AMH: How do you begin to work with these families? There must be such a sense of loss and tragedy in their lives.
MGK: My first goal is to understand what it is like to have a child with developmental disability, not just for the parents but for the siblings, too. I strive to understand what the parents want for their child and how they see themselves as a family. I see us, the health care team, as agents to help the child and the family be the very best they can be.
AMH: How do you deal with parents who are not be on the same page?
MGK: It is important that parents are consistent and are able to work together. Even if they are divorced, I have seen families able to unite around the care of their child with a disability. This is quite an achievement given the high rates of divorce – although most of the families that I have worked with are intact. As in all families, each member has a role in helping the family function well. It means using the strength of each parent to help them become a parenting team.
AMH: What if the parents have unrealistic expectations of their child?
MGK: Yes, there are parents who come to us with unrealistic expectations, such as believing their nonverbal child will talk some day. In such a case, we must be certain that we have exhausted all methods to help this child communicate, and once we have done all we can, then we must accept where that child is; to accept and help the family accept, the child’s weaknesses and acknowledge their strengths. Change what you can and be a support for everything else.
AMH: I find it hard to imagine caring for a severely disabled child. How do these parents do this?
MGK: These are children who are nonverbal, and children who can be very fragile, even medically. What I see are parents who want to connect, who want to find that something inside that child, that special place where there is connection. That place of reciprocity. That is important to us all, helping the family find that place of reciprocal connection.
AMH: What language do you use to discuss this with families?
MGK: I say, “This is the child’s strength and this is the child’s weakness; capitalize on the strengths and let’s shore up their weaknesses.”
AMH: How do you approach the families? Where do you start?
MGK: I meet the family where they are. One cannot with these families or any families stand rigidly 10 feet away, and demand that they change. This never works, and we will be of no help to them. We must understand the family system and how they have arrived at their current place of functioning.
AMH: Can you give an example?
MGK: Yes, for example if a parent is drinking excessively, I help them understand why they are coping that way and see if they are willing to change.