Early in my career as Ben’s mom, there were some situations where I was adversarial in my responses and reactions to circumstances where I thought Ben’s needs were not being met. With guns loaded, ready to fire, I would take out anyone who I thought might not be giving Ben the best possible care. Instead of making the situation more positive, I may have alienated the people who could really help me.
I realize now that almost everyone wants to provide the best they can for Ben or any other child that has a special need. Like with anything that is sensitive and very personal, misunderstandings happen easily and can add to an already emotionally charged issue. The parents have emotions about what they expect for their child and others have emotions about the unknown. Fear, uncertainty, worry are all floating just beneath the conversations you may have when you are asking for assistance for your child.
Being an advocate means partnering with others, building relationships and being aware of the underlying emotional obstacles everyone, including yourself, may have. It also means taking initiative, doing a large share of the work and showing your appreciation over and over.
Assume the people around your child want to help, are knowledgeable and can offer their own ideas based on experiences they have had. Sometimes change may happen slowly, but that could mean you have more people on board, the action is the right one and everyone feels good about what has been done.