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.
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.
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...
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
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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it's difficult to offer a comment after reading that.
ReplyDeleteBecause you're right.
I don't understand
and words are so small.
and even smaller when they're trying to be love.
As an outsider, I don't know how to help.
What I know is nothing and whatever words I could scrape together to say are useless.
And my prayers for you all are so far away and don't seem to make a scrap of difference when you're in the car or house alone, fighting off a grizzly bear.
So I struggle to know how to respond.
Yet I must respond. Because I want you to know that I'm reading.
I read your posts, your emails, and
my awareness and perception are changed because of what you dare to share.
I tell others to read your book and sign up for emails,
so their awareness and perception can be changed also.
And I don't know what else to do or how else to help.
I'm sorry.
I'm sorry your journey is so hard and mine is so far away.
I'm also afraid.
If I knew of a family who struggled like this, and they lived down the road from me, I'm not sure I would know what to do, even after all you've shared.
I wouldn't know how to approach them.
Or help them.
Because words are so small
and I don't understand
so how could I possibly walk into their house, unaware and untrained, and say, "Hey. Let me take over for an hour". With my lack of awareness, we'd both die.
I wish I knew better. I wish I was smarter.
But I don't know how to become that except to dive in, which I don't know how to do.
So all that's left is words. And prayers.
They are so small.
Then again, maybe they're more powerful than I think.
After all, it's your words that are changing me, changing my awareness, my heart, my perspective.
And words have in them the power of life and death.
You are always articulate in your struggles and so many of ours whose loved one is severely effected by vaccine injury (autism). I am a Grandmother who from the time he was born loved him, and cared for him when his Mom worked. 24 years later I am still caring for him and will do so as long as the Lord allows. It is rare, I know. But I love him like he is my own. May God grant all our families mercy and His grace and also justice.
ReplyDeleteSorry guys, and for Britton too because he doesn't understand what's happening to trigger him. Can you get him maxed out on something like Pregabalin for seizures (and the brain's pain response - I've got chronic pain), an anti anxietal, and pain meds / buprenorphine patches ?
ReplyDeleteA random additional follow up, what colour hair has he got ? Redheads have lower pain thresholds, so that could also factor when it comes to appropriate levels of pain management / dosage increase to compensate.
ReplyDelete