My Story: Tyler and Depression

Tyler was born in 1994 with seizures, Williams Syndrome, and Autism. When you have a baby, you expect to deal with diapers and feedings for about two years, then supervise for the next three years. After that, they go to school, and you start to regain some independence. But Tyler didn’t follow that path. He finally became fully toilet-trained at 14, never learned to make his own meals, and had no sense of safety, which meant he required 24-hour supervision. Routine was crucial to help him function—even a happy change in plans, like a family Christmas dinner or going out for supper, could overwhelm him, triggering seizures.

Because of this, I missed out on things most mothers take for granted: I couldn’t spontaneously have friends over, run to the grocery store, or go out to a movie. Even taking a day for myself meant days of readjusting Tyler afterwards—it just wasn’t worth it. Tyler’s father was in denial about his condition, so I was the primary caregiver. Eventually, I suffered from caregiver burnout and insomnia, landing in the hospital for about a month in 2002. My serotonin levels, the chemical that helps regulate sleep, were almost nonexistent. I was deeply depressed and suicidal.

While I was hospitalized, Tyler’s father surrendered him to children’s aid, which led to our divorce. I fought for six months to get Tyler back. About a year later, he moved into a program called Homeshare, where parents retain custody, but the child lives with a family, similar to foster care. The family he stayed with was amazing, and I remained actively involved in his life, bringing him home during the summer and every other weekend. At 18, when he aged out of the program, my partner and I decided to bring him home.

Unfortunately, my partner didn’t fully understand the commitment required. She began to resent the strict routines and the time and energy needed to care for someone with such diverse needs. I started searching for adult homes that could accommodate someone like Tyler, but they were few and far between. Agencies deemed him a low priority because he had a home, even though he had become physically abusive toward me, pushing or hitting me when I tried to stop him from unsafe actions, like walking into traffic. Despite this, he was placed on a long wait-list because he was considered to have safe accommodation.

Once again, I was the sole caregiver, and I could feel myself heading toward burnout and depression. I had to make the hardest decision of my life—I legally abandoned Tyler to force the agencies to find him a safer home. He spent some time with Community Living, and at age 22, we finally got him into L’Arche Stratford, a private group home for people with special needs. This is where Tyler spent the last two years of his life.

Throughout it all, I remained actively involved in Tyler’s life. I was at work when a police officer came to tell me he had passed away. I was devastated. My entire life had revolved around him, and without him, I lost my sense of self. Family didn’t understand—they thought I should be relieved of the stress and burden, grieve for a while, and then move on. But I fell apart. I started engaging in short-term energy-releasing behaviors (STERBing)—a topic for another blog. Eventually, I began seeing a counselor for grief management, but by then, the damage from my self-isolation and behaviours had taken a toll, and I lost my second marriage.

As a perfectionist, this hit my self-esteem hard, and I spiraled into depression again. What was wrong with me? The answer is: nothing. I’m human. I’ve learned that it’s okay to take time off work around the anniversary of Tyler’s death. It’s okay to cry when “Can You Feel the Love Tonight” by Elton John comes on the radio—this was our song; I used to sing it to him to put him to sleep. It’s okay to break down. It’s okay to not be okay.

I’ve also realized that friends, clients, and family don’t know what I’m feeling. How could they? Everyone grieves differently and for varying amounts of time. I’ve learned to tell them when I’m not in a good space and to express what I need—whether it’s a hug, space, or companionship. Honest communication, not the automatic “I’m fine” response. It’s okay to be human.

Let’s make sure to ask when a friend or client seems out of sorts and genuinely listen to their response. Offer help if you’re able and if they want it.

Let’s treat each other with kindness.

Karen