by Beth Ayers, Family Support Lead
September 10, 2024
September is Recovery Month. But What Does Recovery Mean for Families?
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.
Parents and caregivers of children with special healthcare needs including behavioral health, usually don’t see the word “recovery” applying to them or their families and especially not children who have life-long physical, cognitive, or developmental disabilities.
The Substance Abuse and Mental Health Services Administration (SAMHSA) defines recovery as “a process of change through which individuals improve their health and wellness, live a self-directed life, and strive to reach their full potential.” According to this definition, “recovery” absolutely applies to children with any special healthcare need, to their parents and caregivers, and to the family as a whole. Improvement in health isn’t only physical; it can be emotional, mental, or spiritual health. In family-centered care, the child or youth and the parents or caregivers are encouraged to participate in the decision-making process and plan of care. Their voice and choice matter and are essential. I believe it is every parent’s and caregiver’s goal to help the child reach their full potential, whatever that looks like for the individual.
The word “wellness” is often substituted for recovery. “Wellness” can be easier for some families to relate to than “recovery.” However, “wellness” can still be hard to identify with for parents and caregivers of children with lifelong health conditions or disabilities. “Wellness” is sometimes used to describe complete healing, perfect health, or being free from illness or disability. But the Global Wellness Institute defines wellness as “the active pursuit of activities, choices and lifestyles that lead to a state of holistic health.” Holistic health encompasses all aspects of a person’s being including emotional, mental or intellectual, physical, spiritual, vocational, financial, social, and environmental. Every child, regardless of their challenge, illness, or disability, can have wellness. I have a friend whose son has down syndrome, a genetic disorder that causes developmental delays and physical disabilities. I would describe him as living in wellness. He participates in activities such as sports including being on teams in Special Olympics (he even carried the torch one year!), art classes, and riding an innertube behind his family’s boat (he even loves the wipe out!). He loves his job at a pizza restaurant and told me the other day that he has been there 7 years. He enjoys volunteering as greeter on Sundays at his church and loves social interactions with his friends, family, coworkers, and everyone he meets. His life is full of purpose, fun, and wellness. He jumps out of bed everyday ready to take on the world. If that’s not “wellness,” I don’t know what is. SAMHSA “envisions wellness not as the absence of disease, illness, and stress, but as the presence of a positive purpose in life, satisfying work and play, joyful relationships, a healthy body and living environment.”[1]
Looking at the definitions of recovery and wellness, I would say they are interchangeable and possible for everyone.
Our recovery and wellness journeys are not straight lines. They come with ups and downs, forward and backward movements, stops and starts, and plateaus. They do not have a beginning or ending point. They are unique to each individual. Your recovery and wellness are defined by you alone. Recovery and wellness can take many paths. SAMHSA has developed 10 Guiding Principles of Recovery (and Wellness, added by me). Recovery (Wellness):
- Emerges from hope
- Is person-driven
- Occurs via many pathways
- Is holistic
- Is supported by peers and allies
- Is supported through relationship and social networks
- Is culturally-based and influenced
- Is supported by addressing trauma
- Involves individual, family, and community strengths and responsibility
- Is based on respect
My recovery/wellness journey began before I had children, but I wouldn’t have described it as such. From an early age, I learned what I enjoyed and what I was good at. I learned coping strategies for the ups and downs of life. Unfortunately, instead of leading me closer to wellness, my coping strategies were destructive to my health and wellness. Learning new ways to cope has been part of my journey. I have found hope and social networks in support groups. I have tried different pathways, some leading to recovery and wellness and others not so much. One pathway I tried repeatedly could be described as a tightrope. I would start at the beginning, finding my “balance” by doing everything “right.” With wellness on the other end as my goal, I would carefully make my way across. But inevitably I would make a “wrong” move. I couldn’t seem to hold it together long enough to get to the other side. I would get angry at my child or spouse; I would not get my responsibilities done; my life wouldn’t go the way I was hoping; my child would misbehave obviously due to my poor parenting; my feelings would be negative; I wasn’t doing it perfectly. And just like that, I had fallen off my “path.” Usually, my fall from the tightrope led me to those destructive coping strategies to deal with my feelings of failure and hopelessness. Eventually, I would pick myself up and go back to the beginning and start over. Always trying to hold it all together long enough to reach the other side and the wellness and safety I thought waited for me there. I have learned to take a different path of recovery and wellness. This alternative pathway is a trail. There is no end to my recovery/wellness journey, no point when I arrive at total wellness. I get to experience wellness as I move along the trail. Somedays more than others. There are times I “fall off” the path. But unlike the tightrope, I just step back on. Sometimes I get lost in the forest and have to find my way back. Sometimes I turn around and go back aways. Sometimes I sit down stubbornly refusing to continue on. As I look back at my pathway, I see how far I have come. Despite all the detours and wrong turns, I have made progress. Unlike the tightrope requiring perfection where I continue to have to start over at the beginning, my new pathway is more gentle and forgiving. I learn how to offer myself and others grace.
My recovery/wellness journey has also included, at different times and not all at once, professional counseling (individual, family, and marital), sponsorship and mentoring (getting to be both sponsor and sponsee), support groups, church groups, self-help and leadership development books, peer support trainings, exercise, developing healthier eating habits, crying (studies have shown the healing power of tears), prescribed medication, self-care such as rest through meditation or fun with hobbies I enjoy (snuck into the tiny bits of free time here and there), quiet time and prayer, traveling, spending time in nature, keeping a gratitude list, journaling, being in relationship with others (my close friends have been lifesavers), and learning to use my voice and my lived experience to advocate for myself, my child, my family, and others. Becoming a Family Peer Supporter has been a big part of my recovery/wellness journey.
Acceptance has also been important to my recovery/wellness. Accepting myself, accepting my child, accepting my child’s behavioral health challenges and diagnoses, accepting my reality, and accepting what I cannot change which is everything and everyone besides myself and my actions. I have had to go through the grieving process with lost dreams and hopes for myself and my child. And I continue to go through the grieving process whenever there is change or a new stage of treatment or new loss. Overall, hope has been the most important. Hope that recovery and wellness are possible; hope for new dreams; hope that we will get through whatever season we are in; hope shared by others who are further in their recovery/wellness journey. We share hope whenever we share our recovery (or resiliency) story with others.
So, what do the words “recovery” and “wellness” mean to families and parents/caregivers raising children with behavioral health challenges and special healthcare needs?
- “A process of change through which individuals improve their health and wellness, live a self-directed life, and strive to reach their full potential.” (SAMSHA)
- “The active pursuit of activities, choices and lifestyles that lead to a state of holistic health.” (Global Wellness Institute)
- “Not as the absence of disease, illness, and stress, but as the presence of a positive purpose in life, satisfying work and play, joyful relationships, a healthy body and living environment.” (SAMHSA)
To hear other family members share their own family recovery story and how they learned to improve their health and wellness, live a self-directed life, and strive to reach their full potential as a family, register for a Special Recovery Month Family Event: "Nothing About Us Without Us: Families Supporting Recovery." This event will be held virtually Monday, September 16, 2024, at 11:00 am MST and hosted by SAMSHA and the National Federation of Families. Register at https://www.zoomgov.com/meeting/register/vJItf-irqTwiG8Bn85d59NIptD0G61q1ZSk#/registration.