Saturday, December 29, 2007

How about for one day YOU be a "hero?"

There's a new book out titled "Autism Heroes" that exalts the heroics of parents of children with autism. "Heroics" being pretty much defined as doing everything they can for their kid. As the mother of a child with autism I get a lot of "I could NEVER do what you do, Julie!" from people. I don't get it. If their child had autism, they'd stuff him in the garbage and walk away? They'd return him to the hospital as defective? They'd chain him in the basement and pretend he doesn't exist? Being a parent to a child who happens to have this disorder makes me and other parents in this situation heroic?

Hell, I could never do what I do, either. But I have to. My son is mine. I love him. I want the best I can do for him, like anyone else. There aren't a lot of other options.

I'm often exhausted and depressed. I'm not sure I CAN "do it" one more day. Friends and family could, for one day, stop exclaiming their praises over my heroics (or stop telling me what I should be doing) and give me a hand. Yes, people, you COULD do what I do!

Help someone out who has a situation that they didn't bargain for. Give them a break for one day -- or overnight.

Now THAT would be heroic.

Friday, December 21, 2007

Ranson Notes Recanted

The "Ransom Notes" have been removed, thank goodness. The psychiatric clinic in New York that was advertising for awareness got enough emails and phone calls from pissed-off parents, like myself, to re-think their message to the public. (See my previous blog)

Their main reasoning for pulling the inflammatory ads seems to be that their staff is spending too much time fielding the calls and emails. It was merely their intention to draw attention to the serious issue of untreated childhood psychological problems, but they unintentionally offended parents of children with these issues. They really didn't see it coming, which is an indication of how out-of-touch most of the medical community is with the reality of day-to-day life for families dealing with autism spectrum disorders and other psychological disorders.
A psychiatric clinic cannot -- at this time, anyway -- 'rescue' my son. They have medications to dispense. My son's psychiatrist, while a great guy and a very good doctor, relies heavily on MY input, rather than the other way around. He doesn't have many answers for us, other than trial-and-error on treating my son's most disruptive symptoms with medications. That's all modern psychiatry can offer families right now. Why offend us with bizarre "ransom notes" in the name of helping us?

I really hope they mean it what they say in the recant:

"Work with us as we fight to give children and their families equal access to health insurance, remove the stigma that the term "psychiatric disorder" so clearly still elicits, and, most importantly, support the drive to make research and science-based treatment a national priority."

Saturday, December 15, 2007

Again, all awareness is not good

We have your son. We will make sure he will no longer
be able to care for himself or interact socially as long as he lives.
— Autism

This is one of the six “ransom notes” that make up a public service campaign by the New York University Child Study Center to raise awareness of what Dr. Harold S. Koplewicz, the center’s founder and director, called “the silent public health epidemic of children’s mental illness.” The shocking billboards and posters are plastered all over New York.

The idea is to wake up parents, to shake them out of their supposed denial, and get them to bring their children in for treatment. Who do they think is in this denial? I'm well aware, as are the vast majority of parents who have children with autism, that my child has the disorder. We don't need a billboard to tell us! In fact, my experience, and the experience of almost every other parent I've talked to (and I've talked to many) is that it's been THE PARENTS trying to convince the DOCTORS that something 'isn't right' with our babies, not the other way around.

What I'd like to know is this: is New York University going to "rescue" my son from his so-called "kidnapper?" There is no cure for autism. As a parent, I have tried everything to help my child, and a rude smack across the head, such as this campaign is, doesn't help me or my child.

What's the point, then, other than shock value, for this campaign? Why load another pile of despair and hopelessness on parents who already fight every single day to stay positive and optimistic? If you want to work on awareness, work on making society aware. I'm already well-aware, believe me.

Thursday, November 15, 2007

Has Jenny abandoned the Indigo and Crystal Children?

Sorry, I didn't mean to turn this into a Jenny McCarthy bash, but I worry that society in general and young moms of young children in specific are getting their information about autism from the wrong places.

If you read Jenny's book, WHICH I DID, she mentions Indigo and Crystal Children. It sounds suspiciously like a lead-in to her next book. Then, if you Google "Jenny McCarthy and Indigo Children" a site comes up called "Indigo Moms." The intended purpose of the website is listed in a quote by Jenny on another site, "Children Of The New Earth:"
Jenny says: "There were so many times I would be sitting around with my son, Evan, and wish that I could join a 'mommy and me' group that loved talking about Indigos and Crystals. I always felt like there was no one around me who 'got' it. That’s why I came up with the idea to have women post their info so as more mommies become enlightened they can contact someone in their own neck of the woods to chat and share stories with."

Lo and Behold, it's no longer available. Is it possible that her editors, publishers, and "handlers" had to rein her for credibility purposes? Hmmmmm.... If you look into the whole movement of Indigo and Crystal children, you'll find it's a New Age belief that a whole generation of angelic, alien children have been sent here to save us all from ourselves.

Jenny McCarthy believes her son, Evan, is a "Crystal Child." Hey, isn't this the kid she wanted to "fix?" Which is it? He needs to be fixed, he can be fixed, he has been fixed --- OR he's been sent by aliens to fix US?

Again, my point is: be careful where you get your information on autism and decide what's best and right for YOUR family.

Friday, November 9, 2007

Jenny McCarthy has given me a "Timeline to Fix" my kid

Jenny, girl, you're a Playboy Bunny past your prime, an author, a comedienne, a mother. But you're no expert, despite your "PhD in Google."

I know you mean well. I know your intention is to wake up the world to the autism epidemic (and yes, it IS an epidemic). I know you want to send the message to moms with kids who have autism that they need to shake themselves out of denial because denial wastes time. But what you state as encouragement sticks a knife into the heart of every mother who has DONE all the stuff you've done (except having them blessed by Mormons) and still, their kid is not "fixed."

Honey Bunny, despite all my best efforts, my kid's not completely "fixed" and neither is yours. You have to watch what language you're using, because you can easily crush a mom's hope when all she does is just not "enough." Your son is young, and you have many more years ahead of you. There's so much more than you can even imagine. Puberty hits our sweet little "Indigo Children" (whatever that is) just the same as other kids. Are you prepared for that?

You had my ex-husband's girlfriend convinced that she could come, in a blaze of glory, and "fix" my kid. To me, that felt like an accusation that for ten years I did nothing. Why does she think my ex was so "neglected" in our marriage?

Jenny Dear, you said on the Oprah show that the clock was ticking, and that age 11 is some kind of crucial deadline and that all hope is lost after that. "Girlfriend The Savior" soon found out that there are waiting lists to see doctors, and was (HELLO, welcome to my world!) frustrated that they didn't UNDERSTAND the crucial "timeline" we're dealing with. She also found out that you can carefully and strictly "do" the diet and supplements and still not see a "fixed kid." She also realized, in going over the lists of what you and your biomedical doctors say causes autism, HER kids should be affected by this crappy disorder, not mine. Don't misunderstand me: I no more want her sweet boys to be autistic any more than I want mine to be. I'm just saying it's not all that cut-and-dried. This disorder is UNFAIR, still mysterious, and NOT YET CURABLE, and you're contributing to the confusion.

The age of 11 does not hit like a ticking time bomb. Our kids CAN and DO continue to improve all their lives. How dare you declare doom on my child at age 11!

Jenny, my son IS much better off than he was at diagnosis. Either because of -- or despite -- all the best efforts, he can have rudimentary conversations and tell us what he wants and needs. He can to some extent hang out with the other kids and be tolerated, sometimes even welcomed. But "fixed" would mean that, like any other 10-year-old, he'd be talking baseball or even playing baseball or soccer or Monopoly or a million other things that kids do.

Either because of or despite all the best efforts, my son wants hugs and kisses now, instead of pushing away. How gratifying for me and his other loved ones! But if he was "fixed" he would be getting embarrassed like any 10-year-old does when his mom wants a kiss before he gets on the bus. Heck, for that matter, he'd be walking or biking to school from my house, instead of being picked up by the "short bus."

I'm happy that your book is bringing attention to autism. It should be declared a national emergency! But your book also puts it all back into the laps of the already exhausted, unjustly blamed, and discouraged moms, just the way the insane and unqualified Dr. Bettelheim did with his idiotic 'Refrigerator Mother' theory in the '80s. In doing so, Dr. B claimed the right to take a generation of children away from their mothers and subjected those mothers to a lifetime of undeserved guilt. What effect will your words, "you have a timeline to fix your kids" have on THIS generation of mothers?

Tuesday, October 23, 2007

Would this contract hold up in court?

Desperate times make for desperate mothers. Last year, when he was nine, my son Colin started refusing baths. This water paranoia seemed to have come out of the blue, because he never had trouble with it before. I even have really adorable video footage of him in a big Jacuzzi tub with his brother, playing with bubbles and giggling his head off. He’s never fallen in the tub, so when he suddenly just flat-out refused to get in the tub for his bath one evening, I figured it was just a fluke that day and put off bath-time for the next night.

Things didn’t go any better the next evening, either. In fact, my failed attempt trying to coerce Colin into the tub took hours and a lot of years off my life. Suddenly, something that my son had enjoyed, or at least tolerated, had become what I call “a Thing with a capital “T” and even though Colin is “verbal,” he couldn’t explain to me why getting into the bathtub was suddenly so intolerable.

The next day, with my son becoming more in need of a bath, my visiting sister told me to relax and allow her to handle it. No such luck. The boy who was typically eager to please his favorite auntie behaved like a cat being dipped for fleas and my sister ended up the wetter one.

When I’m up against a dilemma that seems to have no solution, I sometimes get just plain silly. This was one of those times.
I don’t know which exhausted, over-wrought corner of my brain the idea came from, but I decided, just for the heck of it, to ask Colin to sign a “Bath Contract.”

Now, I’m no lawyer, and I’m sure it wouldn’t have held up in court, especially because it didn’t contain any big legal words, but this is what I typed up:

“I, Colin, agree to take a bath every Sunday night before bed.
I don’t have to take a bath any other night if I don’t want to. Love, Colin”

I left a space for him to write his name then read it to him and explained that he does need to take a bath sometime, and that if he wrote his name on it, it meant he would have to take a bath, but only on Sundays, that’s it. I just assumed he’d refuse to “sign” it and run off.

Imagine my surprise when he took the pen from my hand and wrote “C-O-L-I-N” very carefully and deliberately under the word “love.” I explained again, in simple language, how that meant he was making a promise and it was “the rule” that if he signed his name under a promise, he’d have to keep the promise. I then hung the “bath contract” on the refrigerator and proceeded to point it out to him for the rest of the week. He always responded to my reminders with a “yup” or an “okay,” but I didn’t really expect anything to come of it.
I just braced myself for Sunday evening’s bath battle.

On the next Sunday, after supper, I took the “contract” down and showed it to Colin, told him it was Sunday, which meant it was time to keep the promise he signed, and watched in utter amazement as he said “okay” and walked up the stairs, got undressed, and turned on the bath water!!! I allowed him to control the temperature, which also might have had something to do with his new attitude of cooperation, and helped him calmly step into the tub safely and sit down and get clean, finally.

After a lot of “yays!” and “what a good boys!” we called my sister with the good news. I put the freshly clean Colin on the phone to tell her himself: “I take a bath, Aunt Bowbie!” Aunt Barbie had heard about the “bath contract” and we had had a good laugh over the stupid things we sometimes try as mothers to get our kids, autistic or not, to do what we need them to do. Unbelievably, we haven’t had an issue with baths ever since. Still, I’m afraid to jinx our record and try this crazy idea on the door-slamming problem or the no-eating-Nestle’s-Quik-powder with a spoon at 5 a.m. issue….

Saturday, October 20, 2007

Super-awareness: freedom to sniff and finding the good stuff.

A lot of people are under the mistaken assumption that people with autism are unaware of their surroundings. My experience with my son, Colin, is that they are, on the contrary, super-aware. Super-awareness can look like unawareness if you don't understand that there's a lot more to experience in the world than the average person allows himself.

Colin is a super-sniffer. He's a bloodhound wearing the disguise of a ten-year-old boy. For him, it can be a wonderfully intoxicating way to discover the world. And his autism gives him the gift of not caring what anyone thinks when he sniffs unabashedly. What freedom!

Take a baseball mitt, for example. Wouldn't you, if you could, love to just stuff your face deep into a baseball mitt and I-N-H-A-L-E the rich leather scent of it? Try it, the next time no body's looking.

Being a super-sniffing bloodhound can net you the good stuff, too. One morning, I woke up, as I've often done, to the sound of Colin rummaging in the cupboards. I called to him. As usual, we did our little "thing." I groggily called out his name and he called back, "whaa--aat?" a few dozen times, which is a clever ploy. What's going on in that cunning brain of his is this: "I can pretend I don't hear you, you'll think I'm having auditory processing difficulties, and I can keep on doing what I'm doing until you come find me."

It works, of course. Having autism doesn't mean he's unaware OR stupid. I finally had to haul my butt out of bed. I found him washing his hands in the powder room, trying to hide the evidence, if you will. He wore a large grin, like the Joker, but he wasn't actually smiling. What WAS that?!

"Colin, honey, what's on your face?"


"What's that on your face, Sweetie?"

"What?" etc...

Finally, he had to 'fess up. I wasn't going away. He explained, "I smelled chocolate and found it in a yellow can."

Yellow can?! I ventured into the kitchen and found brown powder EVERYWHERE. Colin ran in after me and grabbed his yellow can -- Nestle's Quik -- brought it to his mouth and tipped it back like a drunk getting the worm out of a tequila bottle. Which explained the chocolate "smile." Why doesn't it ever occur to me to grab a camera during these precious moments? I suppose it has something to do with the fact that these moments usually occur between 2 a.m. and 6 a.m. He knew he had to move fast if he was going to get another fix before I took the yellow can filled with bliss away from him.

I was jealous. Sensible, middle-aged mothers do not have the freedom to grab a can of Quik and toss it down it back, no matter how much they'd love to. The smell of chocolate lingered in the house for days, though. A sweet reminder to those of us who don't have the gift of being a super-sniffer, super-aware.