Let’s face it. When you have a child diagnosed with a disability, your life is in disarray.
Every day, you ride that notorious emotional roller coaster, the one on which your feelings repeatedly seesaw, up and down and around.
One minute you’re happy, the next you are sad. Soon after, you feel happy and cheerful, only to quickly become angry and upset. As your journey continues, there is anticipation and excitement, rapidly neutralized by fear and disappointment. The continual and nonstop fluctuation of emotions is exhausting. Add lack of sleep to that mix, and you are cooked.
Interestingly, parents and caregivers say that their emotions are most affected, not by their child’s disability, but rather by the system that supports them. Whether it be health care, social services or education, a lack of understanding of a family perspective and the absence of family driven policies and practices, are actually the cause of a lot of stress and hardship. It’s quite the paradox.
As a result, parents plunge into the role of advocate. They share their stories and speak on behalf of their children as way to help others understand what they and their child needs to live a good life.
Advocacy is to educate and foster and understanding of a family point of view and encourage an honest and responsive relationship.
Unfortunately, the system is not flexible nor is it designed in a manner that does lead individualized solutions. Professionals may be restricted in what they can do and parents may become frustrated and upset. Consequently, conflict may arise and it can be difficult to resolve.
Whether you are a parent or a professional, your approach will make the difference. While it can be a challenge for parents to stay calm on this temperamental trek, it’s crucial to make every attempt to avoid anger or lashing out. I lost my cool once and it affected my relationships with some people for many years. Believe me, flying off the handle is not worth it in the long term.
For professionals, active listening, acknowledging the parent’s point of view and doing all that you can, is key to a positive outcome.
The resolution must be reciprocal and strives for mutual benefit.
Here are 11 guidelines for successful advocacy and problem solving:
- Do not blame or criticize
- Prepare in advance for what you want to say
- Be genuine and humble
- Protect the relationship
- Make every attempt to understand each other’s point of view
- Keep the discussion is about principle, and do not make it personal
- Have an open mind
- Brainstorm many ideas
- Use an agenda
- Serve beverages and snacks
- Work toward a win-win solution