Paperwork Hell

Parents of children with disabilities deal with a lot of paperwork most parents, thankfully, never see. Last week, Jack had an appointment with his developmental pediatrician, a twice-a-year event that requires me to generate paperwork to help the doctor make medical decisions for Jack. I gather information from the schools--Jack's teachers, therapists, aides--and hand it over to Dr. S, who reads it, looks worried, asks questions (some of which I can answer, some I can't), and then proposes our next step in the quest to help Jack learn and thrive in school and life.

This year, my job of gathering data was made easier by Jack's MFE, or Multi-Factor Evaluation. Every three years, the school district must test Jack thoroughly to verify that he still qualifies for services under IDEA, or the Individuals with Disabilities Education Act. For a couple of weeks, Jack's education is interrupted by standardized testing for a wide range of deficits by a wide range of professionals, including a psychologist, speech therapist, occupational therapist, and special-education intervention specialist.

The results of this testing are brought together in a document called the ETR, or Evaluation Team Report, and all the professionals (plus the school principal, aides, and regular education teachers who work with the student) sit down with the parent to read this document aloud and discuss its implications for the child's educational progress.

I hate ETR meetings. Hate, hate, hate them.

These evaluations are a bureaucratic necessity to justify spending lots of tax money on a child who has legitimate special needs. The testing gives the professionals confidence to say certain things I already know about Jack, things they dress up in the jargon of education and child psychology and developmental medicine so pencil-pushing bureaucrats at the state level will be satisfied that everything is properly documented to provide services for Jack. I get all that.

But every third year, a pit opens in my stomach and I dread reading the results...and most especially, I dread having them read out loud to me at the meeting by kind and compassionate professionals who are delineating, in excruciating detail, every little problem our son has.

I tend not to focus on Jack's problems. I focus on his strengths. I focus on hope and progress and the joy of being his mom. I focus on solving problems because I already know what they are and the teachers, therapists, aides, and doctor help me solve them. Jack really does have an amazing team working for him.

But at ETR meetings, no one talks about solving the problems. We're there to identify and delineate the problems themselves with evidence and data.

Cold. Hard. Facts.

During our first ETR meeting, when Jack was first evaluated for services through the public school's developmental preschool, it took every single ounce of my strength and desperate prayer not to dissolve into tears during the meeting. I simply stopped listening to professional after professional read the densely-printed words in miniscule type that stretched beyond normal margins to nearly the very edges of the paper.

My brain simply shut down in self-defense. I fled to the car after the meeting and fell apart into a wet, snotty mess.

Since that first meeting, we've established that Jack doesn't test well. His test results are always below expectations and often rather useless. Meaningful test results come from kids who do their best on the test, who pay attention and want to please the tester. When you get good results, you can measure progress, evaluate where you need to put more energy, and see where goals have been met.

Jack does not like taking tests. He does not like being timed. He does not care if an adult is happy with his performance, nor does he understand why an adult would even care how he performs. Every single teacher, therapist, doctor, and psychologist who has worked with Jack has stated emphatically that their test results do not accurately assess Jack's abilities.

They do, however, show us his disabilities. And there's the irony biting me in the butt every three years. We get great results justifying Jack's qualification for services, but we rarely get good data measuring Jack's progress.

This demoralizing state of affairs, however, exists only in the paperwork. Jack is making progress...sometimes astonishing progress...in real life. That progress has no place in the ETR meeting, however. And that's why these every-third-year meetings feel like a dark and ugly descent into hell. The perspective narrows so tightly, so bureaucratically, that no light comes in.

There's just the paperwork.

Jack had MFEs starting preschool, before kindergarten, in second grade, and now in fifth grade. This one wasn't quite as hellish as the rest because the professionals did not read their reports aloud. We would have been there for three hours if they had. Instead, they summarized, and we discussed the results, making the meeting so much more humane and much, much shorter than it would have been otherwise. Then, as soon as everyone had signed off on the ETR, we began the IEP meeting.

Back-to-back meetings. In this case, it's a good thing.

An IEP, or Individualized Education Program, is a much happier document than an ETR. An IEP establishes goals for a student's therapies and education, spells out how progress will be measured and reported in the real world, and lays out (legally) the requirements that the school must meet for that child, such as aide support, extra testing time, modified curriculum, special busing, and other accommodations. I like IEP meetings. They are full of hope and positive talk and plans. We may not always be able to measure Jack's overall progress, but we can measure small things much better. We can see progress.

But there's even more paperwork generated for the IEP. I took an advanced draft of the IEP to Jack's appointment with Dr. S, which was helpful since the IEP includes the test results from the ETR (duplication of documentation that multiplies print pages), so the data was there for the doctor to evaluate. He read it, looked worried, asked questions (some of which I answered, some I couldn't), and then proposed our next step in the quest to help Jack learn and thrive in school and life.

This pilgrimage through the educational and medical systems with Jack leaves me exhausted and confused a lot of the time. No one can tell me anything with much certainty. Data may or may not be meaningful, and what works for one student or patient may or may not work for another. All we can do is muddle through and try different paths over, under, or plowing straight through until we find something that works. We document everything, which is sometimes helpful and sometimes not. But I know for certain that the team we have working on Jack's behalf is committed, caring, and skilled. We're all doing our best for him. And that matters far more than any testing can measure.

At the hospital last week, I promised I would fax the doctor the finalized paperwork from the ETR/IEP meeting that would take place two days after our appointment. But when I left that meeting at school, I had over fifty pages of documentation to send him. Needless to say, I made copies and mailed them, along with a summary of the discussion that took place at the meeting...discussion that included little tidbits of information that made us all laugh and showed just how much that team of professionals loves and cares about Jack.

Jack jumped rope for five rotations independently. His friends in the inclusion class protect him and help him, and some prefer sitting next to him because they like him so much. Jack loves science now and is beginning to work more independently in that subject. He enjoys learning on the Chrome books that are now in his classroom, and increased computer-aided instruction will likely serve Jack well. When the psychologist tried rewarding Jack's answers on a test with a "treat," Jack indignantly self-advocated: "I am not a dog!" His best friend is Sophie, and the principal will try to have her placed in the same class as Jack for sixth grade.

These are the tidbits of data I enjoy, the tidbits not documented for bureaucrats but shared by skilled, caring teachers, the tidbits that document the real Jack whom I love so much, for whom I will go through whatever is necessary to get him whatever help he needs.

That's what parents of children with disabilities do. And I thank God for the help we get from teachers, therapists, and doctors because there's no way we could do all this without them.

The paperwork alone would kill us.