I never want Owen to feel that his autism is something that needs to be hidden. I wasted a lot of time and energy trying to fix him or disguise his disability because of my inability to accept his diagnosis. Acceptance helped me let go of my expectations of what our life should be and embrace what are lives are really like today.
It’s hard to explain the roller coaster of emotions that followed Owen’s autism diagnosis. I read that it’s quite common for parents to go through a grieving process after receiving the news. I thought, if it did happen to me, it would be in a somewhat linear fashion. One day I’d be in denial then the next week I’d get angry. I’d try bargaining my way out of things for awhile before falling into a nice, deep, depression for a couple of weeks. Then one morning I’d wake up full of acceptance and at peace with this new way of life.
It was nothing like that. I was depressed one day and angry the next. I felt calm and accepting of the situation only to wake up the next day and be angry all over again. Just like in life, the gamut of emotions following Owen’s autism diagnosis was messy and unpredictable. On the bright side, the extreme highs and lows lessened over time and the calm moments lasted longer as acceptance began to overtake my fears.
I never thought that something as difficult as an autism diagnoses would bring us closer as a family; making our lives more meaningful. But it has. I can’t say that I’m grateful autism has entered our lives because of the challenges that it presents for my son on a daily basis. I can say that it has changed the very core of who I am as a person, a mother and a wife and I wouldn’t want to change things now even if I could. It took a long time to get here and I am grateful for every single moment.
On our drive home from the doctor’s office the day Owen was diagnosed my husband kept telling me, “This doesn’t change anything.” But it did. It changed everything. I looked at Owen differently after his diagnosis. When we would go out in public I would watch him and wonder if everyone could see “it.” The autism. I wondered if it was apparent to everyone else but to me. I thought he was perfect, smart, funny, and handsome until a doctor told me that he was different. Owen’s therapists would use terms and phrases like, “on the spectrum, high and low functioning, classic autism, Asperger’s, special needs, disability” and my mind would spin. It felt surreal, I wanted to turn back the clocks and make it not so. I didn’t want to be a mother of a child with special needs. I didn’t have a choice.
While running errands with Owen, I ran into a friend of mine with her children. I immediately tensed up and felt self-conscious. Her children, curious, looked at me and said hello shyly. Owen ran in circles around us making erratic, loud noises. I tried to get his attention, urge him to say hello or to acknowledge their presence but he just continued running in circles. I grabbed him and tried to force him to say hello and that’s when he dropped to the ground and threw a tantrum of epic, humiliating proportions. I felt embarrassed and then ashamed for feeling that way. I made a few awkward excuses for his behavior. Then carrying a thrashing, screaming toddler in my arms, I tried unsuccessfully, to disappear. This type of scenario happened so many times that I eventually stopped going to the store or most public places with him. His behavior was so erratic and volatile that I was afraid to take him out in public.
I know now that his erratic behavior was due to an over stimulated central nervous system, as well as his uncanny ability to pick up on my emotions, which were full of anxiety and fear. My two year old child was struggling. He needed me but I was so consumed with what people thought of me that I was incapable of being there for him like he needed me to be. I no longer feel guilty about that realization because I was learning and growing too. I’m human and a very pride filled one at that. I had put Owen on a pedestal, proudly presenting the image of the child I wanted him to be. When he wasn’t able to meet my expectations, I spun my wheels trying to make him fit into a mold that wasn’t made for him, causing discomfort and heartache for everyone involved.
Following his diagnosis, I would scrutinize every silly, awkward, quirky thing that he did. I’d wonder if it was typical behavior or autism. Rather than enjoying my funny, smart and silly little boy I was wondering what therapies or strategies needed to be implemented to correct the behaviors. I don’t regret getting him diagnosed so young. The diagnosis opened many doors for us to seek therapy and assistance that have helped Owen tremendously. However, I hate the fact that the word autism held so much power over me for so long. Fortunately, over time, my insecurities lessened.
What I’ve learned on this journey so far is that Owen didn’t change. My perspective did. My feelings of embarrassment and insecurities over his behaviors was not about Owen. They were about me. I was embarrassed that I didn’t see the red flags and dismissed anyone who tried to suggest that there might be a problem. I felt ashamed for bragging so openly on Facebook about my perfect marriage and our perfect child. I thought we were invincible and I was wrong.
I had to swallow my pride and deflate my ego time and time again. I had to ask for help and accept it from others. We signed up for our state’s medical assistance in order to pay for Owen’s therapies. I had to tell the therapists, strangers to me at that time, that I was afraid of my two year old son. That I didn’t know how to handle his meltdowns. Nothing I did was working. Harder still, was taking their suggestions and allowing them to critique my parenting. Such a humbling experience. I felt inadequate, powerless, and stuck. I wanted out but couldn’t leave. I had to face the realities of my new life and it was anything but perfect.
Through the grieving process, our successes and failures as a family, and Owen’s struggles, I’ve realized that we aren’t unique. There is no shame in autism. I never want Owen to feel that autism is something that needs to be hidden. I wasted so much time and energy trying to fix him or disguise his disability all because of my inability to accept his diagnosis. Ironically, it wasn’t until I truly accepted his autism that so many of his behaviors and the obstacles that were standing in our way disappeared. Acceptance has helped me let go of my expectations of what our life should be and embrace what our lives are really like today. Because of acceptance, I am able to be present in my family’s lives and celebrate life’s beautiful moments.
Almost three years after his diagnosis, I’ve lived through the grieving process and have accepted my son for who he is. I’ve begun seeing Owen more and autism less. I no longer wish that I could take back his autism diagnosis. We’ve come too far and grown too much, individually and as a family, to want to change things. I feel blessed for the family I have. I rarely scrutinize the things he does or says wondering if it’s typical or not anymore.
He’s Owen and he’s absolutely perfect just the way he is.