TNOYS is coordinating the Harris County Transition-Age Youth and Families initiative focused on youth and caregiver engagement to improve mental health services and supports for a young person’s successful transition to adulthood. We recently partnered with NAMI Greater Houston on a parents and caregivers-only workshop series and are excited to spotlight the experiences of one caregiver, Karen Chamblee.
It had been a long 2 years trying to find a diagnosis for our 12-year-old son. Learning our son had an Autism Spectrum Disorder had come to permeate every area of our lives. Our family time had become a battleground, our marriage was hurting, we pulled away from friends and even stopped attending church. And sleep? What was that?
We had taken our son to see a child psychologist, 2 child psychiatrists, 3 child therapists, and tried multiple medications, diet changes, supplements and even an equine therapy program. Thanks to some good medication we had finally found some help addressing our son’s depression. He hadn’t talked about harming himself in a while, but we really hadn’t moved into what his father and I considered “recovery.” Forget recovery, where was our cure? Nothing we had tried had offered us any hope for his future and very little peace of mind.
I had a new friend who had walked in a NAMI walk and I had reached out to her to ask if she knew anything about NAMI. Boy, did I get an earful! She began to describe how one of the classes had helped her understand more about her own mental illness. I was in shock to realize she had been diagnosed with bi-polar disorder. I never guessed how much she had struggled in her past. She sounded like she’d overcome so much! Could there finally be a place that would help us?
Soon after I called NAMI. I signed up for a NAMI Basics class, which is a free 6-week educational program for parents and other caregivers of children living with mental illness.
That day I began a new chapter in our journey with mental illness. I had no idea what to expect but I was just sure it would be yet another demanding thing that would involve my money and a large amount of my free time, a precious and increasingly rare commodity these days.
What I discovered wasn’t quite what I had bargained for. First of all, getting registered for the NAMI class was easy! Because NAMI classes are free it was the cheapest thing we had done up to that point to get help. This time we weren’t in a doctor’s office, clinic or another office where I’d need to fill out 10 pages of intake forms in order to have my son seen, I just made a call and answered an email and said, “Yes, I’ll be there.”
I didn’t think much about the class again until the day arrived and I realized how much I had to that day. Honestly, I almost didn’t go. But having committed to being there and realizing they were expecting me somehow made a difference. I shelved my to-do list and headed out the door.
I’m pretty sure I arrived late. I think I expected to find a sterile room where all participants would be sitting in a circle each opening the session with, “Hello, my name is Mrs. Crackpot and I have a child who is mentally ill.” Instead, I walked into a community center, followed the signs and walked up to the door of a conference room where the first thing I saw was a table filled with loaner books on topics that could have all could’ve been written just for my son. Score! I ended up checking some of those books out that very day to take home with me.
I found two women, middle-aged leaders, with kind eyes who gave me a warm welcome. I didn’t know it at the time but would later come to realize that these two ladies had been through some pretty dark days too, just like me. When they each shared their story in those first few minutes I realized that I was, for the first time, in the company of someone who had been in the trenches.
These two moms had “lived experience,” walking through an uncertain childhood with their own young adult sons. They began to share their stories and what led them to NAMI. They both had boys, like myself, who were adults now and suffered from mental illnesses. It was weirdly refreshing to hear someone talk about many of the taboo subjects the world doesn’t like to hear about. I was stunned as I thought to myself, “I’m listening to my own story coming out of someone else’s mouth.”
As leaders they had each been through many training sessions to become NAMI Program Trainers and Mental Health Awareness Advocates, but nothing prepared them to identify with me and the five or six other parents in our class, like their own very real mental health journeys with their sons. Today these women are both advocates and even frequently travel to our state’s capital to educate our lawmakers and advocate for people with mental health challenges.
Well, it finally came to my turn. I knew it was coming. I was nervous to tell my son’s story, our family’s story. As I started tearfully sharing a bit I looked around and realized there were a few other moms with tears who could relate to the emotional release I was experiencing. It was only a 5-minute version but still it was so raw and honest that I’m not sure I’ve even ever told it that way since that time.
Looking back I realize now that up until that morning I had not openly shared my son’s story in its unedited version with anyone other than his various mental health professionals. In fact, after explaining his symptoms to so many countless doctors and therapists I had basically stopped talking about him to anyone other than professionals. It was just getting so old to have to explain him over and over.
I had become very good at politely explaining my son’s differences to various friends and family members in a way that didn’t make what we were going through seem “so bad.” I had learned to recognize that look of uneducated pity that other people get when you try to explain a difficult personal situation, especially one involving or suggesting a mental illness. In all honesty how can just anyone understand what is involved with chasing a diagnosis in the mental health professional community, trying to manage a busy family and all the while still managing the actual difficult uncertain daily behavior of my son?
The NAMI Basics class helped me find people who might really know what my husband and I were living through. These ladies began to unpack mental illness in that first class in a way that really resonated with me. We were open and honest about the hard times and as we each listened and shared I could feel myself unraveling. They could actually know the challenges I faced each day and there was a very real possibility that help had finally found me.
It was also apparent that the two leaders both actually had a pretty close relationship with one another. They were actually friends apart from NAMI, and how could they not be? Common experience is a bond that quickly thickens. Honestly I was actually a little jealous that they each had someone so close who they could share together the heavy burdens they carried individually for their boys.
Before that first class was over I had begun to let my guard down about mental illness. I had started learning what I now call the “ins and outs” of living productively with a child who is weighted down by mental illness and a its variety of symptoms.
First of all, the idea that so many people who suffer from a mental illness have more than one kind of mental illness was a real shock to me. I had spent time, money and loads of stress trying to pin point exactly what we were dealing with. Thankfully, I realized that it is not uncommon to have OCD, anxiety and depression and that all of it could actually stem from a primary diagnosis of generalized anxiety, bipolar disorder or even a neurologic disorder, like an Autism Spectrum Disorder.
Most importantly however, on that first day I had met two older moms who had survived and whose sons were actually thriving and managing their disorders. God! How I long to be able to say that someday about my own son!
With my head held a little higher I left class that day clutching the beginnings of a great informational binder that was soon to become my guide to the world of mental illness. It is a book I refer to today many times per week.
NAMI helped me see the all-important fact that there are other parents in my community living through the challenge of childhood onset mental illness. And none of these families are in “cured,” either, as I was so desperately seeking. With the help of NAMI I have stopped thinking cure and started thinking, “management.” Even though NAMI classes are 100% free this shift in thinking is priceless to me. Yes, indeed, my NAMI Basics class was not at all what I expected.