God?”  Ummm… do you think so?  “Yes.”  OK, then he is.  “Are they in heaven?”  Sure.  “What’s God doing with him?”

“Feeding him treats”, Lorelei said, completely unfazed and never turning from the window.

He told me that he knew he needed to calm down before school, but that ‘the tears keep coming out of my eyes’. I pulled over so I could give him a proper hug before dropping him off, but he just seemed miserable; it’s a sad truth that platitudes really are worthless when someone is grieving. And I really wish I knew what had sparked it. My thought is a dream he might have had, with that sucker punch realization thinking about it later that the details are either totally true or completely the opposite of whatever you’d dreamt. Who knows. He couldn’t tell me. I mean, he didn’t even realize Lucky was even missing from the house until a Wii Fit pet roundup produced an AWOL member two weeks ago, two months after Lucky had died. Jack’s mind fascinates me.

In the end he seemed to find some peace when he declared he wanted to write Lucky a letter to send to him in heaven (on the moon). To tell Lucky that he was a good cat, even though he bit sometimes, and that we all hope he feels better from his sickness by taking lots of naps. I told Jack that that was a great idea, and that I loved him as much as anyone could possibly ever love another person.

And that is all I can do.

Don’t EVER let anyone you know assume that all autistics are unable to feel empathy. Ever.

We celebrated Christmas this weekend with the kids because by the time I get them Friday afternoon, they are going to be CRACKED OUT on events where they open eleventyfourteen gifts. (We told them Santa sent our presents early because we don’t have a fireplace.) And though Jack didn’t get his Death Star (from me, anyway), he did get a Venator-class Republic Attack Cruiser and Vader’s Tie Fighter, which took 6 and 2 hours, respectively, to build. The Attack Cruiser was only just finished at midnight, but Jack promptly woke up this morning and asked if we could dismantle it and start over.

Wherein my attachment parenting failed royally when I essentially gave him a big hell no.

So OK, look. This crappy phone picture doesn’t do justice to this beastly thing. (Click on it.)  I swear everyone would be super impressed at its largeness if you saw it in person. And at almost 1200 pieces, I can see why people put these together just to put them on a shelf – because they are a helluva lot more painstaking than I ever remembered from my Lego days of square houses and shutters on the windows.

All of which doesn’t mean that I won’t be OK with Jack dismantling it at some point; it’s soothing for him, and, after all, it’s his toy. But until he is able to do it all by himself – or until at the very least, say, a week passes, I just can’t do it.

I’ve never been wholly down with the whole Santa thing, the least of which because I think the materialism of the holiday is indoctrinated so concretely (not to mention so early) that way. I try – like most parents I know – to teach my kids to be kind, generous people. But the holidays just seem so danged commercialized, and it’s hard to keep focus. I know there are plenty of options for charity and selflessness, but it still often seems to be so, well, tax deductive, and I’m not so sure we haven’t bastardized the entire point by channeling it to a one-month period in the whole year. People need clothing in June, as well, as far as I can see. And for a year or two I tried to muster up the whole Jesus/reason/season vs Santa=satan anagram, but like I’ve since admitted, in the end that indoctrination wasn’t my bag either.

Especially because I could take Jack to church to learn about baby Jesus and then promptly go into the lobby to sit on Santa’s lap.

But I digress.

The truth is I’ve been secretly stoked in the past that Lo was too young, and Jack just never seemed to care, about Santa or the whole production of Christmas. We ran around like chickens with our heads cut off trying to appease family expectations, but overall we didn’t do nearly as much as most Americans seem to during this time. The kids got a shitton of gifts, and many hours were consequently spent donating old toys, but to date they really hadn’t totally lost their minds about wanting things. Mostly because they have no real idea of want.

But my blessedly procrastinated reprieve is over, and at four and six the kids have now fully embraced that bountiful benefactor of booty. No pretense for goodwill or good behavior, Christmas has simply and unabashedly become the ticket to the goods. Jack wants a Lego set that happens to be FOUR HUNDRED DOLLARS. He has no idea of what the cost really means, he just wants it because he thinks it’s cool. But ole St. Nick (and Toys R Us) have full-on convinced my sweetly gullible -and literal- child that all he has to do is write it down on the list and voila! it will be produced.

Because that’s what SANTA DOES, RIGHT?

So what do I do when he’s upset I can’t get him a FOUR HUNDRED DOLLAR Lego set? Tell him it was because he wasn’t good enough? That there was a shortage of plastic up North? I have no idea. But we’ll figure it out because we always do.  And he’ll survive because he’s a champ.

And please don’t fully misunderstand me, I’m not really on the train to Cynicalville. I do actually like the holiday season because I get to see my family and friends more, and that always makes me happy. But it’s a hard balance for me as a mother, and I want to do better for my kids.

[I also want a law that declares Christmas music illegal until December 20th. Especially that creepy making-out-with-Santa-song. I mean really, how many confusing messages can we possibly send this time of year?! But I digress again.]

So because our ridonkulously overwhelming and draining year is over, I resolve to expand my kids’ horizons and attempt to dismantle the materialism they swim in so comfortably. Or at least temper it with some of the kindness and giving I’ve seen them possess in large quantities. I look forward to it – it will be good for all of us. And now that I’ve also purged my bah humbuggery for the season, I can happily post the letters the kids wrote today, because all other tiring issues aside, I think they’re hysterical, and the kids will never know they are skipping the mailbox and going into my treasure box.

Welcome to parenting, right?

.

Dear santa.

I want for chrismrs the Legos set 7627 Indiana Jones and the Temple of the Crystal Skull. I would also want the Lego Indiana Jones 2 video game. I want the Legos Star Wars Death Star I want the Ewok set.

Love Jacoby

**********************

Dear Santa,

I would like a dolly to name Lorelei please. And also cute little puppy dogs. And a baby pig for Christmas. And I want a baby giraffe and a baby puppy dog and a little baby giraffe. So I want that. Please. I want to have a baby puppy dog. And a baby ricenocerous. And a bottle for the baby rosernous.

I love you and thank you,

Lorelei Elizabeth

.

Happy Holidays, friends. 😉

(Was introduced to BellX1 last night and I really like the simplicity of their song “Light Catches Your Face”.)

Parenting/Autism:

Jack and Lorelei’s swimming lessons are going AMAZINGLY. It’s shocking to me to see my kid zoom around the pool under water like an otter. It’s truly that feeling of my heart hurting with pride for him. Aside from my nightmares of drowning being subdued, it’s just great to see him succeed in an arena that he was so far behind in.

Jack’s teacher has experience with RDI, and has given me the number of someone in Chicago to call to see about finding someone in KC. My cursory refresher on the method makes me think it could possibly be beneficial, yet I’m obviously feeling reticent because I still haven’t called and I’m not sure why. Maybe because he’s doing wonderfully and I don’t want to go through the drain that therapies like that can do to expectation and hope? Or because I’m gun-shy to shell out the money after being thoroughly swindled by that guy in the DAN! program? Not sure. Navigating the world of autism sucks.

Took Jack to the doctor today. His cough was just some inflammation leftover from whatever cold he had recently, and after the doc gave me an inhaler to soothe the lining it was voila, cough-be-gone. I feel furthering contentment with my choices regarding health and my kids; my instincts continue to work, and I’m proud of my parenting.

Divorce/Emotions:

It will be final next week, and I think there’s more peace than people would think (though the point is that no one outside of it could know, so opinions altogether really in theory shouldn’t exist). We’re both dating, and our communication is still good. It took so much longer than I ever would have thought possible, but again, I think it was for the best as far as transitions for everyone.

And the thing is, I had talked to Jon months ago about permission to flesh out my feelings on here, but I’ve found since then that I just don’t have the desire, and in fact it feels like feeding some stupid gossip beast to do so. I’ve always been pretty candid about my thoughts, but I’ve changed a lot this last year, and though I know there is at least one person out there who reads this hoping for a kernel of information, the truth is that at this point, if we’re not friends enough that you would already know, you don’t need to. I don’t even say that snarkily. I’m just done with my life being the fodder for bored people.

I’m happy, I think Jon’s happy, the kids are more loved now than ever before – we’re doing fine, despite that the idea might shatter preconceptions of divorce.

Religion/People Who Suck:

Saw Bill Maher’s Religulous last week. My disdain for his arrogance didn’t wane with this, but I learned some history about the Egyptian religion (namely Horus?) and the coincidences of Christianity. I find it… disturbing that I had never learned this before. It appears to discredit a lot of the Christian tenets, and I think it should be researched by anyone claiming to be a Christian, not only to strengthen faith, but also as knowledge to arm yourself against a conversation with.. oh I don’t know.. a skeptic like me. Similar denunciations were found in the barely functional, unabashedly-conspiracy theoried ‘documentary’ Zeitgeist, and I’d be lying if I said I didn’t feel like a fool for having had the wool pulled over my eyes for so many years.

Thing is, I’m sure they connected some dots for drama, but most of this you couldn’t have made up. I mean, this is just simple history, but either I’ve never had that chapter in school, or it’s just not part of the teachings in the MULTIPLE DENOMINATIONS I’ve attended through the years. And I tell you what, but I’m basically done with organized religion. I’ve been leaning toward that for a while now, but after this last year and the things that have been said to me.. blerg.. I’m just done. Some of the meanest people I’ve ever met were Christians, and combining that with my own research on supercessionism and general irrefutable hypocrisies, and I’m just not comfortable anymore subscribing to something I think is at best flawed and at worst mythical.

So. Ok. Now that that’s out, let me amend to say I know I sound all types of dramatic, but I’m really not intending to. I’m just finally having the courage to say out loud what I’ve doubted in my mind for a long time. And even after that verbal diarrhea I’ll say that I feel agnostic about the whole subject. I don’t know what is or isn’t out there, and if in three years I’m somewhere else (or back), so be it. Shrug.

And… that’s all the semi-heavy stuff for today, I gotta clean. I’ve been craving more stimulating conversation lately, so if anything I’ve mentioned sparks a thought, please (please) feel free to comment (anonymously or otherwise), even if you disagree with what I’ve said. My commitment to the blog has changed as the catharsis of it has changed, and I’m leaning toward something that isn’t just simple updates. More topically-based, maybe? I dunno. If it doesn’t work I’ll go back to status-commenting on FB, but I’d like to see.

Let the wild rumpus start, and all that.

xoxo

But I hope whoever used that search term to land here found what they needed anyway.

I swear I had full intentions to post something coherent today; I even tried to set aside time this week to do it. But I think this will be if not an epic fail, at least a substantial one. I’m sorry. I’ve got myself a tidy little cold, and the only positive thing about it is that being this stuffed up, the acoustics in my head when I sing are uhhmaaazing. Other than that I’m drinking vitamin C-laced hot water like crazy, and walking around in a tired fog.

Let’s see.. Jack and Lorelei started swim lessons last week. The gal who is teaching them is an older Jewish (I’m guessing) ex-New Yawker (pretty sure about this one) who apparently used to run an autism program somewhere. Whatever, she’s hysterical and the best teacher for my particular knuckleheads. She’s very (on par with the above-mentioned stereotypes) no-nonsense, and you could tell she was smitten with Jack’s eagerness, which, if you remember from last year, is a tremendous 180. I’m pretty stoked.

I’m also stoked because I’m headed on over to Colorado next weekend with the kids and my mom and sister for a short trip and SWEET JEEBUS I CAN’T TELL YOU HOW MUCH I NEED THIS.

In exciting news, in a few weeks I’ll be moving into the little blue house that sits next door to the house I work out of! My boss’s brother owns the house (but lives in CA), and is giving me a pretty sweet deal on rent. I’m so excited to do this I am almost unable to verbalize it. Really. That big. So if you’re free any weekend in the next couple months, let me know. Best of all I get my beloved, cantankerous old-man cat, Lucky, back. That grumpy old goat has been with me for almost 12 years, and I miss him something fierce. I might bring that stupid Oscar too, but I think it’s funny hearing the stories Jon tells me about him knocking over the Britta pitcher at night. (Heh. I kid, I’ll see if I can bring them both.)

[So, in an ADD look-a-squirrel sidenote, I’ve been singing this song non-stop for a few weeks now. It’s Band of Horses – “The Funeral”, and I was convinced it was a side/new project from the lead singer of Sunny Day Real Estate, but it’s not. I’m curious if anyone else thinks they sound the same, though.]

Hmm… Took the kids to the movie Up this weekend and it was.. erm.. disjointed. Odd, mostly. Predictably sweet because it was Pixar, with one particularly sad part, but meh overall. Ironic since they opened with a montage of all the cool movies they’ve made <<scratches head>>. Moving on to television, I’m officially kind of embarrassed to admit that I’ve been watching the first and second seasons of Friday Night Lights. It’s so soap operaish, with every conceivable after-school special theme possible. First season alone they dealt with underage drinking, underage sex, parapalegics, steroids, rape, infidelity, deadbeat dads, deadbeat moms, Alzheimers and football in Texas, of course. But like a fool, I keep watching. Shrug.

(I’m also reading the book  The Stone Diaries for my book club, so that renews some brain cells, right?)

And, I think that just about sums up everything I could think to talk about at the moment, my brain now officially hurts. But as a last appeal, if you help me move I’ll give you some of my totally-stolen-from-Hippy-Chick spaghetti sauce, because it’s da bomb.

IMG_0037

Have a great week, everyone.

1. Welcome, Spring. And thank you for bringing my migraines back. I won’t take drugs for childbirth, but I’ll pop pain relievers like Tic Tacs every year ’bout now. It’s a good thing I can wear hats to my job, b/c I don’t have a C-clamp big enough, and my Royals cap is the closest I can get to that feeling of wanting to squeeze my temples until my eyeballs pop out.

2. My friend Kyle shared this article about auties and degrees of savantism/genius, and though I read it observationally, it still reminded me of just how freaking proud I am of my little stinker. He’ll be six this weekend, and once again I’m amazed by how hard he works to learn and understand and adapt. Man I love that kid something fierce.

3. On principle I’m right-clicking the hell out of this PC currently. I work with Macs all day long, and sometimes their functionality totally blows.

4. Totally digging this song by Johan Johannsson (whose name still sounds as lame in another language as it would if I’d written the English version John Johnson) called Fordlandia. I would like to use it in a documentary someday. It’s a super long song, so give it a minute to build.  So pretty.

5. Speaking of functionality, I saw one of those Easy Rider bikes today, and I legitimately don’t get why the handlebars are built like that. How does that not make your arms ache? I can’t imagine driving cross-country on one of those. What am I missing?

6. I have a sweet couple due in a month and I’m super excited. Births and the miracles within are incomparable, and I could use some rekindling of my faith in humanity lately.

And that’s all I can think of for now. I was going to launch into a been-brewing rant, but my head just simply hurts, and I don’t have the clarity I’ll need. Maybe I’ll try to come back later tonight.

Hope your worlds are well, friends. Feel free to respond to the random post with random thoughts; I’ve been missing a few of you lately.  😉

1. Jack is ebbing again, in that he’s being a TOTAL PAIN IN MY ASS the last few days. I love him with a ferocity I’ve never known was possible – I know I’ve mentioned that – but he is the single most contrary human I’ve ever had the pleasure of spending every waking moment with. He argues when he wants something. He argues when he doesn’t want something. He argues if he feels something is unjust or unfun or just for fun.

He argues when he agrees with you. I’m really not kidding.

And it’s hard, because I know he’s not even always unhappy when he does it. Sure, he reacts to the stress he senses around him, but I think in part it’s his natural personality from.. erm.. grandparental bloodlines, and also as residual habit from when he first was navigating social interaction altogether. He is not a natural cuddler, but wants attention (as everyone does) so pressing everyone’s buttons around him ensures a modicum of it. I get it.

Regardless, he’s driving me nuts and I’m not in an awesome place with my autism parenting right now. It will pass, like every phase has, but one of us might not make it out unscathed from this one, that’s all I’m sayin’..

2. Lo has discovered the joys of whining. To which I say really, karma? REALLY?

3. I was shown an article today about a local newscaster’s wife being paralyzed by the flu vaccine – and the subsequent trial in vaccine court. This one’s particularly fascinating to me as someone who has such an aversion to the propaganda every year, it’s nauseating.

4.  Here’s a follow-up article telling that the Neo-Nazi family has had their children taken away by social services. I know we all had a nice pat-on-our-back rant about why they probably are d-bags, but I sincerely hope those kids needed to be yanked for legitimate reasons, and not because of the limelight they were in. Three and under. Oy. That’s so very little to be away from their parents, it breaks my heart.

5.  Saw Gran Torino last weekend. Hmm.  It was on many people’s Best Of lists, and my friend Justin really liked it, so I’ll just say I must have missed something. .. Both times I watched it.

6. My back is at about 90% at this point, which is relieving. Now I just need to go back to the gym, because despite herculean efforts to not eat the bagel with cream cheese that’s calling to me, the scale is reflecting my absence.

7.  It’s 2°.  Four hours ago it was 1°.  Toasty!

Twitterpated

Lurkers

  • 80,116 hits