As my daughter gets older and her her ability to adapt to the typical world improves feelings of guilt decreases. As the birth mother, I feel responsible for her premature birth and diagnoses. These thoughts often begins with, “If only I had….”. Fill in the blank with anything within my control. If only I had eaten better, rested more, or listened to my mother when she said I looked unhealthy. If only I had changed a dozen different choices related to pregnancy and prenatal care, perhaps her life would be easier.
I usually allow myself moments of self-pity, and move quickly to action. My go to place in moments of stress is the library and any resource I can find to support our daughter. In my most recent search, I stumbled across a book that shared the inner world of a girl with autism, as well as her mother’s narrative as an autism mother. This mom, is what I have heard referenced and what I have come to identify as an ‘autism mom’.
I use ‘mom’, but this is any parent/caregiver who relentlessly searches for treatment, services and activities related to autism to enrich their child’s life. The effort to find any opportunity to reach into our daughter’s inner world was sometimes heartbreaking. If there is an single challenge to parenting her, it’s been the struggle to connect with the person we know is inside. I believe that goal drives most parents to fight through a myriad of challenges to help their child(ren).
There is a generation of ‘autism mom’s ‘ and advocates I want to thank for fighting on behalf of their children, encouraging services, and ensuring new families had resources. Our daughter was diagnosed at two-and-a-half, an optimal time for interventions for children diagnosed with autism, including birth-to-three services. Speech, occupational therapy, and behavioral interventions that began prior to her diagnosis. There are support groups, walks, and sensory activites in a variety of communities across the state, and nationally. Autism is a nationally recognized epidemic and research continues across systems to address this for current and future generations.
I believe that core to this movement have been those autism mom’s and families, insisting there was something that could be done. So, I offer a note of gratitude for your relentless advocacy. I have learned to appreciate the subtleties of this diagnosis, and experienced unparalleled joy that my daughter emerges a little more each day.