Today left me broken. I’m still trying to pick up the pieces. She was having such a good day. This morning, she ate breakfast at the table with her sisters. (She rarely ever sits still that long.) She did her homeschool work alongside her siblings as if it were just like any other day. (She always insists on doing school work alone.) She helped them pick up their toys and problem solve during their arguments. (Typically, she’s the one making the messes and starting the fights.) She hugged me tight, looked up at me and smiled. (She doesn’t usually like to be held.) She was having such a good day…
Then it all fell apart.
Her therapists have been working her so hard lately and she’s been excelling. Every day she’s gaining new skills and I couldn’t be more proud. Yet, as they push her to be more flexible, she’s on edge. The rules she’s set up in her mind, the ones that make her feel safe, aren’t rules the rest of us can live by. We as humans can be unpredictable. For someone with Autism, that is terrifying. In her mind, change is chaos. The level of order and structure she needs to make sense of the world is impossible for the rest of our family to live up to. We can provide some routine but, as we know all too well, life is not entirely predictable. Though she’s slowly learning to adapt, they tell me it’ll get worse before it gets better.
Today, there was an unplanned schedule change. In our world, no big deal. In hers, a really, really big deal. I could feel it…her panic ran hot through my veins. Though at first it was only tears, she couldn’t hold herself together for long. Her therapist led her into her bedroom to handle the meltdown while I stayed in the living room with my other children. The intense screaming began and I worked hard to follow the instructions I’d been given in the ABA parent meetings to stay away until she was calm. A half hour passed. It had only gotten worse. This is not uncommon for my daughter but it never gets any easier for any of us to endure. I pulled out the strongest version of myself and talked my younger children through their emotions, reassuring them that everything would be okay. If I’m really honest, I don’t always believe that’s true.
Then I heard it. My child, in sheer terror at what was happening inside her body, screamed the words I’ll never forget:
“Somebody help me!!! PLEASE!!!”
My child is trapped in agony, her own mind and body betraying her, and I can’t help her. During her meltdowns, whether I’m right beside her or a million miles away, there’s nothing I can do. Nothing in the world cuts a mother’s heart quite as deeply as feeling absolutely helpless to save her child from intense suffering. Today, my baby suffered.
The flame in my heart…I’ve been trying desperately to keep it burning. I’ve tried for months to be mostly positive and keep moving forward. I’d let myself have my bad days but I’d always try to bring the day to a close focusing on the blessings found in having a child with Autism. (Because there are many, many blessings.) I’d allow myself to cry some, but I’d come out determined to face the next day with strength. My flame would grow dimmer but I’d never let it go out. Not today. Today, my heart went dark.
Though I’ve been through other horrible meltdowns with my daughter, this time I wasn’t the one in the room, distracted by the task of physically keeping her safe. I’d always approached these situations in survival mode. No thinking, just doing what needed to be done. This time, I was on the outside listening in. Hearing every detail, the eyes of my soul were more open to all that she’s battling. So, for the first time, I’m truly feeling her pain the way only a mother can. The tears aren’t stopping. My body hurts, my mind is tired, and my heart is heavy. I have nothing left to give and all I feel is sorrow. Deep, deep sorrow.
Days like today, if I’m brave enough to face the whole truth, are the days that I hate Autism. I love my child, more deeply than words can express. Autism is a part of her story and, in a lot of ways, is a beautiful thing. In other ways, the ways that leave her laying on the couch in the fetal position, eyes swollen shut from sobbing…Autism is a nightmare. Autism takes my child to a place beyond my reach. Autism can brighten my heart in ways I wouldn’t trade for anything in the world…and it can put out my flame.
In these moments, caught in a love-hate relationship with Autism, there’s a choice I have to make. I can choose to let this struggle swallow me up. Little by little, I can let the negatives shift my focus until I only see this battle as a burden. Or I can choose to face this pain, here in the dark, but not let it change what my heart knows to be true: The Giver of Light is here with me. He’s with her. He’s never left our side, even when we don’t have enough strength to keep the flame burning. If I choose to turn to Him, He’ll light the fire again.
So, for now, we’re not okay. My family, every one of us, is hurting. Each in our own way, we feel the pain that comes with an Autism diagnosis. I’m not going to pretend that this isn’t one of the hardest things we may ever go through as a family. I’m going grieve over all the painful things that I can’t control about our situation…and then I’m going to stop again. I’m going to make the choice to have faith in The One who created my daughter. The only One who CAN help her when she’s beyond my reach. Though I may feel overwhelmed by the dark times, I know that He is full of unfailing love for all who ask his aid. I know he hears my urgent cries, and I know that He will answer me. (Psalm 86:5-7) I will look for the blessings at the breakfast table and I will hold on to them, until my fire burns again.