Thursday, December 24, 2009

A Village

To Linda Dann

There’s a picture in my mind: a sturdy golden haired child, about three years old, stands on the grass of a sunlit playground, one hand pushed as far as it will go into his mouth, while the other tugs at his earlobe. This was my son, Jeremy, who is now almost a man, at 19, lean and handsome.

I used to ponder, engaged in the toughest task I had ever undertaken, that probably no one would become a parent if she really knew what the job would entail. Fortunately for the continuation of the human race, however, no one would ever believe it if you told her. We all remain trusting and blissfully ignorant, sure in the knowledge that it has all been done, albeit with varying degrees of competence, countless times before. So looking down at the tiny helpless being entrusted to us, splayed like a starfish and wriggling all its four perfect limbs, we feel nothing but love, and the certainty that we will puzzle it all out. And should we hit a snag, well, there are always the countless doctors, experts, and even family wisdom to fall back on.

We imagine ourselves as part of the largest village: parents, but for some, bringing up a child can be the loneliest endeavor of all, and all of the accumulated wisdom in the world does not seem to apply or even to be available to us.

When people don’t understand a phenomenon or the feelings it invokes in them are too strong, they prefer not to see it. This was true of the difficulties presented by my son, who had inherited some pretty heavy neurological baggage: Tourette Syndrome, OCD, ADHD, and most likely bipolar disorder, from my family. Instead of recognizing and treating these disorders early on, however, my son’s doctors and teachers and the community around us seemed invested in the idea that, in the words of one clueless neighbor, my son was simply a “bad apple,” with parents who had caused his problems by inconsistent or absent discipline.

Family elders shook their head, and people in the supermarket shamed me, demanding that I silence my child. The implication was that I in particular, the mother, must be responsible, and of course, genetically I was, so I carried a heavy burden of guilt.

I scrupulously examined my own behavior, and read books on childrearing that I can still find on the shelves around me, though the child has grown. We went to therapists, and applied behavioral methods as elaborate as plans for the invasion of a small country, all to no avail. My son refused to have bowel movements for weeks at a time, refused to eat (lest he have bowel movements), seemed never to sleep, and would rage and cry uncontrollably, apropos of nothing at all.

At the same time, he was frequently a happy little chap, athletic and popular with children his own age, full of energy and charisma. It was not until Jeremy was about seven years old and had developed his first obvious tic—a dry cough that would not go away—that a doctor paid any attention at all.

The cough had begun as a lung infection, so he was treated by a specialist and spent hours on a contraption designed to open his airways. But when the infection subsided, the cough persisted for years, and the steroids he was given by a doctor who suspected allergies caused sustained rages, screaming, violent fits that scared us silly. It would not be the last time that the “cures” doctors prescribed turned out to be much worse than the disease they were intended to treat.

It was not until I begged the boy’s doctor for a referral to a psychiatrist that we finally got a diagnosis of Tourettes. By then, he had the complex arm tic that still surfaces to this day, rippling up from the lower arm to the shoulder, which he would quickly flex like a chicken wing, and the doctor immediately noted it, referring us to a support group sponsored by the Tourette Syndrome Association.

We wept tears of gratitude to know that this problem had a name. Anything with a name has been studied and categorized. Treatments most likely exist for it. Most importantly, we were no longer alone or to blame.

Listening to other parents unburdening themselves at the support group meeting, we learned that others had even less support than we did. Other parents and even family members shunned them and their children, and many had no access to medical insurance. One parent went to 15 doctors before the last finally correctly diagnosed her son.

I took away from this that it was essential that one of us at least become a scholar of the disorder, that we turn our academically trained skills to archiving the latest research on Tourettes Syndrome and the other disorders our son had been diagnosed with, so we could request the latest medication or therapy.

There should be no reason for this. I myself have correctly diagnosed the disorder, and it is not all that uncommon either, but doctors tend to know almost nothing about it, and parents like me have taught them all they know. If I had ever harbored the belief that I could rely on experts, I gave it up now that my son’s education and medical treatment, as well as his social wellbeing, depended entirely upon my own advocacy.

I wrangled on a regular basis with teachers, the principal, the district, who insisted simultaneously and entirely irrationally that our son, intelligent and articulate as he was, didn’t need any special services, while they at the same time complained that he was unmanageable. One teacher, when he was in second grade, a narrow, biased woman seemingly returned from retirement solely to torture our son, left him in a corner facing away from the other children in the class for two months, except during my weekly visits as a volunteer, when he sat as the others did. I only learned about it when another volunteering parent told me, and then I demanded that this treatment stop. It was only threat of legal action that worked to stop it, but by then, the child was despondent, even saying he wanted to die.

I consulted the Internet, and joined a parent support group. That proved to be the best thing I had ever done, both for my son and for us, for it was in other parents that I found the most solid and generous source of advice, information, wisdom, and support, as well as much needed friendship from people who well understood what we had been experiencing. There were thousands of invisible others in cyberspace who had to deal every day with their children’s (and sometimes their own) irrational obsessions and bizarre symptoms, like a friend whose brilliant daughter, gifted intellectually and artistically, insisted there were gremlins in the toilet, or the parent who was several times almost killed by her psychotic child.

We learned how lucky we were to have a child with comparatively mild symptoms, to be capable of advocating for our son, and to have insurance and access to a doctor who recognized the disorders our son had. For the options available to the poor, uneducated, and uninsured are shockingly few and far worse than inadequate, bordering sometimes on the criminal, with children as young as 10 sometimes sent to juvenile hall for exhibiting symptoms of neurological disorders they cannot control.

Though the world has changed in myriad ways since my 93 year old father first exhibited signs of severe Tourettes as a child and was completely abandoned, placed in a charity hospital for months at a time without visitors because people feared non-existent contagion, and thrown out of school for his bizarre outbursts, things haven’t changed much for some. Parents are still often offered no assistance paying for the very expensive medications the children need (and which still, unfortunately, often return uncertain benefits), given no respite to regain their own spent energy. I have seen such parents turn their children over to the state in the mistaken belief that this will get the children the help the parents themselves could not afford. Indeed, in the years I have spoken to parents on TS-Parents group on Yahoo, these problems have seemed to proliferate, not lessen in both frequency and difficulty.

Yet at the same time, for many, there is hope. I speak with old friends from the difficult early days, and learn that their children, like mine, are finding their own ways in the world, are going to college, as my son is, working, having families of their own, learning to cope with their own disorders.

It is at those times that I think of the best and most loving community I have known—the fellowship of parents with children like my own, who have had to fight for their wellbeing, and now turn with generosity to others struggling up the same rocky path. I strive to be one of those parents. Now I pass the mantle to you.

6 comments:

Anonymous said...

BEAUTIFUL!!!

Beth

Robbi said...

Thanks Beth. Merry Christmas.

Lou said...

A lovely tribute, full of hope.

Robbi said...

Thanks Lou. I hope the anthology publishes it.

marly said...

Ah, yes. Sums up a lot, Robbi. A good job all around, on paper and elsewhere. We struggle and do what we can, we little people, and that in the end has a certain nobility.

Robbi said...

Yes. We know we've done the best we can for those who depend on us. But I should have said more about our wonderful advocate, my friend Linda, to whom I dedicate the piece. She wrestled with recalcitrant school psychologists by telephone and letter, and wouldn't take a cent for it. Still, she liked the piece, and appreciated that I dedicated it to her.