by Beth Ayers, Family Support LeadNovember 5, 2024November is National Family Caregiver Month. On Caregiver Action Network’s website, they share the importance of recognizing caregivers. Celebrating Family Caregivers during National Family Caregivers Month enables all of us to:Raise awareness of family caregiver issuesCelebrate the efforts of family caregiversEducate family caregivers about self-identificationIncrease support for family…
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Mental health has long been an overlooked aspect of overall health. However, with growing awareness, advocacy, and research, the conversation around mental health is evolving. One of the major milestones in this ongoing movement is World Mental Health Day, observed annually on October 10th. This day serves as a platform for advocacy, awareness, and mobilization efforts to promote mental health and to provide mental health support.
The word “recovery” is usually associated with addiction, sobriety, AA, substance use disorder, treatment, or abstinence. In healthcare, we associate “recovery” with healing after surgery, illness, or injury. In the recovery world, “recovery” from mental health disorders can look like managing symptoms, absence of hospital stays, improvement in mental health, or increased ability to function in day-to-day life.
The word boundaries can bring to mind a variety of images and feelings. Boundaries can have a negative connotation or conjure feelings of safety. Boundaries can be a hard concept for many. Often, setting boundaries feels uncaring. I personally have a love/hate relationship with boundaries. I find the concept confusing when trying to apply it to my life and relationships. Setting boundaries can cause conflict with others whose boundaries are different. Essentially, boundaries protect the important things in life. In order to set effective boundaries, you have to know your priorities. And to know your priorities, you first have to know your values.
I did not expect to be raising a child with a disability. In fact, I’m pretty sure no parent does. When I dreamed of having children, I imagined them healthy and living life like their peers. Sure, there was bound to be misbehavior and bumps along the way, but not a disability. Certainly not one that would shatter my hopes and dreams and force me to change my expectations. Adapting to being a parent or caregiver of a child with a disability can be hard.
My child was never officially diagnosed with Borderline Personality Disorder. Partly due to their age (under 21) and partly because insurance companies didn’t like that diagnosis. I was told there was a lot of stigma around Borderline Personality Disorder (BPD) and no treatment for it. Only the symptoms such as anxiety, depression, or impulsivity could be treated with medication. Dialectical Behavior Therapy was effective but not a “guaranteed fix” which is what insurances like to cover. Some doctors who saw BPD on a patient’s chart automatically assumed there was no hope for that patient. I appreciated the protection the doctors and therapists were trying to give our child, the chance to have hope and unbiased treatment. But I hated playing the insurance game and hiding because of stigma. My thought was, “If they have BPD, list it as a diagnosis.” If our child had a rare form of cancer, doctors wouldn’t think twice about putting it in their chart. Stigma does not get changed by hiding from it. It gets changed by being open and honest and authentic.
by Beth Ayers, Family Support LeadMay 21, 2024“I have been where you are.” “I understand.” “It’s not your fault.” “It’s okay to ask questions.” “You have rights.”“You are an important part of the process.”“You are doing the best you can.”“Here is what helped me.”“You are not alone.”“There is hope.”As a parent raising a child with…
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In the complex landscape of mental health, resilience stands out as a beacon of hope and strength. For children dealing with mental health challenges, cultivating resilience is key. Resilience equips children with the ability to navigate adversity, bounce back from setbacks, and thrive despite life’s inevitable challenges. As a mom of two fabulous children with mental health challenges, I often feel unequipped to help them navigate these challenges. If I had a magic wand and could, “poof,” free them from their mental health struggles, I would. I would give anything to take away their pain and my hurt that comes from watching my kids go through that pain. The following are tangible skills our kids can learn to increase resilience. Resilience in turn fosters their capacity for emotional well-being and success.
Recovery or resiliency stories are powerful and important. They do a few things: 1. Connect us to the peers we are working with, 2. Give value to the unique perspective our lived experience brings to the table, 3. Show the importance and effectiveness of peer support. According to Montana’s Peer Network’s Peer Support Training, our recovery or resiliency story is “at the heart of the work we do in peer support. It is important that, as peer supporters, we understand our own process of recovery or resiliency. We need to be comfortable enough to speak about our own journey with others. Being able to describe our experience in a concise and hopeful manner is important. We want to tell our recovery [and resiliency] journey in a way that will inspire or provide a sense of hope to those still struggling.” A recovery or resiliency story “lets those you work with know you really do understand how difficult it can be. And how to overcome challenges. This is your greatest strength as a peer supporter.” Whether we are Behavioral Health Peer Supporters or Family Peer Supporters, it is important to share our story with a peer as it relates to them. They are the focus. Sharing our story is a useful tool to build connection and engage with your peer.
Maintaining friendships while raising children with mental health challenges has been hard for me. I have narrowed down my list of “friends,” keeping those who could support me without judgement through extremely challenging times. I have also come to appreciate friends who are willing to say the hard things out of love that I need to hear. I deeply appreciate others who share in my lived experience and just “get it.” My own comparison and self-pity have caused me to keep some friends at a distance. The stigma associated with mental illness kept me silent about what my family was going through. And the stress of caring for my child, seeking out services, attending multiple appointments weekly, and emotional exhaustion left me little time to devote to my friendships.
My husband and I had been married for 9 years when mental health began to serious affect our child’s health and our family’s life. Parenting in general can cause tension between couples. Being on the same page as each other, having similar parenting styles and values, agreeing on consequences, communicating effectively, and supporting each other are all things I have found important in raising children with my husband. And all things I have had to learn and work on. Every family has their struggles and goes through ups and downs. Through trying times, I was able to turn to my parents, friends, and other moms for support. When my difficulty became more than common parenting challenges but parenting a child with behavioral health needs, those relationships shifted and the way I needed to be supported changed. My husband and I had been going to marriage counseling. I had been attending Al-Anon meetings. I had made friends with other moms with kids in the same grade as mine. I was part of a church community and Sunday school class. My loving and supportive parents lived close by.
When I began this article, I was going to write about involuntary commitment, in particular for young adult children by their parents. But after spending hours writing and talking to others, I was more confused than when I started. I was left with more questions than answers. And maybe that’s how it should be. Maybe we should wrestle with it. Maybe there is no right or wrong stance but many answers that depend on numerous variables.
I am a mom of two, now adult, children with behavioral health challenges and I work as a Family Peer Supporter helping other parents currently raising children with special healthcare needs including behavioral health. As a Family Peer Supporter, I get to walk beside families and help lift their burden by listening and connecting through a shared lived experience. Parenting is stressful in and of itself. It’s a full-time job with no training manual. Parents don’t clock in and clock out. They don’t get to call in sick. And a literal life depends on how well you do! Like most moms, I envisioned the future for my children including friends, activities, school, summer camp, growing up, high school dances, graduation, college, marriage, children of their own, and so on.
I began going to Al-Anon because a family member’s alcoholism was affecting my life. They had found sobriety, but their behaviors still bothered me. The only way I knew to deal with the situation was control. The more I tried to control what I couldn’t, the worse the relationship got. My thought was, “If they would change, everything would get better.” The problem was they weren’t changing, no matter how hard I tried! The tools I learned in Al-Anon and the recovery I experienced prepared me for the challenges I faced as a parent.
I have always enjoyed volunteering and service work. In Girl Scouts, they were called service projects. I can remember doing clean up projects and singing at retirement homes. As kids, those of us in the neighborhood would pick up trash around a nearby church. I had a reading “grandma” in 5th grade who I continued to visit for many years after. I also volunteered as a Candy Striper at the hospital delivering mail and flowers. As an adult I learned the importance of service work to my recovery, whether that was opening and closing a meeting, sponsoring others, or being the treasurer for a group.
For most of my life, I avoided reality. At the time, I didn’t know this was what I was doing. I would have said I was helping or fixing or taking charge or being strong or managing. I felt that I was in control. I thought my tactics would move me forward, but, in fact, they did not. They kept me stuck. You could tell I was stuck by my often-used phrases of “This isn’t fair!” or “Why did this happen to me?” I constantly wished things were different, that I was a different person with a different life. My thoughts and reflections about life and myself included words such as “should”, “ought”, and “must.”
Before we can accept that mental health is important and affects our kids, we have to acknowledge it, talk about it, and address the issues surrounding it. We have to fight against the stigma. We have to recognize mental illness as the physical illness it is and not a character defeat.
I was ill-prepared for taking care of a child with behavioral health challenges. I didn’t understand mental illness and neurodiversity. I hadn’t heard of trauma-informed care. I had little tools in my parenting toolbox. I parented a lot of the time from a place of fear, control, embarrassment, fatigue, and ignorance. I also parented out of a deep and all-consuming love.
Mental illness affects the whole family. And although each member’s recovery is individual, recovery and healing as a family has been important to me and to my own recovery and wellness.
Family Peer Support Advocacy Opportunity
It is time to let your voice be heard! There are 2 opportunities in January to give public comment advocating for Family Peer Support.
The MT Family Peer Support Task Force & Steering Committee worked tirelessly last year to develop professional standards for Family Peer Supporters. Unlike other states, Family Peer Supporters in MT work with parents/caregivers of children with ANY special healthcare need, including behavioral health. Attached is an overview of the professional standards that will be recommended for Family Peer Supporters in MT. Now it is time to focus our efforts on certification and funding. There is an advocacy opportunity on January 18, 2024.