For many years, I lived with hidden pain and a lot of fake smiles. I felt alone, isolated, and clueless about how to help my child. My son was 'different,' I knew, and eventually we had labels that helped me understand but did nothing to allay my worries about the future or help me to cope with the stress our family was feeling.
I threw myself into learning all about Asperger's Syndrome and how it fit under the Autism Spectrum Disorders (ASD) umbrella. I took him to his appointments with occupational therapists, speech therapists, behavioral therapists, developmental-behavioral pediatricians, psychiatrists, psychologists, social skills groups, chiropractors, holistic practitioners, and anyone else I thought could help him reach his full potential and be comfortable with himself.
What I didn't do, in those early years, was figure out how to support myself. I was very busy working, taking care of a home, being a wife and a mom, and trying to encourage and educate everyone around us who did or didn't understand or respect the choices my husband and I were making to help our child. Stress built up and I was, at times, a very overwhelmed and ineffective mom.
It took time to realize that the weight of the constant anxiety, frustration, and hypervigilance was taking a huge toll on me. I didn't recognize that the stress was breaking me down, both mentally and physically. While I never had a significant breaking point, several factors eventually forced me to face the fact that I was drowning.
I began to seek support from an online support site. I found new doctors and professionals through this support site. We were living in a new place, thousands of miles from the place we'd called home for years. At the time, it felt even more overwhelming to start all over again, yet I eventually realized how fortunate we had been to move to a place that had so many resources in the community. I met my eventual employers and friends, who had a son very much like mine, through the site. I didn't feel alone anymore.
My son began attending a new social skills group, and I became close to one parent whose child was in the group with my son. She and I quickly bonded. I met two more wonderful friends, also with sons like mine, through our taekwondo school. We initially found common bonds in our children and in our similar views on raising amazing children on the autism spectrum. There are days when these women are my lifeline. Aside from my husband, they are the ones who most truly understand our short-term struggles and our long-term concerns.
I became involved with other families through my role as a group facilitator for young adults with Asperger's and through another social club for tweens and teens on the autism spectrum. I found another parent support group recently that fills my need and desire to explore the positive side of parenting children on the autism spectrum while also allowing me to vent when I am frustrated with the new experience of having a teenage son with Asperger's. I still feel stress and worry. We deal with two steps forward, one step backward, all the time. But I am far from alone, far from isolated. I have an amazing village of people who help me thrive, even when I am feeling overwhelmed.
For any parent who is living with ASD in their family, I encourage you to reach out to your child's school, therapists, and doctors. Seek online and local autism community resources and look for social opportunities to interact with other families who empathize with your struggles and celebrate your milestones... there are not a lot of people who can truly appreciate the AMAZING pride you feel when your daughter will wear a shirt that has long sleeves or when your son finally swallows mashed potatoes and doesn't vomit. Parenting a child with ASD can be challenging and stressful, but it does not need to be isolating.