Because faith is the very thing I hope for even though I can't hold it in my hands. How often it tries to sift through my fingers like dry sand. It feels elusive, and when I'm looking for the chicken exit, I find my hands empty grasping for anything solid to steady my rising panic.How often I’ve wanted to take the “Chicken Exit.” I wanted that exit, so bad a few Friday nights ago. I'm pretty sure I may have even looked around for it. As autism crawled it’s ugly gnarly claws into my son’s brain; I just couldn't watch it one more time as it ate away his hope.
That first time I saw the sign for the “chicken exit,” I was at Disneyland with my sister. We had met up to take our elementary age children to experience the magical world. I’m afraid of heights, and as we waited to ride a roller coaster, I seriously didn’t think I could do it.
When you get to the top, on the left-hand side, there’s a sign for those experiencing second thoughts. This way to the “Chicken Exit.” I spun around, and my sister grabbed me. “Oh no, you don’t! No chickens in this group!”
This week has been challenging. Britton struggling to maintain control as more and more OCD behaviors pull him under. He would be doing well for an hour, and then he would need to touch my face at least once every few seconds. He needed to kiss me every two seconds. I'm not dramatic, I counted. I kiss him on the cheek, assure him I’m not going anywhere. (Pandas I HATE you!) It wears on my nerves, and sometimes I begin to tremble with the anxiety. Then I remember he’s far past his ability to endure the panic that's rising in his overexcited brain.
I don’t know, but last night when it all came to a boiling point… him seriously so out of control. I began to wonder if we can handle it for all the years that life requires. My overworked, overwrought mind, for some reason, thought of the “Chicken Exit.” I know, what a crazy, random thought? Seriously, if you’ve ever been around when a grown man, already rattled with autism, seizures, and then pandas tortures him til he's hallucinating and terrified, you may wish for a chicken exit of your own.
The autism life is full of rollercoaster ups and downs but you add pandas and your runaway mine train has gone completely off the rails! I was wishing we were on the seven dwarfs mine train instead of barreling through the darkness of pandas on space mountain.
We use to have a life. Back when there was "only autism." But pandas is a sick twisted kind of hell that can't be described, just survived. I keep wondering if “adulting” with autism can ever overshadow the twisting, the rise and fall that the roller coaster of pandas adds. The torture as pandas smothers the adult Britton prays so hard to be. Britton, he's 27. Independence is a dream, a far-off dream. He types about it and cries about it, and dreams of freedom. But this… this raving, screaming young man who was once the tiny baby boy I prayed for; writhing and willing to bang holes in the sheetrock with his head. The chicken exit is looking pretty good about now.
What makes you look for the exit? A cheating spouse, financial collapse, a mistake that you can’t take back? All those things can make every one of us wish we could run away and assume a new identity. Maybe worse, pull that 38 out of the safe and leave a really big mess behind.
My next thought... “My hypocrisy knows no bounds!” Makes me laugh, and then I cry. Old Doc Holiday laying on his death bed, just given his last rites by a priest. I mean if you know who he was, it appears that death had brought even the likes of him to the feet of Jesus. He knows it makes a mockery of the immoral life he had lived. I could judge him, and yet; I stand at church and bellow out the song, “You make me brave” wondering the whole time if it’s possible. I mean seriously, WHO can make me brave? I don’t like to fly; I don’t like to stand at the top of tall buildings. I rather spend my life in “safety.” Okay, I know it’s an illusion of safety, but I’ll take it. Stand me at the top of a cliff and ask me to jump, I’ll barrel over you to get to the chicken exit.
Oh but autism, autism has beaten, carved, and demanded bravery from me. Watching someone stick needles in your child, bury central lines to his heart, decide what drugs will be pumped in him, which therapies are best, and even what surgeries he should have. Brave, well obviously someone had better make me brave. Tell me I can jump from the highest cliff, or take a ride on an F16 with a test pilot? If I can have those choices INSTEAD? I'll TAKE THEM. I choose all the other things I thought I was afraid of. None of those 'scary heights" are scary at all when I put them in the light of autism or pandas. From 11 months all the way into 27 years now, watching my son's suffering. It’s bad enough that it’s the physical suffering, but the truth is, it seems the emotional suffering is the worst.
Last night after the grabbing, the biting, the pinching; the shaking, and the terror of a “street fight” with his parents, Britton hangs his head with the weight of it all. He’s barely looked up, as the shame of it hangs on him like a wet sweater. He knows, we understand and we don't resent him for it. We tell him we know it’s not possible to control, we love him. The problem is, he also knows that time is ticking. That if he doesn’t heal, if he doesn’t get better ENOUGH, what will become of him when we are no longer able to care for him? Who will buffer his behaviors from the rest of the world? All I can think of is, where is his chicken exit?
When I wish for that "Chicken Exit" I'm pretty sure that what I really wish for, is a time machine.
I go back and stand in that pediatrician's office, and I take a different exit. This time, after I stand up to explain that I have concerns about injecting all those vaccines into my baby; that he’s had a fever ever since the last one... I STAND MY GROUND. I don’t let her bully me, NO, not this time! I don’t go in the waiting room to think over “my decision.” I walk out and leave. I change my life, more importantly, I change my son’s life. But that option does not exist. All I can do is take the “Brave” exit every single day. I bravely watch him deal with the possibility that he will have no future. I bravely watch him writhe in pain from swollen intestines and stomach ulcers. I swallow down the razors and the guilt in a giant lump as he asks me if Dad can live forever. I cry a thousand tears when he types “can I have a wife someday?” You tell me, please WHERE IS THE CHICKEN EXIT?
I’m pretty sure that we are NOT supposed to take the "chicken exits" in this life. I pray it is never a viable option for me.
Oh, I could find one if I chose to. I could decide to leave my spouse, let him handle the nightmares of autism alone. About 96% of autism spouses do that very thing. I could drop my son at some state facility where he would get minimal care, let's be honest, probably no care. I could ignore him and instead meet my own needs. The list of "Chicken Exits" is long.
I don’t want you to misunderstand me. I’m not judging anyone. If you’ve met one family with autism, you’ve met ONE FAMILY WITH AUTISM. What’s right for one, is not right for another. I just know what my heart, my choices are, the ones that are right, the ones my conscience will let me live with.
One thing for sure, if you go and strangle, shoot, KILL your son or your daughter (with or without autism) you have taken the exit of no return.
I was reading Hebrews 11, that's the faith chapter...some call it the roll call of faith. I decided to change some of the wording, to be what a lot of us live within our lives with autism. Artistic license, I don't believe God will mind.
Through acts of faith, they toppled judgments, made justice work, took the promises for themselves. They were protected from evil governments, judgemental family members, and abusive therapy centers, these families turned disadvantage to advantage, won battles, routed greedy senators. Moms received their children back from autism hell. There were those who, under torture, even from Pandas refused to give in, give up and go free, preferring something better: a new life. Others braved abuse and whips, and, yes, locked doors and solitary confinement. We have stories of those who were punched, pinched, beaten, murdered in cold blood; stories of those with autism wandering the earth naked, homeless, friendless, powerless—the world didn’t deserve them!—making their way as best they could on the cruel edges of life.
Not one of these families, even though their lives of faith were exemplary, got their hands on what was promised. God had a better plan for them: that their faith and our faith would come together to make one completed whole, their lives of faith not complete apart from ours.
I read it over and over, letting it all sink in.
Because faith is the very thing I hope for even though I can't hold it in my hands. How often it tries to sift through my fingers like dry sand. It feels elusive, and when I'm looking for the chicken exit, I find my hands empty grasping for anything solid to steady my rising panic.
I saw a woman with a blue autism awareness shirt on at the Costco yesterday. All proud of what she supports, and she nods as she walks past Britton and I. It's been my experience that those who support the "blue lights" and blue sprinkle cookies give their dollars to a cause they fear but have no understanding of. I suspect that it is a sort of "guilt" offering. A trade for safety? Please take my money but keep autism far away from my family.
Young mothers with their sweet babies in tow are terrified of autism. They all know a "friend" whose child has it. They hear conflicting information about HOW the child became autistic and they hopefully are frightened enough to do some research. If they make the mistake of asking their pediatrician they will be reassured that vaccines have never caused autism. (In spite of it's listing as a side effect in the package insert!) That's the myth that the CDC has paid the medical community well to parrot. The false dream is repeated by these mothers, til bam, their child is the one in 36.
I want to scream, "STOP TAKING THE CHICKEN EXIT!" Trust me, it will be one of the best choices you ever make!
It is only fitting that I add that when I read the story of the temptation of Jesus, I am rocked by the reality of all those powerful"Chicken Exits." I imagine Satan standing, watching Jesus be beaten, hand outstretched offering him "the exits." Again, He must've stood at the foot of the cross and reached up and said just say the word and this ends! You know those "exits" were kept on the table till he took his last breath. What would we do if he had folded, given in and said okay? I can't imagine Jesus ever taking a Chicken Exit. All of our futures depended on him standing strong. Though that's an extreme comparison, so much does depend on whether we do the same thing. Our children, our grandchildren, the people in our tribe who watch, who pray. There are those wondering if the next blow will be the thing that makes you take the chicken exit... or will you reach through the heavens and clasp the hands of Jesus, knowing He can be trusted to get you through?
I intended to post this Monday, but Britton had a long grand mal seizure from a stand, hit the floor hard and I held my breath waiting to see if the shoulder was still intact. The six hours while he was unconscious, praying every prayer. Repeating every scripture. Those are the moments that the Chicken Exits can look so enticing, aren't they? As I imagined Jesus on the cross and Satan at the foot of it, making offers no one could refuse... it strengthened me to stand strong. "Because He lives I can face tomorrow." So today, I turn my back on all those exits. I look up into the face of Jesus and I'm grateful for his strength. Today I can sing, "YOU make me brave," and I swallow the hope and feel it wash courage over my whole body. JESUS, YOU make even me brave.
Amazing places you can donate to that make a difference. Take the money you would've spent on blue light bulbs, blue t-shirts, and sugar cookies sprinkled blue frosting... These places REALLY HELP local families survive, and even thrive. It could be the difference whether one of them takes the "Chicken Exit."
CAMP BLESSING
A FANTASTIC Christian Camp that Britton attends every year. They treat him with love and respect. They try hard to make him feel loved, welcomed, appreciated. He is so happy when he goes. Nervous, but excited. He loves being with young adults close to his age. He likes to feel like he can hang with the counselors. It's almost five days that Randy and I can be together. Eat dinner, see a movie, get a massage. It feels like the best week of the year. We KNOW they will call us if there are any problems. They will watch over him ever so carefully. This year they had a respite weekend TOO. What an incredible gift that was.
www.campblessing.org
Autism Rescue Angels is an organization that helps local families pay for situations, needs, difficulties. Like extra care for a single mom when she is injured and needs more caregivers for six weeks while she heals. Providing registration fees for others for conferences and training that they couldn't afford otherwise. They do so many things for LOCAL families; the list is long. But they HELP.
www.autismrescueangels.org
Happy Someday provides vacations for special needs families who never get one. RESPITE! Sometimes families dream to vacation WITH their autistic child and sometimes a vacation for the parents to escape autism. They are local and exist on the donations of people who really want to help.
www.happysomeday.com
