Brian Blaisch, a pediatrician and the parent of an autistic 6-year-old, writes about the challenges he has faced advocating for his child in the Oakland public schools. — Katy
I’m used to writing as a physician, not as a parent. I’m a pediatrician in Oakland who has devoted my career to working with the underserved children of our community. But as I come to realize that I’ve done a better job of helping and advocating for my patients and families than my own child, I find myself at a crossroad.
Although I specialize in caring for children with developmental, learning, and behavior issues, I was caught completely off guard when my now 6½ year-old son, Jackson, started developing classic symptoms of autism at around 1 ½ years of age. What was surprising and disappointing was that when we finally got past our denial and asked for help with diagnosis and treatment, help was and continues to be difficult to find.
So much of this journey has been met with a truly amazing combination of indifference and incompetence that I need to speak out. When Jackson was finally three and eligible for services through the Oakland Unified School District, he was tested and ultimately diagnosed with autism. We were offered a program at Tilden. Although the classroom was dilapidated, he had a great teacher. The class, however, was understaffed and became more of a glorified daycare than a therapeutic preschool. When Jackson’s language was not improving we asked if we could get speech therapy for him and were told that “he did not have enough speech development” to qualify for speech therapy. It’s hard to understand or explain how we could have accepted that answer, but parents tend to trust and accept what is told, for a time.
By chance, we met an accomplished therapist of Applied Behavioral Analysis, one of the most widely accepted and utilized therapies for autism. We hired her to evaluate Jackson and begin an in-home treatment program for him. Within six weeks we saw dramatic improvement, which is well documented with video. Not wanting to waste any more time, we considered enrolling him in the STARS school in Walnut Creek, which offers that therapy, until we were told by STARS personnel that there was a similar program in the Oakland school district.
In all of our meetings with the school district we weren’t offered access to that program until we asked for and insisted on it. We were amazed that when we finally got him into the class, there were only three other children being offered the program, when there were clearly more who could benefit.
The school-based program was good, at first. However, we had to fight to keep our in-home program going so that Jackson could catch up from a year of stagnation and minimal progress. Eventually, they wrestled the program away from our therapist, the only one who has ever demonstrated rapid and impressive positive developmental progress. And this past year, Jackson’s STARS class has been without a supervising teacher, who is responsible for overseeing the program, tracking progress, and deciding what each student needs. Additionally, children with more severe behavioral concerns have been admitted into the program. As a result, we have seen declines in language and skills, and the emergence of more behavior problems.
Perhaps more than most parents I realize the intensity of educational resources that is required for special needs children. That doesn’t change what I expect or the law demands, but it has provided me motivation to do my part to support the school system and the community in my own way. As a general and behavioral pediatrician, I work with and advocate for many kids that attend OUSD schools. My wife organized a group of friends to paint and refurbish Jackson’s original classroom, and she has volunteered in a couple of classrooms.
To the administration I have offered my time and expertise in the area of disaster preparedness. I serve as the Chief Medical Officer and Deputy Commander for a regional federal disaster medical response team. As such it was possible for me to have high-level meetings with the Alameda County Emergency Medical Services Agency to find ways that they could support the OUSD with the implementation of its outdated disaster plan for general education and special needs children. The options and proposals that I was able to offer almost two years ago, although welcomed by the Community Advisory Committee of parents of special education children, has been ignored by two successive directors of special education for the school district, until this past week.
Beyond that, I sit on various county and local health plan committees that address the needs of children with developmental issues, and I speak to medical audiences about autism, screening, and the role of the medical provider as an advocate for the patient and family.
Indeed, about two weeks ago we called for an emergency meeting with our special education coordinator to discuss our concerns. The meeting was on the same day that I delivered a lecture to Family Practice Residency Program for the Contra Costa Regional Medical Center, where I am on staff, on autism screening and treatment. During the lecture I showed some video of Jackson getting his Applied Behavioral Analysis therapy from May 2007, almost two years ago.
I had moment to pause when I realized that Jackson had lost some of the language and skills he was demonstrating in that video. I showed it later that afternoon in our school meeting, and everything that we had been though these past 3 ½ years just came down on me like a ton of bricks.
And this is where my crossroad brings me. For all that we do not know about autism, we do know that early diagnosis and intervention is critical to outcome. To know this and to experience such an insidious pattern of incompetence and obstructionism is both confusing and disappointing.
If we can’t get what we need for our child, how are other parents, who don’t have the resources we have, supposed to get their children’s needs met? And, do I continue to work as a primary medical provider to the underserved children of this community and as an advocate in the county, or do I change course so that I can afford to provide the services my son needs now while finding the time to fight for my him to get what he needs to make up for the unnecessary stagnation and losses we have suffered?