Creating a ‘Community of Care’ for My Son
*Lydia’s 16-year-old son was only 12 when diagnosed with pediatric bipolar; now with her faith and fortitude, she has found the strength in others who share similar struggles
Please share with us a summary of your son’s story.
Since the age of four, there was something different about the behavior of my youngest son *John. He was exceptionally well-behaved while at preschool, but at home he could be a nightmare. Sometimes he would lash out in swearing rages and occasionally dangerous physical fits. His counselor and I thought he was just defiant.
When John entered the fourth grade he became depressed, and without my knowledge, planned to runaway from home. Then one Sunday afternoon my nine-year-old son disappeared. Thankfully, I could tell by his missing backpack and clothing, that he left voluntarily. After four hours of searching, the K-9 police unit found my boy in the woods at our local community center, a place John had spent many summers for day camp.
The fall of fourth grade was John’s first hospitalization and first time taking medication for depression. Now, in tenth grade, he has had at least six inpatient hospital stays and multiple partial programs or other levels of care. A bipolar diagnosis came while John was in middle school. We pursued and received an affirmative second opinion. Now, it’s about staying healthy with proper treatment.
Please give us an idea of what you personally went through during this journey.
Mothering a child, at any age, with a mental health condition puts an extreme amount of pressure, stress, and heartache on your life. So many times, I thought I would burst from frustration, anger, resentment, and fear. My solid rock is my faith in Jesus as Lord of my life. Not only have I survived over 10 years as a caretaker, I have been made so strong and connected with many others in this life who have similar struggles. I feel as if I could handle anything thrown my way.
What do you wish could have happened differently that would have helped your son?
I wish I had recognized the signs of depression in my elementary school student. I did not know the signs for depression in children.
What have you learned about finding the right medication regimen for your son?
Medication is often necessary and requires careful oversight. You have to set reminders on your phone to dispense at the proper time and prompts on your calendar to get to the pharmacy each month. Some regimens require lab tests every six months, doctor check-ins every three months…there is a lot to manage with medication. Forcing the child to take medicine when they refuse can be a huge battle, too.
What advice can you give to other parents who are currently in their treatment journey?
Keep records of medications with dates and notes on how they worked.
What’s the most important lesson you’ve learned?
Don’t sweat the reactions and often disbelieving comments from other adults in your life. People have trouble relating to what they don’t know and may come across as doubtful about what symptoms bipolar disorder causes. On multiple occasions, teachers or friends tried to talk with me about better discipline with my kid, stating that was the problem. It’s good to be open to hear truth when spoken from a trusted advisor, but don’t mistake ignorance for truth.
How has living with bipolar disorder affected other family members?
My son is the youngest of five kids from a blended family. When he was younger, his big brother wanted to help during the intense episodes, but I always turned him away. I felt it was my role to keep the situation under control, and that meant dismissing John’s siblings from engaging while he was in a fit of anger.
During times of restraining my son, the eldest child was left alone, most likely feeling worried and scared. Unfortunately, he was deprived attention from me and everyone else in our day-to-day lives. The boys fought and it was bad at times, but we made it. Lots of peace, joy, and love inserted into the atmosphere regularly for over 10 years does good. Maintain a calm atmosphere, use aromatherapy, music, soft voices, anything to keep the environment peaceful.
If you could offer hope and inspiration to other parents, what would you share?
When bipolar disorder is properly treated, your child can be seen again. I got to know my son in two, three- month bursts, during his stable times, and I absolutely adore my child’s personality.
How is your son doing today?
My son is learning how to manage his mental health condition: take his medicine, recognize signs of an episode, make smart choices to avoid triggers.
Is there anything else you’d like to get across to other parents and families?
I think it’s important to form a care group-people that are in your day-to-day life that receive the same message about what it means to have a loved one who suffers from bipolar. Teach the care group to watch for early signs of depression and mania; review how to respond if a situation arises; throw red paint all over the elephant in the room… proudly reveal it to everyone, of all ages.
This is especially important for siblings who have to answer questions from other kids at school about where their brother has been or what is going on at home. It’s confusing for adults and taboo for kids to talk about. Prepare the care group by having the conversation about what the message is to the outside world. It’s sad that we have to do this; with diabetes we would tell everyone it is diabetes, but with bipolar, we avoid the questions; use the words “medicine” and “depression” when describing what’s happening.
In order to teach others how to be part of care group, first you have to learn. Get connected on social media with anything and everything bipolar! Reading articles, interviews, tidbits of information on bipolar disorder is extremely helpful. Often I find something that is perfect for someone in my son’s care group and I pass it along. Utilizing a community of care and resources is a key factor in how I survive the ups and downs of caring for my son.
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Lydia starts everyday with a positive attitude and a prayer for the day ahead. She owns a business with her husband in Northeastern US and enjoys vacationing with family and friends. Her hope is that people will become curious enough about mental illness to ask questions and receive education to kick-start progress in this area of society.
*All names have been changed to protect the privacy of individuals.
Code: bphopekids, bphopeteens