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Monday, June 25, 2007
Expensive Flea BagsMy youngest son and I enjoy driving down to the nearest big-box pet stores each weekend and seeing the caged animals up for adoption. Particularly, we like the kittens.
Every time we go, my son asks if we can get a cat. I ask how much the adoption fee is, and it's invariably $85 or more.
This past weekend, they wanted $85, and the kittens had mucus-y eyes and visible fleas on their kitten-stomachs. Give me a break. The county shelter is selling cats two-for-$55 right now. I know what's up with these little non-profits showing up at Petco and PetsMart. They're just old women who like cats, and they're running 501c3s that will let them write off the cat food while "fostering" any old flea-ridden, stanky, meow-box they can find. The cats cost so much because these cat ladies don't want to get rid of them.
And I don't blame them. When I get older and my kids have all moved away, I'm totally opening a "no-kill shelter" called Miss Kitty's Pitter Paws Sanctuary Haven, and that'll be my excuse to pet mangy cats all day long. (Because I like cats. Get it? I'm being sarcastic, but not really.)
Can't we all just get along? While flapping our hands?
(Some of you may remember that one of my children was recently, formally diagnosed with Asperger's Syndrome, which is a form of autism.)
So I don't know what the hell I was thinking, trying to hook up with the "autism community" online. No, wait -- I do know. I was thinking, "Oh, hey, maybe I can meet local parents of kids with Asperger's, and my son Dallas can meet another 12-year-old Aspergers kid who also likes video games, Roombas, and energy-efficient vehicles. And they can hang out on weekends without anyone telling them they act weird or talk weird. Yay!"
But I was completely delusional on that front, because that's not what the online autism community is about. Nope. It's not really a community at all, but a bunch of splintered factions, each of which pursues its own cause. Here are the separate causes, as far as I've been able to gather:
1. The curebies. Curebies are people who believe that autism has some environmental cause, often one (such as vaccinations or the mercury in our tuna) that might lead to a huge, class-action lawsuit. They get online and talk about all the stuff they're spending money on to cure their kids, and how they're getting other people to pay for it.
2. The anti-curebies hate the curebies, and they're very vigilant about it. Like, if you go on their forum and say, "Oh, hi, you guys. Y'all seem cool. I'm looking for a playmate for my son, who is really good at math and likes Roombas," they might say something like, "Oh my god! How dare you insinuate that non-savant ASD kids aren't as GOOD as your kid, and need to be chelated into what passes for normalcy among you stupid, rude, hypocritical NTs!!!!! Leave our forum immediately, curebie! We're trying to talk about American Idol!"
3. Embittered adults with autism. These are the people who make me want to say, "Dude, I'm sorry that your parents were ashamed of you and made you undergo chelation and biofeedback... but could you please not call me a stupid, rude, hypocritical NT? At least not where I can read you saying it? You don't even know me. I'm here trying to get help for my kid." The worst is when they're abusive to NTs, then say they can't help it because they have autism. Hello -- if I can teach my son not to call people names, I think your mom should've taught you, too.
4. There are the "autism parents," who wage daily battles to force everyone in the world to treat their children with respect. Or, if not actual respect, then with special consideration born of fear of lawsuits, maybe. Some of these autism parents have kids with more than just autism, though. "Hi. My name's AspieMommy, and I'm mommy to Darren, 14, who is ASD, OCD, BpD, and Tourettes; Shelly, 8, who is PDD, OCD, OPP, and GGG; and little Wendell, 1 and a half, ASD, PCP, TNT, and EGBDF!" A lot of times, I notice people identifying themselves this way and then asking forum strangers for help. "Can I get a ride to the support group? Anyone want to form a playgroup and/or babysit? Can I bum a cigarrette?" I have to wonder if some of them are real. What's the acronym for Munchausen?
A subset of the autism parents are the autism parents who also have autism, themselves. I can't compete with that, I guess. I mean, they make that fact pretty clear.
5. The biggest factions of all? The political ones. The "movement" people. Every autism organization in America, it seems, hates every other autism organization in America. Every member of Factions 1 through 4 above seems invested in a giant competition for the leadership of "the movement." For instance, the adults with autism think they should run their own movement. Which makes sense to me... until they start hating on the parents of kids with autism, saying those parents can't really advocate for their own children, since they themselves don't have autism. They all have blogs, and they all complain about what's fair, and which blog should be the leader, and how unworthy blogs shouldn't have as many readers, and blah blah blah popularity contest disguised as real discourse.
6. Then we have the celebrity autism parents, and then the celebrities who've played autistic characters, and they're throwing in their two cents for this organization or the other. And then the celebrites who don't want to admit their kids have autism, because Scientology thinks that's a sin...
And, oh my God. Can I please just meet someone whose autistic kid might want to play with mine, without all the bullshit?
No, apparently not. What was I expecting from the freaking Internets, huh? Okay, fine. We'll be at home, playing video games and reading articles about the High Wire, the car of the future, which my son happens to know all about, if anybody out there is interested.
Good Books I Wish You Would Read
First of all, please, please read The Curious Incident of the Dog in the Night-Time by Thom Haddon. If you've already read it, press it on others. Not only will it help you to understand what some autistic peeps go through on a daily basis, it's also a damned good book. Seriously. It made me cry, it was so awesome. And it's on a lot of high-school reading lists, so get your kids to read it, too.
The other book I recently read and enjoyed was Things You Should Know, a story collection by A.M. Homes. Yes, I know that I've told some of you that A.M. Homes scares me, and I'll never read stuff by her again. But this one's safe. It contains almost nothing about child abuse. You can read it at night without worrying about monsters coming to kill you. And the price of the book is worth it for the very last story alone. Teaser: It's about Nancy Reagan, and you will both laugh and cry.
That's all for this section. Besides those two, I've been reading a lot of non-fiction, which isn't worth linking to unless you, like me, are weirdly obsessed with bead crocheting or Christmas crafts. Also, I tried to read a novel that was highly recommended by a lot of book-bloggers, but I couldn't get past the first two chapters. I won't name it, because there's no need to be mean. I'll just say that, by the end of Chapter 2, I was like, "I get it! You're drunk, and you like to drink, and you black out all the time because you drink so much! I don't care!" 'Cause, seriously, I didn't.
Someone turned us on to a local gelato place.
And my life will never be the same.
An All-New Way Not to Care What Others Think
Back to the Asperger's thing. I think I mentioned in an earlier post that my son is experiencing an intensifying of his symptoms, now that he's embarked on the magical journey that is puberty. One of his more noticeable symptoms is the tic'ing. (Ticking? Ticcing? He has tics.)
When he was very tiny, he flapped his hands, which is a very common tic for autistic peoples. He flapped for years, until people in his family made enough jokes about it to persuade him to stop.
Then, he started clearing his throat, instead. And, I wish to God I could go back in a time machine and realize that the throat-clearing was an actualy tic, and not just a bad habit, like boys spitting out the windows of their cars. Because I have to say that I'm probably the one that made him stop the throat-clearing, with my constant nagging, because hearing it was driving me crazy.
So, now, he doesn't flap or clear his throat. He does something silent, but very noticeable, involving his head, his face, and his hands. Sometimes his arms in their entirety. I've been struggling really hard with the compulsion to control his tic. Other people tell me, "Dallas is doing that thing again. It's getting worse." And I whisper, "Shh. Just let him." But it kills me. I admit it - sometimes I really want to say, "Dallas, could you maybe flap your hands, instead?" No... let's be very honest, here. I have said that to him. But he can't flap his hands instead, and he can't go back to clearing his throat. The tics are involuntary. He can't not do them. And, it's not like they bother me, on their own. But I imagine him doing it at school, or out in public, and that people will stare or even make fun of him. And it kills me. I worry for him. I can't help it.
And that's not all... Lately, he seems to get upset more easily, and therefore he prefers to spend more and more time alone. That's not always possible, though. Social obligations do oblige us all sometimes. For instance, over the weekend, we went to a family dinner at a local restaurant. It was a belated Father's Day celebration, with my dad and my youngest brother and his family. Normally Dallas passes on family dinners, but this time he had no choice.
As always, I prepped all three of my kids ahead of time. I explained what we'd do, with whom, and how they'd be expected to act at each stage of the game. Dallas was worried about the restaurant we'd chosen, because he's a little particular about his food. My boyfriend Tad and I assured him that this restaurant had the pasta and pasta sauce he preferred. He nodded his head. He was ready to roll then, ready to do as duty required.
When we got to the restaurant, all my preparations came undone. There was no preferred pasta. Instead of the regular menu, they had brunch. All different foods, nothing like we'd described. Dallas stared at the menu and became visibly upset.
It's not that he's so spoiled that he can't eat something new. It's that he has a hard time with unexpected change, and with plans being derailed. (My boyfriend would argue that's probably a trait that he inherited from me, not a symptom of autism at all.) Add to that the stress of forced social interaction in a crowded, noisy, public place, and maybe some of you easily imagine how upset Dallas became.
I invited him to take a walk with me outside. He accepted. Away from the restaurant's windows, he said, "I don't want to cry, but I can't stop myself."
"That's okay. Cry," I said. "Sometimes I have to cry, too. Go on ahead."
He cried until he was done. Then we stood under a tree and talked about the menu options, Italian restaurants in general, and the custom of Sunday brunch with bottomless belinis. As we walked back to rejoin the family, Dallas thought of something new to worry about.
"Everyone in the restaurant is going to wonder what we were doing. They're going to look at us and know that I was crying."
"No, they won't," I said. "Everyone in there is dressed up nice, and they're drinking. All the women are worried about how they look, and all the men are worried about hooking up with the women. All people think about themselves more than anything else. They won't even notice us."
And they didn't. And Dallas ordered the pizza, and the rest of the brunch/lunch went off without a hitch.
And, afterwards, I realized that most people are too self-involved to worry about my son's tics. If they see him tic'ing and want to know why, we can tell them why. But, hopefully, most people will probably be too polite to ask or to stare. If they want to go home and talk about Dallas's tics behind our backs, there's nothing I can do about it, so screw them. It doesn't matter. Our lives are filled with family, family lunches, good times, video games, gelato. Movies, school work, work-work, housework. Internets and books and flea-ridden-kitten sightings.
I realize, then, that I really don't have time to worry about what people think, about anything at all. And the best "cure" I can give Dallas? Is to teach him to fill his life with good stuff and not worry, either.
Labels: Aspergers, domestic, parenting, pop culture, stories
6:41 PM #Comments:
Sometimes I need to cry, too. That was lovely, and you are a wonderful mom. And you made me cry.I can't stand it when people identify their kids by their disorders. One dad I know refers to his son as AspieBoy. As a term of endearment. It hurts my heart.
And I totally wish you were here in Delaware instead of there in Texas, because my stepson (Andy, 18, who I've mentioned before) and my 12 year old son Charlie, would totally love another videogame addict to play with and hang with and watch the Roomba do the only vaccumming that ever happens in my house. They especially love to watch it chase the dogs, which would be even more awesome with cats.
The change thing is especially big for Andy, but he has learned to manage it better. I remember one time, when he was about 12, he was about to go on vacation with his mom and her boyfriend, and I could not beLIEVE that I was up at one in the morning hearing someone cry "But I don't WANT to go to Hawaii!" He ended up having a good time, (go figure), except when he went snorkling and was bitten by fish who were after the bagel he'd left in his pocket.
You're doing a great job, it sounds like, with all your kids, and they all sound cool. Isn't it kind of healing to be raising baby men?
It sounds like you're doing the best thing out there for your kids, which is teaching them that they're okay. I know the worrying about other people being mean sucks big time, but remember that he comes home to you. Where he is loved beyond all singing of it.
# posted by
Amy : 6:04 PM
Gwen, I agree, "The Curious Incident" is also just an all-round damned good book. Don't know anything about A.M. Homes. I'm very scared about Nancy Reagan in general but will look for the book at the library.
I won't bore you with more of my ASD notions or theories except to say that I feel for Dallas and his discomfort with changes to his routine or unexpected changes. I used to think that I was easy going and flexible. Lately I've noticed that if someone interrupts my routine, say in the morning, by asking me to find something that could have easily been asked for and located the night before, it screws me up and makes me forget what I want to do and then makes me very grumpy. This kind of thing happens to me at work, too. Mostly I don't like change because I'm very old.
And, since I am rather particular about what I eat (in a way that annoys and confounds some people) it can be upsetting to go to a restaurant that I think has what I want and find out it doesn't. Again, grumpiness ensues. Also due to the oldness.
If people want to go home and discuss Dallas' actions behind your backs then they aren't being honest with themselves and admitting that their own behaviours may seem odd to others. But you're right, most people are so self-involved that they're worrying what others think about them most of the time, me especially.
- Maggie
# posted by
: 8:25 PM
Beautiful post, Gwen. I've said this before, but your sons are incredibly lucky to have a mom who loves them so much and proves that by her actions.
Also, having just figured out that it's none of my business what other people think of me, and letting go of the need to know the very worst, I think Dallas is super-lucky to be learning that now. What a brave boy.
# posted by
Jackie Danicki : 8:47 PM
You sound like a really good person.
I work with developmentally and mentally impaired children, and unfortunately, there really is no handbook for how to deal with these situations. You seem to be doing a bang-up job.
# posted by
Cap'n Ganch : 11:14 PM
It is so true that people don't care about what we're doing nearly as much as we think. That's a liberating realization. If you'll pardon this superficial example, I remember years ago always sweating over what shoes I'd wear to a party. Then I'd get home from the party and realize I hadn't looked at one single person's feet.
I loved this post and am so excited to tell you that that's my favorite A.M. Homes collection by far. And that final story knocked my socks off.
# posted by
Marigoldie : 11:15 PM
hey gwen. i'm so glad you read and liked 'the curious incident'. i couldn't help but think about it for about a week afterward...had this rough impact that sits with you and makes you think about the world in a completely different way. just awesome. and now i'm lookin forward to reading the homes you were talkin about. homes.
anyway, have a kickass week and take care. :-)
# posted by
Blake : 8:39 AM
Gwen, it's so nice that you know what he needs, and that he trusts you enough to cry from frustration in front of you. I hope I'm a mother like that.
# posted by
kate : 8:39 AM
First of all, what Kate said.
Second of all, what the hell is wrong with people??? You would THINK something like autism would bring parents together, but it just sounds like The Mommy Wars multiplied exponentially. I just... I just... Oy.
You're handling this beautifully, Gwen, you really are. I love how you dealt with the restaurant situation. Just amazing. :-)
# posted by
: 9:59 AM
I'm (fingers crossed) about to become a mum and all I can hope is that I do half as good a job as you.
You totally rock.
# posted by
: 10:32 AM
Wow, Gwen.
Dallas is so lucky to have a mother like you.
Inviting him to take a walk with you outside?
I hope I can be as understanding and thoughtful a mother as you obviously are.
# posted by
shrinking indigo : 12:39 PM
I have an 11 year old son just diagnosed with asperger's. He loves pirates and penguins, oh and wolves. I too long for a day when he makes his own friends and no one thinks he is weird because he still dresses up as Captain Jack Sparrow - when it isn't Halloween- or howls like a wolf for no apparent reason in the middle of a conversation.
# posted by
Sandy : 5:02 PM
Gwen, by an odd coincidence I just read another blog post on Asperger's at http://50books.blogspot.com and I wonder if you know about the book she refers to: http://www-users.cs.york.ac.uk/%7Ealistair/survival/
Hope it's helpful, and I agree with the other comments - you sound like a truly amazing mom for any kid, with any set of abilities and understandings, to be lucky enough to have.
# posted by
Sarah : 7:48 PM
Tell Dallas I love Roombas, too. I've been daydreaming about buying a Scooba as well.
# posted by
Yvonne : 11:31 PM
You know what I love about you Gwen? That you never gloss over your mistakes. You could tell the story without admitting that you asked Dallas not to clear his throat, but you didn't. I'm so glad I'm not alone with this mom thing. You rock.
# posted by
Carla : 1:10 PM
Carla: Thank you. I'm glad I'm not alone, either. :)
Y'all are all very sweet. You're making me feel a little guilty with the compliments, though, because I'm not really a super-duper-awesome mom. I'm just normal/average. For every touching story I tell here, there might be 3 or 4 or 5 times that I've lost patience with my kids, or didn't do enough for them, or said/did things that I later regret.
Thanks for y'all's faith in me. I appreciate it. But... please don't freak out if you ever see me in public, and I'm yelling at my kids in a way worthy of calling CPS. (And please don't call CPS!) Just saying. Because it happens. And not infrequently. :)
# posted by
Gwen : 2:30 PM
Amy: I know!!! The identifying-by-disability thing! It kills me! As does the identifying-as-parent thing. Anyone naming themselves SomethingDad, Someone'sMommy, WifeOfWhoever, etc., freaks me out.
Not wanting to go to Hawaii - heh. Yeah, we get that every weekend on a much smaller scale. (You *don't* want to go to the boba teahouse? What the?)
Raising baby men: Sometimes I think it was my destiny, maybe because I wouldn't be as good with girls. :)
Maggie: I like your self-Rx of "oldness." Lately I can't tell if my dad has Asperger's or if he's just a curmudgeon. Also, I agree that most Asperger's symptoms can be empathized with by empathetic non-AS people. Goes back to the spectrum thing...
Jackie: None of your business what other people think of you. I like that. It gives me a whole new viewpoint. Thanks.
Cap'n Ganch: Thank you. I try to do what Miss Manners says as much as possible, on all occasions. :) She's a good guide for everything.
Marigoldie: Right? Seriously, that was one of the most life-changing lessons of my young adulthood. Also, I love that you love that same book. We should make lists of faves, to share.
Blake: Thank you for inspiring me to finally get it from the library. And I hope you love the Homes. I bet you will.
Kate: Thanks. I have the feeling you'll be a very good mom.
Jennifer: I know, right?!? The mommy wars - perfect analogy. In both cases, I'm like, "People. There are kids who need us, here. Can we drop the drama and act like adults?"
Anon 10:32: Good luck with your pregnancy and your parenthood!
Shrinking Indigo: If you're already hoping to be a good mom, then you probably will be. In my experience, the bad moms are the ones who don't worry about it at all.
Sandy: I long for it with you. I'm optimistic that the day is coming, actually. If we all tell our stories, everyone else will realize and accept, eventually. (Also, your son sounds awesome. I used to dress "alternative" in high school, but secretly, in my mind, I was being a pirate.)
Sarah: We'll see what my 3 tell their therapists in 10 years... ha. And, I know that blog! That's Doppelganger!
# posted by
Gwen : 2:48 PM
Carla: Forgot to tell you: I really appreciate that you appreciate my honesty. Because I hate to lie, even though it would be so easy.
Have y'all ever read a blog in which the author says all the awesome stuff that happens, but none of the bad?
No, of course none of us have.
;)
# posted by
Gwen : 2:50 PM
Oh, Ms. Gwen thank you for that post.
I was just brain fried with all the Autism info when we got a diag. about 1.5 year ago for our son.
This was funny. Thanks!
# posted by
: 12:22 AM
Gwen, have you read "Born On a Blue Day" by Daniel Tammet? The author has Asperger's and has savant skills, too. It's really interesting.
# posted by
Lisa : 10:56 AM
When I read this entry I really had a "bulb" of sorts go off in my head. One of my dear, dear friends from college who is down (where I'm from) in TX. has a boy, he's about 11 and he has tic's, really badly she tells me, AND the throat-clearing thing. She's never mentioned the possibility of Asberger's (sorry if I may have misspelled it) nor Austism, could those traits be from Tourette's and not the "two A's"? She and I are quite close and talk about many things; including her son's situation, I'd love to forward this to her, but I think I won't because well I don't wan't to point something out that she (being the very intelligent, well researched Mom that she is may have or certainly will if not already find-out about), but what I'm getting at, (in my usual, LONG-Winded way!)is would a child with Asperger's or Autism be able to function for 11 yrs. in school, making good grades, etc. without "detection" by Teachers, etc. (for lack of a better word, sorry). His Mom also has always described him as being extremely intelligent especially in regards to machinery, mechanics, etc. Things I've heard are quite common in indiviudals with these things. At least as far as the small amount of knowledge on these topics go. Any advice or info. that you may have on this would be greatly appreciated, as I would love to be able to convey it to my dear friend delicately. Thanks! )
# posted by
: 12:11 PM
Anon: While I would never try to diagnose a stranger (or anyone) with Aspergers, I can tell you that we didn't have a *need* to get my son diagnosed until he was in 6th grade. The teachers knew he had little issues, though, all along.
Tics can be a symptom of Tourette's, or of other things, too.
If your friend's son's tics/other issues are affecting his academic performance (including his social skills in school), then she can ask the school to evaluate him and diagnose if applicable. There is a whole process in place for that, and it costs nothing.
Hope that helped.
# posted by
Gwen : 2:44 PM
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