As a mother to a young child with a disability, not only am I learning new parenting skills, I am also learning how to be my son’s advocate so that he receives the right services and has access to opportunities so many of us take for granted. With a background in Social Work, I am familiar with the different entities that become involved with a family that has a child with a disability. I have served as an advocate for other families and assisted them with obtaining necessary services. However, when it comes to my own child, oftentimes those skills go right out the window. My emotions run high and I become extremely sensitive and sometimes aggressive. I enter situations with the expectations of being challenged, so the minute something doesn’t go well, I easily explode. Its like a switch. I’ve come to realize that this is not the most productive way to handle situations. I may end up getting what I want for my son, but it comes along with a lot of anger, grief, frustration and even some new enemies. These are not the examples I want to teach my son. The article, Advocate or Diplomat by Kathie Snow addresses some of these issues and explains the importance of diplomacy when achieving certain goals for your child. For example, a few weeks ago my family and I went to the circus at Barclays Center in Brooklyn. We went early to attend the pre-show where there were clowns, animals, a bouncy house and fun things for the kids to do. My son was still in his wheelchair and could not make it down the stairs to get to where all the activity was. When I inquired about an elevator, the usher told me there was no access to an elevator for the public. I asked him, “So how is my son supposed to get down there?” He simply replied, “He can’t.” I almost lost it! Why should my son not be able to enjoy the things other kids can enjoy just because he cannot navigate the stairs? I managed to control my anger and firmly told him that was not acceptable and that I wanted to speak to a manager. Thankfully the manager had more sense and sensitivity, and made it her business to get us down there to enjoy the festivities.
There is a fine line between effectively advocating for someone and engaging in negative confrontations, especially when it comes to someone you care deeply about. It is a skill I am currently working on so that my interactions with others do not turn into stressful events.