It’s January, so that means in my house it’s IEP (Individualized Education Plan) month. In other words, as any special needs parent can tell you, it’s the least fun time of the year.
Some years are better than others. My daughter’s first IEP was completed in January 2007, just months after my husband and I split up. The process seemed to go okay, but now I suspect I was in a fog of denial. And fear. Or perhaps the IEP was simply less terrifying than the divorce I knew was coming.
Whatever the case, the IEP process went downhill from there until Katie was transferred to another school district. Then we had two blissful years in which I was able to more or less cruise through the year with only minor mishaps. But the current IEP cycle has been a struggle from beginning to end. There has been meeting after meeting, battle after battle. Now January has snuck up on me and my reserves are depleted.
Even worse, this year is Katie’s triennial IEP. Every three years the law requires that she be re-evaluated—partly to measure progress and partly to ensure that she still qualifies for special education services. This means more work for everyone, including me.
It’s been three years since her last triennial, so I had almost forgotten the unique challenges that all this testing presents to me. It’s hard to see my smart, funny, beautiful, autistic daughter boiled down to a series of raw numbers and weighted scores. The worst report by far, at least for me, is the speech report.
It’s not like I don’t know my daughter has a severe speech delay. I’m confronted with this fact on a daily basis when I struggle to communicate with her. But to see her speech boiled down to a precise number, an exact measurement of how far she lags behind, is always gut-wrenching.
It reminds me of the first time.
Katie was diagnosed with a speech delay shortly after she turned 2. She was non-verbal, so I knew there was a problem. I had known it for the better part of a year. But when I saw the Regional Center of the East Bay’s report it felt like a kick to the stomach. It took my breath away. My mom called and I remember how hard it was to read the words over the phone. My voice shook, and when I got to the number, I couldn’t go on. I broke down in tears.
Mom waited until I regained my composure, and still it took everything I had to say what I already knew: Katie had the speech of a 9-month-old. Her chronological age was 26 months, but expressively she was only one-third that.
Mom said, “I don’t understand. You know she isn’t talking, and kids normally talk by the time they’re one. Why does this upset you so much?”
I didn’t have the words then. I still don’t. Not really. It’s like my head knows the number but my heart doesn’t.
My heart hurts when I see exactly how far Katie must travel in order to catch up.
In the early days, Katie’s speech was quantified on a regular basis, and each time I saw the number, I wanted to crawl into bed and hide. It took me days to recover my equilibrium. It’s gotten easier with time, but it’s still not easy. I suspect it will never be easy.
My daughter now speaks, give or take, like a 3 ½-year-old. It’s hard to type those words. I’ve sat with the number for several weeks, and here’s what I’ve come to realize: the number doesn’t tell the whole story. Yes, she is limited expressively, but the number doesn’t tell you how hard she works to master new words and phrases. It doesn’t tell you how creative she is when trying to communicate, how when combined with sign language and gestures and objects, she manages to convey far more than the sum of her words. It doesn’t tell you how funny she is—or how motivated.
The number doesn’t tell the whole story.
Until next time,
Cynthia Patton
