A parent with a disability raises some challenges in their teenager’s life. A tween/teenager may have an adult responsibility to be the caregiver. However, they have not reached full cognitive maturity to truly comprehend their role and perceive the disability and effects on the family unit. Disabilities vary in several magnitudes: sensory, cognitive, and mobility. The most common disability among all Americans is mobility. It is where movement in the upper/lower extremities is complex or debilitating. Tasks as simple as walking to the kitchen, getting dressed, showering, brushing teeth, and cleaning require all body parts to function properly. When a parent develops a disability, the disabled loved one often asks their teenager to help and pick up the responsibilities of the home as it dominates their daily lives. The increased demands may impair the tween/teen’s health, emotional needs, education, social and communication skills, and emotional well-being.
Some studies indicate both positive and negative effects. Some teenagers reported they feel closer to their parents and feel more appreciated. Although, studies prove they have poorer physical and emotional health. Also, they are not reaching their full academic potential, often falling behind. Households with a disabled parent generally have an underprivileged socioeconomic environment compared to their peers. According to the study in Disabil Health J. 2018 Jul; 11(3): 405–411. participants ranging from ages 13-17 years old with at least one parent with a mobility disability show mixed results from negative and positive. The participants completed a video interview and photographed their homelife experiences to share for this study. The results described their views and frustrations and the effects on their daily life and family unit. Many children have reported they feel more mature, responsible, educated, experienced in social justice, and knowledgeable of disability civil rights compared to their peers.
But what does this mean to the family unit? A disability sets for extra demands, needs, challenges, and financial burdens for the entire family system. These challenges are across all types of disabilities. The sudden onset of the disability is when the family life changes in significant ways indefinitely, short term, or long term. All members now take on the day-to-day affairs yet try to maintain normal family practices. The disabled parent will abandon their career, and the spouse is left to have the primary source of income, or a single parent will rely on the welfare system and disability payments. While the working parent emerged in work maintaining the financial obligations, the teens acquire more hands-on responsibility than what is age-appropriate. Sometimes the duties of disabled family member come disproportionated and consume the family’s time, money, energy, and other unmet emotional needs. But it is crucial to preserve their identity and lifestyle, and this is where it isn’t easy to balance. According to the study of Patterson 1988; Varni and Wallander 1988, “Overall, stress from these added demands of disability in family life can negatively affect the health and functioning of family members.” Some studies show an increased risk of psychological and behavioral problems, depression, anxiety, anger, aggression, addiction, guilt, and resentment. At the same time, others do not show signs of increased risk at all. On the contrary, families have reported the impact has strengthened the family unit with a closer connection, deeper understanding, finding new friends in their community, develop a profound look on life, become more empathetic, and enhanced their faith.
Teenagers become torn between the real world they live in and the world they thought they would have. They are trying to balance their normal teenage world of school, friends, sports, hobbies, and now, being a caretaker. It’s not expected that other kids can relate to the same lifestyle and understand the cumbersome life. These teenagers feel they must hide the truth to be accepted in their social network. Sometimes, the needs of caring for their disabled parent come before going to school, completing assignments, missing social gatherings, and other events.
How do teenagers’ cope? Here are a few tips to consider coping:
- Your life matters too! Balance your needs, school, extracurricular activities, and friends.
- Manage your time and seek academic help. If you need academic accommodations, like extended test time, or extension on assignments, speak to your teacher privately and explain your situation. Working under pressure will not be effective; academic productivity matters.
- Ask for a family meeting and establish a schedule with specific days, times, and responsibilities for each household member. Knowing your exact responsibilities will help balance your life outside your caregiving duties.
- Schedule frequent family meetings to share how you are feeling and support each other. If you feel overwhelmed and your independent life is slipping through the cracks, ask for help and alter roles and rules. Try new ways for a better outcome. Do not feel you are solely responsible for caring for your parent.
- Speak to your family members and suggest seeking out other resources in the community to help. Like a cleaning service, a home health care aide, mobility equipment, grocery delivery service, a subscription for a premade food delivery service, hospital outreach programs, local non-profit groups, and religious groups. These resources can lift some burden off your plate from time to time.
- Self-care! Take care of yourself. Make sure you make time for yourself for what you enjoy and time to decompress those stressors. Whether attending a sporting event, hanging out with friends, sitting quietly, reading a book, listening to music, going to the gym, pampering yourself, meditating, there are so many things you can do for yourself. Our Senior Associate, Madeline Weinfeld, LCSW, explains further in her blog, “What is Self-Care?” You may get some other great ideas on self-care tips.
- Make sure you get the appropriate amount of sleep. Sleep is crucial for your emotional well-being and daily functioning. Teenagers generally require 8-10 consecutive hours a day.
- Develop a positive attitude about the situation. The disability cannot change it, but you can accept it. Think of the positive contributions your disabled parent brings and how the problem gave you a new outlook on life with a deeper meaning and appreciation.
- Schedule a class period a week with your school psychologist or guidance counselor to talk about your emotional challenges and help with educational needs.
- Maintain your support system. Make sure you lean on your trusted friends or other family members. Please take some time to spend with them away from your home life. Take a breather for yourself.
- If you are beginning to feel emotionally irregulated, guilt, depressed, anxious, angry, using drugs or alcohol, please communicate with your parents. Let them know it would be in your best interest to seek professional help with a licensed mental health provider. I know this may be confusing for a teenager, and you may not know how to seek therapy, but GTS shares some insightful guidance with Five Easy Steps to Therapy at Gateway to Solutions.
There may be days where you feel overextended, or your parent may be challenging to cope with; try to be patient and listen to your tone. Your tone is a clear indicator of your stress level. Getting the care you need is signifies strength and good decision-making; it certainly is not a sign of weakness. Building these skills now will help you in the future in your journey of life.