Last week I packed up my three small children, Madeleine, Noah, who suffers from autism, and Liam, along all their accouterments, in preparation for a busy day. Our first stop was the drive through window at Starbucks. As we pulled up the mom of one of Noah's classmates was preparing to end her shift as a barista. This woman left her corporate job several years ago to be a stay at home mom. Of course, that was before she knew her oldest son would suffer from a debilitating neurological disorder and her youngest would get autism. Despite her precise demeanor, professional mannerism and acumen for business, she now serves lattes so her family can have access to medical benefits. She tells me her eldest was just hospitalized for an "episode". Thanks to Starbucks, she will be paying $3,000 of the $45,000 her son's stay in the hospital cost their family. She's not sure if or when, he may need to be hospitalized again. I don't know her that well but I can tell she was probably the life of the party back in the day. I like her. We chatted briefly about our children's teachers, therapy, and speech pathologists before we were off to the park.
Once there we happened upon one of Madeleine's playmates from her old school, and her aunt. Quite randomly, and in keeping with the idea that God has a tremendous sense of humor, the aunt told me about a course she teaches in nursing. She recently had her students write papers debunking Jenny McCarthy's, "goofy theory that vaccines cause autism". The class delivered, successfully refuting Jenny's assertions. The teaching nurse was very pleased, indeed. I was flummoxed as I thought medical training was about observing and reporting, with a foundation in science--the proving or disproving is the end result of that process. Isn’t that what we all learned in 8th grade science? The sort of premeditation this woman described seemed better suited for a court room than a nursing college. Curiosity got the better of me so I inquired, "Did you know that Jenny McCarthy isn't a medical professional, but rather, a model and an actress?" While Jenny is indeed a lovely creature, I have never heard her claim to be a medical guru. I commented that perhaps, in the future, as nursing is indeed a branch of medicine and medicine a branch of science, she may want to have her students read actual scientific studies for their papers, rather than memoirs by Hollywood personalities.
I suggested Thimerosal Neurotoxicity is Associated with Glutathione Depletion: Protection with Glutathione Precursors Neurotoxicology, Jan 2005. by S. Jill James, PhD [University of Arkansas]. If that study is a bit too heady, there's my all time fave, Hepatitis B Vaccination of Male Neonates and Autism, Annals of Epidemiology , Vol. 19, No. 9 ABSTRACTS (ACE), September 2009: 651-680, p. 659, by CM Gallagher, MS Goodman, Graduate Program in Public Health, Stony Brook University Medical Center, Stony Brook, NY. Although locked and loaded with one more in my arsenal I had to switch gears. Noah began to meltdown in the volleyball pit.
He took off running, headed straight for the pond. He is an incredibly fast runner, especially when he is in meltdown mode. I caught up to him, just barely snagging him by the cuff of his shorts. We both fell to the ground where he kicked me in the face, pulled my sunglasses off my head and threw them into the water. My nose began to bleed where his nails made contact. I carried him back to the car while he pounded my neck with his free hand. Noah weighs 47 lbs. While this happened, the teaching-nurse-aunt stood slack-jawed while my other two played nicely on the monkey bars. Tough for them. Meltdown in progress. Time to go.
As a rule of thumb, I am generally forgiving of folks who think they know everything there is to know about autism, chronic illness, and vaccines. It has been my experience the stronger the compulsion to opine, the more ignorant of the facts, especially for those holding medical certifications of some sort. To harbor anger toward this particular nurse seemed absurd. Anger takes energy, which is in short supply given the physical, mental and emotional demands of my job. Also I can't really bring myself to get angry at a person who has cancer. She can't help it. Most folks in the medical community have let their organizations and affiliations (cancers) do their thinking for them for so long, they don't know how to think for themselves anymore. No amount of logic or non-pharma funded science will convince them otherwise. They know what is happening. Everyone knows what is happening. But if they admit it, they render themselves obsolete. If this truth is allowed to enter the public consciousness it will lead to the unthinkable. Public humiliation. It's better to be safe, keep hurting kids and look away. Burning flesh, family after family, mass genocide...no one saw a thing.
As I secured my children in their seats, the teaching-nurse-aunt did what most folks do; she made excuses for my son's truly horrific behavior. "Oh, looks like he's had a rough day--poor guy, summer can be so tough." she said. Oddly enough, she also looked like she was going to cry, and unless I was mistaken, her near tears seemed to have been for me. I guess watching autistic events unfold can be pretty traumatic for some people. Even so, I will not have others making excuse for my son's behavior. "No," I said, "this is pretty much every day for us." I told her to check out the studies I mentioned, as well as 47 others at Adventures In Autism. She nodded and stared blankly as the kids said their goodbyes and we drove off.
Given the magnitude of Noah's meltdown, I figured the rest of our errands would have to wait. I brought the kids home and prepared an early lunch. "We'll try to help Mrs. Goes but you know (heavy, punishing sigh) we need to know when you are going to make these changes." A woman from the bus company that services Noah's school district labored into my ear. How I look forward to these weekly calls. I apologized for yet another upheaval in his summer therapy schedule and prostrated myself, "Could we please get him on an afternoon bus, after all? I really appreciate how accommodating you've been, and I'm so sorry for the inconvenience." "Well, you just need to be more aware, Mrs. Goes."
Next order of business, the to-do list. Find someone to watch the kids so I can go to my friend's father's wake tonight, get an appointment with the neuro-feedback doctor, update Noah's list of motivators, get to work on his fall IEP, laundry (9 loads), order lab test kits, clean feces off walls in the foyer, the upstairs bathroom, and bedroom rug, make payment for swimming lessons, get car serviced, find fruit and vegetable co-op, potty train Liam, tackle mold issue in the master bathroom, clean toilets, make flight arrangements to see digestive diseases specialist in Texas, fight with BC/BS about getting mito tests covered.
What to do first? Apparently, answer my Blackberry.
"He told me I was misinformed for even questioning vaccines!" my hysterical friend screamed above the sounds of quarreling children in her car. "He said, I will have to find another doctor if I am going to choose a delayed schedule! I don't think he even read the studies I brought him! Can you believe this?" I was really into prioritizing my list and as this was my second call of this nature in as many days, I was not delivering the much desired outrage my girl was seeking. "So, get another ped." I quipped. "He's failed you. He is telling you he is not capable of caring for your kids any longer." "But, it's been 10 years!" She yelled. "People get complacent in marriages and in their jobs, why would you think medicine is any different? He is not interested in doing the work. He had two choices. Read the studies and act, or deny they exist and get rid of the person who knows the truth and might share it with his other patients. He is interested in self-preservation, not healing children. You gotta find someone else." She became annoyed with me here and frankly, I don't blame her. My search for competent pediatricians is unending. Humble requests for appropriate testing on Noah are often met with hostile and immature responses from the most respected physicians. "Now, Mrs. Goes, who told you you need this test? Have you been googling again? That's an awful lot of blood Mrs. Goes, are you sure you want to do that to your son?" After a titre revealed Noah was not immune to polio despite being fully vaccinated for it I requested a titre on Mads as well. The doctor proclaimed, "So after all those shots you want to come back for a blood draw? That seems a bit excessive, Mrs. Goes."
When doctors berate you, they use your real name. When they want you to stop asking questions they don't have the answers to, they call you "mom". "We give these shots everyday, side effects are super rare, no need for concern, mom!" It's a statement designed to assuage your fears and shame you for questioning their superior knowledge. Which, sadly, according to the AAP's own statistics, 54.1% of the American parenting population now knows, is not so superior after all. I listened as my friend quickly progressed through the several stages of grief that accompany a break up and tackled my least favorite task, the laundry.
In addition to the revolving door of therapists we have traipsing through our home on a daily basis we just added a life-skills specialist to the payroll. She starts this week. This young lady will be working on everyday tasks with Noah, doing repetitive exercises, helping him dress himself, preventing him from shredding his food, helping him identify when he has to go to the bathroom, teaching him to hold a fork and a pencil, and preventing him from harming himself or anyone in his vicinity when he gets frustrated. The hard part of this job is the physical labor and the corrective measures required to keep him safe. We live on a pond, one of his favorite obsessions. He likes to overturn furniture, jump on tables, and launch himself off the kitchen island. The extraordinary and constant stress of his overtaxed central nervous system makes it very difficult for him to control his actions. This woman has energy, a degree in special education, and the patience of a saint. I looked around my laundry room covered with sheets and toddler clothes soiled with bacteria-laden feces (a bright yellow, foul smelling sandy substance) and wondered how long she would be willing to stay with us. More importantly, if she can handle the train wreck that is our lives, how long will we be able to afford to pay her?
Sorting through the linens I found a pair of shorts whose original color I could not determine. They were beyond saving so headed out to the hazardous waste bin to dispose of them. Noah's hawk-like senses determined a point of entry had been compromised the moment I turned the knob. He flew down the stairs and appeared behind me before I even reached the bins. Now is a good time to mention that I am 40. I keep hearing 40 is the new 30, but I think that's only true for people who do not have small children. Except for rare occasions like date night or the near-extinct girls' trip, I feel every bit of 40. The garage door began it's ascent and Noah darted past me like Dash from The Incredibles. At the same time, The FedEdx guy approached our cal de sac, driving way too fast. Adrenaline pumping, I dropped the shorts and sprinted after Noah. The driver spotted my flailing arms and slammed on his breaks. I yanked Noah out of his path and carried him back toward the house as he screamed and pummeled me. As the driver exited his vehicle I noticed he was rolling his eyes and laughing. Laughing? Seriously? I asked him in my most polite voice if he could slow down in the future. He held up his open hand and pushed the air down to dismiss me. Just another crazy mom who can't control her kid. When are these spoiled suburban moms gonna learn? He seemed to me the perfect picture of a misogynist. I looked at Noah--laughing, very much alive and beating the sh*t out of me, and convinced myself this guy was not worth my energy, which was quickly waning. I still had so much to do.
Many phone calls, a trashed house and several hours later I arrived at my friend's father's wake. He was a 90 year old WWII fighter pilot, married 67 years. He fathered 13 children. As I browsed the pictures that told his life story my gaze landed on a photo of him and his wife with all 13 kids between them. If they were a modern family, odds are very good 6 or 7 of those children would be afflicted with chronic illness or a life-altering neurological disorder. I paid my respects to my friend, the youngest of the 13, and the 98 lbs. mother of a 235 lbs. adult son with Aspergers. I prayed for her on the way home and filled the soundless space of my car with random thoughts. How I long to escape this situation at times. Life is so much harder than I ever imagined it could be. How do I make it better? Maybe I could pull the car over and sleep for just a few minutes. No, I had to get back.
"Ms. LJ, I got a tarantula!" My neighbor's ocean-eyed son yelled into my open car window as I approached the driveway. "Cool!" I affirmed as he danced around with the massive stuffed toy. His mom took notice and walked over to me. "Hey, glad we caught you, do you have a sec?"
From that point the sequence of events is vague at best. I remember something about a friend on the west side...twins...both developing normally...sudden regression...diagnosed with autism...did I know anyone who could help her? I listened to her speak, her face scrunched up and concerned, as I watched her neurotypical boys running and jumping between our front yards. The heart-breaking reality of Kawasaki disease that hit the proud owner of the arachnid only months before, a distant memory. I listened as she told me her friend was overwhelmed and scared and getting services after an educational diagnosis. Something came over me. Tunnel vision, the sweats, weak knees...So many innocent kids. So many precious babies. So many lies. Everyone pretending it's not happening. After hastily excusing myself I rushed into the house and evacuated the contents of my stomach into the powder room toilet. Wave after violent wave of sickness washed over me as my mind spun out of control reliving story after story of children harmed by the very institutions and people who are supposed to heal them. Images of my dear friend's infant daughter flashed before me. Her tiny little body stiffening and seizing repeatedly after receiving the dtp vax. Unceasing, and unrelenting, that vaccine-induced seizure disorder claimed her precious life. God, I wish I never ever saw the video footage of that first seziure. The palpable rage of an entire generation of American children silenced and injured by greed and privilege swept across my convulsing jaw as my fists involuntarily pounded the floor. Dizzy, disgusted and empty, I leaned back breathing heavily through remnants of spittle. I closed my eyes expecting tears, but none came. Then a strange haggard voice whispered from inside the pale yellow powder room walls, "I am so, so sorry, my precious boy. You needed me to protect you. I just believed what I was told. No questions asked. I did not read the MSD sheets they handed me. I...did...not...read...them. I gave them your life when I signed those papers. I went back, over and over again, watching you get sicker and sicker. Sweet, sweet Noah, please forgive me. You matter. Your life matters and I love you more than anything this world could ever have to offer me. I will spend the rest of my life making it right. I promise you. Forgive me, son. Please forgive me."
I've always considered life a divine comedy of sorts and this moment only reinforced the idea. Beneath my crumpled form lay a pristine copy of Departures magazine. The words, "Global Style, Tom Ford's Tough Luxe for Spring" were emblazoned on the cover, set atop a buttery soft euro-style bomber jacket. Available immediately upon request for the obscenely rich, at a reasonable price of $10,130.00. I often leave the house in clothing I have slept in. A shower is just not a daily certainty. Appalling, I know. It really was quite a spectacular jacket. I flipped open the cover and perused the glossy pages of exotic locations showcasing perfect humans looking forlorn and blissful, like they'd just had or were about to have, the best sex of their entire lives. Man, the services I could get for Noah with $10,130.00. I cursed the insipid, out of touch pharmaceutical lobbyists who actually spend that kind of money on clothing. Then I remembered my life before autism happened, my shoe collection and ridiculously expensive handbags, the traveling that qualified us to receive free issues of Departures in the first place--and I took back the curse. I had a good hard belly laugh at the absurd and noted things are never really what they seem. Finally the tears came. I washed my face, brushed my teeth and headed over to my computer to get the necessary resources to my neighbor's friend. I had work to do. Because at the end of the day (which thank God, it FINALLY was) besides the barf and the wake, this was just a typical day in the life of an autism mom.
Dear Parent of a Newly Diagnosed Child with Autism,
I am so very sorry I have to welcome you into our vast and quickly growing club. Please visit www.canaryparty.org and get yourself up to speed...
LJ Goes is Managing Partner of the Misuta Project, LLC., a Contributing Editor to Age of Autism, and Executive Board Member of the Illinois Canary Party