The diagnosis part 3

Ah the grieving process! Autism experts say that parents of children with ASD grieve for the child they had hoped to be raising. Prior to his diagnosis, I had always prided myself on letting my son's interests and personality develop organically. I didn't want to push him into being someone that he wasn't. I had assumed when I had my son that his development would be "typical". I remember praying during my pregnancy and his infancy, and saying often "God, I'm not asking him to be a genius, or the president or anything like that. I just want him to be happy, healthy, and safe." Despite my prayers, my child was now facing a disorder that could challenge all three of those wishes...and so I grieved.

There are five stages of grief, the first stage being Shock and Denial. I would say that this stage was pretty much my reaction to Mowgli's issues even before the diagnosis, not to mention the more intense feelings that I had after the psychologist said that he had autism. Although I had witnessed the signs, I had always insisted that his difficulties were limited to a speech and language issue. In fact, in the first few months, any time I had to tell someone that my son had autism, it stuck in my throat.

Alongside my denial was anger. Anger is the second stage of grief. I had plenty of that! I was angry at my son for not "snapping out of it". I was angry at the doctor who didn't identify autism sooner. I was angry at the school system for their difficulties in accommodating my special needs child. I was angry that no one seemed to notice that my little family was struggling with the chaos that occurs with ASD. I was angry at any person who had ever showed even the slightest hint of disapproval over my son's behavior. I felt like he was being singled out by the world - picked on unfairly. In fact, I felt picked on. But more importantly, I was angry at myself.

As the denial subsided, I held onto my anger, and the third stage emerged - Guilt. Why didn't acknowledge his delays sooner and get him early intervention? Did I do something during my pregnancy to cause this? It's in my genes. I wracked my brain for a cause, and always came to the conclusion that it was my fault. My little boy was going to struggle in life, and it was because of me. What was worse, I couldn't fix it. Fred and I had always achieved anything we put our minds to, and autism was something we just couldn't get a handle on. We needed other people to help us with our child, because we couldn't do it on our own. We felt defeated.

Then came the fourth stage - Depression. It was almost two months before I took the time to really cry over my son's diagnosis. I had made an appointment with my cardiologist because I was feeling an increase in "flutters", associated with a benign heart condition, a mitral valve prolapse. I had to undergo a series of tests, and then the doctor and I had a meeting to discuss the results. He said, "Well Amy, besides the MVP, I don't see anything else going on with your heart. Your blood pressure is excellent, your heart is very healthy", and then after a pause he asked, "Are you sleeping well?” Yes. “Has there been anything stressful going on?" I couldn't answer him, but just nodded my head in the affirmative. We stared at each other for a few seconds, then he said, "Is this stressful event temporary?" I shook my head "no", and my body slumped, large tears started falling into my lap. I tried to speak through my sobs and was finally able to choke out, "my...my son...has autism". He asked if he could refer me to a therapist, and I accepted.

The first therapist I saw was nice, but admitted to having no experience counseling parents of children with special needs. I finally found a qualified therapist through the psychologist who had diagnosed my son with ASD. After a battery of psychological tests, I was diagnosed with Major depressive disorder (fancy words for clinical depression) and panic disorder (aka really bad anxiety attacks). She recommended immediate treatment for the depression, and therapy to address my anxiety and grief. I followed her treatment plan, and began to feel the darkness lift. I was finally able to help my family, because the overwhelming anger, guilt, loneliness, and hopelessness were dissolving. When I was able to think clearly, I began to experience the fifth stage of grief - Acceptance.

So here we are one year and eight months post-ASD diagnosis. Some days I still feel the anger, guilt, and sadness. The grieving process is definitely not linear. Most days though, I wake up feeling grateful, hopeful, and inspired. When I gave birth to my son, I immediately declared that he was my "soul mate". I still believe that. To be someone's soul mate is to feel what the other is feeling. I feel his struggles, his frustration, but I also feel something else, something deeper. He knows he has something to contribute to this world. His confidence is awesome. His curiosity and playfulness are infectious. He has the ability to make almost anyone fall in love with him. His hugs are legendary. My son has autism, but autism doesn't have him.

And so begins the story of The Adventures of Mowgli in Utica.