Parents of children with disabilities know what it's like to be exhausted and burnt out. We can be so overwhelmed with our child's care and well being, we forget to care for ourselves. However, by ignoring our own physical, mental, emotional, and spiritual well-being we can struggle to be the loving parent and caregiver our child needs. We need to find ways to lighten our load so we can not only survive, but hopefully thrive in our vocation as a special needs parent.
First, we must recognize that much of our stress comes from a world not designed to accommodate our children or the unique needs of our family. But dismantling the systems that create hardships will not happen overnight. In the mean time, let's focus on what we can control and how you can personally make small changes in your life to help reduce burnout right now.
What do you think of when you hear the term "self-care"? Oxford dictionary defines self-care as:
the practice of taking action to preserve or improve one's own health. "autonomy in self-care and insulin administration"
the practice of taking an active role in protecting one's own well-being and happiness, in particular during periods of stress. "expressing oneself is an essential form of self-care"
Self-care doesn't mean luxury, indulgence, or pampering. At its core, practicing self-care means the preservation and protection of our health, which is the very same things we’re trying to do for our kids.
The first step in practicing self-care is accepting your limitations as a parent, and a person, and admitting you need help to be the best version of yourself Next, I suggest taking a self care inventory. Nothing on it is unreasonable, even for the caregiver of a child with disabilities. Once you’ve completed the inventory, study your answers and pick one area where you want to focus your efforts first for just five minutes a day.
Self-care is not self-indulgence and sometimes even means doing things we don’t like to do to meet our basic needs (like visiting the doctor for a mammogram). If the idea of practicing self-care, for even five minutes, is challenging for you, start by seeing where you can better meet your basic needs. Look for the things that you make sure your spouse or children receive on a regular basis, but that you often deny yourself (ample time for sleep, regular check ups, meals they enjoy, new clothes when their old ones no longer fit or become worn, etc.)
Obviously there will be times when you and your family are in survival mode, like during an emergency admission, but that’s why its so important to care for yourself the rest of the the time, so when a crisis arises you have the strength to meet it without becoming sick or overwhelmed.
As you look for ways to care for yourself, remember to make time for God. Take five minutes of prayer, more if you can manage, and keep a steady dialogue going. Those little prayers of thank you, or asking for help, all add up and add grace to your day.
To get your five minutes to meet your basic needs you will need help. Be it your disabled child’s older siblings, your spouse, extended family or friends - you will need to ask for help to care for yourself. We can’t do it all alone. You will need to start learning to find and accept help. Accepting help in order to better care for ourselves and prevent burnout can be a big hurdle to overcome for some parents. And it certainly will take more work up front. However, with your own support network in place, you’re going to be able to better care for your disabled child, as well as your marriage, your other children, and other relationships in your lives. It might be time to see if other people can care for your child so you can take a break, or what else could you outsource; housework, yard work, cooking, shopping, driving your other kids to activities? If you gave up some of these activities what could you do for yourself?
It can be frustrating to watch our friends of typically developing children talk about their need for self-care and then watch them take a spa day with girlfriends; something we may never be able to do. However just because that is out of reach doesn't mean we can’t do anything for ourselves - like everything else, our life may look different, but that doesn’t mean it's bad or a life devoid of joy.
It also doesn’t mean we have a right to be bitter towards others, Negative feelings of envy, resentment, or anger will only contribute to feelings of burnout and hinder your efforts to ask for help. Our lives are hard, and cliched sayings will not help us feel better, but choosing everyday to root out negative thoughts and search for small examples of joy to be thankful for, while also making time for yourself, will help you have a more positive outlook. And let's be honest: these things will not completely erase the stress of caring for a disabled child, but they can help provide you with the strength and resolve to keep going
If you want more ideas on how to support your well being and happiness, you can check out our workbook Peace in the Margins: Self Care for Special Needs Moms. You can also join our Facebook support group to connect with other parents who understand your unique struggles. If you are unable to make the effort to help yourself, or have felt depressed and hopeless and your scores on the self-care assessment are low in all areas, please reach out to a mental health professional. This post is also available as a YouTube video.