I SEE YOU

 

A forgotten population? Invisible to the world. Hidden away in day habilitation programs, and their parent's homes. 

I wondered one more time about the vast population of thousands upon thousands that so few SEE. 

Does the world pretend that our children don't even exist?

Today I was reading the story of Jesus walking by the pool of Bethesda. My heart lept when I read that Jesus made a beeline for the man who had been disabled for 38 years.... I wonder what it felt like for that man to be seen? Really SEEN! A man who had always been invisible...38 years he sat beside that pool, but then he had a miracle...he voiced his hopelessness to the savior of the world.

"I have no one to put me in the pool..."

Jesus saw him when no one else cared that he existed. When no one was willing to help. 

Maybe he was born that way, or maybe he was injured? Maybe he was angry overall he had endured?

We don't know the answers to any of those questions, and yet...what we can all agree on...is that the vast majority of the population looked the other way. 

^"Now a certain man was there who had an infirmity thirty-eight years. ⁶ When Jesus saw him lying there and knew that he already had been in that condition a long time, He said to him, “Do you want to be made well?”⁷ The sick man answered Him, “Sir, I have no man to put me into the pool when the water is stirred up; but while I am coming, another steps down before me.”⁸ Jesus said to him, “Rise, take up your bed and walk.” ⁹ And immediately the man was made well, took up his bed, and walked.

Those of us sitting by the pool, rarely glance up at the rest of the world. I wish I could say our families always see us, that all churches see us, but... in general, we are the heavy baggage, the difficult population that needs so much. 

Sometimes in my prayers, I agonize..."Is this just the way it is...or should I refuse to accept it? Demand equality? Scream to be seen?"

I remember doing that, back when Britton was entering into the Early Childhood program. I wanted him to be just as important as every other student. I was that naive young momma who loved my boy and couldn't imagine the school system, not caring properly for him. If I could go back in time I would give my younger self a giant hug, and ask if I could pray for me.

I'd pray that God would give me much thicker skin, faster. That I'd open my eyes sooner, and not constantly refuse to accept what my eyes clearly told me was true. The years did bring thicker skin and I did accept the things I couldn't change. (Though I still believe most of it can be changed. Yes I'm stubborn.)

The things I cannot change are hard to swallow...sanding away year after year at my hope.

I wonder when I stopped screaming that my son deserved to be seen? I don't remember honestly, but I do know that somewhere along the way my voice became an echo that only those by the pool could hear. 

I'm glad I didn't know any of those things back then. I just loved my son, and I thought the rest of the world would love him too. I often fall in love when I meet a new autism momma who has not yielded. The vibrancy and commitment to making the world better for her child infuses me again...and we lock arms and we keep on pushing. 

Recently a young momma came to me describing her son's classroom. How it was not set up with the proper equipment. How her son needed more space, and the stress of it had caused him to be covered in eczema. I understood I understood it well. More than 18 years ago, it was the inadequacy of the classrooms for those with special needs that were one of my first big shocks. (One year they made a classroom for him out of a storage closet. You can't make this stuff up.) I will never forget the principal looking at me in shock. She then explained in small words she hoped I could grasp, "your son is not "entitled" to a great many things that you want for him. You cannot expect him to be given the same education as a "normal child. That is very unrealistic." Lucky for her I was in shock, and my heart had not grown the callouses, nor the armor that would come over the years. Ten more years of rejection under my belt and that conversation would've gone very differently. 

I became my son's voice.

I watched the news and the country lose its mind over the brutal, ugly, pointless murder of a black man, George Floyd.

It sickened the nation and we all grieved over the injustice, and a lot of folks couldn't believe their eyes. The truth was difficult to swallow. It was murder and horror and so we all ugly cried, as a nation...grieving we wished to do something!

But I remembered barely a week before --when another unthinkable situation appeared on the news.
A woman by the name of Patricia Ripley...a momma who had a son with autism. Her fifteen seconds of fame...she murdered her autistic son.

He was only 9 years old. I'd like to say that someone else saw the story. That the world was outraged and people rioted, and held signs and screamed that "Vaccine Injured Lives Matter," or "Autistic Lives Matter!"

But none of that happened. Even those of us who are living the same life in the shadows knew that nothing would be done. We would lay by the pool, and no one would see us.

As a momma who has wrestled the world of indifference towards autism for more than 29 years, 

I might have some idea of why she did what she did...

I may raise more than a few eyebrows when I suggest that perhaps...if someone SAW HER, she would've made a different choice? If someone offered a respite day or even a sympathetic ear? If someone acknowledged

the intense burden that she struggled to live every moment of every day. (Lots of long nights too.) If the government that is totally complicit accepted any responsibility...if friends and family didn't run? 

I guess we all manage our lives with autism aka vaccine injury as best we can. I have friends that stay angry a lot. Most of them become warriors on the front lines, demanding that people SEE the ugly truth!

Some of us fight...by speaking out when we are asked... I write as much truth as I think I can get away with. Pulling back the blinders on what it is like to live with autism. Trying my darnedest to give a real-life glimpse into my son's brutally difficult life.

The truth that there is an entire population laying by the pool, with no hope of being helped.

I do realize that that outside of this tribe will struggle to digest most of this.

The world has told them that those laying beside the pool deserve to be there. It's best to look

the other way. But maybe, just maybe...some of them will open their eyes and see what they were

once blind to?

Those of us who call ourselves Christians are supposed to be Jesus to the world.

We are supposed to SEE, and we are supposed to ask the question. "Do you want to be made well?" 

As the world continues to pretend to be blind to the plight of a great many things...

the numbers of those diagnosed with autism grow and grow. It will be hard to look the other way when

there are more of us than there are of them.

When there are no longer more normal children than vaccine-injured ones.

When the vast majority's voice gets louder and louder...

the roar of the pain of dismissal will reach a crescendo and it will shake the earth! 

Vaccine Injured Lives Matter, especially when it's someone you love.

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If you have procrastinated until now to get your copy of The Choosing....

HERE is the most recent FIVE STAR REVIEW 

"Reading this book, while reminding me all too well of what little regard others have for our "Britton's"

and "Brandon's" - has also rekindled the absolute truth and justice we must continue to believe in.

That while evil runs rampant, it is not in control.

That the worst thing our enemy can do to us, is make us be like them."

Buy the book. Read it. Share it with someone who isn't affected by autism so they can be enlightened.

Thank you, Britton Holman - your story has raised me from my own ashes of late.

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

PSSSTTTT - (I'm whispering) The sequel NO CHOICE will be out in November... I promise you guys the first four chapters BEFORE

THE REAL THING

I often wonder if people enjoy how I tell a story? My first book, The 

Choosing is written in the first person, Britton's voice, He tells the story. It's unique

in the storytelling world. Writing a story with the main character who is nonverbal

is not for the weak...or inexperienced for that matter. I might be one of those, or

maybe both....But, In case you've wondered the same thing, here is a tiny piece

of a story. It's pretty accurate to our "everyday life." You might enjoy a glimpse

into Britton's world...

 

"It looks like it's just you and me kid!" Mom gently held my arm, we stood at the movie counter. I reached for the tickets when the young woman handed them to us. Saturdays are often just mom and me. I smiled at the woman's surprise when I took the tickets, she is nice, always acts happy to see us. Her eyes smiled back, and today, she gave us special coupons for snacks. Before we walked away she asked mom, “How’s he been doing?” I smile at her, she has no idea that I understand everything she says. Most people assume because I’m mute, I’m also not very bright. Staring into her sad eyes, I have an overwhelming need to reach over and take her hand.

Disheveled chocolate-colored ponytail, purple moons underline the exhaustion of her own struggle. I wish I could say, “You should pray, Adonai will hear!” But I can’t, so I reach to take her hand, placing it on my birthmark. She looks up into my eyes and decides not to pull away. My prayer reaches up into the invisible, I watch hope flood her eyes. I am like a funnel. Adonai will reach through me and touch her...her despair will break into tiny pieces, like burning trash, and float away on the unseen wind.

Adonai has given me this gift, this “key.” She smiles, and a tear gently leaks from one eye. Mom watches the interaction, she’s seen it many times. She loves it when I use my gift. The lady slowly pulls her hand back and wipes her eyes. She looks down, maybe she’s embarrassed I'm not sure. I don’t know what her battles are, I just know, Adonai eased them. I watch her swallow her blessing and then she calls out. “You guys enjoy the movie, it’s always good to see you.” I nod, we lock eyes. We both know...but how do you acknowledge such a thing? She looks down again, I don’t think she understands what passed between us. It doesn’t matter, Adonai has brought His presence, His peace to her heart. 

The sacred spell feels broken when mom takes my arm, escorting me. “I love your desire to help people Britton.” We stop at the concession, and she says, “we’ll have a LARGE popcorn and a small coke.” Mom cuts her eyes at me, smirking. I see the glisten with the smile that’s wrapped her whole face. Cokes, real cokes are not allowed, EVER. Sometimes she’ll let me have the stuff from the health food store. The ones that say, “cola.” What a sad imitation those imposters are. Like people...who pretend to be one thing, but are really something completely different. 

In the world of soda, I want to be the "real thing." 

If you still haven't ordered your copy of The Choosing...Here's the link

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

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ONE LAST THING - Could I pray for you? Is there something I can pray about?

Please send me a message, I would count it an honor to pray for you. 

Candy-Coating Autism

"It wasn't as positive, and encouraging as we prefer. Could you possibly remove some of the more negative comments,

and replace them with more hopeful observations?" I was speaking with a representative of one of the more prominent autism organizations. I submitted an 

article and they liked it, but...

I couldn't even reply, a tsunami of emotions swelled. I wanted to say something like, "If only! If only I could remove some of what is

real, and replace it with a gentler reality, I assure you, that would be my dream." 

I wanted to do it...I tried to do it. The truth is, I JUST COULDN'T DO IT. I want the things I write to be read, to make an impact and yet...

If I'm nothing else, I am genuine. I write things that don't always go down without leaving an acid aftertaste. True, some are harsh, but always they are REAL.

I pray to write things that are full of life, full of hope, and encourage others. But...Truth is very important to me, and I suppose 

I'm just not very good at "candy coating" autism.

The struggle to be open, genuine...transparent...it's not an easy choice. To be real with you, to open up my heart and expose what autism, endless seizures, 

and so many other medical issues do to a person...but not just any 'ole person, to MY SON. What it often does to my whole family.

Opening a wound up for the world to inspect and pick at is not for the weak.

But the truth is that even those with the autism label, those who are suppose to be the countries resources, don't want the

truth without just a little tweaking...cleaning it up, some fluffing? They want you to care...but they don't want you to be appalled.

We all love to read what I call the "exception to the rule" story. I know I do. When the miraculous happens. When Britton typed in 2015

and he was so excited about it that he pushed himself. Typing was what he wanted to do constantly. It felt like a miracle, it was a miracle. 

He typed wonderful powerful words of encouragement daily. He was so encouraged, and he encouraged hundreds of people. 

He typed, "I eat hope like candy." It's been our theme ever since.

The year spun by in so much laughter and the whole family ate hope like it was coming from an unending fountain. 

But then...the seizures came. 

They came with a vengeance, dislocating his shoulder over and over and uprooting the very hope we thought had become a part of us.

The relentlessness of the seizures caused Britton to type that "the never of it" made his life unbearable. Yep, he does have a way with words. 

Since October he has lost over 50lbs. He cannot seem to eat more than about 500 calories...on a good day. We are doing what we can....

we are praying, we are speaking to a doctor constantly...we will get this turned back in the right direction. We have to. 

This young man does nothing half way. He's either on top of the world, or down at the bottom of a pit where no light can reach. 

The weight loss and I'm sure blood sugar plummets and weakness have been really discouraging. The pain is probably one of the hardest symptoms to 

manage. I was trying to talk with him about what we should do when he took up his iPad and began to tell me EXACTLY how he felt.

"I am losing hope. I hurt and hurt and I want it to stop do you believe it ever will? 

I believe hope is not as easy as everyone pretends. Hard for real boys, 

we pretend for it but sometimes we wake up to what is true.

I wondered after I read his words how often I "pretend, instead of embracing what is true?" Do I pretend that somehow his life will get easier?

Do I pretend that there is hope, where hope is rarely ever found? Am I an imposter? Where is the line drawn between Faith and

foolishness?

It was a dark day and I didn't want to share the words....then I thought of how often I am censored by family, by friends, 

by editors, by public platforms.... Then I knew. Telling the truth is what I am called to do. I will never censor him again! 

Maybe what I write is not for those on top of the world--but for those underneath one that has collapsed?

Jesus is honest about the life we are called to lead. There is no guarantee that just because we belong to Him we will

go unscathed. Mostly there is a guarantee that we won't. 

Not everyone deals with a life as intense, and draining as someone who suffers with severe autism. The world would

not be able to bear the weight of so much grief, and would crack underneath it. Those of us living it...have cracked more

than once. But, everyone is living with the "thing" you wish was different. The thing you pray about day 

after endless day. "The thing" that steals your sleep at night. That's the thing the enemy uses to steal your hope, and then 

accuse you of pretending when you argue that it is FAITH! (Never agree with your enemy) 

This past week when all my ads were taken down by facebook...for policy violations, I could

not begin to understand what could be the problem. I changed verbiage, I took off a lot of the text. I tried hard to comply.

I'm unsure if they will ever allow me to place ads again? All my fears have come rolling in. How will I sell my books? How

will I tell the world the risks? What has all this hard work brought me? Then I remembered the last question Britton asked

that day. He said, "Did the sadness make you blind?" The answer is...the sadness gave me eyes to see truth that others

look away from. The sadness has made me bold, and strong. Maybe not as brave as Britton, but I'm getting there.

We can't let the "thing" that keeps us in prayer, the "thing" that that keeps us on our knees, the "thing" we can't see 

a way out of or into, or over...We can't let that thing makes us numb, or blind. It's that "thing" that can sharpen our edges,

give us better vision of what is true, and sand our hearts with compassion for others. 

It seems like the perfect moment to ask ourselves, "Is the "thing" the fear, the anger, the frustration....

making us blind or is the "thing" making us brave?" 

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My Momma Never Ate the Last Piece

What is your best memory of your mother? It's hard to decide...my mother, was a mother extraordinaire. Most of the time she was the perfect mix of nurturing and discipline. She was hugs anytime one was needed, but she was a boundary keeper when you didn't follow the rules. I don't know how she knew how to be a great mom, she didn't have a mother to model. She lived with what is fair to call, a real-life "evil stepmother." Perhaps she learned how to be a mother by watching what NOT to be? Maybe...or maybe she was just born to be one, and it was a gift given to her by God? I'm not saying she was perfect and I'm not saying she didn't make mistakes, but overall, my memories of my mother are pretty stellar. She balanced caring for four little girls with the skill of a circus juggler...and lion tamer. The crazy thing is, she always looked beautiful while she did it. 

I wanted to say that first because...I never wanted to be a mother, EVER. It looked like the hardest job in the world and I just wanted...what I wanted was to not have a big family. To indulge myself with all the things, the nice things my momma never had. She cleaned sticky fingers and faces. She must've wiped down the kitchen table more than ten times a day. She washed a mountain of laundry, combed the hair of four, wiggling, struggling little stinkers. (We did occasionally get a swat for all that wiggling.) She ran herself ragged most every single day, and then come 5pm, she stopped, bathed us all, had us in pajamas and herself in lipstick when my daddy walked in that door. THAT was not the life I had in mind.

I wanted to be able to read books late into the night, go to nice restaurants, live in a house that didn't require constant cleaning. Buy my clothes at a store, not have to sew them myself. Nope, a family, children, that was not the life for me. When people would ask me, "when do you plan to have a child?" I would say, "I don't." That's the honest truth, I had ZERO plans to have one. 

But as you already know, God had other plans. At only 21 my goal of self-indulgence was interrupted by a beautiful baby girl. I spent nine months in sheer terror. A baby, I didn't like them, didn't hold them, the biggest problem was, they could not be controlled. The things I knew about babies I could count on one hand. My momma wasn't the kind of momma that passed the care of the little ones to the older ones. She did it all, and she did it well.

I remember being 7 months pregnant and struggling to eat. (I was always nauseous.) I burst into tears at the dinner table, and squawked out..." my momma never ate the last piece of chicken. She was always suddenly too full if one of us wanted it. What if I'm really hungry but our baby wants the chicken?" Randy laughed and laughed till I finally got mad at him. Blubbering I tried to make him understand. "You don't get it... If we needed something we couldn't afford, my momma could make it. She always, always, always found away." Case in point- one really lean Christmas she went to construction site begging for leftover wood. She made each one of us a doll cradle. She painted them and made them beautiful. I loved that cradle. My doll lived in that cradle for years...I even put my baby brother in it. Do they make momma's like that anymore? 

My momma left me a pretty big apron to fill, I couldn't imagine being anything but as good a momma as mine...and yet, I didn't think I was born with her gifts. I would need to figure it out, find a way...and pray nonstop. 

I hardly ever see my momma now...she lives 500 miles away. She is 80 years old and on dialysis. I live with severe autism, and Britton hasn't been able to travel for a lot of years.

My momma doesn't complain too much, though I can't imagine how she manages her own care and my dad's dementia. Recently she said to me..."How do you do it? I'm just so grateful God never asked me to be the momma of someone with autism. Britton is so blessed to have you, you are one gifted momma." She didn't know I cried, she didn't know how much it meant to me. I'm not sure I ever thought I had measured up, it was sure good to know she thought I did. 

These days when one of my girls asks me how to manage a situation with one of the grandkids, I am humbled and honored. I assure them they come from a legacy of good mommas. My youngest daughter said, "Well I figure you did a pretty amazing job with Holli and me, so who better to ask?" What a gift, what a compliment. In spite of all that autism steals away from a family, this priceless gift I got to keep. The determination to parent a child with all you have is truly a gift from God. 

I am grateful that God didn't let me have my way. Refused to leave me to indulge myself in a clean house, and reading books in my store-bought clothes. I am also grateful that he allowed me lots of practice with two girls before the REAL TEST arrived. Though I must admit, not many of the same rules apply when it comes to autism; and yet the love is exactly the same.

THIS IS MY MOMMA--my favorite picture of her

I know not everyone has a great mother...but hopefully, everyone had some momma figure that stepped in to fill in those big shoes. If you have an amazing mother story, please reply back, I'd love to hear them.

HAPPY MOTHERS DAY TO THE GREATEST MOTHERS I KNOW! 

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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.

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