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.
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