My Own Brand of Therapy

I started emailing various instructors at the Connie L. Lurie School of Education in the Spring of 2006... I emailed people in special education, communicative disorders, child and adolescent development, the school of nursing and psychology department. I reached out to anyone that I thought might have an interest, personal or professional, in children with autism and their families. Unfortunately, the response was less than impressive; about ten (10) percent, at best.
  I was fortunate to meet one of my greatest supporters in Dr.Christine Hagie at San Jose State University. Dr. Hagie was a  professor at the University's Connie L. Lurie School of Education. She responded by attending community meetings with me and coming out to the local school district to meet with administrators and other parents. Most importantly, she also helped me establish what had become "my semi-annual therapy session".

San Jose State University

 One day, Dr. Hagie asked me if I would come and speak to her class at SJSU. The class was set up for people who were working on their special education credential. Most of the people in the class were already working on school campuses and pursuing their certification at night. She asked if I would talk with them and give a parent's perspective on this disability. Of course I agreed but asked if I could bring my family and another family and do a "panel" presentation for the class. We would talk about what it was like to live with this disability 24/7, what our expectations are as parents and hear what life is like from the sibling's perspective.
  I asked Jim Fletcher if he and his family would be interested in joining our family in speaking to Chris' class at SJSU. Jim and his wife Donna jumped at the opportunity and we made plans to meet at the campus at 7:00pm. We showed up that Thursday evening and we spoke to a class of 25 teachers, counselors and therapist for 2 hours about autism "from inside". It was an experience I hadn't anticipated; a therapeutic outpouring of emotion, love, comedy, sadness and hope. I found myself being more open and frank about our lives than I had ever been before. I heard things from Kathy that I hadn't heard before. Jim and Donna were fully immersed in the moment; sharing their deepest concerns, their experience with extended family, their personal challenges and successes.
  There are a couple of things that I shared with the class that I thought was important for them to know.
The first thing I said to the class was  I sometime experience guilt for thinking "what about my life? I always wanted children but I did not think that my entire life would be spent caring for another person. What about my dreams and desires?" Sounds terrible to say, therefore many won't say it but it is a real feeling for some and I've acknowledged it. (Doesn't change anything, I'm happy to care for my girl for the rest of my days. She is the light of my life.)
Secondly, the tension that teachers, school districts and administrators feel comes not only from the lack of resources available to parents but the disconnect between the medical community and public schools. When Danielle was born, our doctors said that she would require hours of speech and occupational therapy each week. We were told the school was responsible for providing these much needed services. When I went to the school district looking for these services, I was told that we would get 30 minutes of speech each week and 30 minutes of OT. What? This was a fraction of what the doctor "prescribed". In other words, many times the tension between parents and schools comes form the fact that we are given a "prescription" from our doctors that the schools are not prepared or willing to fill. Imagine another disability where this type of treatment would be acceptable? If your child had epilepsy and your pharmacist (service provider) refused to fill the prescription, how would you react?
  The people in the class sent evaluations back that were pretty remarkable. Many said they had never had the chance to speak to people at that level because of the emotion and tension that inevitably exist between the school and parents. They were also very interested to hear what Danielle's older sister had to say about the affects this disability has had on her. This was the beginning of a semi-annual therapeutic therapy session for me. Each semester, I speak to administrators, counselors, teachers and therapist who are working on their special education credential at San Jose State University. In addition to the therapeutic affects on my life, these presentations help people who care for our loved ones understand the perspective of the family.
  In spite of my positive experience at the School of Education, all was not well at SJSU. I asked if there was any other schools within the university that might be doing anything with parents or students with disabilities. The answer was "no" so I decided not to pursue any further resources at the university. I thought I would focus on following up with Santa Clara and Stanford University. However, within a few months of my last inquiry, I met a psychology student at SJSU that gave me some interesting news; SJSU School of Psychology had an Autism Clinic that was saw almost 300 families each year. I was taken back by this information; how can there be an autism clinic on campus and the school of education not know about it? The two schools are on the same campus, two blocks way from each other.

Santa Clara University

  In defense of the good folks at Lurie School of Education, this problem was not unique to the San Jose State University campus. I had similar experiences at both Stanford and Santa Clara University. People get so caught up in their agenda, with what they need to accomplish, in completing the task at hand, that they are oblivious to what is happening around them. I found this to be especially true on college campuses. I certainly can understand it but this is one issue that I wish would inspire more collaboration and "cross-pollination".

Dad's A Guinea Pig?

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.