Autism just does not cooperate with the "REAL world." But autism IS my real world. When our lives betray us, and it happens to everyone... Autism does not budge. Actually, Autism will usually kick up a notch because my son can sense any extra anxiety in anyone around him, especially me. Which in turn, makes him more anxious and it's like pouring gasoline on a fire. Whoosh! Then, nothing else matters because all his autistic challenges are magnified. By autistic challenges I should be more specific. Last blog I talked about the constant touching, tapping my head, squeezing my hands tap, squeeze, kiss.. over and over and over. It's almost nonstop. So if I'm on the phone.... I'm talking, it's like this,"hello, yes (tap, tap, tap, squeeze, squeeze, tap, kiss, kiss, kiss) my name is Teresa Holman, (tap, tap, tap, squeeze, kiss, squeeze, tap and kiss and tap.) Seriously, that's just how it is. You almost have to see it to believe the reality. (Perhaps a short video is in order?) But there is also the constant hand shaking, humming, walking on tip toes, and one of his new favorites, slamming the toilet lid over and over and over.... You may be thinking, oh big deal, my teenager has about put me in the looney bin. Well I understand. I've already had three teenagers nearly put me there, and trust me, I'll take on a teenager, well now I will. Experience is definitely a cruel teacher.
This past month, I had the unfortunate experience of having my car stolen. Now, that's bad enough for sure... but add to that, autism that seriously needs things to stay the same. So when we change cars, it's a big event. My husband has been driving his truck for over seven years and 140,000+ miles, and I don't know that he will ever get anything else. Britton loves that truck. So, as my grand daughter said, "where is nana's car? where did it go?" Well now that's the question isn't it?
For almost a month Britton has tried to get into every white SUV that resembled mine in every parking lot. He NEEDS that sameness like the rest of us need air. It's been a struggle for sure. So while the thief was joy riding around the city in the car that I was making payments on... I was telling my son, "momma is sorry, but we don't have that car anymore. You'll need to ride in this rental." He was not very happy. He would open the passenger door and look in. Close the door, open, close, open close, about 4-5 times. Then he'd repeat the same ritual on the passenger front door. Sometimes it would take ohhhhh 20 minutes just to get him IN the car. Not such a big deal in my driveway, but put that same scenario in the Kroger parking lot. Yikks!
So.... I did what any self respecting Autism mom would do, I bought another car, exactly like the one I had. Trust me, it was the best thing to do. You might be thinking I did it for him, honestly I did it just as much for me. I just couldn't do it anymore. I couldn't watch his distress over trying to adjust, because really, I had a choice. After almost 22 years of autism, I get it, I really do. It was almost physical pain for him to deal with such sudden loss of something that keeps his world in place...I guess it's the little things.
The Dodge dealer assured me that finding a car exactly like the one I had was going to take some considerable time. So I went looking myself. And right in the middle of a used parking lot of a TOYOTA deal, there she sat. My heart sang with joy. It was identical minus the DVD player. It was a year newer with only 1500 miles on it and CRAZY CHEAPER! It is moments like this when you KNOW how personal your God is. It's not that common, in the Christian life to see the "years restored that the locust has eaten." Oh happy day. I am grateful that this was not a battle we were going to have to struggle through. I just want to say, "GOD is so very good."
A really long time ago, (maybe like 10 years) I wrote a short article for an Autism Newsletter. I entitled it... "Oh for the Invisible Life." What I meant by that is.... When I'm in Walgreens, and my son FINALLY comes out of the bathroom (from slamming toilet lids for 20 minutes) and his sleeves are soaked from washing his hands, and his pants aren't zipped, and his shirt is tucked in the front and hanging out the zipper. At that moment, I wish so much that we were both invisible. Because no one can SEE HIM, the way I do, the way God does. They only see this "retarded man" who sticks out like a cat in a dog pound. There is no keeping autism under control. There is NO making autism just stay calm. There is no being invisible, like the "normals." So in case you didn't know it, "YOU are invisible." No one SEES YOU unless you do something out of the norm. Which is fine with most everyone I know. We can be noticed, by extraordinary acts of kindness, or rudeness. But most of us, we'd rather be invisible. Be honest, it's so much easier that way. I challenge you...next time you're in a check out line, look around. Do you SEE the people around you? Do you ever remember anyone around you? No? Just like I thought Invisible.
Disclaimer- (I'd like to exclude all 15 year old girls trying to get the 20 year old check out guy to notice her. Or the other kind of people, that prefer to have everyones attention, every family has one, you know who you are!)
Avatar is one of the movies that Britton always picks to watch. If I think on it too long I'll just sit and cry. In the movie the main character is paralyzed, and is able to be placed inside an avatar body and there he can walk, run, jump. All the things his physical body no longer allows. HE becomes a "dream walker". I so often wonder about Britton, and his dreams. Is he a dream walker? Honestly, I hope so. They say that for quadriplegics they often spend more time sleeping and living in their dreams than awake. And who can blame them? Life "out here" is so difficult. Maybe HERE is the nightmare, and THERE is a reality that they have better control of? Maybe..
I haven't mentioned it in a very long time, but Britton use to talk. In case you don't know, Britton lost his language, all of it. We do hear an occasional word, like maybe 4 a year? But, before autism, Britton talked early, and he talked a lot. He was extremely verbal. He is the kind of person who needs to talk! I know HIM, I know his heart longs for the ability to be heard, to be understood.
"I SEE YOU." I love that line, from one of the main characters in the Avatar movie. She has some serious things to discuss with her father and so, she walks up and acknowledges him with those words. It was meant to be a way of saying, "I really know who you are. Not just what everyone else knows, but your true soul, all your strengths and weaknesses. People with autism, are really only KNOWN by God. But wait, ALL OF US are really only known by our creator as well.
We may feel known, by our spouses, or by our best friends, until some very serious tragedy strikes, and BAM, we feel no one knows us really. There is a scripture that always brings me peace when I feel no one knows me, understands me...
“You know when I sit and when I rise; You perceive my thoughts from afar. You discern my going out and my lying down; You are familiar with all my ways. Before a word is on my tongue You know it completely, O Lord.” Psalm 139:2-4
As Autism parents, we are "emotion sensors." Sensing what no one else can possibly understand. The connection we've created with our children is almost a form of ESP (extra sensory perception). We SEE our children, because we have to. We need to see them as much as they need to BE SEEN.
Sometimes in prayer, when I'm finally quiet, I'll begin with "God, I know YOU SEE ME?" And I am certain that, He knows what I mean.
So when Britton runs down the stairs naked, (always when there is a stranger in the house) takes off his shirt in a restaurant, or walks around with a sock hanging out of his mouth...(No, I have no idea why.) I close my eyes and I can hear God whisper, "I SEE YOU," and no matter what is happening, I take a deep breath and feel His peace wash over me... cause I know He does.
