On the autism roller coaster, I’ve hit a deep low. Last night Bruno and I had a painful talk about the reality of our situation. The reality of what, exactly, we are living with. And what we are living without. It was heartwrenching. So painful that at moments I wanted to scream for him to stop talking, that I couldn’t bare to hear any more about our lives. I couldn’t take one more second of staring at the harsh landscape of our family.
The fireman is a very trying little boy. Over the past few months he’s slipped into this alternate universe where he talks without regard for those around him. It came on slowly so we didn’t realize the path that we were on until we hit a cul-de-sac and he blocked our escape route out. He peppers us with questions, with repetetive statements. He has no regard what-so-ever for those around him. He speaks when the whim hits him and demands that all around him must stop what they are doing and focus soley on him. It is maddening. There is no way to intervene. We are steamrolled and nothing prevents him from forcing over us with his words.
I’ve tried patience. When patience ran out, I’ve tried walking away. And other times, well other times, I’ve yelled.
On Saturday, we were driving to the store and I was talking and the fireman was insisting on speaking and I screamed at the top of my lungs, “Stop! Stop! Stop!” Everyone was quiet until the fireman finally said, “I’m mad because one of you yelled but I don’t know who.” We were so stunned that he didn’t know who yelled that we didn’t know what to do. Calmly, I asked him if he knew that it was me and he said no. Then he went right back into his verbal marathon. As if nothing had happened. I hated myself for yelling, knowing that he couldn’t help it. I had yelled at my baby for something that he is unable to control. But I felt completely out of control. And I couldn’t take it anymore.
I can’t take it anymore.
Last night, after Bruno and I finally stopped talking, we went into the fireman’s bedroom for his regular midnight kiss. It is our favorite time with him, sadly, because he is asleep and sweet. And not talking at us or angry with us. He’s just our wonderful, wonderful baby.
When I leaned over to stroke his forehead, I began to cry. Tears slid down my face as I thought of this poor innocent child, who never once asked for any of this. Yet here we are, a family broken because autism is ripping us apart. And we are angry about it. And we like our child more when he is sleeping than when he is awake. The realization that so much anger and frustration comes from us and is surrounding our little guy broke my heart into a million pieces, and the tears that started off as a trickle began pouring like a summer rain storm- hot, volatile, explosive energy. I tried desperately to silence my crying so that I wouldn’t wake the fireman. As if he needed yet one more thing to make his life any worse- a crying mother hanging over him in his sleep. Bruno quietly took my arm and led me to bed. A place where I can cry without disturbing our baby.
When I awoke this morning, it was with heavy eyelids and I walked through the day focusing on keeping the tears in. Someone asked me how my weekend was and a tear sprang out before I could stop it. ”Not great,” I said. But nothing more. How do you even begin to explain? And why would you? When people ask how your weekend was, they really only want the highlights. Not the lowlights.
Today is World Autism Awareness Day. I would give anything to be a little less aware.