CLIMBING THE AUTISM MOUNTAIN
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.
