Monday, July 21, 2008

I Broke Him, I'm Gonna Fix Him!

Our doctors helped us to break Nick with his vaccines. When we brought him back to them, broken, they agreed that he was sick and called it Autism. They had no idea how it happened and there wasn’t much to be done about it. When I came back to them and told them I was pretty sure vaccines had made Nick sick and wanted to try a Bio-Medical approach. They said it wasn’t the vaccines and DAN Medicine is baloney. Well, you know what? Since they don’t have a better plan… I BROKE HIM AND I’M GONNA FIX HIM!

We are getting closer to our first appointment with a DAN doctor after a year of gentle Bio-Medical care with a Naturopath. DAN stands for Defeat Autism Now, and it has come to categorize a group of physicians who came together about 18 years ago to pursue the medical treatment of Autism. I’ve been thinking a lot about the experiences we’ve had with all of the providers, doctors and therapists, since we began getting help for Nick over two years ago. It has been very hard to know who to listen to. I’ve found that as I grow to understand how complex autism is and how many different avenues of treatment we will need to pursue, the type of doctor I am craving is a Dumbledore; all knowing, all seeing, endlessly wise, kind and good. I want someone who not only grasps all the complexities of autism, but also seeks specifically to know my son. I also want this person to be respectful, educated and curious about treatment modalities other than their own.

We have had a mix of experiences. I asked parents on four Autism Yahoo groups if they had, had similar experiences to ours, and many sent me their stories. Ignorance about Autism is something many of these parents experienced, particularly with a few of the Neurologist’s these parents met with. This is a sad shame because they are often the first stop for a parent looking for a clear diagnosis for their child, and we all know how vulnerable you are at that point. ( A friend of mine describes that time saying “for a year if you said hello to me I would have burst into tears”.) One neurologist told a mother that her son would “simply grow out of autism”, another was told her son’s speech delay was due to having two older parents, and he recommended a number of toys to buy. Sometimes the ignorance is dangerous such as the Neurology Resident who told a family of a four year old, “your son will be defiant and trouble his whole life, you probably caused his Autism and you should not have anymore kids,” proceeding next to discuss medications and institutions. Or the Neurologist who told a parent “your son will be of no use and you should just accept that”, and from a well-respected Neurologist in Atlanta, “the best case scenario for your little boy will be simple math and worst case scenario - he won’t live independently”. That little boy, by the way, was recovered with a Bio-Medical approach and now is thriving in a competitive private school! Ignorant comments are certainly not isolated to Neurologists. A Psychologist told a mother “your son has autism because you are too controlling.” You might think these comments come from the dark ages when ‘abnormal’ children were frequently hidden out of sight in institutions. Not so, frighteningly enough, these comments are all pretty recent!

More common, is the deterrent doctors feel the need to present, about Bio-Medical Interventions with Autism. My son’s Developmental Pediatrician, who has been on the whole, pretty terrific, gave me an article to read on the ‘Dangers of DAN Medicine’ this spring. The article was written in 2002! Many families report that when they tell their Neurologists or Developmental Pediatricians that they are interested in DAN or have begun Bio-Medical treatment, their doctors will no longer see them. One Neurologist, who mistook the PANDAS (Pediatric Auto-Immune Neuro-Psychiatric Disorders) virus for seizures asked “you are not doing any crazy diets or supplements are you?” A Pediatric Gastroenterologist ,upon hearing that a mother was implementing the SCD Diet (Specific Carbohydrate Diet) for her son’s chronic diarrhea, refused to examine him and warned of the dangers of vitamins, telling her “you are nuts to go to a DAN doctor.” A General Practitioner, when told the mother was looking into Bio-Medical treatment said “good for you but I can’t help you.” A Pediatrician stated “don’t take your son to see someone who only wants your money, tries to sell you things, and promises false hopes.” Another Pediatrician, who wanted to add the MMR vaccine as the 5th shot of the day to save the mom a trip, said “parents like you do more harm to your children by believing in that stuff.”

My Pediatrician provided detailed explanation as to how safe the vaccines were when I questioned him before vaccinating Nick. I asked him if he had to vaccinate his kids again, would he do it? He was unequivocal in his answer –yes! When I called him in tears a year and a half later to report that the specialist had diagnosed Nick with Autism, he told me he too had a child on the spectrum! Uh…HELLO!! One afternoon when I didn’t have my seven year old with me, she absorbs everything said around her, I asked my Pediatrician if he had read Changing the Course of Autism by Bryan Jepson, MD. He hadn’t and he wasn’t very curious about it. I told him I found his lack of curiosity alarming given the epidemic rise in Autism cases. A week later he called about a different issue and told me he had bought the book and would read it this summer. I hope he does and I’d love to talk to him about it. Maybe change is coming or maybe I ‘m changing Pediatricians.

It’s terribly hard to feel confident bringing up Bio-medical treatment with mainstream physicians. I would like to think that every one of us, all the mom’s attempting to recover our kids from Autism Bio-Medically are in the room with you when you have appointments like these. I imagine this like the cell phone commercial ,you know the “Can You hear me now” guy, with his enormous team behind him. We are all in there silently standing behind you supporting you.

While sitting on our porch the other night, having a glass of wine, I was amazed at the iridescent sparkle coming off a rock in the moonlight. I decided to take this as a magical sign, that it was the right thing to take Nick to a DAN doctor now. This was probably a combination of the wine and summer heat. But moms with kids in desperate circumstances are familiar with fits of superstition. We wish on the fist star we see or pick up a penny lying heads up, anything we can wish on for our children’s recovery. Outside picking up after the dog the next morning, I realized that my magical sign was in fact a bit of sequin sewn on a child’s plastic purse lying in a neighbor’s garden. I worry my hopes for Nicks recovery from autism are as flimsy as that child’s plastic purse?

I can’t remember if it was Jepson or McCandless who used this analogy; that a parent with a kid on the spectrum is like a parent who can’t swim, sitting on a dock, while their child is drowning in the water. I find this analogy agonizing because I am not good at a lot of things; terrible housekeeper, no good at keeping a secret, and I can’t hit a baseball or remember the rules to most card games, but I am a damn fine swimmer. The analogy goes on to say that the parent on the dock finds a small, thin, worn piece of rope and attempts to rescue the child with it. The thin rope representing Bio-Medical and DAN intervention in Autism. If I can’t jump in the water, I’m going to have to try the worn rope because the alternative is to let Nick drown.

Can you hear me now?

Alison MacNeil