Being the parent of a child with a disability carries with it unique responsibilities, stressors, and rewards. It requires an extra dose of emotional resilience, perseverance, and resourcefulness. Powered by the same (or an even stronger) drive to nurture, protect, and empower their children as parents of kids perceived as normatively abled, parents of children with physical, intellectual, or developmental disabilities such as autism spectrum issues, spina bifida, or Down syndrome often face profound social and systemic prejudices. These “invisible” obstacles can be all the more agonizing when they are unacknowledged.
The Global Partnership for Education notes “children with disabilities remain the most excluded group [when it comes to educational opportunities], discriminated not only because of their disability but also because of lack of understanding and knowledge about its causes, implications, and stigma.” Even parents seeking to support their child with attention-deficit hyperactivity (ADHD) or physical conditions such as blindness or mobility issues can find themselves overwhelmed by the challenges of getting proper testing or access to a restroom or play space. When a child’s disability dovetails with preexisting societal or cultural prejudices related to gender, race, religious affiliation, or sexual identity, the challenges intensify, with an impact on parents that peers, colleagues, and others may not fully comprehend or appreciate.
As parents of children with disabilities proactively seek information and support and advocate for their children, they may discover frustrating limitations that reinforce a sense of isolation or exclusion and stoke emotions such as grief or anger. As a result of these and other factors, parents seeking support for their special needs children have special needs of their own when it comes to self-care.
Here are some key ways parents of children with disabilities can make self-care a priority:
1. Get support.
- Community support: Find others in your community with whom you feel accepted, celebrated, upheld, and safe. This could mean taking a class that interests you, strengthening your commitment to your faith community, or joining a book club.
- Professional support: Find an individual therapist or coach who can help you work through specific challenges and issues; soothe, manage, and reduce your fears and anxieties; and provide a space for you to grieve, rejoice, or process anger. If you struggle with speaking up for yourself or your child, you may want to focus some of your energies on learning how to be a more vocal and effective advocate.
- Peer mentoring/group support: Look for support groups, in person or online, where you can interface with others who are struggling with similar issues, or whose children are also facing challenges. This can serve multiple functions: it can help you feel supported and connected, it can provide relief as you share your difficulties with others who understand and relate to what you’re going through, and it can help you access important information and resources related to ways others have dealt with and approached similar situations.
Parents of children with disabilities face added pressures and need to acknowledge their limitations and find ways to slow down, let go, and relax control, giving their nervous systems a much-needed rest.
2. Find time to do the things you love.
As the parent of a child with a disability, you likely expend tremendous energy trying to make sure your child has the privileges and opportunities available to other children. When your child’s disability is long-term or involves being vigilant about basic safety needs, the strain can take a toll on your well-being unless you are disciplined about your self-care.
Finding ways to recharge, relax, and experience pleasure in your life is essential. The more balanced, relaxed, and recharged you are, the more patient, caring, and proactive you can be as your child’s protector, nurturer, and advocate. Start with making a list of “Fun Things I Would Do If I Had Time.” You might include activities like going for a bike ride, going to dinner with a friend or partner, painting or journaling, watching a movie, getting a massage, taking a walk outdoors, or going to the gym.
3. Seek and take advantage of respite care services in your city or state.
Some parents of children with disabilities avoid taking advantage of respite care services for their children or feel pressured to “do it all on their own.” They may be anxious about their children not receiving proper or attuned care, or they may feel guilty about needing a break. In fact, allowing yourself and your child to be supported by trained caregivers can offer both of you a positive “time out” from each other, allowing you to hit the figurative reset button. It can help you replenish your emotional resources so you can be stronger and more resilient in your parenting.
Meditation can help you slow down, be in the present moment, and let go of trying to fix or control external circumstances, even if only for 5 to 10 minutes a day. There are multiple phone apps available with free or low-fee audio recordings of brief, guided meditations you can do between tasks, while you’re waiting in line at the store, or when you’re taking a bathroom break. These apps have reminders that encourage you to take a few moments out of your day and check in with yourself.
Everyone needs practice letting go of endlessly regenerating thoughts, beliefs, fear-based stories, and regrets in the interest of simply accepting life as it is right now. Parents of children with disabilities face added pressures and need to acknowledge their limitations and find ways to slow down, let go, and relax control, giving their nervous systems a much-needed rest.
In addition to experiencing high levels of chronic stress, anxiety, and depression, parents of children with disabilities are faced with the heartbreaking limitations that exist in a world where not all children are included, considered, and prioritized in the same ways. As you work to confront and overcome these limitations and to secure services, treatments, opportunities, and access for your child that will help them develop and thrive, it’s easy to ignore or minimize your needs. Far from being a self-indulgent luxury, your self-care is a critical necessity.
- Children with disabilities. (2017). Retrieved from http://www.globalpartnership.org/focus-areas/children-with-disabilities
- Self-care for parents and caregivers of children with a disability. (2017). Retrieved from https://www.kidcentraltn.com/article/self-care-for-parents-and-caregivers-of-children-with-a-disability
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