When our daughter was younger, everything seemed so hard. She didn’t do a lot of 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 just 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’s visually impaired.” Finally, when she was 2 1/2 years old, 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, but I now realize that our society was also learning about autism and so many behaviors were misunderstood and mislabeled.
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 was hungry enough, but she never asked, she never went to the pantry or the refrigerator, she cried on and off a lot, daily.
Sleeping was also challenging. Why wasn’t she tired? After all 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 at times that I was reinforcing the poor sleep habits. I reached a point of exhaustion that I could no longer help her, and just started ignoring her. I would close the door and it made me feel like an even crappier mom, but I was beyond exhausted. Eventually, the ignoring worked.
When she was younger, I was always trying so 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 felt misunderstood, mislabeled and mistreated, even by my own mother and close relatives, not because they meant to make me feel bad, but because I was drowning in mom guilt and they had no idea how much worse their words made me feel. I hung onto every word, I 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, and often found myself feeling resentful towards others for being able to freely go anywhere with their children. 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 to control my happiness. I was allowing it to change the landscape of the life I not only wanted but deserved to have even with autism.
That outlook had to change. As her behaviors worsened, I had to dig and understand that I wasn’t failing as a mom. I didn’t create autism, I was raising her on developmental timelines and comparing her to her brother’s typical developmental milestones. I didn’t have an autism manual. I had to come to terms with a lot of things I was feeling. I did nothing wrong to deserve this life. I didn’t cause this, and I allowed it to change me. I wasn’t failing our daughter, I was failing myself. I had an instructional manual for a typical child and no instructions for outside the box. My daughter was NOT fundamentally different from other children, I became different because of a diagnosis. I realized that I needed to parent her with the right instructional manual and let go of cynicism and negative feelings I felt about myself. I had to accept that parenting our daughter was more intense. I needed more patience and time. I accepted that her behavior, emotions and needs were more going to be more intense. I accepted that she would have strange and intense curiosity, stronger determination to fight the norm, and that her desires and individuality was quite different from what I saw in our son, and that it was a reflection of her and not me. As a mom, I knew I had to find the right fuel, the right environment and the right supports, but it had to go beyond just finding them. I had to embrace changing my ways, and I had to let go of trying to make things right. I had to become vulnerable and accept that although I was loving her with infinite love, it was also that love which was 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 face what I had been holding onto for years, the mom guilt, resentment, jealousy and envy.
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 the pity party ship if she was ever going to have a better chance at a happy and fulfilling life. I had to accept that I hated so much of what my life had become, and I had to learn how to love myself again. It’s when I learned to love myself that my world changed, and that change in me, made all the difference in her and I stopped being an “autism mom” and became the mom my daughter deserved.