The mental health of families with a child with a disability: 10 things that make a difference

There is a lot of information and activities designed to increase awareness and understanding of mental health problems and to reduce the stigma that often accompanies 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 each individual is aware of his or her own potential, can cope with the normal stresses of life, can work productively and fruitful, and is able to make a contribution to his community.

Your mental health is affected by numerous factors in your daily life, including the stress of balancing work with your health and relationships.” (Canadian Mental Health Association)

While most parents will say their child has brought great joy into their lives, it’s no secret that the responsibility of having a child with a disability goes far beyond the normal stresses of everyday life.

Over the years, I have had the privilege of speaking with many parents. Overwhelmed, exhausted, isolated, scared, anxious, worried, sad, stressed, upset, angry, frustrated, exhausted, debilitated and broken are just some of the emotions that parents experience every day.

There are options that give families a short break, such as in-home support and respite programs; however, funding for these programs is relatively minimal compared to the number of hours parents spend caring for their children.

Lack of sleep, frequent visits to the doctor or hospital, interrupted careers, strained relationships, lost friendships, and financial pressure are examples of the constant and ongoing stress that a family goes through.

Not to mention the attitudinal barriers families encounter in places like school, playground, hospital, restaurant, sports team, and the list goes on.

Also, parents are not very good at asking for help. In his book, greatly daring, Dr Brene Brown he states that “going alone is a value that we hold in high esteem in our culture”. He also states that “For some reason, we attached the judgment to receiving help.” I know that my husband and I were reluctant to receive help when it was initially offered, yet looking back, there was absolutely no way we could have done it without the support of our family, friends, and financial assistance.

We are aware of the destructive effects on our health of sleep deprivation, chronic stress, and secondary traumatic stress disorder in relation to shift workers and professional caregivers; however, we never hear about the devastating effects on families who have a child with a disability.

The Mayo Clinic explains that the long-term effects of chronic stress can disrupt nearly every process in your body. This increases the risk of many health problems, including anxiety, depression, digestive problems, headaches, heart disease, sleep problems, weight gain, and memory and concentration problems.

What can be done to preserve the mental health of families who have a child with a disability?

There are many suggestions for families, such as exercising, joining a support group, taking time for yourself, acknowledging that you are not alone, learning more about the disability, seeking counseling, etc. However, there is not much on how others can take values.

I remember when the director of Eric’s preschool expressed her concern for me when he was sick and couldn’t attend. She realized that his staff could help each other on the days he was at school, however, she recognized how difficult it was for me alone when he was home. He wrote a letter to our local government office to request that the funds provided for his support at school be flexible so that if I was too sick to attend, the staff member could come to our home and assist me. This was approved and was extremely helpful for me and my mental health.

On another occasion, a nurse who came to our home once a week took a chance and contacted a local fund manager and expressed that she was very concerned about us and that we should have more help in our home. In doing so, she jeopardized her own job, however, she felt that expressing her concern for our mental health was more important.

It will take a long time for governments and human service systems to transform. In fact, families say it’s dealing with these systems that can cause the most stress.

Here are 10 things you can do:

• Find a way to truly understand the family perspective
• Communicate in a way that is welcoming and friendly.
• Put aside your own prejudices and act without judging
• Think differently, beyond the status quo
• Take action and try something new
• Putting families ahead of rules and regulations
• Ensuring 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 tired or unaffected
• Be sincere, genuine, real and authentic.

It is the small gestures that help and can make a difference.