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The guilt of pre-diagnosis

I was at a conference this weekend for the online March of Dimes community of which I’m a part (more on that later). Although the conference centers around parents of premature babies, those who have lost babies, and those of children with birth defects, many of us have kids with sensory issues and/or who are autistic. Two different speakers talked of what life was like, pre-diagnosis. It got to me, because I carry so much guilt over how I parented my Little Man pre-diagnosis. As often happens during this weekend conference, tears just rolled down my face. I understood so completely the words of each speaker, the heartache, the pain.

For us, the road to diagnosis didn’t seem so clear. He never regressed. He was still verbal. I logically tell myself there wasn’t really a solid way for us to know what was going on until his peers ripped past him in emotional and social development. In our eyes, he was just a stubborn, challenging child. Looking back, some of the signs were there….the vocabulary we were amazed by, the building need for structure, the inflexibility, the tics, the resistance to transition.  By kindergarten, he refused to participate in some activities outright, particularly if music was involved. His teacher knew him well, and worked with him. In first grade, again with an amazing teacher, he learned to remove himself and literally move his desk away from everyone when he was getting overwhelmed. I knew in my heart something was wrong. I was in denial. When I found myself spending an entire summer micro-managing every minute of his day, ending most days with both of us in tears, I knew something had to give. We instituted “Little Man Bootcamp”, thinking if we were just better parents, if we were more disciplined in our disciplining, more controlling of him, he would pull it together. I remember one day getting in his face and yelling, “What is wrong with you???!!” I was so frustrated. In my mind, I thought he was choosing to be a pint-sized jerk. Looking back at that day makes me cry.

He wasn’t choosing to be bad. He wasn’t intentionally making our lives hell. His throwing of things, banging his head on the walls or sofa, stomping on the floor of his upstairs room….he was trying to tell us something. He needed help. Instead of getting it for him, we made his life more difficult.

When my sister, who works with different-needed kids, suggested I have him evaluated for a spectrum disorder, I became indignant. How dare she say that about my son? How could she even suggest it? I immediately called my best friend, whose daughter happens to have a spectrum disorder, to vent and complain about my sister’s comment. Thank God my friend had the courage to give me a come-to-Jesus moment. I called the pediatrician the next day and started the process. Within two months, Little Man had all those letters attached to his name. I cried……I cried because the label hurt at first. I knew it would be such a hard road, one that has no end. But I sighed in relief as well. We now had help for our son. We had the “why” for all his challenging and difficult behavior, and it wasn’t simply his choice to be that way.

I still feel guilty thinking back on pre-diagnosis days. How many tears, how many days of frustration and even anger could we have avoided, if we had just opened our eyes? How many damaging words would have never been said? His little face would stare back at me, wondering why I was blaming him for being a pain. Those memories hurt so much. The thought of the days I wanted nothing more than to run away, when I asked myself why we had had a third child can push me to a very dark place. Now that we know, that we understand it wasn’t him, it wasn’t his fault, we can accept, and we can focus.  We can help. He no longer has a need to look at me wondering why I just couldn’t understand what he was trying to tell me.

One thought on “The guilt of pre-diagnosis

  1. I love you. You’re an amazing Momma to your Little Man (to all your loves). You do the best you can, He feels that love, even on those days when things don’t go the way we’d like them too. I’ve lots my wits with Rach plenty.. and I feel that same guilt you describe. I get it. Forgive yourself. You’re human. ((

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