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.