Because I didn’t know how to love, living with my autistic son was a nightmare.
Don't get me wrong; living with autism is always tough. The tantrums, rigidity, disconnection, and what I lovingly used to call my son's "Martian behavior" can traumatize the most Wonder Woman of the warrior-mom species. And I was definitely not warrior-mom material. No way.
So when my 5-year-old son, Ben, was diagnosed with autism, I fell apart. Depression, despondency, and fear overwhelmed me. Plus, I couldn’t let go of my vision of the child I thought I would have. I was not supposed to give birth to My Favorite Martian. Grieving that vision took me a long time.
So it wasn't just Ben's autism that made my life hard for me.
The day we received Ben's autism diagnosis, I thought my life had ended. But it is now clear to me, eight years later, that Ben’s diagnosis was actually a key that unlocked a sort of "Love Classroom," in which I ultimately learned the fundamentals of unconditional love, while in the embrace of someone who didn't seem, at the time, to love me back.
I loved Ben passionately. From the day he was born, I was a hard-core baby addict, a don't-mess-with-Baby-or-I-will-kill-you kind of mama. No one ever told me you actually, literally fall in love with your baby. But I did. I kind of lived for him. And Ben was very happy. He was smiling, busy, and active, living in his own perfect little world -- a world into which no one else was invited.
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The only person with whom Ben ever connected was his little sister, Alina. I saw him reaching out to her, and trying to engage with her. But not with me -- never with me.
Eventually, I discovered the connection between autism and food, detoxification, and other organic factors. Based on what I learned, I changed our lifestyle -- a lot. I also discovered a transformational social skills development program called The Son-Rise Program®. Through these interventions, Ben transformed from a typically autistic child into an interactive, self-aware, and connected young man. Today, in fact, Ben writes children's books -- about friendship!
But Ben wasn’t the only one who changed. As I mentioned, Ben's autism wasn’t my only problem. I was so stuck on the person I wanted my child to be that I almost missed who my child actually was. Yes, autistic behaviors are hard to deal with. Yes, for years he didn't look at me, hug me, acknowledge my presence, or seem to love me. He acted out and couldn't connect.
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But in response I judged him, and I judged myself for judging him. I thought if Ben couldn't be like other children, then he wasn’t going to be okay, and, moreover, that I was a failure -- as both a mother and as a human being. I was exhausted, not just from Ben's autism, but also from my own self-hate and negativity.
As we worked with Ben, however, I began to see him differently. I became able, somehow, to accept and love the child in front of me, rather than the vision of some child who was never going to be my kid.
At a certain point, I just decided: I'm not gonna wait to be in a relationship with my child. I’m not gonna wait until he’s "cured," or "good enough," or "normal enough." I’m not going to miss out on being in a relationship with my child, with who he is, right now.
Going through this process with Ben taught me to see the person in front of me, rather than some vision of who I think that person should be. I apply this principle to my daughter (now a tween), to my husband (who is endlessly husband-y and therefore the constant potential recipient of my judgment), and, with greatest difficulty, to myself. I feel this level of acceptance underlies actual love.
As a result of our journey with autism, I now consciously choose to experience, to love, and to accept the people in my life -- rather than wait in judgment for them to change into who I think they should be.
I'm not gonna wait.
I don't do this perfectly yet, at all. I probably never will. I still yell at my kids, still criticize and try to control my husband, and still put way too much pressure on myself to be perfect. But that's okay. I’m not gonna wait to love myself, either.
How about you?
Susan Levin, author, lecturer, health and parenting blogger, and Certified Nutrition Consultant, is also the mother of a child who recovered from autism through holistic interventions. Susan’s company, Unlock Your Child, offers online programs and one-on-one coaching for families around the world who are affected by autism. Susan's book, Unlocked: A Family Emerging from the Shadows of Autism (Skyhorse Press 2015), is available on Amazon and Audible, as well as at the finest bookstores. Susan lives in New York.
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