Paying the piper

After a time, you may find that having is not so pleasing a thing after all as wanting. It is not logical, but it is often true.

Star Trek’s Spock

Humans want things.  We want to travel and have new experiences. We want to be loved. We want to be successful and have good self-esteem. We want to have tasty things to eat. We want… it’s a multiple choice answer. Pick one from column A and one from column B and so on.

In what is probably a fortunate coincidence, what we want is limited by our resources. While I want to be on an around-the-world permanent vacation, my clients would find it somewhat inconvenient. So I’m here, earning money to take occasional journeys to warmer lands.

This need to be able to afford our wants also contributes to other lucky moments like the fact that you don’t come home totally covered in tattoos from the night you were on the Bowery drunk enough not to care, and the situation that everyone isn’t driving Hummers just because they come in pretty yellow. Or that people remain faithful to their spouse or significant other, even though they see someone else who catches their momentary fancy.  Wants have costs.

Out of all the hoopla about Nadya Suleman and her “Octomom” status, I guess this is what tugs at me the most. She wanted children. Lots of children. She and her husband divorced because they couldn’t have children, and she conceived her first six with the help of a sperm donor. In listening to her interviews, she seems confident that she could care for and be an excellent mother to her children, no matter how many there were. She studied and received a degree in child and adolescent development, and so she should be as prepared as any woman for motherhood.

Now I always wanted children, too. But I got through college. Then I had two. I went through law school and then had another. I picked up others through marriage, and then adopted my current three when I had a stable home and plenty to offer them. I’d like to think I can care for them and be an excellent mother, to the extent its possible with their issues.

Children with autism and other developmental disabilities require more time than your average child. Significantly more. Nadya apparently admitted in an NBC interview that two of her first six children had some form of autism and another has ADHD. Given that anyone has 24 hours in a day, seven days in a week, the amount of extra care to be given to these special needs children will suck time away from those remaining. It’s almost impossible to do in a two-parent household, but as a single mother? Very challenging.  Those costs are starting to mount up.

So what could she have been thinking, a single woman on welfare who says she wants to be able to provide her children with all the time and attention each needs, to have herself impregnated with more? Even given that she didn’t expect to have eight viable babies, what is the cost of this want?

Not counting the financial cost to the state for the actual delivery and extended specialty care (horrifying) or the anticipated ongoing dole of state benefits to support 14 children (again, horrifying), but the potential for more special needs/special care children as is often the case with premature multiple births, not to mention the emotional investment to care for just the eight children– What about those she’s already brought into the world? The ones, like mine, who need so much investment to accomplish what others seem to do so effortlessly?

Can she really say she cares so much about each of them when she’s relegating them to some limited few-minutes’ window of her time each day? If that?

I can’t judge the truth of various statements people have made, like the claim she did this to get her own reality show or get rich quick with the money she can earn exploiting the children through photos, etc. If she really is the concerned mother she claims to be, we would have to hope these are only false rumors.  Certainly there has been plenty of talk about it and will continue to be.

All I can do is wish those children well, hope Ms. Suleman takes advantage of the genuine help being offered to her, and hope the ultimate costs of such decision-making discourage others from indulging their wants. Because having 14 children to deal with day in and day out may not be as pleasing as wanting them.

Thinking outside the traditional writer’s box

There’s a big debate going on over at Pennwriters right now between those who have been published traditionally and those who aren’t about which writers “should” do.

The old guard insists that if you want to write novels you must get them to one of the five big houses, get the publicity machine and promotion. Of course this means you have to get an agent. If you’re a writer who has tried to do either, chances are 99 times out of a hundred, it’s just not happening.

The old guard then cites the urban legends of authors who just kept sending out until sure as heck, that 101st letter did it. And maybe they did. More power to them.

Over the last year, I’ve been reading a lot about the state of publishing, and indeed about the world of communication in general. Time Magazine did a whole series of articles about publication in the digital age, and their conclusion is that the traditional routes are no longer exclusive.

Lev Grossman’s article says that “Publishers Weekly (PW) predicts that 2009 will be ‘the worst year for publishing in decades.’ A lot of headlines and blogs to the contrary, publishing isn’t dying. But it is evolving, and so radically that we may hardly recognize it when it’s done.”

But at the same time, newspapers are closing their doors, magazine and book publishers alike laying off staff, and paying markets, in the way we have always thought about them, are drying up.

Also at the same time, the whole concept of access to the masses has changed. Once upon a time, you needed to be cherished by Harlequin or Doubleday to even have your book see the light of day, unless you wanted to type out versions on your old Royal typewriter, one at a time, to circulate them. The Internet has changed that game.

Now authors have options. They can self-publish through Lulu.com or iUniverse, or epublishers which pay a royalty for books available digitally, or in print books.

Writers don’t need the fancy publicity tour, either. Authors like CJ Lyons and Christina Katz, aka Writer Mama, do  tours online by guest blogging in as many places as they can. Cost? Your time. The Internet has millions of outlets to reach the people who want your work.

Many professional artists are choosing non-traditional routes to promote work they want to do, and it’s starting to make headlines. Musician Jill Sobule found the traditional music business wasn’t working for her–and didn’t get money in her hands– so her latest album was funded entirely by donations from fans, and giveaways.  Screenwriters like Joss Whedon are thinking outside the box with projects like Dr. Horrible’s Sing-along Blog, which first appeared on the Internet for free, but only afterward started collecting revenues.

Communication venues like Twitter bring the celebrity even closer to fans.  Time this week has a story about celebrity Tweeting that shows how Shaquille O’Neal, Levar Burton and John Hodgman all use Twitter to connect  directly with regular people. Email and forums bring artists directly to their public, for the kind of one-on-one connection that sells readers, just as it sold Barack Obama to the American people at election time.

So we can all dream about that blockbuster sale, movie rights and New York Times listing right out of the gate. We can even work at it around busy lives of work, parenting and other distractions for 40 years. Maybe some of us will get it.

But in the meantime, don’t you have something to say? Maybe instead we should be out there exploring the new digital publishing world, meeting our readers, and sharing what we have to offer.

Spring on the horizon

Show me your garden and I shall tell you what you are.       __ Alfred Austin

Despite the recent turmoil, life goes on. In this neck of the woods, of course, one of the most exciting things is life! Finally, after all those frozen brown and gray months, we’ve got crocuses, green tulip leaves peeking out of the soil and at least the hope of warmth.

Last week, during a long, drawn-out meeting that didn’t really require my input, I sketched out the 2009 garden, realizing as I’ve said in months past, that we need to be able to grow as much food as possible. I’ve just now come to the end of last summer’s tomatoes I canned (without chemicals, additives or high fructose corn syrup, which has to be better for our autistic kiddos). We want to get a small chest freezer this year so we can freeze broccoli, beans and so on this year too.

In order to accomplish that goal, we’ve decided to nearly double the size of the current garden, making about 150 square feet more of growing room. Most of this garden will be new to cultivation, so we’re stirring the compost pile and importing manure to enrich the soil. (Persuading Little Miss that yes, it really is okay to put cow poop on your food… priceless.)

The oldest part of the garden has been worked for at least ten years. It developed some sort of fungus that attacks tomatoes about four years ago, so we’ve cycled the tomato plants to new sections. This year we’ll put in onions  in that space and also start a strawberry bed to carry on into the future– a fresh start, which always seems to be a blessing.

The Cabana Boy and I have also considered the realities of our work life and our therapeutic investment of time for the children, and realized that more than twice the garden space requires more than twice the time to maintain. Consequently, I suggested to my father, who lives in a seniors reduced-rent apartment building downtown, that I’d like to make this a community garden. We would provide the space and plant the plants, etc., and in exchange for maintenance work such as weeding, etc., a few senior volunteers could have weekly fresh vegetables and herbs.

He took the proposal to his tenants’ board and they agreed to post a notice. So we’ll see what happens. I guess I’d better read up on how to set this up legally, and what to do with difficult people since I always think things will go more smoothly than they do. Ideally, I’d love to meet some folk who enjoy working the soil and don’t have space to do it, and we can have potluck dinners and visit. We’ll see how it goes.

Meantime, our family spent an hour together yesterday afternoon digging up the row nearest the fence, adding nutrients, and getting a forty-foot row of peas planted. Sure, it’s not St. Patrick’s Day, but it’s close. The 2009 garden of goodness is on its way.

***

I’m jealous of an adventure taking place this week in sunnier climes– see my garden maven sister’s blog on her trip to the jungles of Mexico. She has contests, as well as amazing video!

Tunnel vision

Our life with autism has been steadily heading toward a dark tunnel, and I’m afraid the train is about to arrive.

While Little Miss seemed to be coming along so well up till this year, fourth grade has made it clear that she has real issues I’ve written off to language delays or other “fixable” things. We’ve had to come to grips with the fact that despite the help she gets at school and TSS/BSC services, one of two things is true: either the language help that she needs just isn’t available in this area, or that she really is limited to practical knowledge that will enable her to care for herself, but she’ll never be an academic scholar, no matter how smart she is.

That realization, while heartbreaking, pales next to the other situation. The past few weeks have made it clear that The Captain’s world cannot be moved by anything but his own impulsive desires. He does what he wants to do when he wants to do it, despite the rules and without regard for others. Earlier in the year, these incidents were limited to school hours, and we thought the “experts” could deal with that. I mean, despite our requests not to have an aide assigned so that he could learn to take care of himself, they put one with him. Seventh grade with an aide all day long. Not geared toward making a boy gain a lot of friends. But, again, we thought as long as the incidents remained at school and he continued to follow the rules at home, we could go on.

This week, however, in a remarkable display of just where his head stands, we’ve discovered that he is near sociopathic. He acts without regard for consequences and how his actions will hurt others.  As we peel back the layers of “what if,” we can envision some truly horrifying results, especially with an impaired sibling who’s coming into her own puberty issues.

When his mobile therapist came this week, we had a long talk. She reminded us at length that this is part of the Asperger’s diagnosis, while she reassured us that we’ve been doing all we can to help. She had a long talk with the Captain. Then she quit.

Part of mobile therapy, obviously, is the same drive that is part of helping an alcoholic: the patient has to want help and be willing to admit things aren’t as they should be, and be willing to make changes.  She says after nearly seven months with her, that’s just not happening. Perhaps he can’t process and assimilate the information, or else he can’t apply it. She believes, as we do, that he chooses not to. This after eight years of TSS and mobile therapy, sometimes at 35 hours a week.

So we’re heading into the tunnel, with a very small number of alternatives available. The therapist suggested respite, but there’s no one that will step up for that in either family, not for long enough to make a difference, anyway. Until he actually hurts someone, none of the facilities around here will be interested–we’re not sure we want to wait till that happens. Certainly, we’re open to suggestions. Got any?

Who you gonna call?

“And Reason kens he herits in/A haunted house. Tenants unknown

Assert their squalid lease of sin/ With earlier title than his own.” *

I’ve said before we thought our house was haunted. We’ve been told that a lady died years ago in our yard, out back in the berry patch, a natural death, apparently, but still. The psychic we saw last summer agreed. She thought it was the spirit of a male relative of mine. You’d think he’d just say “hi.”

Not that we’ve seen people moving around the halls in designer sheets, mind you, but odd things occur. Water suddenly starts running from a faucet that no one turned on.  Wheeled toys move by themselves on the floor. Odd noises come from unoccupied areas of the house.

Little Miss has often over the years seemed to be having a silent conversation with someone unseen. But then she may just be having a good joke with herself. Hard to tell with her sometimes.

But the most obvious symptom is the electric power; specifically that it goes on and off. In weird ways. Without explanation. There is a fairly regular combination of lights in the house, two upstairs and three downstairs, that will go off together for about 20-40 minutes and then back on, even though there is no way they can be on the same circuit.

Lights we can work around. I figure if some old ghost needs a few more hours of shuteye, I can live with that. (A note in old fashioned pen and paper would be more efficient, I suppose, or even an email.) But this week, the erratic on/off feature started to apply to the water pump and the stove, except when it went off it went off for 12 hours. Not so useful. The Cabana Boy is conversant with such things but he finally reached the point where he’d tested everything for which he had equipment, and he was mystified. Time to call an electrician.

We’d really hesitated to take such a step, first because the house was 100 years old, and heaven KNOWS what kind of wiring issues it might have, and second because however bad the wiring was before my ex-husband got hold of it, surely after he started re-wiring (“Oh hell yes I know what I’m doing–don’t worry!”) there would be major issues.

The man came in this morning, armed with just a tool bag, and went straight to work after asking several questions. I could tell he thought he had this sewed up. He went down to the basement and out to his truck and down and out and down and out a couple of times, and finally my secretary says, “Maybe when you come back you should bring an exorcist.”

To his credit he did return (sans Father Merrin), despite the odd look and the fact he ran past her desk this time. He actually found a short in one of the outlets the Ex had installed (surprise, surprise, surprise!) and closed it off, so maybe that will stop the flickering. The water’s running–for now. We’ll keep our fingers crossed. Maybe light a candle, too, or some sage. Meanwhile, anyone have the number to the Ghostbusters?

* from “Low Barometer” by poet Robert Bridges

Tag–you’re it!

Every once in awhile, when I’m examining this blog, to see what I have to offer, to determine what else I could add to make the site more useful, I read over my tag cloud.

I know that WordPress assigns the size of the words depending on how often you use the tags. So clearly autism reigns pretty supreme in its spectral variants. But if the reader were to take the combinations line by line, there are some “truths” to be found.

Take for example, “therapy TSS” or “autistic blog.” Given. “Prize publish publishing”? For a writer, not a big leap. “NaNoWriMo” is a real “mother.”

“Obama” has “novel” ideas, certainly. “Lawyer” between “internet” and “marriage” is an interesting juxtaposition.

“Asperger’s” NEEDS a line of its own. (and probably prefers one, if truth be told). “ADD agent”?  So that’s what’s skulking around the secret corners of my life!

“Carnival children”?

SO many things I could say, but I’ll bite my tongue. Oh yes, dear friends, you know what I mean.  Grab the cotton candy and the kettle corn and watch them go…

Reduction Seduction

My legal assistant gave me notice today that she’ll be off for seven to ten days next month; she’s having It done.

She’s certainly not alone. Two of my stepdaughters have had It. My ex husband got the Veterans’ Administration to pay for It. Several of my clients and more of their ex-mates have as well. Even Star Jones did It. You know, the surgery. The magic solution to everyone’s overweight problem: gastric bypass surgery.

Seems easy enough, right?  Doctors whittle down the size of your stomach until you can only eat a few tablespoons of food at a time. Your diet also has to change so you eat much less fat and processed sugars. Strangely enough, if you significantly reduce your consumption of calories and move bad foods off your plate–you lose weight!

The procedure, spelled out in detail here, involves the division of the stomach into two parts and then the division of the second section of the small intestines.  The larger portion of the stomach  is left then the bowel is reconnected in order to allow the juices of the stomach, pancreas, and liver to assist in digestion.

Lucky participants can use a laparoscopic procedure to minimize recovery time and scarring. Otherwise this involves major abdominal surgery, with its risks of infections and so on.

My assistant has had to go through extensive blood work, counseling and other requirements to even be considered.  But she says she’s ready now. She wants the magic.

I’m not denying people lose weight with the surgery, and often dramatic weight loss, at least at first, if they strictly follow the recommended protocols. But it seems to me, and I’m not alone, that people are jumping to the conclusion that bariatric surgery is the “Come to Jesus!” solution to overweight.

Any of us who have been overweight most of our lives have dreamed of that pill that we could just swallow to become one of the Beautiful People. You know, the “Lose Weight While You Sleep! Don’t Change a Thing you Eat!” Method. It just ain’t happening. The way to lose weight is the same as it’s always been: burn more calories than you eat.

The easy fix often comes with high risks.  One Florida friend of mine took a powdered herbal diet product for six months before suffering a very bad stroke she has not recovered from after nearly 15 years. One of my stepdaughters is now about to have a kidney removed; no one has linked the direct cause to her surgery, but no one has ruled it out, either.

Most of these people were 50-100 pounds overweight, some a little more. They did not engage in the kind of exercise and diet program that would cause a significant weight loss before grabbing for the surgery.  I guarantee if I ate five tablespoons of food per meal and walked two miles a day, that I would lose many pounds as well, without any of the attendant risks of surgery. What I lack–and these other people as well–is the motivation to succeed at the task.

This is the year I intend to work at it, though I’m sure at this point I’ll never be model-thin. That’s okay, too. I just want to make it easier to move, get around and feel better. Without having someone cut me all up to do it.