The 10 Things That Matter for the Mental Health of Families with a Disabled Child
There is a wealth of knowledge and initiatives aimed at lowering the stigma that frequently surrounds mental health issues and raising awareness of them.
What about the mental health of families who have a child with a disability?
According to the World Health Organization (WHO), mental health is defined as “a state of well-being in which every individual realizes his or her own potential, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to her or his community.
There are many aspects of your daily life that have an impact on your mental health, such as the strain of juggling work with your relationships and health.” (Canadian Mental Health Association)
While the majority of parents will affirm that their child has brought them great joy, it is well known that having a child with a disability entails responsibilities that go far beyond the typical stresses of daily life.
I’ve had the honor of speaking with many parents over the years. Parents report feeling a variety of emotions every day, including overwhelm, exhaustion, loneliness, fear, anxiety, worry, sadness, stress, upset, anger, and frustration.
There are options that give families a brief break, such as home support and respite programs; however, the funding for these programs is comparatively small compared to the number of hours that parents devote to caring for their child.
Examples of the constant and non-stop stress that a family experiences include lack of sleep, frequent trips to the doctor or hospital, interrupted careers, strained relationships, lost friendships, and financial pressure.
Not to mention the psychological obstacles that families face in a variety of settings, including the workplace, the playground, the hospital, the restaurant, the sports team, and so on.
On top of that, parents struggle to ask for assistance. In her book, Daring Greatly, Dr. Brené Brown states that “going it alone is a value we hold in high esteem in our culture.” She also states that “We tend to judge people who seek assistance for some reason.” I am aware that my husband and I initially resisted receiving assistance, but looking back, there is no way that we could have succeeded without the help of our loved ones, friends, and financial support.
We are informed about the harmful effects of sleep deprivation, ongoing stress, and secondary traumatic stress disorder on our health as they relate to shift workers and professional caregivers, but we never learn about the disastrous effects on families who have a child with a disability.
The long-term effects of persistent stress, according to the Mayo Clinic, can interfere with virtually every bodily function. Numerous health issues, such as anxiety, depression, digestive issues, headaches, heart disease, sleep issues, weight gain, and memory and concentration problems are all made more likely as a result.
What steps can be taken to protect the mental health of families who have children with disabilities?
There are many recommendations for families, such as getting exercise, joining a support group, taking time for yourself, realizing that you’re not alone, learning more about the disability, seeking counseling, and so forth, but there isn’t much information on what other people can do.
When Eric was going to be sick and unable to go to preschool, the director of that facility expressed concern for me. On days when he was at school, she realized that her staff could help one another, but she also understood how difficult it was for me to handle things alone when he was home. She wrote a letter to our local government office to request that the funding provided for his support at school be flexible so that if he was too ill to attend, the staff person could come to our home and provide assistance to me. This was approved and was very beneficial to me and my mental health.
Another time, a nurse who visited us once per week decided to take a chance and get in touch with the local funding administrator to express her deep concern for us and her belief that we needed more assistance at home. She risked losing her job in the process, but she decided it was more important to show her concern for our mental health than her own.
Governments and human services systems need a lot of time to change. Families say that dealing with these systems can actually be the most stressful part of life.
Here are 10 things that you can do:
- Find a way to truly understand the family perspective
- Communicate in a manner that is welcoming and friendly
- Put aside your own bias and act without judgment
- Think differently, beyond the status quo
- Take action and try something new
- Put families ahead of rules and regulations
- Ensure that families are a priority in policy development
- Include families as equal partners in decision-making and program development
- Take a break when you are fatigued or feel unaffected
- Be sincere, genuine, real and authentic
You can change things by making even the smallest of gestures.