Sheila and I visited Neil’s school in mid-January for an Individualized Education Plan (IEP) meeting with his teachers and therapists. Under the Individuals with Disabilities Education Act (IDEA), an IEP must be drawn up for every special needs child who attends public school.
IEP’s are updated each year. Every change to a student’s goals is dutifully recorded, and an updated plan supplied to the parents. Sheila and I have joked that parents end up with quite a collection of folders featuring the school district’s logo.
The IDEA, amended by Congress in 2004, requires that children with special needs “have a free appropriate public education the emphasizes special education and related services designed to meet their unique needs and prepare them for further education, employment, and independent living.”
The law also established an “early intervention system” to make services available to families with special needs children. Funding was also earmarked for training and recruiting qualified teachers, and for conducting meaningful research on the progress of special needs students.
Making Progress
The meeting gives us a chance to talk at length with Neil’s teachers, to hear about how cute he is, to hear the assessments of his progress. Last year at this time, crawling was difficult for Neil. Now, he jets around the house, especially when he sees something he wants, or if the front door is open.
And with the help of his walker, he gets around quickly, and maneuvers pretty easily around large pieces of furniture.
Last year, his menu was limited – stage 3 baby food and PediaSure, for the most part. Today, he partakes primarily of selections from the school’s regular lunch menu. Sometimes it’s an adventure (particularly if his GERD is acting up), but he tolerates (“likes” is still not quite accurate) more types of food.
Neil has mastered signs for “want” (patting his chest) and “more” (clapping his hands). He’s almost got “go” (tapping his thighs), but is a whiz at “all done” (think of an umpire’s `safe’ sign). Last year, he communicated only by babbling and raising his voice.
Then why do we dread the IEP so?
More Challenges
For starters, there’s so much further to go, so many more challenges for Neil to face. Our hope is that he becomes self-sufficient – able to take care of himself and, eventually, live on his own.
Listening to the teachers and therapists as they painstakingly discussed last year’s goals for Neil, noted his progress toward meeting them, and then laid out this year’s goals – some of which were scaled back because he hadn’t made enough progress - we felt as though we hadn’t done enough.
We felt like bad parents – bad parents who had been sent to the principal’s office.
I thought of the times that I graded papers, or read a newspaper, or even went to the bathroom when I could have been interacting with him. But there I sat, making notes, promising Neil and Sheila I would do better, when I knew that life simply intervenes, making this kind of full engagement impossible.
We came up with at least one defense mechanism: Sheila and I would periodically examples of Neil’s behavior that made us laugh, or that we thought were evidence of at least modest progress.
The teachers and therapists, in full skilled professional mode, verbally patted us on the head – the equivalent of saying “isn’t that nice”- before moving on to the next goal.
At times, the tone of the meeting was a stark contrast to the happier, more playful interaction between teacher, therapist, us, and Neil during the yearly home visit set up by the school district.
It’s probably just a matter of being on “our turf.” They observe Neil here, as he cavorts around the house, either on his scooter, hands and knees, or in his walker. A lot less tension.
We came away from the IEP with a list of instructions for the coming year: encourage him to put together large Legos, get him to sit with his knees directly under his rear end, rather than splayed in a “W,” try a “wheelbarrow walk,” where we lift his legs up behind him and cajole him into walking on his hands, and add some new signs to his repetoire.
Sliding a hand up and down an outstretched arm means “music.” A cupped hand placed in front of the mouth means “drink?”
The dread subsides only when the meeting ends. It is replaced by hope, by a strong willingness to try all of the things the team has suggested.
We only hope we can get to at least some of them in the coming year.
