Friday, January 13, 2006

Indigo Films, Black Phones

Yesterday the New York Times ran a feature story on the launch of a new film, The Indigo Evolution, that touts the indigo child thesis—that kids like ours are special intergalactic or interplanetary messenger souls sent to the Earth to save the planet. Our children and their disruptive behavior will shake up the system so significantly that the world will be saved from the death spiral it is currently swirling in. Or so this narrative goes.

Back in November 2005 ABC's Good Morning America featured the indigo idea in the soft launch for the film. This film company has clearly conducted an exceptionally effective public relations campaign. And fortunately MOM-NOS gave us the heads up about another film on this topic about a month ago. So even if the indigo children aren't coming, as has been claimed, the indigo thesis is gaining traction. One wonders whether to give this topic additional airtime in our blogs, but since it's definitely not going away, I guess I must address it.

My first encounter with the indigo child thesis came in the dark winter of 2002. We had just decided, after a year of turmoil, to see a psychiatrist and perhaps pursue psychopharmacological interventions for Sweet M. and family therapy for all of us.

It was just a few short months after the airport terminal disaster, and M's meltdowns had continued on, increasing in intensity. They were, at this point, a source of real physical danger—such as the morning she discovered that her father had made the coffee without letting her count the scoops of coffee. (Counting the coffee scoops was one of her rituals that had to be maintained for there to be any sort of household equalibrium.) He'd gotten up before her, and just had gone ahead and made the coffee. When she saw the coffee was already dripping she grabbed the carafe of hot coffee and threw it to the floor, with scalding hot coffee and broken glass swirling out around her little bare feet.

One evening Sweet M. was sitting on the living room sofa with me. She was just about to turn five. She turned to me and with a bereft look said, "Mama, I hate myself."

Stunned, I asked, "Honey, why would you hate yourself?"

"Mama, I have to call on the black phone."

I could not have been more stunned. The black phone was the phone in the St. Thomas airport where we'd had that spectacular social catastrophe. By now it was the middle of October—it had been two month since the black phone incident—and apparently she'd been thinking about it ever since. She'd mentioned the black phone once or twice when we were on vacation, but not since we'd been back in New York. Apparently she needed to go back and get it right—she needed to go back and make a call at the too-high pay phone in the St. Thomas airport.

Could anyone doubt that this was agony for her? Could anyone doubt that this sort of obsessive thinking is a form of illness?

We had already begun exploring treatment opportunities at the NYU Child Study Center—we were considering participating in an ADHD clinical trial so that we could afford treatment. The Child Study Center can be excellent, but it is not inexpensive, and our insurance at the time was completely inadequate with regard to so-called mental illness. But with this—with Sweet M's obvious plea for help—we escalated our efforts and made an appointment with a psychiatrist immediately. She started on Zoloft, which did not work for her, near the end of November. Then in December she switched to Paxil, which despite my concerns about the instability of the liquid suspension formulation, I credit with saving our lives.

After the airport terminal disaster, after months of screaming and obsessive behavior, after hearing Sweet M. tell me that she hated herself for her obsessive thinking, and, of course after the events on 9/11 in our neighborhood, I was in a very dark place.

A friend urged me to go see a spiritual healer, a reiki practitioner, whom she said could help me. At the end of my rope, I had little to lose except the rather expensive hourly rate. And in all fairness, I would say that this person did do something to help buoy me, though whether through "reiki energy" or simply listening to my troubles we'll never really know.

But then one day I reported to this woman how thrilled I was at how well M. was doing now that she was on Paxil. Her speech therapists were amazed with her language progress. Her tantrums had almost disappeared. I was so relieved. She looked horrified and exclaimed, "How could you do that to her? How could you poison your child like that?"

I stammered something.

"You," she said, "Have an indigo child. You have to protect and nurture her."

Needless to say, that was last time I saw this individual.

Of course I can't deny the appeal of the indigo-child thesis. It is certainly very seductive to imagine that Sweet M. is not disabled, but that she is actually special—not as in needing special education, or special services—but as in being gifted. How lovely it is to imagine that she is just as valuable—maybe even more valuable—than a neurotypical child. The aching appeal to one's parental narcissism is obvious.

The danger of the indigo-child thesis, as MOM-NOS points out, or of the certain anti-psychiatric elements of the left, as Toby Miller and Marie Claire Leger point out, is that these versions of reality can cast parents like ourselves as evil drug pushers, rather than as parents who are doing abolutely everything we can to help make a home for our children in this world.

When we struggle to make meaning of the nature of our conditions as parents of children with these neurological differences and behaviorial challenges, it is critically important that the meanings that we spin—whether a new age tale of interplanetary messengers, or the political story of the FDA and CDC asleep at the wheel as big-pharma poisons our children with thimerosal, or the social activist narrative of neurodiverity—don't interfere with our children getting everything they need to thrive.


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12 comments:

Kristina Chew said...

I was glad I read Mom-NOS on the Indigo Children before that Times story--the intergalactic and crystal references quite invalidated it for me. As for "protecting and nurturing" our children---how we rack our brains and finances, out public reputations and a lot more to do this!

Like sweet M. and that black phone, Charlie has all kinds of objects in his head--a red spot of paint, a purple dinosaur, a brown coat his grandfather wears--and he can get stuck on these to the point that the colors don't matter, everything seems just a hopeless beige. In some narratives--contemporary cultural myths--I suppose Jim and I would be cast as "harsh proponents of cold-hearted and cruel behavior therapy" for Charlie, in addition to the pill-pusher business. We prefer not that he spend his time walking around with one blue glove and bucket of photos, but that he learn to dry the dishes, to read, and to stop at the sidewalk's edge.

And yes, we have decided that it is "better" and maybe best for him to learn these mundane tasks and keep his feet on the ground--because he is freer. For Charlie gets that sweet peaceful look on his face when his days are varied (within certain limits) and full of different experiences and colors.

MothersVox said...

Oh Kristina, I know just what you mean. And it is especially difficult when the range of differences for children on the spectrum is so great . . . from so-called classic Kanner autism that dear Charlie has been Dx'd with, to the PDD-NOS, etc, etc, that make up sweet M's Dx's.

It's easy for someone who has never had a child lost in an obsessive thought pattern or slamming his or her head, or pouring steaming carafes of coffee on their feet to think that ABA is cruel, or that neuroleptics are poison.

Even I had, at one point when I was less informed, talked about neuroleptics as "psychiatric shackles" . . . but only because our little M was completely knocked out by them . . . we tried two neuroleptics that left her sleeping 8 and 10 hours in the day, so obviously it wasn't right for her, while these medications seem really to help your dear Charlie.

Last week I went to a set of lectures on ASD by Melissa Nishawala, the new ASD specialist at NYU Child Study, and Betty Sokal, an SLP who set up the first public school classroom for ASD kids in northern NJ. When Sokal was talking about ABA it sounded so harsh . . . so dominating . . . and I was thinking about your little Charlie and my eyes were welling up. I even asked her what her affect would be when she was making directing a autistic child because her demonstration of her directives sounded so cruel.

But from your descriptions it doesn't sound that Charlie's ABA is harsh or cruel or mean, as in the critiques of Lovaas (though his early research record is rather appalling). It sounds, from your descriptions, as though it is vital for Charlie.

These are some of the difficult issues for those of us with kids in or near the spectrum . . . deciding what parts of neurotypical culture we want our children to have access to . . . And what parts we don't care about. And what means we're willing to pursue to get there.

Not long ago I was at an event and afterward I was talking with someone (who doesn't have a child in the spectrum) about how much (or how little) we are willing to shape M's behavior and how much we want to allow her to unfold in her own way.

The man I was talking with said, well, I guess it's a bit like circumcision . . . if your culture and your traditions require a clipped foreskin, you have a Bris Milah. It is not an autonomous decision that the child gets to make, or gets to unmake. In some sense it is not even an autonomous decision of the parents if they wish to raise their sons in the Jewish faith.

In our culture, in dominant NT culture, eye contact is required. And a certain level of cooperation, and even compliance, is necessary. Whatever our childrens' autism gifts are, they need to be able to bring them to others . . . they at least need a passport to the land of the NT. That is what you're giving Charlie. And I am completely inspired by your efforts.

Anonymous said...

Liz here from I Speak of Dreams. This comment is in place of a trackback--I quote from your post in mine, here:

Delusional Parenting: Indigo.

The worst part of the new age crap is making parents of challenging kids feel bad.

Bonnie Ventura said...

You wrote:

"Could anyone doubt that this sort of obsessive thinking is a form of illness?"

Please don't take this as a personal criticism, because it is not intended as one, but yes, there are many of us who do not consider this sort of thinking (which is very common in autistics) to be a form of illness.

This issue was discussed in a recent thread on called "The Social Burp" (it's in the members-only general area, so you'll need to log in to read it). To sum up, many autistics feel momentarily distressed when experiencing flashbacks of unpleasant social incidents. Most of us learn to shrug it off, reminding ourselves that it's in the past and doesn't matter. A minority suffer from severe distress that can trigger self-injury, and medication and counseling can be helpful.

I don't know which group M. falls into, and again, I wouldn't presume to criticize your decision. As parents, we all make the best decisions we can make with what information is available. I am leery of drugs because the pharmaceutical companies don't give out enough information (as you mentioned in your post about liquid Paxil) and they haven't done long-term safety studies with children.

(As for neuroleptics being "psychiatric shackles," they are in fact commonly described in institutional jargon as "chemical restraints." Not to say that they are always used as such, but it does happen sometimes. More information on that can be found at the
website.)

We live in primitive times. I expect that in 30 years or so, doctors will routinely sequence each baby's genome and will be able to prescribe individually compounded medications that can prevent many problems before they occur, with no side effects, instead of today's hit-or-miss prescribing.

Bonnie Ventura said...

Sorry about the messed up link -- it looked OK in the preview! Can you edit to fix it, please?

Bonnie Ventura said...

I should mention that the websites I was linking to (so that you can put their names back into the hyperlinks) were Aspies for Freedom (first link) and Autistic People against Neuroleptic Abuse (second link).

I had the websites' names typed into my comment in the proper format, but they both disappeared when I posted it. Very weird!

MothersVox said...

Hey Bonnie, Sorry that I cannot fix the comments posts. I'm not sure if this a shortcoming in my knowledge of blogspot, or of the blogspot interface, but I couldn't find a way to fix the code.

Anyway, instead of trying to fix it, I commented on your comments in a new post, that you'll find in the main body of the blog!

Thank you for your thoughtful post. It's important to stay on our linguistic toes!

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Anonymous said...

I know that this is forever ago, but I re-encountered some of this "indigo" fad today, and it had me scrounging up everything on the interwebz that I could find to deal with my frustration.

My husband is on the spectrum, as is my cousin. I have spectrum-y qualities, but my issues lie primarily in Generalized Anxiety Disorder and MDD, so I'm not actually on the spectrum.

But I've worked with a lot of children who are (I work in a theater program for aneurotypical kids). And when we have children, it's more than likely that he or she will be mildly autistic.

It's painful having urges that you can't control. Remembering catastrophes and replaying them in your head and not being able to stop thinking about it. Needing to go back and do it *right* this time. That was how my anxiety manifested itself, and how autism can manifest itself in many cases. And it is excruciating. But my parents, thank God, had both been in therapy for several years before they had me (I personally think everyone should see a therapist - who doesn't need to talk to an unbiased party now and then?). They didn't coddle me or tell me that I was perfect or act as though it was okay when I threw a tantrum. They were sympathetic, because they knew I was miserable, but they said that I couldn't let the anxiety control me - which is the hardest and most important lesson I ever learned.

It breaks my heart to see these children that I work with have such difficulties in school and with friends, while their parents deny any issues and pretend that they're doing perfectly well. They teach these kids that they're better than other people, and while it gives the children a sense of arrogance, it also makes them feel supremely disconnected from everyone else. They are taught that no one else will ever understand them, and that they alone are special snowflakes. It isolates them, and sets them up for a life of martyrdom. I don't know about you, but I don't want my kid to be a martyr. Crucifixion is hell of a way to die.

If you think you have an indigo child, good for you. Now shut up and fer-gads-sake don't say anything about it to your kid.

Thank you so much for posting this, as well as your "black phone" story. It made me cry, and reminded me that none of us are alone in this. I'm glad Sweet M. is doing better (at least at the time of this post), and I'm sure she will grow up into a wonderful human being.

Thanks.

MothersVox said...

Hi Anonymous,

Thanks for your comment! It is so gratifying when things that we went through in years back are useful in any way to readers today.

The indigo children/crystal children explanation has a lot of problems -- you point out one of the biggest ones! -- and still I understand why parents would want to believe this. It's easier than the medical/psychiatric explanation that suggests that they're damaged.

If you have to pick between special angels sent by the divine and damaged DNA or vaccine-injured, special angels feels a whole lot better.

I'm agnostic on all of it -- who really knows? -- but your analysis of where the logic of it takes you is super important. Thanks for sharing that here!

With all best wishes, and thanks for your work with kids on the spectrum!

mv.