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.
While most parents will say that their child has brought tremendous joy to their lives, it is no secret that the responsibility of having a child with a disability is way beyond the normal stresses of everyday life.
Over the years, I have had the privilege of speaking to many parents. Overwhelmed, exhausted, isolated, afraid, anxious, worried, sad, stressed, upset, angry, frustrated, drained, weakened and shattered are but a few emotions that parents say the experience each and every day.
There are options which provide families with a short break such home support and respite programs however the funding for these programs is relatively minimal compared to the number of hours that parents devote to the care of their child.
Lack of sleep, frequent visits to the doctor or hospital, interrupted careers, strained relationships, dropped friendships, and financial pressure are all examples of the constant and non-stop stress that a family goes through.
Not to mention the attitudinal barriers that families encounter in places at school, the playground, the hospital, the restaurant, the sports team and the list goes on.
Furthermore, parents are not very good at asking for help. 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 “For some reason we attach judgment to receiving help.” I know that my husband and I were reluctant to receive help when it was initially offered and yet looking back, there was absolutely no way we could have done it without the support from our family, friends and funded assistance.
We are informed about the destructive effects on our health from sleep deprivation, chronic stress and secondary traumatic stress disorder as it relates to people on shift work and professional caregivers however we do not ever hear about the devastating effects on families that have a child with a disability.
The Mayo Clinic explains that the long-term effects of chronic stress can disrupt almost all your body’s processes. This increases the risk of many health problems, including, anxiety, depression, digestive problems, headaches, heart disease, sleep problems, weight gain and memory and concentration impairment.
What can be done to preserve the mental health of families that have a child with a disability?
There are many suggestions for families like exercise, joining a support group, taking time for yourself, recognizing that you’re not alone, learning more about the disability, seek counselling and so on, however there is not a lot about how others can take action.
I remember when the Director of Eric’s preschool expressed her concerned for me when he would be sick and not able to attend. She realized that her staff could assist one another on the days that he was at school however she recognized how challenging it was for me on my own 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 it was extremely helpful to me and to my mental health.
Another time, a nurse who came to our house once a week took a chance and contacted a local funding administrator and voiced that she was very concerned about us and that we should have more help in our home. By doing so, she put her own job in jeopardy however she felt that expressing her concern for our mental health was more important.
It will take a long time for governments and human services systems to transform. As a matter of fact, families say that its dealing with these systems that can cause the most stress.
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
It’s the small gestures that are helpful and you can make a difference.