That was an exhausting 90 minutes.
From a special educator's perspective, that was a fantastic IEP meeting. Everyone talked openly about concerns and desires, mutual agreements were reached on goals across all domains, and the child self-entertained quietly throughout the duration of the meeting. Progress has been made and recorded, and goals are set for the new year. What a winning situation!
From a parent's perspective, that was a little bit soul crushing. My 4-year-old (in 10 days) daughter is no longer functioning on a 9-12 month range as she was at this point last year; now she's in the 12-15 month range. She's progressing across all domains, but at an excruciatingly slow rate. There was a lot of discussion about, but very little change to, her goals from last year, because she only met about 50% of them in the last year and some of her previous goals were deemed "too lofty" to maintain for the next year, so they had to be scaled back. Her primary objective for the last year, which was for her to be able to communicate with others, is nowhere near achieved. I can't imagine any possible scenario in which she will be able to enter kindergarten on schedule, and I have no idea what the long-term indications are of her slow progress.
As an educator writing an IEP, you set goals that you believe are attainable within the next year but that will push the child to grow. As a parent, the goals that are set for the next year feel a little bit like a promise. To see it written on paper that "C will kick a ball" in the next year, then to be told a year later that she will not kick in a ball in the NEXT year but will now be working on the smaller task of "stepping over small obstacles" feels like a promise broken. It's no one's fault that C didn't meet her goal, nor is it anyone's fault that she has less than zero interest in kicking balls so that goal had to change, but to have to see it scaled back to a smaller goal for next year after she spent the last year working toward it... Well, it hurts.
I have to focus on the positives. C made progress in all domains. She is now functioning at a higher level than she was a year ago. Her specialists have found that, with loads of repetition, C eventually understands what is expected of her in her school tasks and can complete them with little support, but she needs that initial bombardment of exposure and repetition to have a chance.
Even while focusing on the positives, I am haunted by a voice resonating in the back of my mind: "C is completely unaware of dangerous situations and requires 100% adult supervision in all tasks." The world is a dangerous enough place when you're prepared for it, but my child is fearless. She doesn't feel physical pain. She would happily chase a yellow ball that was rolling into a burning building or walk out in front of a moving vehicle. The world is an especially dangerous place for her, and she requires CONSTANT supervision. I don't know if that will change over time, if she'll learn about life's hidden and not-so-hidden dangers well enough to be able to avoid them. I don't know if she'll have to be supervised for her entire life in order to keep her safe.
The worst thing about the unknowns of C's medical conditions are the uncertainties about long-term implications. No one can tell me what to expect. There are no studies to consult, no statistics to recite, no parenting books from others who have been through it... Because, quite frankly, no one else has been through it. At least, not in any recorded state. My brother and I are medical groundbreakers, with more information on our children's abilities and conditions than even the geneticists have. We're going in blind, our paths lighted only by the unbridled love we feel for our incredibly unique children.
I know now why I was nervous going into today's IEP meeting: I knew what I was going to hear. There weren't going to be any happy surprises. I wasn't going to learn that she was making up for lost time at a spectacular space, or that she secretly could speak and just wasn't doing it at home. I knew progress had been made, but that it was only in baby steps over the past year. And that scares me about what the next year will--or worse, won't--bring.