Being in a Foreign Land of Autism
I am known for being directionally challenged. I have gotten lost in stores, walking, and driving to any destination. Life before GPS and cell phones typically meant that I had to write down detailed directions if I was going to find my way to a new place.
I also had to rely on other people on my journey when I became lost. I would pull into a gas station and vulnerably ask for help. I would trust the person who I asked for directions when I was lost because I had no other choice. If I couldn’t find my way, it meant that I needed someone else's knowledge that they acquired from their experience living in that area.
When my son was diagnosed with autism in 1996, I became lost in an instant. Being Joseph’s mom was familiar one day and the next I was dropped off in a foreign land with no cell phone, GPS, or road map. I had no idea how to find my way to help my son. Fear and panic overwhelmed me. I knew I was lost, but I had no idea who to ask for help. Nothing felt safe to me. I had a choice to make. Do I begin to ask strangers for help, or do I attempt to find my way on my own?
If only this decision was just about choosing whether to go left or right. The foreign land I was in also had a different language. I didn’t know how to read the street names or speak the language, so how could I get directions? I began each day trying to learn as much as I could while caring for my son, and living with a broken heart. Each day felt like a marathon that I had not trained for and my mind, body, and spirit knew it.
Each day brought a new lesson in my new foreign land called autism. Some of my lessons were trial and error and some were hard life lessons as I searched for answers.
Each day I also carried my grief and pain with me. I had no idea of how to sort and manage how deeply I was hurting. I noticed that most of the people I met along my new journey were kind, but they couldn’t relate to me. They did not speak my language. There was a huge gap in our communication. I just kept wandering the streets of autism.
What I realized was that I was going to keep learning a little more each day about my new land. Most days I was taking a small step forward and learning a bit more, but then out of nowhere I would step in a big pile of quicksand. The majority of my days were spent with a knot in my stomach. My stress was constant. My pain was constant.
As I became a full-time resident in the land of autism and began to feel more at home, the pain became a bit lighter. It was never completely gone because with each win there was another new area I had to learn about my new home. I was not prepared, so I would go back to searching and eventually I would find an answer.
I also found some friends while I was learning the language of the land. I found other mothers who gave me love and support. It was one of the greatest gifts of living with autism. These women gave me my hope back. I felt like I was finally going to be okay.
If you are lost or searching for answers for your child then I want you to know that you will be okay too. You will learn the language of this new land and you will thrive with hope.
I would like for you to take a breath and know that finding your way on our autism journey can be filled with hope. Finding support, knowledge, and learning how to heal your heart will give you a life filled with possibilities.
If you are feeling like you are lost, you will find your way. Waking up in a foreign land and not knowing where you are is terrifying. It takes courage to learn a new culture, language, and your way around your new neighborhood. I have found my way and I know that it is a struggle. I also know that when I found hope, I knew I was going to become fluent and aspire to become a tour guide.
I have become a tour guide for my son. I have shown him how to speak, and learn the culture so that he could make friends. I have shown him how to navigate his life so that he can live in any land that he chooses to live in.
Now I am also a tour guide for other mothers who have children on the autistic spectrum. Thanks to my son Joseph, I am referred to as his mother guide.
You, too, are a mother guide for your beautiful child with autism to help them navigate their life. You will find your way if you’re feeling lost.
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The days following hearing the words “Joseph is autistic,” were some of my darkest days. I was living with the deepest pain I had felt in my 32 years of life. It was my first life tsunami. I didn’t know the way out to find the light. It felt like instantly being lost and not knowing which way to go.