My cup runneth over. Seriously, I have more blessings than I could stir in a bucket and I truly appreciate them all. I have two beautiful boys despite the years I wondered if I could ever be a mother. I have a super sexy beef cake of a husband that is the best provider and daddy to our littles. I live in a precious farmhouse with all the character you could ask for. I stay home with my babies and watch them grow and get to teach them every day. And let’s not forget, I live by the beach. Try not to feel sorry for me. Here’s the catch…my cup that runneth over is also empty. How could that be? I’m not sure but it’s bone dry. Not even day old coffee grounds stuck to the bottom.
Let me explain. My day is filled with chaos. Of course, it is. I’m the mother of two small boys. But my life is lived on super-high-alert-panic-mode 24/7. Everything is a crisis. Today, I have a love/hate relationship with autism. There, I said it. I love the way autism gives my son a creativity and world view that I would not have been privy to without the blessing of being his mother. I love that autism allows him to calculate things that simply don’t make sense for him to know, like just knowing how to play the drums. Or memorizing all of the presidents. Or knowing the release dates of all the movies he watches. Being able to tell who the artist of a song is before he even hears a voice, simply because of the way the music sounds. But damnit, I want to hold my son. I want to kiss his little face without him looking like I am physically hurting him. I want to do homeschool without repeating myself 5.7 million times because, “my brain is out of control, momma. I can’t hear you.” I want to get a babysitter and leave the house with my husband. I want to sleep with him in the same bed, without kids…this includes the floor. I want to go into a room and shut the door and be alone. I want him to go to sleep at a normal hour so that I can have adult time. I want him to not wake up 23 times in the middle of the night because he’s scared. I want to leave my own room in the morning without fear that he will wake up in a panic that he is alone.
We do a therapy called neurofeedback that helps with symptoms of his autism that manifest as OCD, ADHD, and severe anxiety. During this therapy, he has EEG electrodes attached to his head. The therapist recently pointed out something called “sleep spindles” on the screen. She explained that these usually only occur in people with autism and that it is basically like a car with a bad alternator trying to turn over. There are spurts of energy that are firing at the synapse but the brain is basically flickering. Like trying to start a lighter that’s out of lighter fluid. His brain is momentarily asleep during those times. So OF COURSE he can’t focus, or think straight, or has constant anxiety. OF COURSE he tries to control his environment in what little ways he has control over. I get all of this. And it saddens me to my core.
But you know what’s worse? Feeling frustrated when I know he can’t help it. Trying not to scream after the 11th time I repeated the directions. Or losing my religion because I tried to sneak in the other room to make a phone call and realized, I don’t have that privilege. Or feeling like I might smack the paint off the walls because I am never off the clock. Never not on edge, ready to put out the next fire. Then I think about so many others that have it worse than I do. I’m not sure how they survive.
My goal throughout this experience has been to educate and advocate for my son regarding the challenges and differences that accompany ASD. But a huge part of the struggle is that of the care giver. And the guilt the care giver caries. “How can I complain? It’s not his fault. Am I doing enough? How much more can I take?”
As I sit here writing this, doing the ugly cry (my poor husband), I think the hardest part of all is that he has no idea how much I love him. How much I try. How sorry I am that I lose my temper or my patience with him, knowing it’s not his fault. Since autism is a communication disorder, will he ever know?
Until I can pull it together and act like a normal human again (I’m not sure when that might be), remember that I am trying. Yes we are late, yes I’m grumpy, yes my kids act like I injected them with cocaine before we left the house. But sweet baby Jesus, know that we are trying the best we can. And sometimes my cup is just plain empty.