April 2nd is World Autism Awareness Day. Individuals with autism are speaking at events around the world to acknowledge those on the autism spectrum. I chose to stay home on this particular day, to celebrate the one person who had the most significant impact on my life. My mom. She dedicated her life to raising and caring for me. She gave up everything that other moms got to do, to instead nurture her “unusual” daughter who was so different than other kids. She was my source of peace, comfort, and security. Without her care, nurturing, guidance and wisdom, I would never have reached the point I’m at today.
I speak around the country at autism events. My favorite part of it is getting to talk to parents after my presentation. They begin by telling me I’m their vision of hope and inspiration for their child who’s also on the autism spectrum. Then they tell me about that child, who may be a young kid or an adult. They tell me personal things about their lives. They share their struggles. But most of all, they are showing me their compelling love for that child. I can see it in their eyes. I know how bad they want their child to have a happy, productive life. I see the worry they have, for when they are no longer here to care for and watch over that child. Many of them start talking about that, as tears begin rolling down their cheeks. My eyes start to well up, and I join them. I get extremely emotional to meet these heroes. To me, yes, these parents of children on the autism spectrum are my heroes. They go above and extremely far beyond what other parents do. They don’t get any recognition, they are exhausted and often pushed to wits end yet they keep forging ahead and get up the next day to start all over again.
Having a child with autism takes the parents on a rollercoaster ride of emotions, from the lowest of lows to the highest of highs and everything in between. They all become advocates for their child, out on the front lines of healthcare, the education system, insurance companies, therapy, the public, neighbors, family members. There’s the daily struggles with the child, the meltdowns, clothing, food, trying to figure out what the child needs, wants, or is feeling. This is all compounded when the child is non-verbal. The rest of the world simply has no concept of what life is like for these families, either the individual with autism or their parents.
Always wanting to do what’s best for the child, these parents sacrifice their own happiness to do what the child needs. Even simple things like going out to a restaurant. Fearing the child will have a meltdown, they either don’t go out or try going at times when the restaurant isn’t busy. I have a friend with a boy with autism who loves to swim. Several times each day she drives him to the pool and sits there while he swims, smiles as she watches him high-five the ‘regulars’ there, then goes back home until it’s time to go again. Every day. Another friend with an almost three year old daughter, spends her days going to two different therapy sessions each day, one in the morning and one in the afternoon. Then everything else piled on top of that. The list goes on. Their life totally revolves around that child.
Each day is another step towards improving their child’s life. No matter how tiny, they continue on their journey. It wasn’t until I discovered I’m on the autism spectrum at age 50 did I realize just how much my mom gave up raising me. Yes, I was her life. We were together until I was 53 when she left this earth. I took care of her (and my dad) at home until her final breath. Even on her last day she was giving me advice of how to cope with her death. She made me promise to continue my journey as an autism activist to help others around the globe. I continue to keep that promise I made that day, constantly striving to help others on the autism spectrum, and also the parents who are the true heroes of World Autism Awareness Day.