A Family Secret

A mother's perspective on mental health and recovery

Update: I’ve decided to make this post free as many may benefit from this experience. It’s been a long road now almost 9 years later. I am available for quick chats to listen and provide resources from this journey. Parents, you are not alone.

Photo by Jake Weirick on Unsplash

“It’s always been like this, I’ve always heard voices,” my son said matter-of-factly. It had been a year into the world of sleepless nights, mania, hospitalizations, and medications that didn’t work.

He was 14 years old.

My mind raced through moments of his childhood to find the signs. Everyone talks to themselves, and children play alone with their toys to create fantasy worlds and stories. He had always been one to think before engaging, observe the scene, thoughtful, sensitive, and loving.

His first break was at age 14 when he admitted he had not been sleeping for weeks. We found him lost in his delusions and hallucinations of friends and FBI watching him, bees infesting his stomach, and drinking mugs of hot tea to kill them. Bringing him to the emergency room only to be turned away with a dose of melatonin because he was of no harm to himself or others. We learned our lesson quickly. We returned the next day to say he was of potential harm to himself and only then did they admit him into the adolescent psychiatric unit.

Living in suburbia, in a relatively tight-knit community, this became our family secret. Fear of the unknown ourselves led us to believe others would be fearful as well. We didn’t want our son to be rejected when he needed his friends the most or other parents telling their children to stay away.

Living in suburbia, in a relatively tight-knit community, this became our family secret. Fear of the unknown ourselves led us to believe others would be fearful as well. We didn’t want our son to be rejected when he needed his friends the most or other parents telling their children to stay away. We knew he would do no harm. He was still the boy we knew, masked by a neurological disorder.

Thus began the journey to understanding this thought disorder of confusion, which is a neurodivergent way of thinking.

According to the Clevland Clinic, “The term “neurodivergent” describes people whose brain differences affect how their brain works. That means they have different strengths and challenges from people whose brains don’t have those differences. The possible differences include medical disorders, learning disabilities, and other conditions.”

Everyone’s brain develops in its own unique ways.

Sometimes the disorder overrides the frontal lobe of the brain and causes confused thinking. There is a spectrum and variety under the family of psychosis diagnosis which also houses the labels of bipolar and its variants, schizoaffective disorder, paranoid schizophrenia, or disorganized schizophrenia.

My experience over the last 8 years as a parent witnessing, and fighting for my son’s life within a cycle of denial and acceptance and back again has brought me through the fire to this moment. I am in a state of acceptance for the moment and I figured I’d better share now before the grief and denial set in again and maybe it will help others.

I’ve been afraid of the word, schizophrenia, for years and I’m writing to continue to dispel the stigma within myself and others’ place upon it. I’m sharing it to normalize it as a way of thinking, a perspective unique to each person possessing this trait, not as an illness.

Are people who live with autism ill? No. In fact, there are some similar characteristics of people living with autism in people living with schizophrenia — social withdrawal marked by extreme detachment, self-isolation, inability to form relationships, frequent failure to acquire communicative abilities, and preoccupation with sameness.

However, I’ve been coming to understand that people who live with autism may also share hallucinations and delusions in their makeup. I can only hope the way companies have embraced people with autism they will someday embrace people with schizophrenia.

As intense as it has been in the early years of the diagnosis, there have been progressive stages of recovery. I’ve worked with various psychiatrists, therapists, naturopaths, various healers, shamans, eastern, western, and everything in between. Thankfully, my son has been stable, out of the hospital, and with the appropriate medication for the last 5 years. It has been a multidimensional journey, individually and as a family unit. There is a lot to be grateful for and living in uncertainty is unique to our unit.

What I know to be true is that every person I have met living with schizophrenia, who has had recovery therapy treatment in some way, is a highly sensitive, intelligent person living between worlds of internal and external stimuli. Their reality may be different than the 3D world we live in and their world is not the wrong way.

The more I approach my son’s alternate world with a relaxed curiosity and not fear, the better my relationship with my son will continue to be. His way is not wrong, it’s simply different. There’s a daily time limit on our connection and conversation and I’ve learned to accept it.

He has hopes and dreams like any other 21-year-old young man. He also has to be prodded to do his laundry and eat well, like any 21-year-old young man. The more I allow, let go and accept the better he is and the more progress he makes. I am grateful that he is on the end of the spectrum on the high-functioning side, most of the time.

As a society, we are speaking more about bipolar, anxiety, and depression, however, talking about schizophrenia is still scary. We have to do better and move forward with understanding, compassion, and empathy. To be vulnerable and allow our fear to ignite our curiosity.

Referenced article