By: Stacie Dziwulski
My oldest son, Patrick was diagnosed in kindergarten with ADHD. Looking back, he was struggling emotionally way before that – I just didn’t know it. One night, when Patrick was 8-years-old, he stopped breathing. We called 911 and the paramedics took him to the local hospital, but they were not able to intubate him. The transport team from our local children’s hospital came and rushed him to the ICU. Why would he stop breathing? So many questions were flying through my mind. The attending doctor in the ICU told us to go home and get some rest and we would meet with Oncology in the morning. That’s how we learned that my son had CANCER. Patrick was diagnosed with Non-Hodgkin’s Lymphoma.
We were blessed to have amazing care at Roswell Park Comprehensive Cancer Center. He was in treatment for 3-years and is now going on 20-years cancer free! I often think cancer was easy compared to mental illness because you knew what to do, as well as what the plan and protocol was. We showed up every Thursday for three years, the chemo made him sick, his hair would fall and sometimes we ended up in the hospital for extended stays. But, we knew what to expect. Mental Illness is the dark unknown. There aren’t protocols, there aren’t plans and there is a lot of trial and lots of ERROR.
Going back when Patrick was in middle school, his learning disability reared its ugly head. He would purposely get in trouble, so that he could escape the horrible possibility of being called out in class. He didn’t want to go to school and we would fight every morning. He acted out with aggression and was in the discipline office more than he was in class. It was heartbreaking for me, as a mom, to witness this. I just wanted Patrick to feel better and I wanted to fix him.
We fixed his cancer, why couldn’t we fix this?
We decided to place Patrick in a smaller classroom in a different school district. I felt it was important he stay with his peers in his district, but there wasn’t a class that could fit his needs. At one point, while at his new school, Patrick admitted to wanting to harm himself. He was only 12 and it was a very scary time. He was admitted into the psych ward for evaluation.
I have very few memories of this, to be honest, because I think I blocked it out of my mind. I do remember them taking the shoelaces out of his sneakers – him crying and being so scared and me crying and being so scared. He remained there for five days. His stay included med changes, therapy and once he came home, nothing really changed.
High school was better – he tried sports, had a girlfriend and enjoyed photography. He made it though and graduated. When community college started, we bought him a car. Patrick suffered from severe anxiety and panic attacks but loved driving his car. We learned, months later, that Patrick had been driving to classes everyday but never leaving to go inside to class. People often think that if you have panic attacks you can’t drive, but this just shows that everyone’s struggles are different.
Mental Illness. It’s an invisible illness. Most of us are rational thinkers. If you can drive, why can’t you go to class, make a doctor’s appointment or pay a bill? It doesn’t make any sense. That is the difference between cancer and mental illness – the science behind cancer is easier to understand. It is horrible and scary, but it is rational. This is your diagnosis and this is what we can or cannot do to help you. There is no black and white with mental illness.
This is why I do what I do and why I love what I do. I was hired at MHA (Mental Health Advocates of WNY) because I am a parent of two sons who lived through many challenges. I am a Family Peer Advocate. A Family Peer Advocate is someone that has a lived experience of having a child, grandchild, or foster child that has a serious emotional disability and has used service systems. Simply said – I have walked in your shoes.
My role is to help other families navigate the unknown world of mental illness. We are here to teach caregivers about systems and supports for their children. I have always said, you don’t know what you don’t know. If you have not lived this life, you cannot be expected to know what to do. We help parents have a voice at the table when decisions are made. Parents and caregivers are the one constant in their children’s lives because teachers come and go, as well as therapists and doctors. Parents are in it for the long haul.
Family Peer Advocates are free of charge through MHA regardless of insurance. Our advocates undergo an extensive training process and are credentialed through Families Together of NYS. We want families to BE HEARD and to BE HELPED.
Patrick still struggles with his mental health, but I have the support I need to continue to be there for him. This is what I wish for all parents and caregivers out there loving a family member with a mental illness because THEY and YOU deserve hope.