The thing is even in paradise, autism is autism. It's stimmy, and touchy, and refuses to sleep, and always demands it's own way, refuses to swim in the ocean for the entire vacation. Demands to go to the bathroom in every place we go. There's no relaxing on a beach, reading a book, walking down the beach hand in hand looking at the sunset. No doing the kind of things that we and of course you would do on a vacation. Nope, autism's needs, do not cease to drive my son, and subsequently us, completely batty no matter where we are.
We work all year, we save and save for that vacation. We build it up in our minds and then... autism has its own plans for us. But we have the good moments, the huge smiles, the words he is able to speak while we are there, his comprehension increases to almost a normal level it seems. So, we take Britton to Kauai, for those understandable reasons, sadly autism has to come too.
I want to tell you about one of the hikes we did while we were there. It was our last, long hike along the ridge line of the Napali Coast. One of the most beautiful places I've ever seen. It was an amazing, hike, in Kauai's perfect weather that feels like constant air conditioning. Briton was enjoying this day, and I kept trying to get a picture of him, skipping, and smiling, and enjoying the hike. He would skip, and hop along, (while we panted and climbed) he would bend every fifty feet or so, and touch his knee to a rock or a tree. I have no idea why, he just enjoyed it so much. Super fun to watch him enjoy himself. It is a rare thing on a daily basis. Mainly because, Autism not only drives us to our wits end, it is a cruel master to Britton as well. Taunting and tormenting him, all while he is trying to adapt to this world that rather ignores his existence. sighhhhhhhhh No vacation from autism for him either. :(
That means I'm to tie the streamers and leave a path for the next family. God and I talk a lot on these walks, I think and think, (like Wiennie the Pooh) and God and I "reason together."
Watching Britton, hike, and hop, and skip happily up the trail, I decided that I'd not done a horrific job with him. I mean, how do I know if I've done really good or really bad? I spend far too much time condemning myself for all I haven't been able to accomplish. (Masters Degree in Self Condemnation)
I spend hours regretting when I've gotten angry with someone who definitely acted STUPID. Somedays I default into the mentality of "pawns and puppets, and realize that I'm trying to decide whose victim I'm going to be." I start telling myself how powerless I am, that God is going to do, what God is going to do...and hey being God's victim is better than being anyone elses, right? But by the time I think it all the way through and try to imagine God being okay with me being even His victim, I realize that God always replaces victim, with victory and I look up and realize I've made it to the summit. How fitting.
This past week we had a "fun" incident in the Hobby Lobby. Britton's obession with bathrooms may be the end of me. It seems he MUST go in EVERY bathroom, in every place we go... at least once. TWICE is my absolute limit. We had come from lunch and although I NEVER go when we are out together, I had no choice. I told him if he came out and I was not there, I was in the Ladies Restroom, and would be right out. He went in the mens. I hurried into the Women's, and barely got in position, when WHAM he comes running in and scares an elderly woman as he whirls by to the last stall. OH NO!!! I hurry, and go out and get him to wash his hands and out we go. The woman, has gone and gotten the manager. They accost me as we exit, and the manager is very hateful. He says that "If I can't control Britton, he should not be in his store." Fabulous. It makes me really sad, and then...really mad, so...I say, "well you have no "Handicap" restroom, where I can take him by myself? I am sorry this woman was frightened. BUT... he did not touch her, he did not hurt anyone, he only went in the wrong restroom." I just kept standing there thinking, "How many of us are faking that we aren't dying inside?" I kept looking at the woman wondering what feelings prompted her to do this deed? So many times I've wished I was invisible. But do I really want to be swallowed alive and dropped down a cold, black hole and no one notice?" Yep sometimes it's not a pretty place in my head.
So like hiking a really long, big incline, out we went with our tails tucked between our legs, heads down in yet more shame. (Remember that cloak from last blog? ) Such is life with autism. Talk about a square peg in a round hole... autism is a bizaare shaped peg that fits NO HOLES! Where do we fit Britton? I wish I knew. I wish I was a better guide on this trail. I don't know the way, and I don't know what's ahead. I wish we weren't in complete darkness. But we have to keep hiking cause we can't stop here, keep putting one foot in front of the other. It's all I know to do. I close my eyes, put my hands in Gods and I take another step, praying I'm not stepping off a cliff, believing that I'm on the right trail. So far, only a few near death experiences. :) It's at these moments I wonder if I should leave the outrageous faith to the Christians who haven't been beaten up by life yet. I'm pretty sure that's not how this whole thing works though.
Autism is a condition NO ONE wants to deal with, heck no one really wants to even know it exists. From it's extremely unpopular, controversial cause, to it's nearly impossible ability to manage, it really gets almost no sympathy, or understanding from the masses. If you're thinking, "wow she's in a mood, throwing herself a pity party." Maybe I am. I'm just so worn down. Let's be honest, I hate autism far more than you can imagine. I hate watching autism ravish my son's brain and destroy his intestines. I hate that the future that God planned for him is stolen. I hate that no one on this planet gives one rats ass for all the suffering that the PHARM whores have caused so many families, and then allowed our courts to give them immunity for what they have done. I hate that the "respectable mothers" just walk like sheep to the slaughter with their tiny bundles of joy in tow straight to the Pharm Slaughter. All the while, they look at me with condescending eyes, not realizing they are one vaccine from crossing over to this relentless life. Yep, trust me, I hate autism far more than you do. Hate really isn't a strong enough word. I'll go with loath.
Still with me? Impressive. Well then, I'd love to tell you about another hike, our favorite hike, the one we look forward to every trip back to Kauai. We hike a trail called, Kalalau. It's considered a "difficult hike" that requires proper foot wear, enough water, and that you should be in good physical condition. Let's just say the first few times we did this hike, we were clueless as to what proper gear really was. It's a hike around a volcano. The first time we did it, we had no idea that you should not get caught up on the mountain after sundown. Take the pitch black of night and compound that with the pitch black of volcanic sand, and you seriously can't see your hand in front of your face. That's not a good idea, when staying on the trail is a difference between life and a 2000 foot plunge into a crater.
Yep, just like autism. We walk that black trail, in the dark, wishing that someone, anyone could shed some light on our climb.... The first time we hiked it, we took our good sweet time, having no idea we would end up in pitch black at 5pm. It's hard to navigate in the light, with the best hiking shoes.
It's an eleven mile hike with lots of climbing up for miles, only to have you lose all that elevation the next mile. The views a long the way are beyond spectacular. Something that you almost have to see to believe.
Much like autism, you work and work and you think you're about to make a huge break thru, you get a behavior under control. Maybe you even get a word or two...and bam, some physical illness surfaces, and your son's behaviors leave you on the floor crying again. What to do next? Keep on climbing? Yep that's all there is to do. Get back up and take the next few miles, hoping to gain back all the elevation you just lost.
This particular hike, is one of our favorites because after four miles, you end up at a beach. So all the elevation, and then you descend into a valley that has a beach that is only accessible on foot, or by boat. We walk down the large black lava rock, to the white sand beach. The waves roll in and take our breath away. It's hard to ever leave. This year, we didn't continue the hike. Britton sat down, right at the ocean edge, and watched the ocean for over two hours. He had the biggest smile on his face. Two hours, he doesn't do anything voluntarily for two hours. This was one of those magic moments. A moment when all our hopes for his future come soaring up and fill our hearts with hope and joy. We allow ourselves for those few seconds to remember peace and happiness. To remember that there is a "Hope" for our son's future too. That the God who makes oceans and sky like these, can deal with autism with but a single bat of his eye. ahhhh peace for a moment.
People crack me up about our trips to Kauai. They will insinuate how rich we must be. It's hard not to laugh, really hard. We aren't even sort of rich. We are desperate. We just know, that taking him there helps him. He loves to go. He loves to hike. He loves to sit and watch the waves. Always, every time we go, we get some language. Sadly, we look forward to those few words we get, every single year. So, we are willing to sacrifice for it. We sacrifice past good sense. We go and it costs us more than can be imagined. Picture yourself on an 8 hour flight with a young man with autism. Now picture yourself, the caregiver of that young man. YOU are responsible for his behaviors. Scary isn't it? If I've said it once, well you know the cliche', but autism is always a wild card at best. You never know what might happen. Worse than that, you never know how other people are going to respond to what he does. Getting him there, has never been easy. This year however, is the first time he had a meltdown on a plane. It wasn't a wild, crazy, "Oh MY GOD, this is nuts meltdown," but it involved growling, biting, and demanding for something we couldn't give him at that moment. (bathroom during turbulence) I think I should tell you that only one person stared nonstop. Almost everyone, was kind, and caring. The flight attendant tried everything she knew to help us. God Bless you Alaska Airlines. I will fly you every chance I get. They were amazing to us. It was a long flight, and I could've kissed the ground when it was over. But that is a small price to pay to have him free of autism for a few hours. Free to watch the waves with a big smile on his face. Free from his damaged body for a brief moment. I'm just willing to do whatever I can, to give that to him.
People often ask us why we don't move there. Goodness, if I could figure out a way to make a living, I'd leave skid marks in the drive way. I may figure it out someday, and if I do, Aloha!
