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‘That Parent’ is a label I have worked hard to avoid. ‘That Parent’, you know, the one who’s considered too demanding, too noisy, too entitled, pushy, a pain in the ...  Not that I haven’t been her, not that I think it is bad to be her. In fact I think it is our job in fighting for our kids. The problem with being ‘That Parent’ is that providers write you off. You lose credibility. This is why I work so hard to see every side of a discussion, to really hear what is being said and where it is coming from.

Last weekend I went to hear Thomas E. Reynolds speak. He is a theologian with a special needs son. He wrote Vulnerable Communion: A Theology of Disability and Hospitality. Mr. Reynolds was speaking on Community and inclusion. He was saying that hospitality is good, but that is often comes with the expectation that the outsider fit in. He proposed Compassionate Respect as a better way to include those that are often considered outsiders. In this way, we can accept people for who they are, respect them for their experiences and learn from them through true connection.

During the question and answer session, a question about power was raised. When you have special needs, or are the caretaker of someone with special needs, you have to fight for your power. Often you are expected to do as you are told. Often you are too tired to do anything else. But there are times that you do need to speak up and ask questions. This is where the ‘That Parent/Patient’ label comes in. We are exhausted, overwhelmed, sleep deprived and desperate. It is hard to have a calm rational conversation. It is easy to get defensive and angry. We are in a different world from the people we’re trying to talk to. There can be major communication breakdowns.

When I heard the term Compassionate Respect, something clicked. Wow, what a powerful concept. Unconsciously, this is how we try to interact with all the amazing people who have helped us with our son ‘Buddy’. Somehow, it felt as if Mr. Reynolds named our actions and gave them a more solid form.  I know these doctors, nurses, dieticians, therapists, teachers, etc. are in their field to help. They have hard jobs and they give so much of themselves to so many. It can be exhausting work. It is so easy when exhausted to forget that the other person may be as well.

Compassionate Respect, it had such a substantial feel. When I think of all the people who have had a major impact on our lives, I see Compassionate Respect in action. When I think of my biggest fights for Buddy’s care and needs, the successes have been because of Compassionate Respect on our part and the part of the provider. The thing about Compassionate Respect is that it has the power to draw itself out in others. It sets a tone to conversations that is very productive.

I could not resist the urge to talk with Mr. Reynolds after his speech. I told him how the discussion struck me. I told him that this is how I approach all of my son’s providers. He looked at me and said: “Wow, that is a lot of work.” I couldn’t stop myself, I started crying. He was right. It is a lot of work. There are times that I have to take a deep breath and dig deep. But I do it. I do it because I know the providers need to be seen and appreciated. I do it because I need not to be angry. I do it because it is better for ‘Buddy.’ The answers are fuller and richer when we work together, and ‘Buddy’ needs to know how to be Compassionately Respectful himself.



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