When your child is special-needs, s/he gets an IEP, or Individualized Education Program. Until and unless the district decides your baby no longer needs an IEP, its existence is the first point of demarcation: this service/school area is for kids with IEPs, this part is for kids without IEPs. It’s not like separating by water fountains or bus-seat placement. Well, not yet.
You get a new IEP every year, or more often than that, if you demand it. The first IEP happens when your child turns three; this is when California schools are legally required to start to provide services. The benefit of the IEP is that everyone should be on the same page regarding services; you can read in black and white just where we are and where we’re going. I love quantitative analysis and I welcomed the process; I wanted to have fistfuls of “Dar does this 4 out of 10 times; in a year he’ll do it 8 out of 10 times”es. My wife and I prepared for Dar’s first IEP like it was somewhere between the GRE and the Normandy invasion. Which I guess it was. On our D-Day, October 15, 2012, which was also Dar’s 3rd birthday, 10 women and 1 man (me) sat in a huge conference room at the BUSD offices and slowly discussed the fate of my child.
About a week before Dar’s IEP, a sympathetic neighbor who actually has two kids on the spectrum brought me to a talk by Juliet Barraza, organized by the Disability Rights Education & Defense Fund. By then, I owned and had already read The Complete IEP Guide: How to Advocate for Your Special Ed Child by Lawrence M. Siegel. This forum covered a lot of the same ground. First: here’s what the DREDF does. Second: here are the laws, including No Child Left Behind and the Family Educational Rights and Privacy Act and Section 504 of the Rehabilitation Act of 1973. We are told that an IEP is a service that closes the gap between Present Level of Performance (PLOP) and Expected Level of Performance (ELOP). We deserve PWN (Prior Written Notice) if we want to pursue ADR (Alternative Dispute Resolution). We should have SMART goals for our IEP – Specific, Measurable, Action-worded (e.g. “Student will be able to…”), Realistic/Relevant, and Time-limited. Ever feel like everything’s an A.C.R.O.N.Y.M.?
Barazza spent at least 15 minutes explaining an IDEA – the Individuals with Disabilities Education Act of 1975. The 6 core principles of IDEA are 1. Appropriate Evaluation/Assessment, 2. Free & Appropriate Public Education, 3. IEP, 4. Least Restrictive Environment, 5. Parent (and student if appropriate) participation in the decision-making process, 6. Procedural Safeguards … Ever wonder why no parent can get through the day anymore without the word “inappropriate”? Got an IDEA for you.
This lecture made me feel as though getting information from a school district is like getting blood from a stone. Write down everything, they hectored, and I believed it. They warned that if an assessment evaluation has been completed and then printed, the district owes me a copy within five days. If it’s been completed and not printed, they have 15 days. A sample quote: “Written requests trigger strict timeline and an *affirmative obligation* to assess, per the CHILD FIND provision of IDEA law.” Failure to implement is a violation. We also have a right to a second opinion at public expense. Would any particular service be 1:1 or in a group? Charts said things like this: Assessment -> Goals and Objectives -> Services. “Watch out for ‘up to’ to describe frequency or duration – this could be NO service is OK.” And so, so, so, so, much more. The general impression was of planning a Sunday drive on the Death Star. Was the district really all that bad? I doubted it, but it was educational to hang out with all these frustrated parents of older kids and wonder how soon I’d be one of them.
Before the lecture, I had a list of things I wanted DarMar to be able to do. The lecture encouraged me to turn these into “He will”s. Thus:
1. He will be responding to his name 100%
2. He will see something and ask for it by name
3. He will call a name (e.g. mommy, daddy) instead of screaming, or at least say ‘help’
4. He will point to what he wants
5. He will say ‘yes’ and ‘no’ appropriately
6. He will say ‘I want’ with a ‘w’ sound
7. He will recognize the alphabet and make some approximation of all 26 letters (as sounds)
8. He will recognize 1-10 and utter some version of these
9. He will imitate other classmates when appropriate, say 50% of the time
10. He will use verbs, any verbs
11. He will follow five 2-step commands
12. He will combine a noun and a verb
13. He will do some kind of pretend play that is not a direct imitation
14. He will draw circles, curls
15. He will look at things that others point to
16. He will have back-and-forth communication
So back to D-Day. I thought, well, if I can just explain all these “He will”s, get them in writing, get some kind of metric to measure them…I’ll feel better. Well, the good news is that we got all those metrics. The ten women at the IEP were all very helpful. Who were these smiling people? My wife, our ABA case worker, a therapist from another place we took him, a speech therapist from the BUSD, an occupational therapist from the BUSD, his new teacher, the district liaison for special-needs kids, some evaluator who had met with Dar, and two other important people I can’t remember now. Juliet Barraza had me ready for the Legion of Doom but they felt more like the SuperFriends. I truly believed then, as I do now, that everyone was trying their best.
However, it wasn’t enough. After Dar began school – after he no longer qualified for 20 hours of the 1:1 attention he was getting from a therapist from Regional Center (I told you before that her name was Anya) – not only did he not hit these goals, but he experienced serious regression. But is that the school’s fault? One constant difficulty is that there’s no control in this experiment. Maybe nothing could help Dar.
This month, February 2014, I’m heading into a new IEP, and I’m guessing I won’t see all those same warm smiles. Dar isn’t one of their success stories. I’m starting to feel a bit more like those parents at Barraza’s lecture. Anyway, I’ll let you know.