I was ordering some new checks this morning. I decided on Autism Awareness checks, because a portion went to support autism awareness and acceptance, and as a mother of an autistic son, it seemed the right thing to do.
My life is so busy and crazy I seldom slow down to just think, but while ordering the checks I got to thinking about all the challenges Sammy is facing as he grows older with Autism. I got to thinking about this special little boy, and all we've been through together, and my heart started breaking.
I adore and love all my children, both natural and those God blessed me with through marriage, but if I'm to be truthful, there is a little spot in the corner of my heart that my firstborn took when he was born that belongs only to him and Jesus ( I mean, Jesus gets all of it...that's just the way it is!). I can't help it. It just is.
Since the day he was born, Sammy and I have been.... sympatico. No other word for it. We understood each other in a deep way. I sensed his needs and he sensed mine. I was his home base. He was my touchstone. I knew what he was thinking, and why he was thinking it. He was diagnosed with Asperger's syndrome around age 5, and in learning about Asperger's -which is part of the autistic spectrum- I learned even more about how he ticks. I could always help him. I could calm him down, bring him around, cheer him up, and make him smile. He could take the worst day and turn it around just by saying something sweet. Yes, definately he is a mama's boy, and I'm okay with that.
Lately, it's been different.
He's 11 now, and the challenges he is facing are greater than they were. The school work is harder, the social interactions are more complex. The sarcasm, jokes, and innuendos are all around him and often so subtle (and so hard for Asperger's kids to understand!). He's more aware of his own limitations brought on by the Autism, and more frustrated by them.
The worst thing of all.
I can't make it better anymore.
Take homework for example. He will freeze up. It's like he literally just can not even put the pencil to the paper. It isn't that he doesn't know the stuff, he does. He just CAN'T DO IT right then. He doesn't know why, I don't know why, and nothing I do or say can make it better (although often I can make it worse if I'm not careful!). He can't do it, but he doesn't want to put it up because he doesn't want to go to school without it done, so we will have a boy sitting infront of a text book and paper for three hours, tearing at his face and hair with his little fists that even at 11 still have little dimples in the knuckles like a baby. His face will be screwed up in anguish and I know he is suffering personal demons that I just don't understand anymore. It's the first time in my life I haven't 'got' him completely. All I can do is pray over him and hope it passes.
I realized recently that he struggles greatly with assignments where he has to write something personal. I questioned him extensively and finally came to the conclusion that anything attached to emotions are hard for him to write about. In a way this makes sense.. he feels VERY deeply, I have no question of that. His love for me is not in question, his compassion for people is not in question. I know this because I know him, but his actions don't always match up with his feelings. Something where you or I would instinctively know called for giving someone a hug, might cause Sammy to get up and walk into another room. Things for him are either "the best thing in the world" or "the worst thing in the world". Everything is very black and white, good and evil. Sometimes he gets it right, sometimes he doesn't. He watches others, and he mimics them. This is how he learns how to relate to people, because it isn't something natural and instinctive inside him. Talk about pressure. I feel as if I have to be the best possible role model, because I am the only thing that tells him how to act around others.
Recently he has been trying sarcasm. I've had to advise him to just stop for the time being. Sarcasm done wrong isn't funny, it's just mean. He most of the time comes out sounding mean or rude. He doesn't have a good enough grasp of 1) what sarcasm is and 2) human beings and how they work to even begin to pull it off. My 9 year old girl can pull of sarcasm with grace and make you bust up laughing when she does it. She is quick witted and has a gift with being rude in a funny enough way that you don't really mind. Also, she knows when it's appropriate (at home with our family, with her best friend) and when it's not (with your teacher or somebody who doesn't like you much, or when you are in trouble!). For Sammy, those things are often beyond his grasp.
And now, Sammy is beyond my grasp. I can't always make him feel better. I don't always understand what is going on in his mind anymore. The disease - disorder - syndrome - whatever you want to call it - the DIFFERENCE in his brain has outdistanced my understanding. I get him therapy, and I pray for him a LOT, and I love him with everything I have. I try not to lose my patience with him when I'm losing my patience with the Aspergers. Sometimes I fail, but mostly I do okay. It can be really really frustrating. We are blessed with an understanding school, and wonderful understanding teachers he's had since day one. That helps so much. Mrs. Williams will modify homework so he can write about an imaginary person instead of himself, and the days where that pencil just won't touch that paper and after two hours I just pull the book out of his stiff hands, wipe his tears and make him sit and watch a tv show with the family so he can relax his muscles before bed - well those days I will write a note and Mrs. Williams will give him grace.
I know that the world out there doesn't give much grace. I know that one day a job won't care if his mind is freezing up. College won't care if his assignment freaks him out on 10 different levels. The world doesn't care about my Sammy. I have to prepare him for that world, and so we keep moving forward, keep him in therapy, keep helping him to grow and stretch and deal with the discomfort that is his mental world.
But my heart is breaking.
I just want to hold him, and make it all better. I just want him to not have to worry about this. There are enough worries in the world without having a brain that won't work WITH you to cope with it. I feel so deeply for the invisible illnesses out there. For those with crippling depression, high functioning autism - where you aren't necessarily seen as handicapped - and so just end up being WEIRD. Chronic pain like Lupus - disorders where you walk around and on the outside you look normal, but on the inside you have a daily struggle just to keep on keeping on and hold it all together.
Oh Sammy, how I wish I could knock down the wall of Asperger's that is growing between us - how I wish I could live in your brain for a day so I could better understand you, and the young man you are becoming.
Mommy misses the sympatico. It's just not there like it once was. As you grow more complex and fascinating, you grow more complicated and unknowable at the same time. Your pain is yours alone and you don't seem able to share it anymore.
My arms are always open, mommy will always be here. No matter how complicated it gets. I love you Sammy.
