Speaking out for People with
 Intellectual and Developmental Disabilities

Carsten’s journey to Sonoma Developmental Center

By Ana Mettler

About the author: Ms. Mettler is Carsten's mother. She tells the story of her son's long journey to Sonoma Developmental Center in Northern California. His journey involves a very successful "inclusive" educational experience to a sad saga of one failed group home placement after another, including several incarcerations. This long journey led Carsten to Sonoma, where it seems he is now on the road to happiness.

I have always been a fervent advocate of the concept of “Inclusion.”

When my son Carsten was middle school age I became very active towards having him included inCarstens_Story the same (very unique) school my other two children were attending. I felt that as a family it was important to share the same school experience.

It took a lot of convincing and sharing of information about the benefits of inclusion, but finally it became a reality. Carsten spent many fabulous years at this school, the “Open School.” He participated in trips to New Mexico and Mississippi, he took yoga classes, art classes, music, woodworking, cooking, etc. He apprenticed in the school cafeteria and then he worked in a city cafeteria, independently taking the public bus. 

In the year he was graduating, however, Carsten started to experience an increasing number of outbursts. Life with him at home became precarious and barely manageable for me.

Since his dad, Charles, was already living in California at that time, we felt it would be a great opportunity for Carsten to live with his father and attend the wonderful Vine Village program in Napa. The first year was a success. Carsten created many beautiful pieces of art and was very happy. Then his episodes began to increase again. His lost his place in Vine Village and a new living situation had to be found.

From there on a rather sad saga began from group home to group home. Although in every group home and day program there would be someone who would have a deeply caring relationship with Carsten, it must be said that no one was truly trained in how to support him when he had his intense outbursts.

Most staff simply applied whatever method of containment seemed to work for them. Some threw themselves with their full weight upon him, some held him as tightly as possible, always struggling and most of the time threatening Carsten with jail or institutionalizing him and reproaching him about his “bad” behavior. 

Many staff members themselves were struggling with emotional and mental issues and with minimum wage living conditions. Carsten, used and capable to doing many things and loving to work, would often sit for hours without anyone involving him in meaningful activities.

Being bored used to be the worst punishment for him. There was never a team work or any kind of consistent approach to support Carsten emotionally, psychologically, psychiatrically and physically. We privately paid a psychiatrist who had been recommended to us. Unfortunately Carsten’s episodes continued to increase in intensity and frequency. He was taken in handcuffs to a crisis center in the middle of the night and from there to the next home. After a year and a half in a very neglectful place the owner provoked an incident in which Carsten was left unattended by his one-on-one and had an outburst during which he broke many things in his room. The owner, eager to get rid of Carsten, called the police and had him taken to jail.

Carsten cannot advocate for himself in the least. He speaks fairly little and cannot express his needs. He had no idea where he was and why he was in jail. It was a nightmare for him and us parents. After 14 days another home was found for him. This time we were lucky and he enjoyed a very caring staff. Unfortunately once again his outbursts were too intense to be manageable in the community. Finally he was placed at the SDC. By the time he arrived there he had fallen through the cracks many times over as far as his medication was concerned. With every move his meds were simply increased or switched and new ones added. He was completely  traumatized, overdrugged and had developed a tremor that you only see in the very advanced stages of Parkinson’s.

At first I had great concerns about Carsten being admitted to SDC. My notion of an institution, I confess, was very much influenced by the stereotype movies such as One Flew Over the Cuckoo’s Nest promote. This attitude changed rapidly as I got to meet staff. A teacher myself I could immediately sense the passion and professionalism that lives in the people who work here.

Carsten has been at SDC now for three years. Every day we have counted our blessings. His care has been outstanding. The teamwork is amazing between all the people who share the responsibility for his well-being. As his mysterious episodes continue, every possibility is explored in trying to find out the etiology of his condition and how to alleviate his problems.  There has never been an acceptance of the status quo (“He’ll just always be this way” – as we got to hear in previous settings) and the effort to support him in positive ways has never lessened. Here I can count on the psychologist to work with the staff and with the psychiatrist. No change in Carsten’s body or mind goes unnoticed.

The first goal at SDC was to slowly wean Carsten off these mind numbing medications. We were purely lucky that the tremors were still reversible. There had been no guarantee that they would vanish in spite of tapering the medication. Gradually Carsten regained his old self that is funny, witty and very social. He is still wary of leaving the house he lives in for fear that having an outburst might end him up in jail again. We as parents have also had time to slowly heal from the constant fear for Carsten: fear that he would be thrown into jail again, fear that he would be mistreated, misunderstood, neglected, abused.

There is much hope here at SDC. Carsten has not even begun to truly take advantage of all the opportunities open to him here at SDC. In his “previous” life at home Carsten was an avid gardener, cook, custodian, artist, woodworker, landscaper, farmer, courier and much more.  I am looking forward to a time when he will feel safe enough again to roam freely through SDC on a hundred meaningful missions. I will know that here he is well-protected, safe, and yet free to live as independently as possible. I am dreaming of the farmland that was once available here for the clients to be used again and for Carsten to be the master composter. Imagine healthy food grown locally, organically and by your own hands. That would be true happiness for Carsten, for us, his parents, and I am sure for many of those who live and work at SDC.