When I first decided to put my "plan" into action, I had no idea what I was doing. I had never worked for a non-profit, let alone established one. I didn't have a network. I didn't have any money. I had never developed a board before and I didn't know how to secure my nonprofit status. This is a case where ignorance truly was an asset, I had absolutely no fears or concerns about the journey I was about to start.
One of the first things I did was start a massive email campaign. I literally sent out thousands of emails to politicians, various support organizations, school districts, friends, activist, you name them, I sent them a message...or two. I was especially persistent in pursuing the colleges in the area. Silicon Valley is home to some of the finest universities in the world. With Santa Clara University, Stanford University and San Jose State University all within 45 minutes of my home, I was sure the resources in this region would be at the head of the pack when it came to this disability. I was to be sadly disappointed.
I began an email campaign with all three universities; emailing the various schools of education, medicine, psychology, occupation and speech therapy. It was an enlighting experience on many levels. I had no idea how little I knew about how universities operate. Though I attended San Jose State, I never really understood the nature of universities and "isolationism" that is part of the overall culture of these institutions. So my email campaign began, without a clue...
The main message in my introductory email was, I was a father looking for resources for my family and other families like mine. I asked if the universities were addressing the issue of the unusually high rates of autism in the valley. I asked if they had any classes for teachers or service providers of people with autism. I asked if there was anyone available that I could talk to about creating programs that link university resource directly to the autism community. The response were as different and varied as the schools themselves. These are three very different institutions; Stanford in a private university, Santa Clara is a Jesuit university and San Jose State University is part of the Cal State system.
I decided that approaching Stanford University should be the priority in my outreach to higher education. The Lucile Packard Children's Hospital at Stanford University is considered to be one of the best children's hospitals in the world. People refer to Stanford University as "The Harvard of the West". Stanford folks refer to Harvard as the "Stanford of the East". The university's overall reputation speaks for itself.
I sent numerous messages to Stanford University; from the school of education, to the medical school and all points between. I started sending emails in April and for the first several months, I got no response. One day in late August, I received an email from the Stanford School of Medicine's Child and Adolescent Psychiatry. The director of the department emailed me and told me that he would be glad to sit down with me and discuss my goal of creating community based resources for children with autism and their families. Of course, I was thrilled and feeling pretty full of myself at the time.First thing I did, I contacted my friend and compatriot Jim Fletcher. I asked Jim if he would join me in meeting with the staff at the Stanford School of Medicine. I thought having two parents there would create a better impression when trying to build support.
When Jim and I arrived, we met Dr. Carl Feinstein in the main lobby. After a brief formal introduction, we were escorted into a room with 9 or 10 other professionals from within the Child and Adolescent Psychiatry Department. There were clinical psychologist, speech therapist, psychiatrist and clinicians from a variety backgrounds and specialties. After round table introductions, I began to talk about my motivation for requesting their assistance and support. I talked about my fortuitous reunion with Fletch. I talked about the diagnostic experience and the need for better communication between public schools and the medical community. I talked about the frustration and hopelessness we feel as parents. Jim Fletcher talked about the struggles he and his wife encounter when trying to balance the recommendation of their doctors with the resources available through public schools and/or those resources allowable given their household budget. He also talked about the pressures and strains that are put upon marriages by this disability. All in all, we talked for about an hour while everyone took notes.
When the meeting was over, everyone said thank you and offered the obligatory, "if you ever need anything...". Prior to the meeting, Dr. Feinstein said he would be glad to assist us in working to develop some resources for children and families. This was the "lure" for us; having a distinguished and respected professional to advise us as we grew our project. As we left the meeting, Dr. Feinstein thanked us and invited us to "keep in touch". As soon as I returned home following our meeting, I sent emails to everyone who attended the meeting; thanking them for their time and letting them know that I would be following up with each of them in the near future.
Unfortunately, there would be no future contact between me, Fletch or the people at the Stanford School of Medicine's Child and Adolescent Psychiatry Department. After many months and dozens of follow up emails without a response, I experienced what alcoholics call "a moment of clarity". Could it be that we presented the perfect case study for the clinicians and doctors at the Child and Adolescent Psychiatry Department? What an opportunity! If your a psychiatrist and you want to know how this disability affects the family, not just the patient, what an opportunity!...and we just walked in the door; no calls, no focus groups, no recruiting. The realization of what happened came to me in waves. After all is said and done, you don't want to believe you were off base in your "assumptions" about someone's desire to help you through a crisis. You want to believe that these folks understood and cared about your concerns. You want to believe that they also see the need for collaboration and resources for families and children, so you dismiss the obvious. The fact is, these folks, like other professionals are focused on their priorities, not ours. Though it may have felt like it, they weren't taking advantage of me and Fletch. They were trying to understand us parents, if only within the context of their interaction with other parents. Even understanding this, the experience left me with that cold metallic clinician's taste in my mouth.
One of the first things I did was start a massive email campaign. I literally sent out thousands of emails to politicians, various support organizations, school districts, friends, activist, you name them, I sent them a message...or two. I was especially persistent in pursuing the colleges in the area. Silicon Valley is home to some of the finest universities in the world. With Santa Clara University, Stanford University and San Jose State University all within 45 minutes of my home, I was sure the resources in this region would be at the head of the pack when it came to this disability. I was to be sadly disappointed.
I began an email campaign with all three universities; emailing the various schools of education, medicine, psychology, occupation and speech therapy. It was an enlighting experience on many levels. I had no idea how little I knew about how universities operate. Though I attended San Jose State, I never really understood the nature of universities and "isolationism" that is part of the overall culture of these institutions. So my email campaign began, without a clue...
The main message in my introductory email was, I was a father looking for resources for my family and other families like mine. I asked if the universities were addressing the issue of the unusually high rates of autism in the valley. I asked if they had any classes for teachers or service providers of people with autism. I asked if there was anyone available that I could talk to about creating programs that link university resource directly to the autism community. The response were as different and varied as the schools themselves. These are three very different institutions; Stanford in a private university, Santa Clara is a Jesuit university and San Jose State University is part of the Cal State system.
I decided that approaching Stanford University should be the priority in my outreach to higher education. The Lucile Packard Children's Hospital at Stanford University is considered to be one of the best children's hospitals in the world. People refer to Stanford University as "The Harvard of the West". Stanford folks refer to Harvard as the "Stanford of the East". The university's overall reputation speaks for itself.
When Jim and I arrived, we met Dr. Carl Feinstein in the main lobby. After a brief formal introduction, we were escorted into a room with 9 or 10 other professionals from within the Child and Adolescent Psychiatry Department. There were clinical psychologist, speech therapist, psychiatrist and clinicians from a variety backgrounds and specialties. After round table introductions, I began to talk about my motivation for requesting their assistance and support. I talked about my fortuitous reunion with Fletch. I talked about the diagnostic experience and the need for better communication between public schools and the medical community. I talked about the frustration and hopelessness we feel as parents. Jim Fletcher talked about the struggles he and his wife encounter when trying to balance the recommendation of their doctors with the resources available through public schools and/or those resources allowable given their household budget. He also talked about the pressures and strains that are put upon marriages by this disability. All in all, we talked for about an hour while everyone took notes.
When the meeting was over, everyone said thank you and offered the obligatory, "if you ever need anything...". Prior to the meeting, Dr. Feinstein said he would be glad to assist us in working to develop some resources for children and families. This was the "lure" for us; having a distinguished and respected professional to advise us as we grew our project. As we left the meeting, Dr. Feinstein thanked us and invited us to "keep in touch". As soon as I returned home following our meeting, I sent emails to everyone who attended the meeting; thanking them for their time and letting them know that I would be following up with each of them in the near future.
Unfortunately, there would be no future contact between me, Fletch or the people at the Stanford School of Medicine's Child and Adolescent Psychiatry Department. After many months and dozens of follow up emails without a response, I experienced what alcoholics call "a moment of clarity". Could it be that we presented the perfect case study for the clinicians and doctors at the Child and Adolescent Psychiatry Department? What an opportunity! If your a psychiatrist and you want to know how this disability affects the family, not just the patient, what an opportunity!...and we just walked in the door; no calls, no focus groups, no recruiting. The realization of what happened came to me in waves. After all is said and done, you don't want to believe you were off base in your "assumptions" about someone's desire to help you through a crisis. You want to believe that these folks understood and cared about your concerns. You want to believe that they also see the need for collaboration and resources for families and children, so you dismiss the obvious. The fact is, these folks, like other professionals are focused on their priorities, not ours. Though it may have felt like it, they weren't taking advantage of me and Fletch. They were trying to understand us parents, if only within the context of their interaction with other parents. Even understanding this, the experience left me with that cold metallic clinician's taste in my mouth.
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