No one has been more raw and transparent in telling the world what autism does to a mother, and a family, than LJ Goes. She lays herself out bare for the world to see.
Autism: Destroying America, One Family at a Time. by Lisa Joyce Goes on Saturday, September 10, 2011 at 8:29am
If there is such a thing, I have the near ideal situation for having a child with autism. When I explained Noah had the "a" word to my husband, Dave, on a sunny and snowy morning two days after Christmas, 2008, his words were, "We'll get through this. Now we know. What do we have to do to get him better?" Of course, neither one of us knew then what we were in for, but that was irrelevant to me. Right then and there I knew it wasn't just me fighting this fight. More importantly I knew I wasn't going to have to fight him. I knew were were a team. We immediately spread the word and our extended families not only jumped on board, they took up the cause as their own. Most of our friends who do not get it remain with us and do not judge. Those who do are no longer a part of our lives, their absence barely noticeable after the initial sting. Except for the excessive wealth required to reverse the iatrogenic effects of vaccine encephalopathy, mitochondrial disease and leaky gut that lay hidden like snipers under the deceptive catch-all term of autism, my life is rather well structured to deal with the reality of a chronically ill child.
This weekend marked the ordination of my father-in-law as a deacon in the Joliet Diocese. This event is big doings for Catholics as literally hundreds of priests and deacons attend the ceremony to usher in the newcomers. Family members and friends are given tickets that represent various levels of importance and each seat in St. Raymond's Cathedral is considered a prized possession. A very big deal indeed, with a weekend full of events that followed. Say what you will about my kind--unarguably, we know how to party. All my brothers and sisters-in-law came in with their families from their various stations across the country for this special once in a lifetime occasion. One by one they trickled in. Rooms set up, bags unpacked, kiddos playing, cocktails in hand, we were all ready to share some much needed quality time together under one roof. Just like old times.
Except, things were different now. You can't use the door off the kitchen to go out for a smoke because Noah can hear that door open from any room in the house. It is a guaranteed 20 minute melt-down that usually requires a bath to re-focus. If you find the itouch on the floor you have to pick it up and charge it. At no time can we have a dead itouch. No, you can't go in the garage to the beverage fridge if Noah is within your sight. He will run to the car, open the door and expect to go somewhere--usually the park, school, or Starbuck's. A bath doesn't fix this one. Someone is getting coffee or going to the park--either way, it is an hour long commitment to stave off the mother of all tantrums. If you are going down to the basement you absolutely positively MUST bungee the gate to the stairs. Yes, even if you are just going down for just a sec. You MUST ALWAYS double lock the front door and top lock it. ALWAYS. Noah can't have chips, strawberries, a doughnut, just one m&m, or just one bite of pizza. No, that juice is not organic. I know it says it is, but that's a lie. A little bit of gluten is like a little bit of heroin and it is in everything. Yes it is. Even that lotion. The play-doh, too.
Our family did their very best in every way. No dismissive eye-rolls, just 100% compliance. My sisters-in-law developed a vigilance over Noah that warmed my heart. I overheard my husband's sister, Laura, randomly telling our guests to make sure they watch their food and watch him to make sure he doesn't get any. How I truly love these people. The problem is, a life with autism is such a departure from regular life it is impossible to memorize all the rules in such a short period of time. I found myself absent from conversations, obsessing over Noah's whereabouts and repeatedly ticking off his biomed schedule in my head. "Did I give him his morning dose of chelator?" What's this about my brother-in-law and sister-in-law moving? "Did he get the Tyrosine or did I forget?" My new brother-in-law is going to be deployed for active duty in September? When did this happen? "Why in God's name is his poop yellow again, I thought we were done with the clostridia?"
The big day arrived and our legions of childcare professionals showed up to assist so we could all be present for the ceremony. We watched from our coveted row as my father-in-law walked up the center aisle along side his beaming bride, ready to accept his sacred post in the Diaconate. Dave remarked on the way home how he had enjoyed the tradition of it all, how proud he was of his dad, what a great thing this was. I guess so. I wasn't there. I was plotting my next move, trying to remember all the points of entry at the reception site. All grandkids were invited to the reception. I changed out of my high heels, dressed the kids, packed Noah's special food and headed to the restaurant. Within minutes of arrival Dave and I were having the usual debate. "No, you stay." "No really, you stay, I got to stay last time..." I insisted I go because it's his family, his dad, and on a day like this it was important that he be there. My good friend Krisan offered to come with, but she stayed back to take care for our other two kids so I could go to the ceremony, so I declined her offer. Off I went, alone, with a stimming, inconsolable and sick 4 year old.
Noah could not stop screaming and he wriggled out of his car seat. This development coupled with his new found talent for unlocking car doors and opening them when the car is in motion has lead me to experience perpetual anxiety while in the driver's seat. Eyes on the road, eyes on him. Eyes on the road, eyes on him. He began thrashing with a ferocious intensity that reached a crescendo of unmatched proportions. Normally, I would pull the car over and sit in silence until he could regulate himself, letting the car seat do it's job. Normally, I would calmly tell him everything was going to be okay and I loved him and I was going to get him home just as soon as I could. Normally, three things: his itouch, his bottle and a balloon, would have expedited his return to earth.
Nothing was working. So I snapped. Not in a good way. Not in a break-through, cathartic way. In a shameful, horrible, awful, disgusting way. I screamed at the windshield like a bloody banshee. Like an institutionalized, restrained schizophrenic, neurotic, delusional crazy person. Because that's what I felt like--like a trapped little rat in a life that was swallowing me whole--and I was powerless to do anything about it. Like someone was stabbing me with a meat cleaver and instead of killing me, each tear of my flesh made me louder, stronger and angrier. I did it over and over and over until I pulled into the garage, appalled at my own lack of self-control. I imagine for Noah it was something like a tween child catching a loyal and loving parent in the act of an affair. All at once realizing their hero is fallen, human and capable of repulsive things.
I scared the daylights out of him and elicited his first genuine spontaneous inquiry. In the form of a complete sentence, thank you very much.
"Why? Why er you screaming, mama?"
Normally, this is where the comic relief, Goes-style comes in. I could hear my husband, "Wow, you scream like you're burning from the inside out and he kicks out some serious language. That's the problem, we should have been yelling like this from the get go. All this ABA and therapy crap, putting us in the poor house. You need to lose it more often babe--you got him to talk--FOR FREE!" But Dave wasn't here to bring me back. He was at the party with the rest of our family. I was sitting with a screaming child in a steaming hot car in a filthy garage. Him there. Me here--with the smell from the poop bucket permeating the car. There is nothing quite so foul as the excrement of diseased bowels. I also just realized I left my daughter, Mads and son, Liam, without even saying goodbye. In fact, my last words to them were, "We are going to have such a great time celebrating CoCo (their word for grandpa) today!" I pictured Liam realizing I wasn't there and saying to Dave, "Where mama go, Dad?" and him responding as he has hundreds of times, "Mom is with Noah." I could see our smart little man reflecting on this. "Mom is always with Noah. Where is my mom? I want my own mom, not Noah's mom."I searched and searched for the humor but couldn't find it. My uncontrollable screams unleashed a flood of disappointment and despair. We sat in the car for several minutes, our chests heaving like two werewolves who'd just returned from the hunt. Something had just changed in me and I wanted to stay strapped down until I could figure it out. The idea of entering my empty house full of remnants of happy house guests seemed utterly despicable.
"I am crying because mommy has nothing left Noah. Nothing left. I am really, really...I guess...tired. I'm really tired."
He started yelling...not an autism yell...more of a singing shout, "Oh Jesus. Jeeeee-sus. Mama crying. You sad. Yooooou sad. Oh no, oh no, oh no, mama cry." The end sounded exactly like Cartman from Southpark singing Elvis Presley's "In the Ghetto". "On a cold and gray Chicago mornin', another little baby boy was born--in the ghetto...and his mama cr-i-i-i-ed." Finally, a little comic relief.
The image of my beautiful daughter in the pristine silk dress I bought her for this special day, my screams, the tone of Noah's sing-song voice and the reflection of his tear stained face in my rear view mirror all meshed together in my head. A popular mantra among active participants in the autism culture, "keep calm and carry on," came to mind. At least I could still make good on the second part. Noah wasn't sure he could trust me after my banshee tirade. The sounds I made were positively primeval. Other worldly. Spooky. He clocked me a couple times and tore my necklace off. Moms, especially autism moms, should not act the way I did. No matter what. We are held to a standard of consistency and perfection that even the most anal type A over-achiever could only hope to attain. I messed up, big time.
I turned around to look at him in his seat. "Sorry buddy, bad day."
"Park! Park!" He shouted. Great. We know what we have to do to calm down. Progress. We spent the remainder of our afternoon at the park, where he pushed me on a swing for the first time. More progress. We returned home and were greeted by family members and friends with sad faces. God what I would give not to be pitied by the people I respect. This was not at all like old times, I thought.
When Dave returned I reported the events as they happened, as I always do. He usually makes light of everything--not in a dismissive way--in a way that brings order and calm. This is one of his great talents as a leader and a husband. What happened, happened, we are still here. We will move forward, like we always do. I was waiting for it. The hug, the "it's okay, we'll get through this." Not this time. This time he was withdrawn and angry. Almost like, he didn't want to hear it. Because he didn't. He was tired, too. Finally he said, "We are a family. We can't even be together one time...not one time...all of us." He nailed it. The reason for my screams. The reason for my rage. Not one time...together...as a family...all of us. Apparently at this time in our lives, this is simply too much to ask.
The kicker? The more research I do, the more doctors and nurses I meet and the more tests results we have coming back--all these efforts have confirmed for us that Noah's medical condition, the one written off as autism, was entirely avoidable. This did not have to be. Yet, it is.
Now please...please do something with this information. By that, I do not mean flood my facebook page with good wishes and inspiring stories of hope. Not that I don't appreciate your kindness--I truly do. I just need for you to understand the point of these incredibly personal posts so you can get to work on the problem. We are extremely fortunate. Noah is extremely fortunate. We have family, friends, a remarkable school system and paid professionals that help us care for him. Despite this level of care, this level of service, parenting a child with several iatrogenic chronic illnesses that are mistaken for autism is extraordinarily isolating. Consider this story without the loving husband. The supportive family. The good friends and child-care professionals. Just...imagine. This is what life is like for many parents of children with autism. No support, no care, no help, no respite, no relief. No spouse. NO FAITH. No one believes them. NO ONE BELIEVES THEM!!! Desperate parents clamoring to be heard, dying to hear their 16 year old speak for the first time. Desperate not to be the ONLY PERSON who is changing their 20 year old, 200 lbs., adult child's diapers, day in and day out. It seems reasonable that screams may be an everyday part of life rather than the exception under such circumstances. No kind sentiments or inspirational words can alleviate this sort of constant stress and perpetual suffering. Only real service and REAL JUSTICE can do that. How do we make that happen, you ask? Read Age of Autism and visit the Canary Party to find out.
LJ Goes is Managing Partner of The Misuta Project, a Contributing Editor to Age of Autism, and Executive Board Member of the Illinois Canary Party