10

Time to act

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


photo of Dr. Brian Blaisch and his son, Jackson, courtesy of Blaisch

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?

Katy Murphy

Education reporter for the Oakland Tribune. Contact me at kmurphy@bayareanewsgroup.com.

  • TheTruthHurts

    I understand that special ed is chronically underfunded and pits money for “regular” ed against money for special ed. In tight budget times, this is more untenable than normal. I praise the president for trying to do something about it, but I bet Oakland is still strapped in trying to best support the population. Let’s hope all our kids parents advocate as strongly for the needs of their children and pressure those with the money to do something about the problem.

  • Autism Mom

    My nonverbal autistic son (OUSD Student) is able to type for communication and is academically above grade level because we were able to provide private services for him. It sickens me to think of all the children who have been condemned to silence because their parents did not have the resources we do. Like Dr. Blaisch we tried to help the district better serve these students but found it futile. I wish I had an answer.

  • http://www.playonwords.com Sherry Artemenko

    Brian, thank you for your honesty in relating your journey to get the best services for your son. Knowing your incredible credentials and service to your community, I am amazed that you have had such an uphill battle. I am a speech language pathologist who has worked many years in the schools and now am in private practice. I have also pushed for the most and the best for my clients with autism. I have a website with a blog, articles and reviews of educational toys and books to build language. I have reviewed a therapy kit and am looking at The Transporters DVD to review soon. Keep being your son’s dedicated advocate!
    Sherry Artemenko
    http://www.playonwords.com

  • Sue

    Short answer for Brian, please take care of and advocate for Jackson, first!

    My autistic son is 16, and he gets good services from the ASIP program at Skyline, but that’s because most/all the ASIP parents have worked together and shared information with each other.

    Having walked many, many miles on the same difficult path you’re traveling, I have to say that no one else will ever love and care for your child like you will, no one else knows him like you do, his strengths, his weaknesses, his successes and failures, and no one else *can* or will advocate for him as well as you, his parent. That’s your primary job, to be the best parent-advocate possible to him, because nobody else will do that job for you, or for him.

    I hope you’ll find allies along the way. Other parents, Spec. Ed. and general education teachers, aides, therapists, and once even a district adminstrator (sorry to say she’s long gone from OUSD!) have become our family’s friends and allies, and helped us with meeting our son’s needs. Our family has tried to give back to this community when and where we could.

    The biggest problems we’ve encountered can be laid at the feet of the district’s Director of Special Programs, and the next biggest problems belonged to her predecessor. I’m not going to say anymore, because the language I’d use would be completely inappropriate to a public blog.

    As far as we can tell, the job of the current Director of Special Programs is to do as little as possible and especially to spend as little as possible without getting the district sued. Parents have to become well-versed in state and federal education law, and walk into every meeting with all the right acronyms, words and phrases (FAPE, LRE, “necessary for the student to benefit”, etc.), sounding like we’ve just come from our attorney’s offices, and will be filing suit at the first opportunity.

    Our favorite technique – and no one seems to believe how well it works until they try it – is to always bring a recorder to every meeting. By law, written notice must be given to the district 24 hours before the meeting, but other than that, it’s a minimal hassle, maximum effectiveness tool. Nobody from the district will lie, or threaten, or argue when they’re being recorded. Instead, they all want to sound super-professional, and super-invested in serving the student’s needs.

    Our family’s IEP meetings went from 4-hour screaming matches where district personnel lied to our faces about what the district could and would provide, and once someone stormed out on us, and we refused to meet with those (ahem! another inappropriate term) again, and the IEP wasn’t completed. From all that horror, to meetings of one hour or less with a completed IEP that met our son’s needs, and even services we weren’t aware of being offered. When we were done, we could all genuinely smile at each other, thank each other, and feel good about what we’d accomplished together.

    Katy, if Brian is interested, you have my permission to give him my contact info.

    Brian, we’ve shared our son’s IEPs with other families before, because sometimes just knowing the language another family has used in their child’s IEP is all that’s needed to get a necessary service or accomodation.

  • Ashley

    I think the actions of the school board are deplorable. I understand that it is very common for the system to deny services in order to spend less money. Since this seems like the case, I wonder what is the point of having a school board, they act quickly on budget issues that concern their own salaries but leave our parents and children to fend for themselves. With the number of children diagnosed with Autism growing exponentially, it would seem as if they would put more effort and money into educating these children. Instead we pay our tax money and they do the opposite. Stay strong Dr. Blaisch and fight them with everything you have!

  • La Voz

    Take care of your so first! God Bless you and your family. I have a Special Education child of my own in a district charter school. I am glad that this school provides an RSP tutor, but the district offers nothing.

    I found out through my own investigations that OUSD recives over 3.6 million dollars for taxing the charter school for services I know myy son’s school has not recieved. A OUSD RSP Showed up one day in the semester and that was all.

    Dr. Blaisch please focus on you son first because once you begin to dig deeper at the incompetence and indifference of OUSD, you will soon see tragic tales of families whose lives will be ruined by this dilemma and you may become entrenched and lose valuable time with your son.

    I have seen and heard so much in the city that i really do not understand why we let these people get away with it. What is it? Is it cause we are poor? Minorities? I hate this blog because it brings the cockroaches of Oakland Education politics out of hiding. They say things that rattle and scare me to think they have connections in this city.

    Stay out of the mess and work with your child and others in your practice. You will change this city one child at a time and that is better than what many of us can do.

  • http://Zazzle.com/Florabunda Richard94611

    It is unfortunate when a parent is not told of all the special education options open to his or her child. I don’t know, however, that what happened to Dr. Blaisch is typical or even common.

    I have taught as a substitute for many, many days in special education and in ragular classes in several Oakland high schools. Before I became a substitute teacher in the OUSD, I had rather an automatic, negative opinion of Oakland schools. After my experiences with the special education teachers in Oakland, I can tell you that the ones I have met — include some wonderful teacher aids — are wonderful. They do an excellent job in a situation that requires superhuman patience and intelligence. They care deeply about their students.

    The doctor is doing what he should be doing, keeping careful track of his son’s situation. He must be one of the very few paretns doing this, though.

    To give the impression that the folks in Oakland’s special education are careless and incompetent seems to me to be absolutely inaccurate.

  • La Voz

    Richard-

    Do you have a child that has to depend on this – yes incompetent OUSD system? Have you dealt wit OUSD Administration and Psyc staff? Why is that OUSD spokepeople are always subs?

    Obviously Richard your child is not mandated to attnd schools that will perhaps ruin their future. Us poor people have no other choice than to attnd vioent schools where Subs, yes yo, must be rotated throught the year to teach kids cause no one wants the job. We the populants pay and our children suffer.

    So dont give me you defense of the Teachers Aides routine- I have dealt with some who fall asleep on kids IN CLASS!!

  • Oh, the Irony

    As a special education teacher (formerly autism-specific) in OUSD, I’m saddened by and sympathetic to Dr. Blaisch’s experience.

    The issues he describes as stemming from “a truly amazing combination of indifference and incompetence” are, sadly, the norm these days in public special education: too little staffing, too little training, way too much staff turnover, and a small number of genuinely effective programs hidden like money under a mattress for fear that demand, once a large number of people hear about it, will utterly crush what’s working about them.

    What saddens me the most, Dr. Blaisch, about your story is that dozens of parents have found what you’re seeking for your son–programs that work, staffed by people who care. In a school where the teaching community has the experience and background necessary to serve children with autism spectrum disorders and other difficult conditions, and, most importantly, the ability to collaborate in effective ways.

    In a physical plant that hasn’t had a working fire alarm since the students got there. In classrooms that, like the rest of the special day classes in Oakland, sometimes do devolve into “glorified daycare” when the staffing’s not available–due to a systematic issue of paraprofessionals receiving below-poverty wages and no preservice training. In a school that, despite high academic achievement and ever-increasing enrollment (both general and special ed) is slated to get carved up like a turkey at the end of the year.

    I truly believe that the special education administration in OUSD recognizes the value of the services you seek for your son. The challenge is, how can the district AS A WHOLE recognize what’s working, and look honestly at the issues that make other things not work?

    I think the district has an opportunity to do something approximating the right thing for parents, families, and students who are on the same journey as Dr. Blaisch and his son. And I think every family with a child who has an IEP in this district would do well to familiarize themselves with what’s going on at Tilden, because ultimately, we’re all in this mess together.

  • Fragile X mom

    Brian,
    It always saddens me to hear that other’s are going through the same thing as myself.

    I have had a very similar experience, however, I was not able to get the behavior specialist that has worked so well with my son for the last 4 1/2 years put back on to my son’s case.

    Through my insistence (and 2 months worth of documented) regression we were finally offered another behavior specialist but, I have to say, one that is very different from the behaviorist you and I have both used.

    Why is it that we all have to fight like crazy to get a level of committment and programs that everyone knows will work. It just seems as if they like to spend the money on lawyers instead of the kids themselves. I don’t know the numbers but it would be an amazing story to find out how much these districts spend on trying to not give parents services and programs for their kids as opposed to how much it would cost to just offer them in the first place.

    I can’t help but hope that once California gets it’s inefficient budgeting under control and it’s priorities straightened out – that maybe one day we will live in a state that actually values education for all children and not one that builds more and more prisons.

    Good luck to you and your son!