BRAVE Speech & Language Services
Andra
Andra
Parent of an Autistic Adult
Redefining Happiness: A Mother’s Journey Through Uncertainty, Autism, and Unconditional Love.
—A BRAVE Parent Reflection
My name is Andra… I remember that the first deep and conscious thought I had about my journey with my son, who is on the Autism spectrum, was that having Adrian redefined what happiness is to me.
Most people start their adult life with a somewhat idyllic image: once we’ll be on our own two feet, we’ll find our significant other, have children, they’ll be good kids, go to college, marry, grandkids, etc. And this happy-life template also included the fact that any deviations from it would be a misfortune.
Well, Adrian widened the view and understanding for me about life, relationships, human behavior, human understanding, and ultimately happiness. Having Adrian in our life led me slowly to the conclusion of how limited my vision was before him and forced me to redefine what happiness is for me today.
Adrian was diagnosed when he was 3 years old, but by that time he already went through a lot. He had a very difficult start in life. He was born prematurely with a rare genetic condition -a form of congenital anemia. We almost lost him before he was even born. Luckly, he dodged that bullet. Soon after birth Adrian, went into remission with his Anemia.
Adrian’s early development was difficult, but he had a stubborn will to live. He defied many, many odds. So, hearing the ASD diagnosis was not the worst thing we’d experienced by then.
However, the journey was tough. Beside the unknown medical future, one of the most difficult things I struggled with was the emotional overwhelm I felt during the first years of his life: the unknown of how my son’s life will look, the inability to predict his future. There was too much chaos for me to forecast anything positive. That was ultimately the scary part. That also translated into feeling alone, like no one had my back.
Adrian was full of contradictions. He was a kid who found speaking as alien as a snowflake in a desert. Yet when it came to solving the problem of how to communicate his thoughts without words, he amazed us constantly. He would try to speak but when words failed him, he would scream at the top of his lungs with tears in his eyes, look straight into our eyes, clench his fists, and “tell” us that we don’t understand him. We learned to read all these non-verbal behaviours as communication.
Another contradiction was that Adrian adored little children but did not readily share with them. Adrian had a genuine love for babies when he was little. He would stop every stroller in his path to try and connect with the babies. I saw empathy in his eyes early on. Yet, he also found it difficult to share his toys. He did not like other children touching his things and would react in anger when they did by hitting, biting, throwing, screaming. The uncertainty of how long these various behaviours would last, and wondering if they will be there forever, kept me awake at night.
I needed to know he will be ok. However, the answer didn’t come right away. It was time, and the help of many professionals, which helped us to slowly see who Adrian truly was. Therapy helped us understand our Adrian; how he communicated, how he thought, how he related to us. It was like peeling off an onion’s layers.
I think he was around 9 or 10 years old when I knew he was going to be ok. By then he had a lot of therapy. Those intense therapy years, between 5 and 10 years of age, produced the most transformation for him.
Reflecting on our journey, much later on, I understood that no transformation was possible without experiencing pain, fear, uncertainty, temporary defeats, and failures. Without all of these, I wouldn’t have known what works for my son and our family. And this is exactly why, despite similarities, our journeys are unique.
So, my advice to any new parents who find themselves at the stage I was years ago is to trust themselves, and to understand that they are ultimately in charge of how the road ahead of them will look.
The confidence we gain as caregivers for children with special needs comes from trying various things enough times, allowing us to separate what works from what doesn’t work for our children.
Nobody is born ready to face such challenges, especially when your happiness template was as reductionist as mine was when I started my family. It is a process. We all start inexperienced, riddled with insecurities and the unknown, but slowly we end up experts-not only in our children’s life, but also experts in ourselves.
I often say, with pride and gratitude, that my children are my best teachers in life. People often say, “It’s not the kids’ job to teach their parents who they are.” Parents are supposed to figure out who they are on their own. But if I know who I am today it’s because my children showed me.
Adrian is now a beautiful 19 yr-old young man who is embarking on a second journey -that of an adult. It is not a breeze to navigate the system supporting Adults on the spectrum either, but I am so grateful we have one to rely on. So many kids around the world do not have this privilege.
As a parent, my ultimate goal with both my sons is to simply guide them to be who they truly are.
Being included in Narmilee’s amazing efforts of creating a BRAVE community of parents and kids is more than an honor.