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We are struggling with the school district. It took us a little time figure out they are not always forthright with our options and they don't offer intensive services.

The school system is simply unable to tell you your options nor offer intensive services as this would cost the system more money than they have. I don't believe in money issues as there are indications that if a public school system gets a ton of money for some reason that does not equate to equally more services. However, by telling you your options (Eclectic, Structured Teaching, Behavioral(ABA)) the public education system fears that parents will all ask for these types of services and the system (already stretched) won't be able to meet the requests potentially causing more work & costs on their end with meetings, mediations, and Due Process hearings.

It is extremely common for parents to have to fight very heavily for intensive services (25 or more hours a week of intervention) - and yet be disappointed when they get it due to competency of the individuals carrying out the services(aides that are not well trained).

My spouse and I are not in agreement with the diagnosis/education plan.

It is extremely important that both spouses learn a methodology at the same time and both are very involved. Parents really should get a figurative "Autism Degree" in that they need to learn, learn, learn. The best initial training to help parents understand the basics of autism and have the realities of the education system explained to them is by Sharone Lee of Threshold (503-375-9462 gridwork@teleport.com) You need to chose your methodology at home an attempt to sway the educational system to do the same (Eclectic, Structured Teaching, or Behavioral (ABA)) Ensure that both you and your spouse do not become another statistic in the already high 75% divorce rate for those with special needs children.

Why do I feel like I get nowhere with Early Intervention (0-5) or the School District (K-12)?

Please remember, the Oregon Department of Education (which provides special education through early intervention and the school district), has a natural, build-in conflict of interest in informing parents of treatment options (see http://www.kathyandcalvin.com/autism/kathys_corner.htm). This is due to a triangle that represents the relationship between parents and the system:

Power -------------> Economic factors --------------> Control ---|
^
|---------------------------------------------------------------------------

Where Power is the ability to

• Handcuff, arrest, and arraign your child for outbursts in a classroom (see Salem teen gets arrested)
• Place your child in a "black box" for punishment (see lawsuit against Albany school district)
• Restrain your child (this happens due to ignorance about the law and lack of competence with children with autism)
• Retaliation from the School District or Early Intervention at several levels

Where Economic Factors affect:

• Placement
• Goals
• Methodology
• Services

Where Control is seen in:

• Using only "approved" independent evaluators from a list compiled by ODE
• Inability to visit classroom without advanced notice and placing a time limit on the visit
• Inability to visit potential classroom for your child before placement is made
• Essentially controlling the hearing officer pool

*Please note, some, all, or none of these items can affect you.

How do I ask the school system for intensive services (25+ hours a week)

1. The National Academy of Science's 200+ page report on Educating Children with Autism (2001) appears to give parents a new weapon for our battles with school districts. The NAS report makes it clear that every autistic child should get a MINIMUM of 25 hours per week YEAR ROUND of intensive, structured, early intervention as soon as they are diagnosed. (See page 5 of Executive Summary).

   Here is a link to the report: http://books.nap.edu/books/0309072697/html/5.html#pagetop

2. The Autism Services for Oregon came up with a FAQ pamphlet on autism in 1999. One of the articles they put in was by Dawson, which stated children with autism need 25 hours a week intensive services. (I will scan this interesting document)
3. The Lovaas study was based on 40 hours of ABA. The control group which received 10 hours did not gain nearly the same results.
4. If offered Sensory Integration, ask them the research behind it (you see, after 20 years there isn't any). Then show them the research behind ABA (it is controversial but it did have a control group and it was long term). Insist that ABA falls under "Best Practices" and that you want proof of their program and the outcomes from it.
5. Set up your goals so that it requires ABA to carry them out (without saying you want ABA, maybe call it specialized instruction with prompting procedures - and the need for a functional behavior analysis for behavior issues).
6. Many ODE officials will give you the "what you are asking for is a Cadillac and what we are required to give you is a Chevrolet" story. I don't know where they get this basis from but: If the resources for ABA professionals were in place, the cost would more likely be about the same. In other words, if our "autism specialists" were ABA professionals with certification, the resources would be in place to implement home and school ABA programs. I consider an ABA program to be the Ford Stationwagon, approximate equivalent cost to the Chevy Cavalier the system is offering. By the way, the Cavalier is called Eclecticism.

Why is the Oregon Department of Education and Special Education such a pain in the butt to work with?

Analogies - Oregon Special Education is like:

1. Asking your family doctor to do brain surgery on your child
2. Having a plumber do the electrical work on your home
3. Getting your haircut from an unlicensed beautician
4. Hiring an architect off the street to build a bridge. Position requirements include: a drivers license, clean criminal record and high school diploma
5. The doctor that specializes in pediatric cancer tells you that your child will be treated with herbs and that chemotherapy and radiation therapy are just too "controversial"
6. A doctor telling you that even though your child has been newly diagnosed with diabetes, that shots will only be administered at the hospital until your insurance dries up, there will be no follow up care at the home, and no training on how to administer insulin to your child because there simply is no funding for that.
7. An alcoholic that hasn't taken the first step to recovery by admitting "I have a problem"

Oregon Department of Education has some problems:

1. There is no watchdog group to ensure accountability
2. It is up to the parent to prove they are not doing their job or breaking the law
3. They have an awful lot of power
4. It is up to the parents to unite and help fix it
5. They point fingers at the legislature and taxpayers for poor funding but certainly do not look at themselves for better use of money
6. They are unable to work toward their mission statement of using "Best Practices"
7. They do not have the expertise to work with children with autism
8. They do not have enough professionals to do Functional Behavior Assessments, nor to follow up with ones that are made
9. Teachers that want to do well, that want to learn, and speak out against administration may face retaliation, thereby, the good teachers leave
10. They have a minimalist approach to learning - "adequate"

How can I help change the system?

As parents we really do have an obligation to our children, ourselves, our community, and even our country to move toward making things continually better. The educational offering by Oregon is dismal. Even worse, they fully admit they only need to meet what is required by law (adequate) and think they are doing a good job with our kids.

Here's the clincher: ODE feels they are doing a good job because parents are not writing complaints nor are they contacting state representatives and senators. You see, with ODE, all is well if no one is complaining, then no harm done. They don't take into consideration the fact that parents don't have the time, energy, or income to do the complaining (you might have to take vacation from work or forgo taking care of children).

Here is what you can do:

1. Demand at all IFSP/IEP meetings that COSAC's 10 Best Practices for Autism be met
2. Insist that the system should offer parents a choice of educational programming (I call it methodology but for some reason it raises the hairs on the back of ODE's neck). Options include:
   • Eclectic model which is already in place but needs to meet 10 Best Practices
   • Structured Teaching done by COMPENTENT folks
   • Applied Behavior Analysis carefully and consistently overseen by Board (BCBA)
     Certified Behavior Analysts
3. Join the Oregon Autism Community Mailing List Project. OAC Mailing List Project involves the Autism Society of Oregon, Families for Early Autism Treatment, Oregon, The Center for the Study of Autism, Threshold and other private nonprofit organizations that are collaborating to create/maintain an independent, confidential and comprehensive mailing list service for people with Autism and our family and service providers. Simply send your name and address to ASO, PO Box 13884, Salem, OR 97309 asking to be added to the Oregon Autism Community Mailing List Project. It's FREE!
4. Find 3 other autism families to join the Oregon Autism Community Mailing List Project.

I'm looking for a private home tutor in leiu of homeschooling alone. Anyone know of such teachers in the Portland area...I'm on my last rope here :0( Priavte schools don't want to accept my son because of language delay, public schools won't foster his learning style. I need help!

Hi, have you tried the The Classical Tutor [tutor@voyager.net]. She uses Direct Instruction curriculum that has shown to work with children with delays.