In a demanding world of parenting children with disabilities, self-care often takes a back seat. There exists an evolving sun and moon around the home, where unfaltering devotion and love drives parents to complete a ‘to do’ list. The fact that self-care falls short in a daily agenda is not surprising. In 2006, a report by Murphy, Christian, Caplin, and Young states caregivers overlook their own health due to several barriers. This includes lack of time, respite hours, and qualified alternative care providers^[1].

There are no boundaries in the care parents give their children, and yet the care parents give themselves often falls short or not at all. A 2016 Partners for A Greater Voice (PGV) parent survey found that 44% of caregivers of children with hearing disabilities had no time to care for themselves. The survey also found that over 41% of parents have high degrees or extremely high degrees of stress in their lives when caring for their children. Another 35% said they have moderate degrees of stress^[2]. Parents may exert boundless energy in search of ways to support their children’s individual physical, emotional, and cognitive needs. The crest of parenting attention is often reserved for the family instead of the parent.

As a parent of a child with disability, can you add self-care to your ‘to do’ list? Is 15 or 30 minutes of ‘time out’ each day attainable for you? I would have to argue an undeniable ’yes’! Your mind, body, and heart matter when it comes to effective parenting. These three parts of you need nurturing to more successfully (and happily) engage and attend to the needs of your child and family. Exercise, meditation, yoga, sleep, and good eating habits are some of the activities to consider. They help reduce stress and blood pressure, and can also improve productivity. In the survey PGV completed in 2016, reading a book and talking with a friend are other options parents choose for self-care. Find time to do something you love!

For many parents, however, we tell ourselves that we cannot spare that precious time. I know this well, since I have raised two children with hearing loss, retinitis pigmentosa, learning, and attentional needs. I am there, running in all directions, tripping over toys on the floor, trying not to burn a pot of boiling pasta, while thinking about the upcoming special education meeting, scheduling medical appointments, and worrying where the money will come from to buy assistive technologies. My mind races with responsibilities to support my children’s learning, manage our home, cope with healthcare, and prepare myself for work. Dare I say my body aches? Dare I say sleep is restless? Naps? Forget about it! Our minds are likely stuck in overdrive because the ‘to do’ list for our children is long and often controls our lives. Needs of family, health, education, and disability care can hold us prisoner.

Parenting demands a certain emotional preparedness to ensure children are ready for their futures and their ever-evolving development. This is one reason why I became involved with a parent network. I connect with like-minded parents of children with disabilities because they support me emotionally. I relish in the joy of listening, learning, and growing with others that share in the journey of my children’s education, medical care, and accommodations. I relish in the stories that portray challenges and how parents overcome them. Their mainstream or hospital experiences can easily be mine, and sometimes they are. We cry together and prop each other up. Yet, parents give me hope and the emotional support that is essential in how I learn to cope. Self-care is a coping strategy. Learning to cope in healthy ways must include self-compassion that prepares me for the best possible parenting.

Enter the value of other social time to nurture my mind and learning. Thank goodness for audiologists, teachers, doctors, and even the cashier at the check-out counter! Adult conversations give me a breath of fresh air from the constant language I delve out to my kids. The social supports I encounter lighten my burden of grief that causes uncertainty or confusion about my children’s needs. The breadth of knowledge of practitioners gives me confidence! Their experiences and perspectives have helped me to help my children. I am happier, healthier, and have a clear mind about the choices I make.

Caring for my body and mind are also important. Yoga, walks, and meditation can help to release a stressed and tense body, calm my chattering mind, and ground me with clear intentions. Research shows how meditation reduces stress, improves productivity, and stimulates mindfulness. Whether I am waiting for the bus, cleaning dishes, or shopping for groceries, I remind myself that these are opportunities to enjoy. To be mindfully aware of them slows the incessant thoughts and worry about the future. I can enjoy the sensory experiences of color, design, smells, and sounds wherever I am. These mindful moments ground me in the present, and it makes chores more enjoyable.

There are also simple activities I weave throughout a day: taking several long breaths while at the sink, closing eyes to absorb the sun’s rays on my face, rolling my shoulders. Below are other rituals that work for me. What works for you?

• Every day, I slowly emerge from the warmth of my bed and do these two things: I thank God for a new day and say a prayer of appreciation. I practice mindfulness as I prepare tea or coffee, empty the dishwasher, and fold clothes.
• I meditate for 10 or 15 minutes a few times each week. It begins by feeling my breath move in and out the nose. I notice how inhales inflate my body and how exhales empty and relax my body. I scan the tension in my body and relax my face, legs, arms, and shoulders. I observe my thoughts that come and go from my scattered and busy mind, and settle into stillness until I see them more clearly.
• I get outside with nature! Sometimes I bring nature into my house (flowers, leaves, pretty rocks). I listen to birds. I smell the splendor of grasses and trees. I absorb nature’s boundless energy and beauty which offers pleasure and peace.
• I drink lots of water and am mindful of what I eat. There are a lot of toxins, preservatives, and junk food tempting my brain to overindulge. I partake in fruits, vegetables, lean meats, healthy grains, and nuts. It takes will power to resist the urge for a cookie. (Okay, maybe an occasional ice cream cone is deserving!)
• I found yoga, or I should say yoga found me. Whether 10 minutes or 60 minutes, a daily practice helps me be in the moment, and the stretches and shapes my body creates release tension. I have come to learn its many benefits on the mind, the inner awakening of my spirit, and its peaceful effects that I carry with me throughout the day.

The journey of parenting two children with disabilities is enriched when self-care is on my ‘to do’ list. My health and happiness have become positive enforcers of a life I choose to lead and a life I want my children to have. I parent more effectively. I love more intently. I appreciate more often. I feel a certain freedom in my heart, a burden lifted from my shoulders, and a knowing that things turn out better for my children when I give myself permission to take a time out.

[1] Murphy, Christian, Caplin, Young, The health of caregivers for children with disabilities: Caregiver perspectives, Pub Med, 2006.

[2] Partners for A Greater Voice, Inc. Parent Education Survey, 2016

written by Joanne Travers, Founder/Director of Parents for A Greater Voice, Inc.

Information from this article should be cited/referenced as: “Partners for A Greater Voice, Inc. Content derived from Essential Programs to Coach and Empower (2016). Ipswich, Massachusetts U.S.A. www.greatervoice.com”