BROKEN TOGETHER

 My husband, Randy took Britton for a drive tonight…just to get him out of the house. But, obviously, that is no longer enough relief. He wanted some semblance of the life he had before the shutdown. He wanted HIS NORMAL. I do realize that we all want that, but HE HAS AUTISM! Shaking his world rocks his very foundation, and he feels like he is free falling. HE IS FREE FALLING!

So what’s the hardest thing about autism?

If you asked different families…you would most likely get a lot of different answers.

But if you talked to those with severe autism, you’d likely land pretty close to the same answer.

You might think it was the endless nights without sleep, though that’s so much harder than you can imagine. You might think it’s the relentless repetitive noises, worse than nails on a chalkboard after many years, you might think it’s attempting to teach someone…anything, 4 million times later you’ve made no progress. But none of those things would be your answer. It’s not bathing a full-grown man/woman on a daily basis. It’s not asking him to eat with his fork at every meal. Most of those things won’t break a family. 

But there is one thing…only a few would even whisper in your ear. “It’s the aggression!”

I bring this up because…the “Stay At Home” order will now be categorized as one of the biggest struggles that my son has had to endure. He may understand why he is not being allowed out, but his ability to control all his emotions, his ability to tolerate what is hard for all of us to understand... has become a bigger mountain than he can climb. He’s done, I’m done…autism across the globe is done with this stay at home and “stay safe" order. While families knit things, paint things, binge-watch television programs, and are basically FORCED to spend quality family time together…my son paces, and whines, and wants the security of the world he once knew.

Most families don’t talk about this…it’s not something ANYONE outside our world can grasp.

Autism is hard enough to comprehend when you live with it day in and day out. I can assure you, that you do not understand it if you don’t live with it day in and day out. It looks very different from the safety of emotional distance.

We love our children! We love them through diaper changes for 25+ years and wet sheets for a lifetime. Years of only a few hours of sleep. Special diets that would strain a nutritionist's ability to keep straight, and a slew of supplements that have specific dosing criteria...Oh...and a child that can’t swallow pills. Truly, you cannot grasp it. I have never had someone come into my home in the last five years and watch it, without having them leave in shock at the stark reality. But I give it my all…because I do love him more than I love myself. “Greater love hath no man or woman then this!” Laying down your life for your child is innate in most of us…amplified in the autism life.

So here's the confession you may not be ready to hear...our family, yes ours too... spent most of our son’s life with aggression. Intense, horrific, you can’t even imagine the intensity. We were often covered in bruises, scratches, bite marks…yep he used to bite us. We could have no semblance of normal because he could not function in a safe manner.

Then we found a biomedical doctor and we began to understand the majority of his aggression was the pain. It was 99.9% of the cause, it still is. 

Knowing that…helps, him helps us. But it does not change how hard it all is. The good news is that it changes how we manage it. But even with that knowledge… if one of us gets caught in the car with a full-grown young man who is in full meltdown…love isn’t the question any longer. How to manage that situation safely is like managing an angry grizzly in an outhouse. There’s no getting out of it without some scars.

We've worked so hard to help integrate Britton into the world. He loves to go to the movies, the mall, restaurants. Places he can go safely most of the time and “fit in.” But now…I do not know what will happen if…when life finally takes on any amount of normal. Can he remain calm? Can he remember all the skills? 

Can he be “normal enough” to be around others safely? Have all these years of such hard work been lost? I have no idea, but tonight all my fears rushed at me like fiery arrows and I wasn’t able to put them out. The pain of each hurdle we’ve overcome, losing it all…starting from scratch…the frustration, the sadness, the grief.

Randy walked in the house covered in blood, scratch marks all over his face, bite marks on his shoulder, a busted lip…tears pouring down his face. Britton was close behind jumping and angry stimming with hands flapping as fast as his physical body would allow. He yelled his fury, his face was also covered in tears…but his fury hadn’t abated yet. It was not safe for me to even check on him. He ran for his third bath of the day.

Now the house is silent except for the sounds of running water and autism. Randy and I cry together, hold each other and pray. Where do we go from here? The unspoken question..."Have we finally landed so far down at the bottom of this pit that we won’t be able to climb up again?" We might need help……we pray that someone throws us a line of hope, or we get a miracle. Randy explained that Britton had an absence seizure in the car…and when he reached to calm him, Britton came at him as if he were a monster. He clawed and fought and Randy had to get to a parking lot, FAST. But not before his face was bloody and he had been bitten twice.

How do we live through that life again? No one hates grand mal seizures more than we do. He has one every 5-7 days for two years now. I hate them with so much passion, but the seizures which are life-threatening…are not always the hardest thing to endure. He has a seizure…people feel compassion, sorrow and they offer prayers. They worry for all we live through and all he endures. BUT…I don’t tell many people about the trauma of seeing my husband's face covered in blood. I don’t talk about how if Britton lifts his arm too quickly I instantly flinch. How his vocalizations send tremors through me that cause my cortisol to surge and my blood pressure to skyrocket. How I had a “mini-stroke” after a day of meltdowns. I don’t talk about that. I don’t tell you the dirty, ugly, unspoken realities of severe autism. 

I’d like to at least explain to you why.

Because...you do not understand. You can’t…I don’t blame you, I don’t judge your lack of understanding. I would most likely act, feel, and think exactly the way you do if you saw what so many of us live with. I want you to love my son, pray for my son…care about my family. It’s the rare soul I allow into the tiny inner circle where all of what is beyond ugly happens. I have to be confident in your love… the number of folks I let in, I can count on one hand.

The absence seizures have been gone for a long while. But when he used to have them often, there was always violence afterward. He is terrified when he comes out of it. He doesn’t know where he is, what has happened, and he’s afraid of everyone. 

Tonight was like being thrown back ten years. The seizure only yesterday, the inability to go anywhere…the frustration has built into a crescendo and here we are…dealing with horrific, aggression we’ve seen only in our nightmares.

THIS is the reason families need prayer. This is one of the reasons autism is a diagnosis of broken hearts, broken marriages, broken lives. So many of us end up single. Someone runs…because often love isn’t enough to help overcome your own personal need for emotional survival. It’s the most helpless feeling. Your child in horrific pain, he may beat himself, bang his head and there really is nothing that helps. Often you lash out at each other…both so afraid of what’s happening, both incapable of helping the other…attempts at helping your child feels useless. The best-case scenario is that you cry together and pray together. Even after all these years, it is still the hardest thing that happens inside our home. On days like today I am grateful that my daughters no longer endure it…they are free to live lives without autism…to run as far and as fast as possible. I miss my other children, autism drove them away. They love us from a distance.

We’ve never had family members that could drop everything and come to our rescue. Everyone works, and more than that, you have to be around him for a while, to know how to BE AROUND HIM. There has never been someone to call when we are so close to the edge, we wish someone would push. We’ve rarely been blessed with someone who could help out in a crisis. If anyone comes, they eventually back out, because everything, anything is easier than this. (There was a caregiver a long time ago that was there for Britton…we miss that life. It is a different life if you have help. Then you also have hope.) Britton gets therapy two hours a week. The therapist watches me and often says, "why don't you rest?" I say, "I have 50 minutes to accomplish as much as possible, I must do what needs doing." 

If your kids are still in school, if you have help, real help... I cannot begin to express how blessed you are.  Both our daughters have high-pressure jobs...and children of their own. It feels wrong to ask them to help us. We are the grandparents, we are supposed to be helping them. 
But sometimes it works out and we look forward to any moment to ourselves like a child at Christmas. We still struggle to know how to be just us...we don't know how to ask ourselves, "what do you want...to eat, or where would you like to go"...or even how to rest when we are tired. We've forgotten how... we stopped asking those questions.

Most autism families don't ask themselves, they forgot those questions long ago.

Randy still works long hours and I am here, to do this alone. I wish there was day hab for him, but he can communicate well enough to tell me he doesn't fit. He begs me not to make him go. It would be easier if I didn't know and I could force the issue. But, I did that once before he typed. I forced him to go, and his last day there his foot was broken. Yes, the guilt of that is pretty hard to overcome. His behaviors told me that so MUCH wasn't right there. But I didn't trust in his intellect, I didn't listen. 

It’s times like this when I feel the most alone. The right word is…abandoned. I feel abandoned because of my son’s autism. Is that a fair word? Maybe not, but it is how I feel. People may love us…even love him but what does love look like? It’s fair to ask…is love more than words? For the record...love is action, even if you are far away.

Love is showing up when someone you love is so done they scare themselves. Love is caring enough to sit and cry with a parent while the child they love rages in the background. Love is showing up when you know it’s all gone wrong and the person’s emotions are shredded. Even if what you can do is call or text...those things matter! It means you thought of them, you care. It's a big deal when you live with such isolation. 
I wanted to be specific…I wanted you to know the answer if you asked me… “what can I do to help?” The answer is definitely DO SOMETHING. Don’t think it, don’t just wish from a distance…show up in their lives by acting....Actually pick up your phone, a call or a text...pick up your shoes, your car keys…if all else fails, pick up your checkbook! Show your concern, your love. You may pray for them every day...make sure they know it. TELL THEM! 
When our life goes so far south I don't have the strength to even ask for help...I need to know that others are praying for me, for us.

DO SOMETHING before that family you love breaks. 
It doesn't have to be a big thing...

If your family is in this same place…I offer you these lyrics. So often marriages, whole families break because of the weight of autism, seizures, pandas, Crohn's disease…it’s too much, too heavy. But I do know that after 42 years of marriage, 29 of those with autism…we can be

Broken Together. 

Broken Together

Casting Crowns

What do you think about when you look at me

I know we're not the fairy tale you dreamed we'd be

You wore the veil, you walked the aisle, you took my hand

And we dove into a mystery

How I wish we could go back to simpler times

Before all our scars and all our secrets were in the light

Now on this hallowed ground, we've drawn the battle lines

Will we make it through the night?

It's going to take much more than promises this time

Only God can change our minds

Maybe you and I were never meant to be complete

Could we just be broken together

If you can bring your shattered dreams and I'll bring mine

Could healing still be spoken and save us

The only way we'll last forever is broken together

How it must have been so lonely by my side

We were building kingdoms and chasing dreams and left love behind

I'm praying God will help our broken hearts align

And we won't give up the fight

It's going to take much more than promises this time

Only God can change our minds

Maybe you and I were never meant to be complete

Could we just be broken together

If you can bring your shattered dreams and I'll bring mine

Could healing still be spoken and save us

The only way we'll last forever is broken together

Maybe you and I were never meant to be complete

Could we just be broken together

If you can bring your shattered dreams and I'll bring mine

Could healing still be spoken and save us

The only way we'll last forever is broken together

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Are We ALL ANTI-VAXXERS NOW?

The air sizzles with the tension...how long will the seizure last, will he breathe soon, 

will his joints be in place? How many times can the human body endure so much abuse...life hangs suspended and we forget to breathe...today it's the seizures, tomorrow it may be a meltdown that would rival an entanglement with an angry grizzly. This is Britton's life...and the life of many a desperate young man (or woman) who is in so much pain they just want someone, anyone to make it stop...they know that all the promises of how hard you have tried to help are empty...because nothing has ever helped enough... 

In so many homes...homes that throb with the pain of vaccine injury...homes bulging with grief while clinging to hope as the years of futility slide through their fingers. Your next-door neighbor, your dear friend, your family. This is the world they don't share with you. This is the world they refuse to open to others...because looking at this life, is a world where outsiders have many opinions, and often place judgments on families already bearing burdens too heavy to lift. 

I struggled writing this...I don't know how it will be received, I don't know if you will think I've finally snapped, or be willing to consider...those of you that live this life are far more likely to think of the big picture...we've had years to weigh the "why's" of what has happened to our child.

There are thousands of us now...and those of us that have pushed from the frontlines for 25+ years are still pushing. We have fought and struggled and researched late into countless nights...believing that an answer would/could/MUST be found. We have overburdened ourselves our spouses, our other children...We have fought THIS INVISIBLE ENEMY so long with almost zero assistance from the very government who caused it...and ended up being labeled ignorant, and unlearned when we can talk circles around most...when it comes to immune compromise. 

Watching the world come together...to fight ONE VIRUS is a mix of a Hollywood Horror film and the moment we had all hoped for. That somehow the government would stand up for us...for those who lost everything when the promises of "safe and effective" broke us. The truth...of "unavoidably UNSAFE" is how all vaccines are labeled, but no one wants to talk about that. Those outside our tribe don't even KNOW that the vaccine they are submitting to is UNAVOIDABLY UNSAFE! Watching the world crying desperately to be saved from the possibility of a virus, that MIGHT make them sick is unsettling..unfair...and HARD on all of us emotionally. Listening to people pray for a vaccine...that may be the hardest prayer I've ever struggled to hear. I know it's safe to ask God for anything...but I suppose it comes down to whether you believe that SAFE and VACCINE can be used together? 

The seizures this week have been brutal and unrelenting...while others cower in their homes, worrying about the UNSEEN that could be lurking out in their streets...the same government that is making those promises... made those same promises to thousands of families like mine. The vaccine that stole my son's life...that still ravages his body... I was told the science was settled. The lie still burns. 

It's April...Autism Awareness Month. Every year I struggle with the impossibility of what AUTISM AWARENESS would really look like. Maybe I become cynical, tainted, angry. I try hard not to...but this year is quite the challenge. When news reporters whine about the horrors...(and I'm sure it is terrible!) But I also know there are thousands of us living a life that most Americans would recoil from.

Somehow the powers that be are making SURE that you are scared enough, desperate enough... that when they roll out that vaccine that hasn't been through the long years it supposedly takes to be sure it might really help...you'll rush to get in line thinking anything is better than the virus. I'd like to ask you to pause... to think it through. Please pray first! I HAVE TO REMIND YOU that those creating the FEAR and the terror are also those, offering you a "cure." Interesting how that works. 

I might be a tad more cynical about this subject than I ought to be. I admit it. But before you judge too harshly remember that I live with a handsome, 29-year-old young man who would give ANYTHING, and I mean ANYTHING to live free. His future was changed...forever. His body damaged... His hopes are so small and yet, they have always been unreachable.

He was so upset he actually held my purse and yelled, "GO!" HE IS NONVERBAL!! He's so desperate for life to return back to HIS NORMAL. It's not like it's a great life. Movies once a week...on good weeks. Grocery shopping, when he feels well enough to eat. An occasional visit to one of his sister's houses. On fantastic weeks a bike ride, and maybe even a visit to The Woodlands for time with dad in a kayak. (they closed that lake this week...how do you close a lake?) I did explain it to him. I did show him that it wasn't only him, that it was everyone locked in their homes. We went to the movie theater and I let him try to open the door. There were tears...his and mine. But when he picked up his IPAD and typed...His words broke me, tore me inside out. "I am smart, I can go momma!" I cried it wasn't a choice. His life is hard enough, how cruel that he would think that it has to do with his brokenness. Sighhhhh Praying the lockdown ends...SOON for everyone. 

But those things...cannot bee till the infamous virus is corned somewhere and a weapon found to neutralize it. I know it will happen eventually because the world cares about it, is hunting it, tracking it's every move, reporting its every victim. The world cares about those victims. They haven't been accused of bringing it on themselves...not yet. It's hard for me not to add..."BUT WAIT....hold the government's beer." 

I'm always amazed when I get labeled an "anti-vaxxer" that the name-caller has forgotten than I am in this situation BECAUSE I vaccinated. Because I am a rule keeper, because I believed what I was told. True, I no longer vaccinate, and yet...I'm not sure that's a fair label when the experience that has driven me to become what so many in the world deem as radical. This past week, a woman crossed the street when I was walking my dog...she placed a hand over her masked face and turned her head. Well now there is a symbol of the divide that has occurred-- "every other human might carry the virus...! It is the very opposite of loving your neighbor as yourself. 

"Anti-vaxxers have felt this many times over the years when the propaganda that people who aren't vaccinated could SOMEHOW spread a virus they do not have to those who are vaccinated. (Makes zero sense, but when has that ever stopped the propaganda?) 

I BEGAN TO WONDER...IS THE WHOLE WORLD BEING TREATED LIKE AN ANTI-VAXXER? 

Because "anti-vaxxers" have been shunned, refused into many schools, shut out of most daycares...If we refuse the vaccine that is to come...will we be allowed to go into movies, grocery stores...schools? We've been taught in Sunday School that days like this would come. Bill Gates is demanding we all "show our papers" or better yet, we all get chipped with PROOF we've been vaccinated. (Wouldn't it be convenient if we could put the chip in the vaccine?" Call me crazy?

We've all heard the scripture..." and that no man might buy or sell, save he that had the mark, or the name of the beast, or the number of his name." Rev: 13:17

Interesting...I'm not making any prophecies here, I'm just praying our eyes are open, WE ARE PAYING ATTENTION. 

 The world is hiding in terror...and yet the real enemy is waiting to change life on our planet forever. It's important that we SEE with more than just our physical eyes. That we SEE the words of the bible unfolding before us.

I want to leave you with these scriptures. I write them on index cards...I read them daily because they encourage me. 

Matthew 6:34 Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.

Isaiah 35:4 Say to those with fearful hearts, “Be strong, do not fear; your God will come, he will come with vengeance; with divine retribution, he will come to save you.”

Matthew 10:28 Do not be afraid of those who kill the body but cannot kill the soul. Rather, be afraid of the One who can destroy both soul and body in hell.

Psalm 9:9-10 The Lord is a refuge for the oppressed, a stronghold in times of trouble.

https://www.amazon.com/Choosing-Finding-Truth-Dark-ebook/dp/B0833JQ2PZ/

The paperback is on sale for $14.95 and the ebook is available free on kindle unlimited!

             ACCEPTING THE THINGS I CANNOT CHANGE

Who would’ve believed that our entire nation could be sent on a rollercoaster ride of uncertainty…all of us, all at once? 

A rude, global awakening...and a slap in the face of our capitalistic security.

Most of us are still sitting in our homes, with a drop of PTSD, emotions of “shock and awe.” Wondering when the next shoe will drop or when someone will shake us and we will learn this was only a cruel joke?

I’ve managed my stress by eating foods I have avoided most of my life and then lying awake for hours thinking of every worst-case scenario. 

Which is not a good combination when you’ve spent 29 years struggling with all the worse case scenarios that severe autism might bring into your life. 

The best news is…living the autism life has also taught me how to set those things down and reach for the hands of the one who never fails me. 

Britton and I were working. Reading and he was answering questions, he cracks me up with his answers. “Has the US ever had a woman president?” He was totally stumped by the question. (These are yes and no questions, and he just types N, or Y for answers. Sometimes he types the whole word, but it’s independent typing that we are working on.)He put his hand over the questions and picked up my hand which tells me he wants to say something. So he typed…

“Give it up momma. This is God’s to do. Trying to do his stuff won’t save me. you. You are afraid not brave. You . we are easy brave. . yes. Like birds free, like flowers. Jesus he is the bravest. He won’t leave. Don’t eat the fear, the fear tastes bad. Fear is easy, brave is us.”

Sometimes in these moments…it feels almost as if we’ve stepped out of time. Like only he and I exist. The rest of the world falls away and I am amazed that I sit with someone who hears God on a level that I only dream of. 

He, felt my emotions, I wasn’t fooling him at all. My mind was far away, worrying about what will come and how we will manage it, I wasn’t present. One thing, that severe autism has gifted my son…he seems to discern with uncanny accuracy how others feel. A master at reading body language, and feelings. I wonder if it may be a gift most of those with autism have?

Earlier we were reading the sermon on the mount. Now if it’s been a while since you’ve read through the book of Matthew let me remind you that Jesus has a lot to say about all we worry about

“Look at the birds, free and unfettered, not tied down to a job description, careless in the care of God. And you count far more than birds. Matt 6:26

“Instead of looking at the fashions, walk out into the fields and look at the wildflowers. They never primp or shop, but have you ever seen color and design quite like it?” Matt 6:29 The Message

Jesus teaching on worry was nothing short of sheer genius. He spoke of birds and flowers--

so if we look up we are reminded by the freedom, and joy a flock of sparrows as they dance on the wind currents. If we look down, we are reminded again by a field of wildflowers in living color, taking our breath...flowers that only God himself waters. A living illustration of the uselessness of worry.

He finishes with…

“If God gives such attention to the appearance of wildflowers—most of which are never even seen—don’t you think he’ll attend to you, take pride in you, do his best for you? What I’m trying to do here is to get you to relax, to not be so preoccupied with getting, so you can respond to God’s giving. People who don’t know God and the way he works fuss over these things…

Give your entire attention to what God is doing right now, and don’t get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes.”Matt 6:32-34

He knows us, better than we know ourselves. It encouraged me so very much. I wanted to share it with you, encourage you. “You are worth far more than these…” He does have the whole world in His hands. He is going to use this hard situation for good. I don’t know when, and I don’t know-how…but if I begin to “eat fear” again, I’ll remember to look up, and then look down. I’ll remember that worry can fracture my heart, my mind. That it distracts me from trusting and believing. 

You may find this all a little religious for your liking…I hope not. I am not a religious person at all. I find that by surrendering my need to control…the illusion that I even can control, I find myself happier, and freer.

Jesus was not a religious man. He came to make us more alive, the religious found him a rebel.

We get to choose…to focus to stare at the hard things, the scary things that life always brings our way…or we can choose to look up… 

to marvel at the birds, soaring and diving, the wind rippling their feathers, their tummies full of bugs and worms. 

We can gaze across a field of lavender flowers. Immerse ourselves in the fragrance God added, just because he knew we would love it. 

We can stare amazed at the bluebonnets that show up each spring, coloring an entire field blue. Imitating the ocean waves, like God’s breath when the wind blows them in motion. 

Yes, it is our choice…so it is my goal to look up…and watch the birds soar and dip…and then to look down…at the intricacy of the flowers drawn by the greatest artist. Amazed at God’s attention to detail. Knowing that humans are the culmination of God’s creation. He made us, only us in his image. We are his workmanship…WE are his favorites. 

Maybe we should pause…and lookup. 

The Choosing...AVAILABLE ON KINDLE OR PAPERBACK 

https://www.amazon.com/Choosing-Finding-Truth-Dark-ebook/dp/B0833JQ2PZ/

How Small Is your Circle?

One thing I can assure you, after reading comments from the survey…All of us live in a very tight-knit world? Not because we want to, not because it’s where we want to be…but because it’s safe here. Safe for our child, safe for us…safer from the rest of the world.

All of us, WISH with all our hearts that “others” (I call them “the normals”) were willing to attempt an understanding of what our life is really like. Most of us keep to ourselves, shielding the unknowing “normals” from the reality of how difficult autism life can be. We shield our churches, our friends; we even shield our family members. We shield the world from what it’s like to live with “a real boy.”

We remember when we had LIVES, with jobs and date nights, and vacations…we remember it.

But that was when we were allowed the luxury of those things. The more challenges autism presents us with, the tighter the protection, and the more secluded our circle becomes.

Who can you trust inside your circle? Who can you allow to SEE, I mean really see what happens in the darkest moments? Who can you trust to see all of what one autistic child can bring into a family?

Who can be trusted to know your 25 years old still wets the bed? Who can be trusted to know that Your son has smeared fecal matter down your wall for the last 15 years? Who will be able to remain calm when your son breaks the sheetrock with his head in a fit of frustration? Even the small things, who can you trust not judge you when they see that your child STILL won’t use his fork to eat even pasta? WHO, can be allowed inside the tight circle of autism’s realities?

When I started thinking about the tight circles we all live in, I thought of Jesus and his small inner circle. He had 12 disciples. He had thousands of followers who swore their undying love…but he had three. Three he allowed to experience it all. Then I wondered if even He had to limit who was capable of managing His reality? Jesus life taught everyone that saying you love someone, and demonstrating that love are two very different things. Somehow our world has equated loving with approving. This is the tight rope of autism families. If you say it, but you do nothing, we KNOW we cannot invite you in.

I once asked Britton, “what was the hardest part of being autistic?” I expected the pain, the frustration.

He typed, “I am utterly alone, a broken body.”

The priorities of my life cracked into a million pieces…they slid apart, and though broken they created a new picture. I’m only his mother, how can I promise he will never be left alone? The day will come when I will leave this world, and I do not know if my will is strong enough to force my old body to keep trying, but if a mother’s love is as powerful as some say…I just might live till he takes his last breath.

His dad and I are what he has. He has sisters, but they moved out a very long time ago. Neither of them has seen him have a seizure, (and he’s had hundreds) they have not lived in the house with him since he developed Crohn’s disease, or spiraled into the nightmare OCD’s of pandas. The number of times he washed his hands for endless hours, watching the skin peel away, leaving raw flesh…all while he cries because he can’t stop. They love him, but they do not truly understand what his life is like now. They say we “pamper” him when the truth is…we pamper others…not, allowing them in.

Parents aren’t the first choice of any 28 years old. He’d rather friends, siblings, aunts, uncles. Every adult wants free of their parents, including him. We were on vacation once; it was back before seizures, Crohn's disease and pandas…all the additional surprises that now make “only autism” feel like a cakewalk in comparison. We took a walk on a relatively deserted beach in front of our room. Britton kept walking ahead of us…way ahead. Like 30 feet ahead. Strolling and pretending he didn’t know us, walking like any young man, free and on vacation. I was going to run and catch up, and my husband grabbed my arm. “Let’s let him walk alone; he wants to be free of us, of autism. Let this be his vacation too.”

We walked along behind him tears poured, and we decided we would walk till he was ready to turn around. The longer he walked alone, the happier he became. People walked by him and nodded; he nodded back. He scared one young woman to death by squealing like a dolphin and skipping away. He pretended he was “normal” and for a brief moment, he was. We wiped our faces, and after about an hour we yelled at him to turn around.

He wasn’t ready, but it was getting too dark. He refused to come and sat down on the shore and began writing in the sand. We caught up with him, and his dad sat down beside him. A sudden rainstorm came, we pulled out a plastic sheet we had in our backpack. I stayed back, letting it be just the boys, only two guys sitting on the beach.

The joy of that moment was just us…his inner circle. I know that Jesus was there too, watching, relishing Britton’s

delight in such a simple act for most young men; but it was an extravagant luxury for our son. Sure it was pretending, sure he only wished…but

The sun set, and it was time for the fantasy to end, but ohhhh the joy of those moments.

He skipped all the way back to the room and fell asleep in his clothes so tired from the exhilaration.

It's true, our circle is indeed small…but our joy is big, oh so big. If I invite you into our circle, it is a sacred invitation. One thing I can promise you, It looks very different from the inside out.

Dear Younger Me

I heard a song on the radio...entitled "Dear Younger Me." I did listen to the song, but the whole time my mind was spinning. What do I wish I had known...when autism came for my son, for my family, for our future?

The memories paraded through my mind but the words tasted bitter. I wanted to assure myself, hug that young mom who stared in terror as her child, her baby seized. I wish to hold her as she trembled, and help her believe that she AND her family will get through this. But...I can't do that. I can't lie to that untried, untouched, terrified young momma.

The monsters that keep her awake night after night are indeed the terror that hold her child captive.
I would tell myself I better be prepared to fight. That research, parents who are fighting this battle and more than anything... prayer. Prayer is the weapon that will help you survive.

There will be battles you can win. Pause, celebrate those victories. Those outside your tribe will rarely ever comprehend...you will stand broken and bruised infront of a brutalized child that you have dug up answers for with your bear hands.

It WILL NEVER feel like you have pushed enough, read enough, researched enough. 

This war has not been won by many...but you must not let that slow you down.

There are a few moments of celebration. Most celebrations will be for your other children. Your beautiful daughters will bear much of the burden that autism placed on all of you. But try, you must TRY with all that's in you to celebrate his every victory...every step forward for your family. A smile you haven't seen in months, less stimming after a new supplement, extra days between seizures...even if you have no idea how.

You must continue to push for the child trapped, the child that is alone, the child that the world has chosen to forget.

Even if those steps take your other children out of your life....make them seem too far to reach...survival may move them out of the path that autism rolls over.

The day will come...when truth will be heard around the world!  You must hold on to this with both hands. It will come because there are countless families just like your own. Praying, pleading, searching for answers for a way.

Autism has now rattled the bones of the earth and you must refuse to be silenced.

CLIMBING THE AUTISM MOUNTAIN

As Autism Awareness month trudges its heavy burdens back into what is mostly obscurity, I wonder are you more aware?

I wonder, what does awareness mean to those who are afflicted by it, and those of us that live with it every day? Not only during awareness month but every single minute of every single day.

Does it mean understanding that It is a MEDICAL condition? Wouldn’t that be a good start? 

Does it Mean being able to list the symptoms: 

“performs repetitive movements, e.g.rocking, spinning or hand flapping. Delayed speech, difficulty with eye contact.

Some of the unexpected things, like inappropriate social 

Interaction, sensory sensitivities, tics, epilepsy, gut dysbiosis. 

The infamous, pans/pandas or more specifically autoimmune encephalitis.  

What do all those “conditions” mean? Where does a family go from there?

Not one of us has a PROGNOSIS for our child’s future…because like it or not, admit it or not, autism is relatively new. 

Somewhere in the 1980s the numbers began to rise, but before that, it’s very difficult to find anyone presenting with these same symptoms.  

When Britton was almost two, I sat in a medical library searching book after book trying to find anything that matched. It was 1992…I found ONE child who had regressed…from his childhood immunizations. Yes it actually says that. It’s dated 1956.

There was no internet for me, no support groups, no one to say this is 

What happened, and this is how you help him. There was only confusion, fear and loss. Mostly there was a terror as I watched my son sink into the depths of a condition no one had seen before. My son’s pediatrician asked me, “How does it feel to have the entire medical center scratching their heads?” I said I feel a panic I can hardly contain. I had one question, WHERE DO I GO FROM HERE?

                                                                          

No matter the debates about the cause, one thing for sure, this is the first generation to deal with AUTISM no matter what you call it. (Some are lucky enough to call it a gift, others barely have the strength to see over the tragedy it has brought to their lives.) That being said, where does autism fit in the current society?

We have no idea how it’s all going to pan out. There really aren’t many who have gone this way before. So far, autism continues to rise. If we don’t ADMIT or at least truly open our eyes to the cause that every parent SCREAMS is the truth, then soon the 1 in 36 numbers will be 1 out of every 2 that have autism…there will be no one left to care for anyone.

When Britton was small I had every belief that he would improve...that if we could try every possible intervention we could dig up…spend every penny we had…THEN HE WOULD GET BETTER.  No, the doctors told me he wouldn’t, but they diagnosed him with many things before at the age of four, a strange physician at the Mental Health Institute, called it autism. I didn't really grasp the extent, nor the meaning of the word.

The first kids seem to have received the worst of it. Maybe it was the pharmaceutical industries "first try" at just how much their bodies could endure? Yep merely parental speculation, but their flood of recent propaganda has certainly not gained them any trust in this tribe.

The thing I am most grateful for now is that when a momma calls me for help, I can say, go to this website, read this book! Recovery happens, it’s possible…HURRY! 

When my husband and I use to talk about recovery we did so in whispers. We got big-eyed stares and even laughs behind our backs. I remember the first doctor who ever gave me hope…He said, “Remember if one child has recovered, that means RECOVERY IS POSSIBLE!” I spontaneously hugged him.

It was a breath of fresh air…maybe it was the first time I breathed. All the doctors who sat bug-eyed, wrote in his chart, “prognosis guarded.” Yep being one of the first was not something I would’ve chosen.

                                                                                

Without one ounce of recovery no matter the efforts and the thousands of dollars we spent, by the age of 25 we had seen zero progress. Suddenly in 2015, he began to recover. Oh, how I wish I knew what “magic treatment” granted that reprieve! It lasted almost a year. All aggression was gone, my clear-eyed son even repeated a few sentences. He laughed a lot, he typed his thoughts constantly, he hummed to music. I’ve never EVER been so happy.

Then seizures came in the wee hours of a Sunday night and began sucking the life out of him. Like a bully that taunts you with the thing, you have spent your whole life begging for…Britton began to slip farther and farther from us. Each day, each month, each year passed…and I reached and I prayed and I begged…He hung from a cliff with no bottom and we held him by the fingertips. 

His medical condition began deteriorating so rapidly we got whiplash watching it. 

But the lessons I learned during that year…oh, the valuable, valuable lessons. He taught me a lifetime of truth in mini-mester. He taught me to never ONCE believe that a person with autism is not “IN THERE!” That I had always treated him like he didn’t know how to do things, or understand things. Did I mention he took a college class on Quantum Physics that summer? Did I mention he helped me begin to write a book that he is the main character in? Did I mention he told me he loved me many many times? 

Losing him, again is the hardest thing I’ve ever ever done. But he didn’t leave me empty-handed. He left me with knowing, and understanding that I could’ve never had any other way.

                                                                         

He is 100% totally intelligent, and so painfully aware of his condition. 

Always hyper and high energy his entire life, he now sits, with just enough strength for reading books and watching movies. Ever since the seizures increased, and the subsequent shoulder dislocations from the powerful muscle contractions. Like cruel abusers, they beat him into submission. At the very least, the pain, the fear, and the unknown changed him. He sits, he lays, he seems so tired of living. It's hard to separate fatigue from despair, or both. 

There are so many young men and women in their 20's on the spectrum. Because we are the front of this population, most haven’t really dealt with where they could work, where will they could live…where they can find purpose…or as Britton typed, “where can I fit?” 

I stare at young mommas and tremble, shivering for all the years I know are ahead. The pain, the hopes, the possibilities. It rumbles through my mind, and I swallow down so many wishes and a thousand prayers for each of them. 

But we are learning, parents are pushing, begging and finding the healing their children need. Like climbing a ladder up the tallest mountain while dangling off that cliff, parents climb. The government takes away the ladder, we climb, the doctors tell us there’s no way up, we climb. The world watches and judges how we climb…but we climb anyway. 

Sure we are frightened, it’s scary as Hell. We can’t use both hands on this climb, because we hold our children on our backs. 

But God strengthens us with a power that is not of this world. That power is love. God encourages us to climb. God shields us from the judgment of others, and cuts steps up the side of the mountain and then nudges us to climb. We get knocked back, we slide down, we are often so battle-scarred only other climbers recognize us. They, the other climbers, throw a rope and pull us up when our arms fail us. They shine a light when it’s gotten too dark to see, all while climbing with their own child on their backs. 

This journey has created an army, made up of ragamuffin parents, who may well be the toughest climbers this world has ever seen. I expect it is the image of God in us that so enrages Hell. It is why the demons hurl their mightiest weapons at us. 

These parents won’t quit, they won’t give in, and it’s a rare occurrence to see one of these climbers give up. It’s a superpower of strength that is definitely not from this world

Autism is not our superpower, love is.