President’s Message April 2015

Note; The following guest blog is a personal letter published by the Parent Hospital Association of the Sonoma Developmental Center written by the Association’s President Kathleen Miller.

INTRODUCTION- Clearly Sonoma Developmental Center along with Fairview Developmental Center is under attack. Both Assemblymember Grove and Senator Jeff Stone have crafted legislation to close both centers suggesting closure be completed by December 2018. Their complete disregard for the welfare of the residents of SDC is clear. Further, they suggest the money created by the savings and selling off the land to the developer with the most cash, can save the starved community care system. They pit the developmental centers against community settings and ignore the fact that to close the centers costs millions and will not create funds to help those in community settings. Frankly, if they really cared about community care why not create a bill to better fund it instead of destroying the safety net of the system?

However I wanted to share something more personal. I wanted to shed light on the fact that even in the darkest times there is reason to hope. Often it is our beloved family members who reside at SDC who can show us the way to finding that hope.

A Question of Faith

Father Chesterman, whose son is a resident of Sonoma Developmental Center, talks about the importance to him of having his son attend religious services there. In the past it was not an issue I had given much thought. I have to confess that I am not a believer and don’t subscribe to any religion. I admit to occasionally feeling smug about the fact that tolerance seems somewhat simpler to some of us who have no faith, than for others who profess to believe in a specific religion.

My feelings were changed by getting to know Father Leslie. He is the Priest who worked at Sonoma Developmental Center, and I met him when I worked there as a social worker. He has for many years spent his days holding services for the residents. He got to know them personally and I know they looked forward to his visits. I got to know him when I worked with him to hold memorial services for those who died. He would always ask us for our stories about the individual helping us to remember them but at the same time to deal with the loss of one more beloved resident. He never judged.  He was handsome and had a soft Irish brogue and I have no doubt he could have risen up the ranks of the church, but he chose to work with the disabled who live at SDC.

My son Dan lives on Malone at SDC. He does better when he is kept engaged, it helps offset a tendency he has to self isolate. Because I knew Father Leslie, and because Sunday at SDC is such a quiet day I decided to ask that Dan attend Sunday services with Father Leslie. Beyond Dan sharing with me that he went to church to see the good Father we never discussed it and I did not give it much thought.

Last October tragedy struck our family. My ex husband, my children’s father committed suicide. His sudden violent death has had a major impact on my lovely daughter and two granddaughters. The effect of his sudden death ripples throughout all of our lives in ways we do not fully understand and the pain he left in his wake can hit us when we least expect.  One of the major concerns was if and how to tell Dan. My first reaction was not to tell him. His life was difficult enough without this added loss.

It was The SDC staff who helped me realize that I must tell him. We were coming up on the holidays, and my ex husband had always been a part of our holiday celebrations. I knew Dan would miss him. I dreaded the moment when I would be forced to share with him that his father was gone.

I told him one day when we were walking the beautiful SDC grounds. I simply told him his dad was dead and he would never be able to see him again. Dan’s response both shocked and humbled me.  First he asked if his dad had gone to heaven.  He immediately followed with the question if his dad had been a good man. Dan is a guy who lives in the moment. When I shared this story with staff I am certain there are those who doubted me. I never expected him to embrace the idea that there is a heaven and that is where the good go when they die. I have no idea how he came to the idea. What is clear, however, is that is what he believes. I have since checked in with him to understand if Dan knew what he meant. I learned again that he believes in heaven and he feels it is only available to those who are good. That is his belief-period.

I am now reminded of my work with the SDC residents who are medical. I know they can not speak and are very limited in their lives as we know them. But I know them to have distinct personalities and ways that they communicate them. They get to know staff and love them. They have favored staff and I recall Jon who would not eat except for staff he knew and trusted. I recall Susan and Kimberly who compete for staff attention. Some might say these individuals are not really there, they do not matter. I am here to tell you they do know when staff care and come to work to see them. They live for the small things, the chocolate pudding, the music in their music group, the kind words and touches from known and trusted staff. I could be late, and not see them for days, but they were always happy to see me. They would have a giant smile on their face when I came into the room.

They constantly suffer loss. They get attached to caring staff only to see them mysteriously leave and be replaced by new staff, on which their very existence depends. Nonetheless, they are those who have hope in their hearts and smiles on their face. I consider it an honor to advocate for them and the behavioral residents of SDC. Truly, I am not worthy.  I will do my best to protect them and ensure that they have some quality of life.

This is real life. I am still a somewhat cynical nonbeliever. There are many in Sacramento who I do not trust and feel are motivated only by money or political gains.  But I know the SDC residents who are better than me at living in the moment and looking for the good in life.  They keep me motivated. Recently I took a walk on the lovely grounds of SDC. My son asked me if he was a good person and would go to heaven. My heart aches because I do not believe. But  I do  know if there was a heaven that my former SDC clients would be there to welcome him. He struggles every day against severe autism and the dark ravages of mental illness to be the best possible person he can be. He sustains me in my dark times and inspires me to be my best self. He is my spiritual guide.