From Grief to Peace: Navigating Unexpected Turns on Your Autism Journey

Welcome back to another episode of the Thriving Moms of Autistics Podcast. 

Raising children brings a whole other layer of experiences. There are immense joys, sorrows, especially when they are struggling and when you are struggling. Then there are periods of grief sprinkled throughout your journey. 

Grief is experienced by everyone whether your child is autistic or not. Our grief is slightly different based on the unknowns of the future. Will they fall in love? Will they say their first words? Will they have a job or drive a car?

In my 20’s, I got a phone call from a family member that my dad had brain cancer and didn’t have long to live. I wasn’t sure how to feel about this. They said that they wanted to let me know and reminded me that whatever I was feeling was okay. Those feelings belonged to me and went on to express that it was up to me to contact him or not. 

So, I did. I made the 14 hour trip twice to see him before I passed. One of the trips, I had just got there and realized he was losing his bodily functions and was wet, which is common with brain cancer. 

Hospice was involved but they were not due for a visit until later in the day. 

I offered to support him and help him get cleaned up and change his linens. He said no and that he could not let me do that. I reminded him that I didn’t mind at all and wanted to help. He said to me, “I can’t let you do that because I never did anything for you.” I said that I recognized that he wasn’t the dad I needed him to be but that was then and this is now. I reminded him that he gave me the biggest gift anyone could, which was life. 

Although he still wouldn’t allow me to help, we had a much needed and important visit before his passing. Once I got home, I got a phone call in the middle of the night that woke me up. I answered and a man started talking. I said, “Dad?” He asked, “Who?” I said it again, “Dad?” He said no honey, I’m not your dad. It was a wrong number. 

In that moment, I realized that the loss of my dad wasn’t like most people’s experience or loss. I was grieving something that never was and not our beautiful memories together and father and daughter. I grieved what we could have had had he chosen his role as a father and husband rather than other things.

Moms of autistics often grieve things that society experiences from raising neurotypicals. Our experiences are mostly if not entirely different. 

In this episode, we explore the importance of meeting ourselves where we are at, feeling the feelings that are hard, being okay with that, and walking through the process of grief, and essentially moving forward in a journey that is very different from others. 

Find the full transcript for this episode on your favorite podcast app. 

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Moms of Autistics Experience Grief More Often Than Other Moms Do

In fact, moms of autistics experience some really big emotions often. It weighs heavily on you at times. Sometimes, you don’t deal with things as well as you would like. 

When that happens, you have a choice. You can get bogged down by it and get stuck in the negativity and the shame. Or you can view it for what it is. It is a learning experience. 

I often say that bad situations bring opportunity if you allow it to. Give yourself permission to grow from it rather than staying in the sorrow.

There is one trick I use that helps me get unstuck. I use the feelings wheel. I have provided this in the transcript. It sounds cheesy, but sometimes, we are comple