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".