I can't say I've been a good girl this year. Let's just say my house has been cleaner. I can't even remember what the flooring looks like in that room with those big laundering vessels. I've been horrid about returning phone calls. Unless one has a Dr. or Pr. in front of their name and an RN, MD, and MS after, they may wait weeks for a returned call. I forget about play dates for my neurotypical kids. I've abandoned polite society, so it seems. Time previously spent executing thank yous on expensive stationary is now spent on food preparation. Turns out my son Noah is sensitive to just about everything one can buy at the grocery store. Yes, even rice. Your standard cracker. Juice box. I have to make everything he ingests from scratch with my own two hands. Huge learning curve for someone who considers Starbucks a food group. Kind friends bestowing birthday gifts upon my children are lucky to receive a thank you text. I've let my daughter down. My mother spent countless hours teaching me the merits of fine manners. How to place a napkin on my lap, what fork to use for each course, the purpose of a finger bowl, locking ankles. Mads can dissect a nutrition label like a home economics teacher but not many 7 year olds are really into that. Many parents of other 7 year olds find it downright annoying. They don't like when someone else's know-it-all kid tells them about the dangers of high fructose corn syrup (especially if you are trying to conceive!). As you know our baby Liam is now 3. I don't really know him. I know he likes Mario and Thomas the Train, but for the most part, he's a stranger. I don't have much time for him. I yell more than I should. At the wrong people. Have I mentioned my husband? When he's not working to put a roof over our heads and pay for the extra $2,000 a month we need to pay for autism "basics", I expect him to fix everything, listen to every word I say, pay the bills, follow up with the doctors, keep a spreadsheet of our biomedical practitioners, treatments, and data, run the day to day operations of our LLC, as well as manage a non-profit we are forming with other affected families. All these things he must do or the yeller comes out. Santa, between you and me, I hate the yeller. She scares me. She's so...mean. But, still--I get her. We've got no time. The clock is ticking. Everyone must fall in line. Why won't the people with brains that work, listen? If it's not about stopping the medical problems ravaging our Noah's body it gets relegated to the back burner. So all things mistakenly labeled as autism first, everything else in life, after. I would say second, but that would infer I prioritze outside the realm of autism. I do not. Doctors, doctors and more doctors, therapists, protocols, nutritionists, researchers, diets, purchases, phone calls, appointments, conferences numero uno. Everything else, last. I wanted to put my best foot forward this year Santa, I really did, but--in a world full of posers (yes, I am over 40 now) I just wanted to be honest. So, despite my rotten showing this year, here is my list. I hope you'll consider what I've been going through.
Sleep. Could you please bring me some?
Relief. For Noah mostly. For the rest of us, too. We all have those dark circles and that general sadness about us. I never expected life to be perfect, but still, it seems the little ones are suffering so. How much character does a 3 year old really need?
Please send Autism, Oxidative Stress, Inflammation, and Immune Abnormalities edited by Abha Chaunhan, Ved Chauhan, and W. Ted Brown to every resident entering the world of medicine. If they treat children on any level they MUST read this book. Otherwise, how will they know what is happening in these kids' bodies? And Santa, on a side note, why do you think I am the only one asking for this? Given the pandemic of chronic childhood illnesses on our hands I cannot imagine why more scientists, researchers and doctors do not have this one at the top of their list. I guess Rolexes (Rolexi?) are very popular this year.
You know how the notion of "too big to fail" really took off with all the bail outs these past couple years? I need your help popularizing another saying: Too powerful to tell the truth. If you could include that saying along with your government and it's pharmaceutical backers in loopy festive lettering beneath, on every package you place under the tree, I would be so very grateful.
For my divorced friends, both men and women, could you please prevent their unscientific ex-spouses from playing "catch up" with their shots and feeding them fast food out of spite? I guess, everyone has to do what they think is right, but these part time parents do what they feel like in the course of 72 hours, and then, seeing the affects, leave town. Of the many tragedies of autism I await daily in my inbox, this one seems particularly dark as it is a blatant attempt to use the child to hurt the parent. Everyone suffers, most of all the child. Physically. Emotionally. Academically. You know the courts are relatively useless when it comes to this sort of thing. If you can fly around the world in one night, surely you can tackle this.
Patience. Santa, I hate to be gluttonous, but, could I get an extra helping, please? Every time I take Noah's labs along with my dossier of studies to doctors they open the materials, sift through the pages, pat me on the shoulder and give me a soft glance meant to convey sympathy. It's really condescension. I ask them to have a look. A lot of compelling studies in that binder. Times are changing. I tell them it's like trying to keep a lid on a pot that is boiling over. They listen to me and say they wish I discovered all this sooner, maybe I could have gone to the VICP and gotten the justice I deserve. Because, "...don't you know, Mrs. Goes, the VICP is designed to bring swift justice to the remarkably few families who suffer as yours does." I explain several of my esteemed colleagues have been through the VICP, and even those who've won their cases would not agree with that statement. The 83 Canaries would not agree with that statement. I am told I am "understandably passionate." I explain I am most often told that when the professional to whom I am speaking does not fully grasp the complex immunological, inflammatory and metabolic issues present within autism. That's when they tell me our time together is over. I ask them if they have ever reported an adverse reaction themselves as I am ushered out, but they are waving me on as they exit to have lunch with their pharmaceutical reps.
Discernment. While driving with Stranger Baby Liam yesterday, he asked me why The Angry Birds are so mad at the piggies. I said, "Remember? They took their eggs and scrambled them." He said, "Yeah, but, can't they just go to the store and get more organic eggs?" I replied, "No buddy, the eggs were their babies. Not just eggs. They were special to the birds." Long silence. "The piggies...scrambled...their babies?!" "Yup." I said. He pondered what I'd said, turned the game off and whispered, "sickos." I did NOT say, "Just like that overly sweet and unconcerned pediatrician did to your brother. Her unwillingness and inability to recognize Noah's genetic predisposition to environmental toxicity scrambled his immune system and his metabolic processing so nothing knows how to work right. All the right messages go to all the wrong places in his brain and central nervous system." But it was right there on the tip of my tongue. He's a smart kid, that Stranger Baby Liam. He knew it was implied. Our most frequent house guests are other activists. He soaks up every word we say (and shout) like a sponge. Clearly, in retrospect, telling him about the egg babies was TMI for a 3 year old. Please, with everything our children have going on in their lives, do not let me burden them further.
Protection. For my sister scientists and brother researchers and for all the other activists. For all the parents seeking health freedom and treatment for their sick children. These people have come to represent consistent, pragmatic excellence to me. My dear friends have had their jobs threatened, their bank accounts depleted, their spouses leave them, their friends and families abandon them. As Stephen Barrett http://www.ageofautism.com/2010/01/tribune-watchdog-or-tribune-skunk-part-1.html and his pharma-financial backers systematically pick off all the good doctors one by one, state by state, it's getting harder and harder to keep the faith.
Good Advice. I will say, despite our community's rather trying and horrific year in the press, the courts, and public opinion in general, individual activists seem to be gaining a foothold. Parents know they are being lied to and the increasing rigidity and lack of logic on the part of the CDC and other public health institutions has sent thinking parents to our doorsteps in droves. They listen carefully. They actually read the science. They watch, The Greater Good. Then they come back with this: Well, you know, all it's going to take is for autism to happen to the kid of a really rich guy with real power and it will change everything for you guys. Uhm, no. The really rich folks with affected families know. The thing about environmental toxicity is that it does not acknowledge class barriers. Race, creed, or color, either. Chronic dynamic encephalopathy is an equal opportunity destroyer if the genetic predisposition is present. Rest assured, among the privileged classes many chronically ill, ASD children exist. But how, Santa, how do I explain to these poor seekers who have already jumped through so many hurdles to meet me halfway, that these folks value their money, power, and lifestyle more than their children? It's a stumper, I know. It tarries the line of conspiracy theory once you start explaining all the murky legislation and back door dealings, and once ya go there, ya lose 'em again! No one wants to believe that real evil exists in the comfy cozy world of moral relativity. The great social thought train that has delivered individuals, organizations, and corporations from the burden of personal responsibility. I know you'll have to think on this so no rush if you can't have it to me by the 25th. I've grown accustomed to waiting.
A Miracle. Noah is not well. Which is why, as he ages and becomes increasingly verbal, it is so very hard to watch the suffering he endures everyday. Take this morning for example. He arose at 4:30 a.m. He emerged from his room, stripped naked and jumped on top of the kitchen island. He ran in place with his arms out stretched for about 45 minutes on the ice cold granite. As he did this, he screamed. For 45 minutes. With a house full of sleeping people. At 4:30 in the morning. Intermittently throughout this process, he sought out my eyes, looked into my soul and said, "Stop. Please?" The sweetest lilting please, like a typical child requesting one more piece of candy. "Please Mom? May I have just one more?" Only in Noah's case, it's "Please mom, can I get a rest? Please mom, stop my arms and legs. I am cold. I do want down. I don't know why I kick you in the face every time you try to get me off this thing. Why am I doing this? I just wanted sleep this morning but my body woke up and started doing this to me. Please, make it stop." It is knowing he is there, that he is cognitively present that is often the most unbearable. We are in a holding pattern with his care, on waiting lists that discourage and depress me. So very few physicians understand that autism is medical. It is not the poop on the walls, the sleepless nights, or even the constant efforts at escape that will get me. It is bearing witness to the perpetual and needless suffering of my precious and innocent child. That, Mr. Claus will surely take it's toll upon my weak and feeble soul. Do what you can, please. I know miracles are not necessarily your specialty but a little back up can't hurt.
Lastly, I would love a holiday week free of autism wanderings, abuse, accidental death and murder headlines. That would truly be a Christmas to remember. Thanks for listening Santa. If you can kick down with anything on my list of requests (paying particular attention to the miracle) I promise I will get proper thank you's out consistently. I will teach my daughter proper manners, tend to the Stranger Baby, and I will even attempt to squelch the yeller. No guarantees on the housework.
LJ Goes is Managing Partner of The Misuta Project, L.L.C and Executive Board Member of The Illinois Canary Party