Reconciling Your Dream with the Diagnosis. When Autism becomes your Prison. Finding the way Out.

My son had to die for me to let him live. Not my literal son, thank God! But, the son I had created in my head. This little boy was alive and well in my daily thoughts. He was the boy born in my world the moment I found out I was pregnant. The moment I held him in my arms, more of his life grew in my mind. The first day of school, all the joyous milestones. The conversations I’d have with him. Play dates. The joy my husband and I would share around a dinner table watching our kids develop and grow in relationship. The friends my son would make. The sports he’d play. His wedding and kids one day. Yes, my mind went that far. Whether or not that is healthy is irrelevant, because it was too late. My mind had already created this child. Thus began the juxtaposition, the cruel division in my head that began to hold me and my son captive. I had a new primary purpose in life. Trying to get him to be the boy in my head. Now this looks, objectively, perhaps nonsensical. But to me it was my reality, my cage keeping me on the other side of a wall blocking me from a fruitful life, social or otherwise. It began a self destructive prophecy of tearing apart the family I dreamed of having.  A torment that ate away at me every single day and night, until alas I reached the end of my rope. Full blown depression.

 

Instead of smiles throughout my experiences with my children, it became tears, physical battles due to sensory needs and refusals to do things like change his clothes or diaper or get into or out of the car, or walk into school. The impossibility of peacefully getting through a grocery shopping trip without him furiously yelling, fiercely indicating, “go that way!” The hands knocking things off aisle shelves and grabbing things to collect in the cart because of a particular color or number or letter that he demanded to have. The embarrassment. The loneliness. The hatred for my situation, and for admittedly who my son really was. Why couldn’t he be the son in my head? When was the therapy going to turn him into that?

 

And at the bottom of the barrel, there I found myself with a choice. Continue chasing answers, therapies, drugs, natural remedies, other special needs mom’s ideas, or accept what was happening and what my life was going to be.  What was wrong with who he really was? Could I ever really love him if he wasn’t the boy in my head? All around, mothers, friends, all with “normal children” never having to wonder the things that I wonder, never having to work as hard to help their child speak or handle changes. The isolation of nobody understanding what I was going through began to make me bitter, and jealous if I’m honest. Why was everyone else’s life so much easier? All the while, my son being run around town to every therapy I could find. But what was this doing to him? Helping him? Helping me? Was it worth it? The sacrifice of all our time and energy? What was I really hoping to achieve?

 

And there, at the very rock bottom of ugly, began the next phase of grief. Acceptance. And so I say again, the boy in my head had to die, for me to let my son live. At least to let him live a life where his mother was truly present and happy to love him just the way he is, and not because I was going to be able to change him into the boy I pictured he’d be.

 

As I sit here today, I still struggle. But, I can tell you there is freedom, relief, and joy that come from accepting that even if my boy never changes, if he never becomes whatever “normal” means, I will love him still. Just the way he is. And, what I’ve learned about healing: It is a work in progress.  Grieving the “healthy child” you expected to have, when you actually have one with a life changing diagnosis, is foreign territory for me.  I will learn as I go. I have to forgive myself often, but I must not stop growing.  I’m not yet near the finish line.  But now I have entered the marathon alongside my son, and together, we will seek the unexpected beauties of it along the way.