Whole Foods: Not "Healthy" For Anyone

Among the habits my family of origin likes to tease me and my husband about is our elaborate grocery trips. Because of all the allergies and food preferences in our little troop, it is not unusual for to spend every other weekend and about $150 a visit stocking up at Whole Foods Market.

Well, I was already going to write an editorial about an incident there concerning some pretty scary stuff in the produce department. (It involved drool, a watermelon, a three-year-old and how employees just let a guy buy the melon after all three interacted). Then came John Mackey's editorial in Tuesday's Wall Street Journal, where he gave all the reasons not to support the health care initiative (first hint: he calls it "Obamacare").

Mackey is the co-founder and current CEO of Whole Foods, and he really must have no idea who comprises his client base because his editorial is so off the mark. You can read it yourself at http://online.wsj.com/article/SB10001424052970204251404574342170072865070.html

There were several conclusions I drew from the editorial: one, if his people are paying a deductible of $2,500, then no wonder the stores are mostly staffed by young people; two, it also follows that many of them don't go to the doctor when they may need to do so, because who can afford it on what they make if the insurance doesn't kick in until they hit $2,500; and, three, I can only wonder what kind of insurance they do have, and what it does and does not cover.

It's bad enough that Mackey has swallowed the Republican/Libertarian party line about health care not being an "intrinsic right." (First of all, John, if you're going to bring up the Declaration of Independence, use the correct parlance — it's "unalienable right.") But then he compounds his already flawed argument with inflammatory remarks about how we're running out of money and won't have anything left after the baby boomers (like him!) are through their Medicaid stage. (Hint John: if medical costs weren't so horribly over-inflated because of businessmen who think like you, then maybe we wouldn't be running out of money.)

I also resent Mackey's idea that if you just make the "right choices" in regards to lifestyle, you won't get sick. (The implication being that one of those "right choices" would be shopping at his store.) Yes, Americans eat the wrong things and obesity often leads to health complications. But what about people like me? I'm not overweight, I eat a lot of vegetables, I've always been active (the kids and my jobs have seen to that) and yet I still got cancer when I was only 39. And I know other men and women in the same boat. Catastrophic illness, accidents, "acts of God," can happen to anyone, at any time — some people more likely than others, statistically speaking, but again — anyone at any time. Isn't that what health insurance should be there for?

As for letting the insurance companies and "individual customer preferences" decide who gets coverage for what, when I finish rolling on the floor laughing I can tell you all about the ways that insurance companies have routinely denied families the benefit of needed therapies for their children with developmental disabilities like autism. It's a battle that is still being fought, with minor victories — but only because of state laws like those in California (see http://articles.latimes.com/2009/mar/12/local/me-banks12).

(BTW, If you want to know why California is going bust financially, blame the fat-cat insurance company CEOs who refuse to pay for helping kids with special needs, forcing the state to foot the bill, while they continue to enjoy tax breaks funneled through by our beloved guv'nah.)

But I digress.

The whole (not Whole Foods) point is, we need to put our money where our hearts are. I'm not saying the health care initiative is perfect — far from it. But it's a step toward parity with the rest of the world, which takes far better care of its people than we do here. If you agree, I hope you will join me in boycotting Whole Foods and Wild Oats stores.

p.s. If you'd like to read an excellent, point-by-point refutation of Mackey's editorial, go to http://open.salon.com/blog/spittingkitty/2009/08/13/an_open_letter_to_whole_foods_ceo_john_mackey

p.p.s. If you need an alternative to WFM and live in the San Fernando Valley or surrounding area, I highly recommend Follow Your Heart. (They have an awesome restaurant, too.)

The Pit and the Pendulum

There has been some idiocy in recent days regarding autism being a "scam". Another celebrity (if one can call either party that) referred to the parents concerned about the autism/vaccine link as "parasites." Regarding the people touting these beliefs, I will not add to his or her infamy by rebroadcasting or reprinting their remarks; the latter has made some weak apology, and the former is doubtless enjoying the sensation they have caused.

But these recent incidents have me very concerned. In the past ten years since my oldest son's diagnosis, we as a nation have gone from thinking of autism spectrum disorder as a rare, "orphan" disease to a neurological condition affecting as many as 1 in every 150 children, primarily boys. I remember very well, after the developmental pediatrician's shocking proclamation ("Oh, he's autistic, of course!" she said, just like she was telling us Ben had the measles, not to worry), doing what any good journalist would do -- going to the library to find something, anything about this strange disorder -- and finding three books in all of the Los Angeles Public Library's vast holding that were aimed at parents. Now, if you do a search at lapl.org on the word "autism," you will find 75 items; "autism in children" will net you 62, and even as specific a subject as "parents of children with autism" show a comfortable 21 texts. (There is even a book about how to talk to the parents of children with autism -- perhaps I should send that blunt doctor a copy.)

However, the very public gaffs (or deliberate incitement) of the past week show that the pendulum bringing autism out of the Dark Ages may be swinging back. What was the darling disorder of TIME and Newsweek for the past couple of years -- it even has its own month, April, thanks to the efforts of several autism awareness groups -- is now being blamed for sapping school districts of needed funds, causing a public health crisis from parents who refuse to innoculate their children against serious diseases (however you feel about the topic) and now, being at the root of what some consider the weakening of parental control in our society. ("Spare the rod and spoil your child into being autistic!" these critics shout -- making one wonder what James Dobson et al. would do if they actually had an autistic child or grandchild.)

It is similar to what has happened, sadly, with Attention Deficit Disorder, which in the late 1980s to mid-1990s started to be taken more seriously by researchers -- only to end up as an excuse to sell parents and teachers on the joys of Ritalin. Granted, there was likely some over-diagnosing of children and teens with this disorder; however, many kids who could have been helped by learning more about effective ADD therapies are now suffering because no one wants "that label" anymore.

And this is what I fear may happen with autism. There is already enough stigma attached to the "A" word. Some parents, myself included, talk about our kids having Asperger's Syndrome because it doesn't sound quite as bad (and because the public is just educated enough to know that "Aspie" kids are supposed to be geniuses). If this is the situation with educated parents, who already know what their children need, how in the world will this affect the parents of children not yet diagnosed? Because there will be parents out there whose child is on the autism spectrum who fail to get that child the intervention they need -- all because people around these parents convince them that what they need to do is discipline that child and he or she will stop being autistic. And G-d only knows what kinds of discipline they may turn to in the name of "fixing" their little boy or girl.

All the studies show, and common sense dictates, that early intervention using positive reinforcement -- whether ABA or floortime or whatever methodology fits -- makes a huge difference in helping children with autism to be functional, productive and, we hope, happy human beings. But these methods cost money -- money that often has to be provided through government agencies. How likely is the public to continue funding programs and specialists for children on the autism spectrum if they believe that it is the parents' fault these kids are the way they are?

A long time ago, in the 1950s, a man called Bruno Bettelheim made a name for himself as a therapist by purporting to study and write about autistic children. The cause of their illness, Bettelheim found, was a basic lack of attachment between the child and his or her primary caregivers. The result? As shown in the documentary "Refrigerator Mothers," the children were removed from their homes -- in some cases literally torn away from their grief stricken moms and dads -- and institutionalized, with the idea that they would do better away from their parents' harmful ways. "If anything could be more devastating to a mother than having her child succumb to autism, it might be having to shoulder the blame for the affliction...Though wholly discredited today, the 'refrigerator mother' diagnosis condemned thousands of autistic children to questionable therapies, and their mothers to a long nightmare of self-doubt and guilt" (http://www.pbs.org/pov/pov2002/refrigeratormothers/aboutthefilm.html).

Just like the ill-informed and heartless treatments of the 1950s, the harm being done by today's self-serving celebrities is unconscionable. It is up to the parents, the grandparents, the aunts, the uncles, the teachers, the school personnel, the doctors and nurses and occupational therapists and behaviorists and camp counselors and neighbors and friends -- indeed, anyone who has ever loved a child with autism -- to see that the evil legacy of Bruno Bettleheim and his ilk does not destroy the progress we have made.

Why We're Going Gluten-Free

We're all on the gluten-free diet over at my house — and, in spite of the expense, the hassle, and the sabotaging by some unenlightened humans, it's actually helping.

Let me explain: my husband was the first to try going gluten-free. He's had digestive problems all his life, and spent the last few years eliminating first one thing, then another. When he finally locked onto the GF diet, it made such a difference he wanted the rest of us to give it a go.

This wasn't just a whim. My older son, who has Crohn's, juvenile rheumatoid arthritis and high functioning autism, underwent allergy testing last month and showed a strong reaction to casein, which he's had problems with since he was a baby. (He broke out in hives upon his first taste of yogurt at six months, then had no dairy until age two, when it seemed fine. Makes me wonder...). He's on so many medications, some with very serious side effects, that just to be able to reduce his meds is one of our major goals.

Then there's my youngest, who is borderline on the autism spectrum. He's had bouts of bad behavior at school and so many tantrums and mood swings, we were willing to try anything to help him get it under control.

As for me, I've fought eczema and anemia for years, along with a host of other, more serious health problems. The latest battle has been with this strange skin disorder no one seems to be able to diagnose. It makes me itch like crazy most of the time, and about 50 percent of my body is covered with a rash that matches side to side. Despite this evidence, I've been treated more dismissively by medical professionals this past year than ever in my life. One doc's solution was to put me on antibiotics, to which I had a huge allergic reaction; another responded to my plea for something to stop the itch by telling me to "go soak in a tub with some Clorox."

Finally, the one doctor I trust — who's in a totally different branch of medicine — told me she really wanted me to go get a colonoscopy. It was part of her standard procedure for her patients, but she was also troubled by a test showing me leaning heavily toward osteoporosis, despite my age (40ish). The moment of ultimate irony occurred when the gastroenterologist to whom she referred me, after taking a health history, paused and told me he'd like to do more than a colonoscopy: he'd like to biopsy my small intestine.

"Well...sure, but why?" I asked.

"Have you ever heard of celiac disease?" he asked. Ding, ding, ding, ding, ding!

At this point, I had already been experimenting with cutting out the gluten. The doctor — let's call him Dr. M. — told me I couldn't do that; I must eat as much gluten as possible, in order to get an accurate test result. I tried to follow his directions. For the next four days I ate two bagels a day, munched on my school cafeteria's evil coffee cake (the same recipe they'd had since I was in high school — that stuff's got to be chock full o' gluten) and toasted every wheaty thing I could toast. Unfortunately, it only took three of those four days for my symptoms — digestive, dermatological and depressive — to return, even worse than before.

So after considering how awful I felt, and believing that the $950 out of pocket the endoscopy would cost me could be much better spent elsewhere, I decided to just go on the diet, along with everyone else. I realize this may not be optimal in terms of a diagnosis, but if I feel better and my family starts to heal, then maybe that is all the proof we need.


ADDENDUM July 2008

In the interest of honesty, I need to say a few words about what turned out to be an enlightening, but mostly failed, family experiment.

The results were, at best, mixed. For my husband, going gluten free seems to have helped him to lose weight and to feel better. For me, after further tests it looks like it is unlikely I have celiac disease, but I may have an allergy to wheat (we'll know in a few weeks).

As for the children -- this was actually my second gf/cf diet experiment for B., and both times it turned out poorly. The first time, back in 2000, there were very few decent-tasting foods I could substitute for his usual diet (chicken nuggets, anyone?), and after three weeks there was no substantial change in his health or his behavior. This time, we had plenty of delicious substitutes, but he lost so much weight in such a short time, with no improvement in the Crohn's, that it was detrimental to continue and we stopped after six weeks.

And then there was our youngest. Z., whose stubborness is matched only by his cunning, found every possible way to "cheat" on the diet, to the point where he was actually paying other kids to let him eat some of their lunch. He also knew to go for snacks to certain teachers in the after-school program, the ones who were new and not up on all the kids yet. (You have to admire his determination.)

The real moment of enlightenment came when we visited my parents one day during the six weeks. I had brought with us some wonderful gluten-free cookies from The Sensitive Baker in Culver City. For the first twenty minutes we were there, Z. was content to toss a baseball back and forth with my dad. Then he came inside and ate a cookie. Within minutes, he was trying to sit upside down in the living room chair. He bounced off the furniture, chattering away non-stop like a frantic chimpanzee. I looked at the label and what do you know? The cookies had about three times as much sugar as a bowl of Cap'n Crunch (the standard by which I measure all things sugary). So his problem isn't the wheat -- it's the sweet!

Overall, I would still tell parents to try the gf/cf diet if you feel it might help your child -- but you MUST do it under the supervision of a doctor and/or nutritionist. Even with monitoring B. closely, it was the visit to his gastro that showed us this diet was too extreme -- and ultimately ineffective.

Question: Asperger's or High Functioning Autism? Answer: Resources!

The calls used to come at least once every six weeks: “A friend of mine gave me your number. My son/daughter has just been diagnosed with autism/Asperger’s Syndrome and I don’t know what to do. Where do I begin?”

As the parent of two children "on the spectrum," I know how scary it is for a parent to hear that diagnosis. When my older son was evaluated in 1998, there were only two books at the Los Angeles library about children with autism that were written in language the average parent could understand. At that time, the disorder was just seeing an increase to 1 in every 500 children, alarming medical professionals and researchers who had long regarded autism as a rarity. The one plus side of so many cases of ASDs being diagnosed today (approximately 1 in 150) is that there are now a variety of publications and resources available.

Here is a sample of the books and websites I have found most helpful. You may want to check the books out from your local library system or preview them on Amazon.com before you buy:

Books

The Complete Guide to Asperger's Syndrome by Tony Attwood
Dr. Attwood is the physician in England who first brought worldwide attention to the growing number of children with Asperger's. This guide, written in 2006, has the latest information but may be skewed to a British audience. Still, lots of good stuff for the newly diagnosed. Also check out The OASIS Guide to Asperger Syndrome: Completely Revised and Updated: Advice, Support, Insight, and Inspiration by Patricia Romanowski Bashe, Barbara L. Kirby, Simon Baron-Cohen (yes, that's Borat's brother) and Tony Attwood.

Hitchhiking Through Asperger Syndrome by Lise Pyles and Tony Attwood
Great book, written from a parent's perspective.

Asperger Syndrome and Adolescence: Helping Preteens & Teens Get Ready for the Real World by Teresa Bolick
Good, basic information for parents.

Freaks, Geeks & Asperger Syndrome: A User Guide to Adolescence by Luke Jackson
Fantastic book, written by a young teenager with Asperger's. I used this one to help explain to my older son what he has and that he is not alone.

Web Sites

Just as there are now more resources overall for kids with autism/Asperger's , there has been a similar explosion in the number of scary or questionable web sites offering advice and "cures" for autism. Here are a few of the most well-established sites to help you begin your research on solid footing:

Autism Society of America (the oldest autism org, founded by parents)

MAAP Services for Autism and Asperger Syndrome (a nonprofit organization aimed at helping children with Asperger's and High Functioning Autism)

Your Little Professor (weak name, but good information)

Autism and Asperger's Syndrome (a site run by the University of Southern California; lots of good links)

Finally, there's an article I wrote some years ago about the emotional side of being the parent of a child on the autism spectrum, when I edited a special issue of Olam magazine.

Diagnosing Asperger's is just the first step in a long journey. Please feel free to leave a response here if you’d like more information, or have a resource to share.

The Hardest Night of the Week

I hate Friday night.

I know — technically, tonight is Sunday, not Friday. But it might as well be what I’ve come to think of as the end of the week, because it’s the night I have to say goodbye to my boys.

Of all the things you don’t think about when you’re getting a divorce, having to separate from one’s children is the worst one. While I realize this might not be the case for everyone — sadly, not all parents are emotionally attached to their kids — for me and countless others it is the bittersweet trade-off for an otherwise better life.

Some of my friends think I’m nuts — they say they would love a “vacation” from their children, time to spend time with their spouse without having to worry about a baby sitter, time to sleep in on a weekend without little people coming in to wake you up at 5:30 a.m. But the word vacation implies a choice: you plan a vacation, and what makes it special is that it surfaces occasionally, usually just in time before you crack from the pressures of daily life.

This is not a vacation. This is an enforced separation, and it is as painful to me as I imagine living without the children during the week is to my ex-spouse. I cannot even comprehend how he does it, week to week, especially during the school year when he may go without seeing them for days at a time. (Of course, his decision to move 35 miles away to live with his girlfriend might indicate it is not as big a problem as might be thought — but that’s another story.)

Tonight is even tougher than the average night, because the kids left for their annual camping trip with dad. That means at least three days when I won’t hear from them at all. I can hardly breathe when I think about it.

Granted, it isn’t always easy dealing with two boys, especially my two. My older one, the one who’s a little more clearly AS, spends most of his time talking about his two great loves: “Garfield” and “Calvin and Hobbes.” Unlike most of the AS kids about whom I’ve read, his interests are not terribly odd — no train schedules, no dinosaurs, just cartoons — but the ones he has chosen lately are off the radar of kids his age. (It was both a blessing and a curse several years ago when his obsessions was for SpongeBob Squarepants — all the kids were into it, so he came off as a little intense rather than strange.) Believe me — I mean that kindly; as a child I myself had all sorts of off-beat interests. However, it does make it tough to deal with a kid who wants to talk about nothing but a cartoon cat all day long.

Then there’s my little one, who I long ago nicknamed Tigger for his tendency to bounce (and bump and touch and jostle and squeeze and pinch — the child’s need for tactile input is never ending). Put the two together, and it’s me acting as referee for about 7/12 hours a day.

Still…it’s lonely without them. And for all the fuss, for all the singular desire to just be alone without someone pounding on the bathroom door (what is it about kids and not allowing Mom to use the bathroom?), for all the days when it takes 2.5 times the normal amount of time to get anything done, I cannot bear the thought of so many days without their sunny smiles, without their hugs, without their voices calling me “Mom.”

It’s just one of those things you don’t think about in the mad dash to end a marriage. It’s the “ping” in your heart, hearing the door slam on the car that takes them away, often eagerly, as they zoom off with parent who provides all the fun and games. And I don’t think it’s ever going to go away.

Maybe that’s a good thing.

Greetings!

Welcome to my blog. I started it because I needed a space to respond to this Information Age, a place where I can pour out all the smart aleck and snarky things I could never get away with in front of a class or around other not-so-mad moms and dads. The absurdity of being a parent today, coupled with our current society's education paradox (i.e. wanting the best education for our children but not willing to treat teachers like the professionals they are) provide topics too tempting to ignore. (Plus there's that presidential race coming up...hello, Class of 2008!)

So, pull up a chair and make yourself comfortable. This Mad Mom's got a few stories to tell.