"The worst distance between two people is misunderstanding."
I suppose it's sort of like pain... you get use to it after a while, and then it takes more and more to make you flinch or cry out. So many children with autism hardly ever complain about the pain they are in. By the time they are desperate for you to understand that they are in unbearable pain, it's some condition that is way past serious. For my son it has been Crohns, something that most adults I talk to go to the ER and get morphine for. Or maybe it's the strep infection that has attacked his brain, and all the antibiotics in the world just won't kill it. That, THAT sends me pretty close to the edge. Wondering if he's in unbearable pain, and I don't know it. Wondering if the last time he bit me or shoved me, if he just was at the edge of endurance himself? I just want to help him, but how do I know how? There is NO ONE that can help me figure it out... no one on this earth.
"I was never insane except upon occasions, when my heart was touched." Edgar Allan Poe
So back to it, what is it for you? Is it losing your job? Breaking up with your girlfriend, mean boss that treats you rotten? What's it take to push you to the edge? The reason I ask, well I think that sometimes I am just a little shocked by what pushes someone right over the precipice. It's a miserable marriage, or maybe being behind on your bills, kids that never call, needing to move, maybe all of it at once?
Don't get me wrong, I'm not saying those things aren't stressful, but honestly I'm hard pressed to be sent to the edge by such things. Situations that actually have choices and possible solutions. I use to be that person, I use to have the luxury of being so, well let's be honest, so spoiled. The reason, well I live in a house with a beautiful young man who is tortured by autism. He spent his 23rd birthday hardly aware that it came and went.
Watching autism, participating in the care, and guidance, medical choices and schooling and just life of someone you love, who cannot whisper one word of their frustration and pain... well it's more than life altering. It's life shattering, how can it be otherwise?
"You are so brave and quiet, I forgot you were suffering." Ernest Hemingway
I'm a control freak by nature. It's how I was born and how I was raised. To attempt (however futile) to control my own future, my own destiny. It's hard not to laugh even as I think about it.
About 26 years ago, I was a very different person. I was the boss to 34 employees. I hired and fired, and was confident of my decisions. I worked out, had low body fat, my house was clean, I cooked good food, and considered myself a woman of excellence. A typical Type A personality. But then there was autism. Over the years so much has changed. I HAD to let go of all that. I HAD to realize that the life I had was what I now consider a life of luxury. I am not attempting to offend anyone, I am attempting to give you a different perspective. You got sharp edges? You're a control freak, Autism is here to help sand you down. During that sanding, you will need to set aside all the things that don't really matter. All the things that use to mean so much to you, most will sand off rather easily. Now, they are probably more a hindrance to your new life, than a help. There is no way to share the lessons you learn in the valley of the shadow. It's like battle scars, those are yours alone, along with the lessons learned and the muscles built.
"You, he said, are a terribly real thing, in a terribly false world, and that, I believe, is why you are in such pain."
After 23 years of autism, of struggle, of pain, even I am stunned by how changed I am. I use to be someone else. A person who thought she had it mostly figured out. A person who was a director, a professional. Heck, I took the Dale Carnegie Course. LOL But I have to be honest, I'm not that person anymore. That person is long gone in the sanding process. Laying in the sawdust of 23 years of sanding is most of who I use to be, who I thought was the best person I could be. I suppose I shouldn't laugh, but as I do tears come in my eyes. I do grieve the loss of who I was, who I could've been on occasion. Then I remember, God will give us beauty for ashes. Perhaps hope for sawdust? I have often realized, I would not even be friends with that woman I use to be. Ouch!
I don't know why it gets to me. God wanted me to be the best me. What HE values, more than what I, value. He didn't want me to retain pride, envy, selfishness. He wants to sand that off of each of us, I apparently require a great deal of sanding. So many times I feel sore and raw. This past few months have been long and difficult. ( I'd believe it if I saw an electric sander in motion.) My son has had many ups and downs. He has struggled with illness, with drug side effects, with a new caregiver, with his parents working too much. Finding a new school after leaving the one he had gone to for 7 years. New beginnings, so very difficult for those with autism. People say such nice things to me. Things like, 'you handle it all so well. You are so brave! I could never do what you do." I so appreciate your kindness, but you are wrong. I am neither brave nor strong. I am a mother, who will do whatever is necessary to help her child. I am, no different than most of you.
Somedays I wonder if I'm just pretending to be handling it all. Pretending I'm the same person I was before autism. That I'm NOT a ghost of my former self.
When the holidays come and life with autism just gets that much harder as there are more and more "NORMAL expectations" placed on those with autism... I catch myself wondering if I had died in the ER more than 20 years ago, while I was doing CPR on my son...am I pretending that I didn't lay down beside my son's convulsing body and just give up. Yep, pretending, I'm good at that. I pretend I'm just fine, I pretend I can manage, I pretend that I've got it under control. I pretend that when I have finally, gut wrenchingly asked someone for help, and they basically slough me off that I'm okay. Talk about smoke and mirrors. But somedays I just don't have the energy to pretend anymore. I'd like to add a giant disclaimer here. ( IF you catch me on one of the days that I forget to pretend, forgive me. God will give me the strength to pick up my mask before long and we can both pretend I'm okay again. )
"You are free to choose, but you are not free of the consequence of your choice."
But when I do stop pretending. No one wants to hear it, even I'm not sure you should hear it. Honestly, it's not whether you should hear it, it's whether you can be trusted to hear it. You will think you know something about autism when you don't. You will think that it's my fault, my husband's fault. Some ones, anyones elses fault. Ya know why? Cause you need someone to blame as much as I do. You need the Pharmaceutical Industry to be saints. To be what they were in the beginning when they tried to help people. Instead of the money whores, and lying drug dealers they have become. Yep I know that sounds really harsh. (I'm pretty sure I just said that right out loud. I'm sure some will be offended. For those of you who are, I invite you to spend a mere 24 hours with my son, and then you can voice an opinion, having imagined your own child in my sons place. Frightening isn't it?.)
The companies that place our children on a conveyor belt to death without even wincing. (I suppose we are "decreasing the surplus population." Ebnezer Scrooge")
Well here's a bitter piece of the truth, I don't want that to be true. In spite of the propaganda of the BIG PHARM, parents of kids with autism wish there was a different answer. Think about it! It would be so much easier if we had any other answer. Genetics, some hated toxin, even an industrial poison, anything but vaccines. But unfortunately two plus two continues to equal four, and so here we are. Struggling and struggling with autism and all the other illnesses that go with it.
Oh didn't you know? It's not just AUTISM, it's Crohns Disease, and irritable bowel, and Strep infections that never go away, and yeast that won't ever die, terrifying seizures and various other fungus that lodge in our kids guts. Apparently all kinds of parasites seem to make their home in their intestines, and the list goes on and on.
The aggression and violence that takes place almost always is related to pain these children, and now young adults endure every moment of their lives. The Nausea of all the meds to help with all the inflammation that causes their intestines to malfunction. But aggression and violence is just part of the world of most of us. Most of us have been biten, pinched, punched, shoved, spit on, vomited on, cleaned up more feces than a kennel owner and lost more sleep than most of you reading this blog would be able to believe and maybe not even survive. I know you're thinking, boy is she laying it out there... You would be right. I am so sad, over the struggle of autism, over my friends that I love so much whose children suffer so much from autism. We have become an army of families. Families who battle the same enemy. Fighting for our childrens lives, fighting for the truth to be exposed... to someday save your child, and just praying for any amount of recovery that we can gain.
"Friendship is born at that moment when one person says to another: what, you too? I thought I was the only one." C.S. Lewis
I really did think, hope, pray that as he got older life would get easier. I hoped. It hasn't seemed to work out that way. He is at least as demanding, and certainly big enough to carry out any wants or needs that he is not going to do without. sighhhhhh Autism is so hard when their little, and so hard when their big. At least when their little people SEE a small child and they have some compassion. When they are big, people see a grown up who is misbehaving, and scary!
There is no condemnation there, really there isn't. I was the same way. EXACTLY THE SAME. I have no right being angry at anyone who runs from my son, I WOULD HAVE RUN TOO! I am not excusing the ignorance, I'm just acknowledging that I was ignorant too. No condemnation, really.
So, as I finish this blog, that I pray at best gives you more understanding, or at worst leaves you shaking your head ...
A very unexpected thing broke me this past month.. We were in a mess of need, and had no way to pay the gigantic bills that autism creates. The facility he attends asked us to pull him out. His caregiver quit, and I lost all my experienced employees over the course of a few months. We did what we know to do, we cried out to God. In a matter of a few weeks, someone who did not know our need, stepped up and asked to help us. (Yep they asked us! They still do not know that it was God intervening, and using them) Crazy as it sounds, it took several miracles for that help to be available to us. Those I expected to help us, did not. People I never even thought of, offered to be God's hand. I could do nothing but send thank you cards.
What is a card when you have altered the future of an entire families life? How grateful I am for those of you, who just reach out to me or my family in such unexpected ways. Those willing to excuse our struggle, and never judge. Who are truly sorry for our difficulties, and are grateful they are not battling it themselves. Those of you with compassion and love towards my son. God's love for us, it broke me in a very different way. I am one more time humbled by God's love and care for us. YOU, who knew the need and prayed, you who did what you could to help the miracles happen, you who stood in awe as God delivered us one more time....
YOU ALL, were Christmas to me. I cannot repay your kindnesses, but I can ask God to.
So as we end 2013, I bow on my knees before the cross, and one more time I say, "God Bless us, everyone."
"Some believe that it is only great power that can hold evil in check. But that is not what I have found. I have found that it is the small everyday deeds of ordinary folk that keep the darkness at bay. Small acts of kindness and love."
