Image: Rasmus Thomsen / FreeDigitalPhotos.netThe Mouse left a comment on last week's column where she mentioned that her son's doctor and their province declared him "normal-enough." Which was not "enough" for her, and led her to pursue (and pay for) private occupational therapy for her child.
And I think I sprained something in my neck from nodding so hard at "normal-enough." That's so perfect. We've also been told that. And no, it's not enough for us, either.
Noah officially entered our country's Early Intervention program (EI) at 23 months old. By their third birthdays, children still receiving services through EI undergo transition testing to determine what they should continue to receive from the school district.
We did not undergo transition testing, as Noah was declared "normal-enough" just three months before his third birthday.
Normal-enough on the basis of speech only. Normal-enough in that his articulation and grammar acquisition were still technically delayed, but he seemed likely to "catch up on his own." Normal-enough in that his myriad of sensory issues simply made him "quirky," but were nothing that would "impede his success in a mainstream preschool classroom." Normal-enough in that despite hundreds of red flags flying all over the place that his speech delay was just the tip of the developmental iceberg, we were told exactly what nervous, inexperienced parents want to hear: He's fine. He's cured. Now move along.
The next year he proceeded to give back every advancement he'd made during his time in Early Intervention and regressed in other areas too.
And it wasn't just that they were "wrong." It was that they also had different expectations about what was "fine" and "enough."
I'm still angry about it, about what happened (and didn't) in that crucial, critical year. I'm angry at "They," even though I know that They were good people who worked really hard and cared about what They did and the children They worked with and They made an easy mistake and missed what was really going on behind Noah's speech delay. They made a judgment call and compared him to dozens or hundreds of other kids who were very likely worse off. Look at Them, They said. Compared to Them, he's fine. He's normal-enough.
But I'm really glad I learned that lesson, that distinction: Some EI and special education services are only designed to get your child halfway there. Hooked onto the bottom rung of the ladder; the lowest common denominator. It's not anything anyone is doing wrong or anyone's fault...it's just what happens to overloaded, overworked systems.
I'm glad I learned that lesson by the time we had our first IEP meeting, where I once again met with hard-working, well-meaning women who cared deeply about their jobs...but who were honest about their limitations. A good dozen of our concerns were nicely lumped in the category of "We're Sympathetic, But We Can't Really Help You With That."
Noah's speech was, again, considered to be normal-enough, even though I felt that a lot of his behavior problems were in fact stemming from his inability to organize his thoughts into clear sentences and talk to other children. But the school district was adamant that he did not meet their standards for receiving speech therapy, even though we had multiple private evaluations that disagreed. The fact that he couldn't use a fork or a spoon was not academically relevant, though I knew he was already getting teased about it and lashing back at kids who mocked him. His motor-planning and coordination problems were not severe enough to cause regular falls down school steps, so therefore: normal-enough. So after wrangling everything we realistically could from the district, we hightailed it back to private therapy to plug the holes. He's just ... capable of so much MORE. So much more.
And honestly, if I could tell fellow special-needs parents one thing -- if I could grab the shoulders of every mother whose world has just been knocked askew by a scary new diagnosis and tell her just one thing -- it would be to never, ever stop believing in (and fighting for) the unlimited potential your child has for great and marvelous things. And sometimes that means looking at the expectations laid before you by the system and saying, "Nope. Not good enough."