“Courage is about learning how to function despite the fear, to put aside your instincts to run or give in completely to the anger born from fear. Courage is about using your brain and your heart when every cell of your body is screaming at you to fight or flee – and then following through on what you believe is the right thing to do.”
Jim Butcher. Ghost Story: A Novel of the Dresden Files. USA: Penguin Group, 2011
In Jim Butcher’s book, Harry Dresden is a wizard’s ghost who’s about to wade into battle against an army of ghouls who can rip him to shreds. Not only are they eager to tear apart the remnants of his soul, they’re lining up to eat the pieces, so yeah, he’s got good reason to be afraid. But Harry jumps into the sea of claws and fangs anyway in order to save the people he loves.
As the parent of a child with high functioning autism, I can relate to that.
Not literally, of course. Fortunately in my day-to-day life I’ve never bumped into a malevolent soul-sucking member of the undead, much less a horde. What I mean is that as the parent of a special needs child there have been times I had to reach deep inside myself to find the courage to overcome my fear and anger so I could do what I needed to do to help my child.
For instance, when my son was in third grade his anxiety reached an all-time high. Several times a day he’d have screaming fits that lasted an hour or more. I was getting phone calls and having impromptu conferences with his teacher almost daily, plus having to deal with his emotional rollercoaster at home. It went on for eight months. I got to where I didn’t want to answer the phone for fear it was the school calling to tell me what havoc my son had caused that day. I didn’t want to be the one to pick him up after school because I didn’t want to face the teacher’s status report. I also didn’t want to take him back the next day with a smile on my face and a new plan in my pocket so we could try it all over again.
What I wanted to do was rip my phone out of the wall. I wanted to move to someplace where autism hadn’t been invented so my son wouldn’t have to live with the anxiety and rage that tormented him. I wanted to go to the empty school on a weekend and see what damage a flame-thrower could really do. I wanted to scream at my husband, my son’s teachers and his doctors that they weren’t doing enough and that their ineptitude was hurting my baby.
I was scared. Every day I was afraid of what my child would have to suffer, then and in the future. I worried he’d grow to be a 6’3” adult who went on screaming rampages until his actions caused society to lock him away. I was afraid that eventually he’d hurt someone – another child, an adult or himself. I was terrified.
Maybe it would have been a little easier on me if the teacher had been a slobbering ghoul intent on the destruction of my sweet boy. It would have given me a target – an evil I could fight and overcome, a problem I could solve and be done with. But she wasn’t. She was a wonderful woman who was doing everything in her power to help him. She’d optimized her classroom, teaching methods and routine to make my son’s life easier. An aide was there to help him through his hard times. Homework and class work were modified based on his day-by-day abilities. His teacher and the rest of the school staff were doing all they could to help him, as were my husband and our doctors. The difficulties in his life were not inflicted on him by a monster I could kill. They were ongoing and nebulous and nothing I was doing seemed to have any impact.
As I said, I was terrified.
My son was being held hostage and there was nothing I could do. But I knew that if I did nothing I was abandoning him to a lifetime of fear, anger and eventual confinement. I didn’t know what to do to help him, but I knew I had to keep doing everything I could in order to find an answer.
That meant I had to have the courage to face his difficulties and meet them head on. If I wanted to solve this problem I was going to have to take a very realistic, very detailed look at all the bad stuff that was happening. I couldn’t gloss over behaviors because I didn’t like what I saw. I couldn’t blame someone else for his actions or hope that it would all just go away. Denial wasn’t going to help my boy.
It meant I had to answer the phone each time it rang and meet with the teacher every day after school; I had to get specifics on my son’s behavior. What was he doing before he threw the pencil box? Was the other student hurt, upset or scared? Is my boy likely to throw the pencil box again tomorrow? As much as I wanted to hide my head in the sand and pretend my son’s behaviors weren’t all that bad, I couldn’t. If I wanted to help him, I had to be willing to examine every detail of his difficulties so I could search for clues to a solution.
I also had to adjust my son’s medication. That meant talking to several different doctors and learning more about psychotropic drugs and their side effects than any parent should have to. How likely is weight loss with this drug? Liver damage? Suicide? I had to make the decision – is the risk of possible side effects worse than what he’s suffering now? And when that drug didn’t work I had to make the decisions for the next one, and the next one, and the one after that, each time gambling with my son’s health in an effort to help him.
Helping my son overcome his anxieties took every scrap of courage I possessed and more. I had to look honestly at his difficulties even though they scared the heck out of me. I had to find ways to deal with my anger other than pouring it out on people who were only trying to help us. I had to make decisions I didn’t want to make. And each day I had to get out of bed, put a smile on my face and assure everyone that we’d find an answer, if not today then tomorrow.
It wasn’t easy, but we made it. After eight months of behavior therapy, medication changes and countless teacher conferences, we found a way for my son calm himself enough to function and be happy again. It was eight months of hell, but we survived. I relaxed back into the life we’d had before it all started – baseball, pizza and homework – grateful that we’d gotten our peaceful home back again, and carefully ignoring the small voice in my head that said we could lose it all again in a heartbeat.
The point to my story is not that I’m Superwoman and I rocked that challenge; far from it. My point is that life with a special needs child comes with times when it takes every ounce of courage we have just to make it through today and tomorrow. But you knew that already, right? Because if you’re reading this, you’ve been there. You’ve lived through those times when you lay in bed at night, looking up toward the heavens, wondering how you and your family were going to make it through this. You’ve stayed in there, day after day, fighting the good fight. Or maybe you’re still in the middle of your battle, giving everything you’ve got to help your child. Hang in there. Your actions are helping, even if it doesn’t seem like it today.
Courage. That’s what I’m celebrating today. Your courage. The courage of all the parents who face their child’s challenges head on, even when they’re afraid or angry or tired, even when they don’t want to. For all the times you’ve plastered on a smile, stayed calm, resisted the urge to fire bomb a building and instead took donuts to a meeting to thank everyone for trying to help your child. Our life isn’t always easy, but you guys are doing it.
P.S. If you’re into reading science fiction/fantasy and haven’t checked out Jim Butcher’s Dresden Files series – do. That guy can throw down some serious ink.