Learning and Living on the Journey

My son has been having a tough time of it lately and I mean, really tough. We're addressing it from a number of fronts---educational, medical---Jim and I love him dearly and seeing all that Charlie's been going through and figuring out how best we can help him have been very painful processes. Charlie's teacher has been doing everything she can, and we're just grateful that she is his teacher. Anyone but her at this moment and we don't know where Charlie would be.

What Jim and I've been feeling is not at all unfamiliar to parents of kids on the spectrum. Things start happening, the school starts calling not intermittently but regularly. There's a whole plethora---a veritable cottage industry----of "what to do after the diagnosis and beyond" type books; the latest one in this genre that i've been going through is The First Year: Autism Spectrum Disorders. It's organized into days, weeks, and months, to be a "walk-through" guide about "everything you need to learn and do" by a "parent-expert," First Signs founder Nancy D. Wiseman, Each chapters is divided into "learning" and "living" sections, with the intent of giving a parent both "how-to's" and information, and also "actions to take and perspectives on the journey" (xviii). As Wiseman notes, the reason for this "book of days" structure is meant not so much to be a schedule that you must follow for your child; the chapter titles are "really metaphors for the process of discovering what you need to know about autism and prioritizing your actions, no matter how long it takes" (xvii-xviii).

I've long thought of, and described, life raising my son Charlie as, indeed, a journey. It's not to be done as a series of sprints; it's rather a marathon, or, indeed, one of those mega-marathon-triathlon-test-your-Herculean-endurance kind of experiences. It's not a race: We're all on this long road together, and some will get to certain points much more quickly, and with fewer obstacles---mud puddles, bends in the road with signs that make no sense, hills and rocks and poison ivy, mini-ditches you sometimes only see after you're in them and your shoe is wet down to the sock.

Jim and I always try to keep Charlie moving, regardless, and to keep motoring ourselves. I guess you could say we've currently found ourselves on a part of the road that's sorely in need of being repaved. It's rife with potholes and there's bits of suspicious gravel everywhere. There's signage, but just arrows, and no indication of where we're going, of the distances we have still to travel. And it's not only uphill, but it's getting steeper and dustier (which is a big problem for me with my contact lenses).

So we know how it feels when you've your back against the wall and have to do "anything" to help your child, be they unsubstantiated "treatments" like the use of the drug Lupron, or testing that causes a lot of discomfort, or educational protocol that mean you have to turn your household inside out. The suffering and worry of parents of children on the spectrum described in the recent Chicago Tribune article about Lupron are not simply familiar Jim and me. They're feelings we find ourselves wound up in again and again, as Charlie has gotten older and his challenges and abilities have become more apparent.

Learning more about Dr. Mayer Eisenstein and his Homefirst Health Services practice in yesterday's Chicago Tribune reminded me of how susceptible we parents of kids with disabilities are. Homefirst delivers babies at home and warns that "pediatricians and pharmaceutical companies are harming children with unneeded drugs and vaccines." Homefirst has also lost a $30 million lawsuit filed by the family of a newborn in a wrongful-death suit:

In court records dating back three decades, the families of dead and brain-damaged children repeatedly alleged that doctors who work for Eisenstein made harmful mistakes -- sometimes the same error more than once. His practice also has been dogged by accusations in court records that its offshore malpractice policy was phony.

Despite this history, Eisenstein has cultivated a devoted following as a family doctor who treats patients from birth to old age.

Homefirst applied for Chapter 11 bankruptcy protection after the malpractice suit:

Last July, the judge approved a $1.275 million settlement that Homefirst must divide among six families over seven years. Eisenstein's practice made the first $100,000 payment last September, four months before he opened the autism clinic.

Dr. Eisenstein created the Autism Recovery Clinic, where he has treated autistic children using Lupron; he is "not board-certified in any of the specialties relevant to autism and the use of Lupron, including pediatrics, endocrinology, neurology and psychiatry." And, he said under oath that he was a faculty member at the Hinsdale Hospital Family Practice Residency Program from 1992 to 2003, while a recent hospital administrator has said that he was "never" there.

Like I said, we know how it feels to be frantic to figure out how to help your child, and to be beyond frustrated when the professionals/consultants/"experts" you turn to simply do not seem to have answers; when you try things and they change nothing, or make things first. Parents of autistic kids are a very vulnerable population. We need make our choices with a mixture of savviness, and extreme caution, remembering everything we've learned, and getting on living as we can.

Not that one always remembers to do so in the heat of the moment, as you're putting one put in front of the other on the long, long road.