We Are Not Failing Our Children; We Are Failing Ourselves

March 25, 2018

Everything seemed so hard in the early 2000s when our daughter was a toddler. She didn’t do many things her older brother did when he was her age. She didn’t like to be held, she didn’t speak or point, and she didn’t respond to her name. She didn’t have any separation anxiety. It was the opposite. She didn’t seem to care about me leaving her behind and showed no excitement when I returned home. We did physical therapy, occupational therapy, and speech therapy since the day she was born. I asked every provider I could, “Why doesn’t she speak?” “Why doesn’t she respond to her name?” “Why doesn’t she play with toys?” Their response was always the same, “it will come. It’s delayed because she was born a preemie and is visually impaired.” Finally, when she was 2 1/2, I asked, “Could she also have autism?” And they recommended that I have her checked. I often wondered why none of her therapists ever recommended it sooner. Still, I now realize that our society was also learning about autism, her missed milestones and behaviors were misunderstood and undiagnosed, most likely due to her being born at 25 weeks.

Getting her to eat was extremely challenging. I couldn’t understand why eating was so hard for her. Why did she refuse certain foods, especially fruit, and veggies, when she ate them as a baby? Why would she eat only chicken nuggets, pizza, or hotdogs with no bun? Why didn’t she ask for food? People said she would eat if she were hungry enough, but our daughter never requested, never went to the pantry or the refrigerator, and she cried on and off a lot, daily.

Sleeping was also challenging. I constantly wondered about our daughter not being tired after she had been up, on, and off all night and non-stop during the day. I was always trying to help her sleep. Why did she wake up so many times throughout the night? Why couldn’t she sleep? All the parenting expert friends and family told me to let her cry it out, and I always felt I was doing it wrong. They said I shouldn’t rock her, pick her up or sleep with her. My mom often inadvertently made me feel I was reinforcing poor sleep habits. I reached a point of exhaustion where I could no longer help her and just started ignoring her. I would close the door, making me feel like an even crappier mom, but I was beyond exhausted. Eventually, the ignoring worked.

When she was younger, I always tried hard to make things right and perfect. And I would hear that I was doing it wrong. I was either spoiling her or being too hard on her. For years, I was drowning in my mom’s guilt, and my family had no idea how much worse I felt with their unsolicited advice. I hung onto every word, internalized everything, and always felt inadequate as a mom. No one, including myself, understood the reasons behind her behaviors, I often felt judged, and I got tired of people not understanding our experience. I often felt resentful towards others for being able to go anywhere with their children freely. I functioned daily, but inside, I was dying. I felt like I was failing our daughter and my family, but the truth was, I was failing myself. I was allowing autism to change me and control my happiness. I let it change the landscape of the life I wanted with my family.

As my daughter developed, her behaviors worsened, and I felt I was failing. It wasn’t until 2010 that my outlook changed when she became aggressive and had meltdowns lasting four-plus hours. I had to dig and find a way to help her, and I will be forever grateful I found a behaviorist who helped me understand that I wasn’t failing as a mom and that I needed to let go of the mom’s guilt. I had to learn new strategies and let go of being consumed with autism, learn to live harmoniously with the diagnosis, and most importantly, find a healthier balance for my well-being.

I realized I needed to let go of the negative feelings about myself. I had to accept that parenting our daughter was more intense. I needed more patience and time. I needed to stop assuming her behavior, emotions, and needs would be fixed quickly. I accepted that she saw the world differently, with intense curiosity and more determination to fight the norm, and that her desires and individuality were quite different from what I saw in our son and that it was a reflection of her autism and not me. I knew  I had to embrace change. I had to let go of trying to make things right and perfect. I had to become vulnerable and accept that although I loved her with infinite love, it was also that love reinforcing so many things that were not going right for her and our family. If she was going to reach her potential, I had to change my approach, let go of the mom’s guilt, and learn a different way to parent her. I also had to let go of the harmful and toxic feelings I had been carrying around for years, fear, despair, resentment, and jealousy of those with easier lives.

I had to come to terms with the bitterness I held inside. I had to let go of what our life could have been like without autism. I had to get off pity party island if she would ever have a better chance at a happy and fulfilling life. I had to accept that I allowed myself to get lost in the diagnosis, which led to unnecessary stress-related illnesses and excessive weight gain. I had to learn how to love myself again and live with a healthier mind and body. When I went all in on changing how I dealt with the challenges by applying the behavior therapy strategies while focusing on myself,  my outlook changed, my stress level went down, and that change in me made all the difference in her. She blossomed and developed in ways I could have never imagined because I stopped being an “autism mom” and became just a mom. The mom, my daughter, and my family deserved and needed.