Any kind of personal evaluation can be stressful—a performance review, a report card, a love quiz in a checkout stand magazine—but when your child is the one under scrutiny, it reaches new levels of anxiety. “You might want to have him evaluated” surely ranks up there with “I’d like to take a biopsy” and “We need to talk about our relationship” among the phrases that launch a thousand sleepless nights. While its meaning is specific enough to leave no possibility of misunderstanding—you know exactly what they’re talking about—it’s also maddeningly, terrifyingly vague. Evaluated for what? By whom? To what end? What does it all mean? What are you trying to say about my kid?
In the moment, you may be too flustered to think of the questions you’ll soon wish you’d asked; afterwards at the kitchen table, you may find yourself at a loss for how to proceed. Then again, maybe it’s nothing—probably so, in fact. Just a passing comment from someone who probably says it to a lot of parents, stirring the pot, looking to justify a fancy master’s degree. You know your kid, and he’s not one of those kids who needs to get evaluated. Not that there’s anything wrong with those kids. Aside from … well, you know. Their Special Needs. Is that what it’s called now? Anyway, I’m glad we don’t have to worry about any of that. He’ll grow out of it. Everything Is Just Fine.
Stop. Take a breath. Getting evaluated might be one of the best things that ever happens for your child. It probably doesn’t seem that way at first—it certainly didn’t for us. Looking back, there’s a lot I wish I’d known at the time that might have helped make sense of what was going on. There’s no one version of the story; each family has its own unique experience of the evaluation and what follows, sometimes easier, often more difficult, than the journey we’ve taken. But for what it’s worth, here are a few things we’ve picked up along the way.
First, let’s unpack that loaded phrase: here’s what “getting evaluated” actually means. Someone has noticed something about your child—often a teacher, sometimes a doctor, though those visits are so short and every kid acts up at appointments. Or maybe you’ve brought it up yourself—a pattern of behavior, a recurring difficulty, a few lagging milestones, something that doesn’t seem to be going quite right. He can’t stand clothing tags, fears water, won’t make eye contact, doesn’t seem to be putting his words into sentences, won’t sit still for circle time, seems kind of “floppy”—that sort of thing. Maybe it’s nothing, but maybe it’s something. The next step is to check in with someone who knows how to tell the difference.
The evaluation itself can happen in a few places: a doctor’s office, a private clinic, the Board of Ed. It can include oral questions, physical tasks and exercises, sensory tests, and of course the all-important parental questionnaire and interview, during which you feel like an idiot for not remembering how old he was when he started using two-word phrases. The result of the evaluation isn’t necessarily a diagnosis of something; the goal isn’t to put a label on your child, but rather to identify specific areas of difficulty that may be interfering with his day-to-day life at school and elsewhere, and to make recommendations about how these difficulties can be addressed.
And that’s what it’s all about. That’s why this is good news. From the moment your child is born, all you want to do is teach him, support him, help him develop the skills to pursue his dreams, prepare him to achieve success however he chooses to define it. What “You might want to have him evaluated” really means is, “I think there’s an opportunity to learn more about him and find new ways to help him.” It’s not a magic spell that somehow changes your child into someone else—some impostor with Special Needs—but it might just have a powerful effect on his future.
There’s always the possibility that the evaluation comes back along the lines of, “Nothing worth mentioning; proceed with your previously scheduled childhood.” In which case, you’re off the hook. Aren’t you glad you dealt with it instead of fretting and wondering for the rest of your life every time he had a bad day?
The other scenario is that the evaluation does find things worth mentioning. Even without a formal diagnosis, you might hear terms like Attention Deficit Hyperactivity Disorder (ADHD or ADD), Sensory Processing Disorder (SPD, formerly known as Sensory Integration Dysfunction, or SID), Asperger’s Syndrome (which falls under the umbrella of Autism Spectrum Disorder, or ASD, as does Pervasive Developmental Disorder—Not Otherwise Specified, or PDD—NOS) … jeez, what committee in Geneva is responsible for keeping track of all these things? It can all seem arbitrary and made-up—I know it struck me that way at first—except when it’s right on the money (in our case, auditory processing disorder, a variation of SPD, kind of a hearing version of dyslexia). Then the fog clears, and so many things begin to make sense: why he has a such hard time paying attention, or dealing with noisy environments, or holding a pencil the right way, or engaging in two-way conversations. And why he gets so frustrated when no one else seems to understand what’s wrong.
Most importantly, the evaluation gives you things to do about it. The recommendations usually include services like physical therapy, occupational therapy, and speech therapy. These are provided at no cost by the city (your taxpayer dollars at work!) under the framework of an Individualized Education Program (IEP), which is administered through the respective bureaucracies for Early Intervention (EI), the Committee on Pre-School Special Education (CPSE), and the Committee on Special Education (CSE), depending on age. If your own school is unable to provide the specified services, you can be reimbursed for private therapy through a Related Services Agreement (RSA). If you feel the IEP is off the mark, you can try to get it changed, and you’re also free to reject it entirely.
Sometimes they’ll recommend that your child join a Integrated Co-Teaching class (ICT, formerly known as Collaborative Team Teaching, or CTT), either at your current school or elsewhere if it’s not offered there. These are led by both a Gen Ed teacher and a Special Ed teacher, though they play more or less identical roles in the classroom, and no distinction is made between Gen Ed kids and IEP kids on a day-to-day basis; it’s more about having both sets of expertise in the room, and also having an extra adult to keep things running smoothly—gotta love that. Sometimes they’ll recommend a Special Ed class, which can come in several configurations of teachers, aides, and students in the classroom to provide the right level of attention and support for each kid. In any of these environments, the evaluation and IEP provide key guidance for your child’s teachers—how to understand their behavior and the challenges that might come up, where they need special accommodations (anything from sitting at the front of the rug to hear better to being allowed to lean against a wall to compensate for low muscle tone).
This all assumes that your child attends a public school; the state is required by law to meet your child’s educational needs in a developmentally appropriate way, or words to that effect. Private schools face no such mandate, and don’t have to work with special needs kids, though many do, and some specialize in it. Bottom line: there are non-public options and resources as well, though not as standardized. More money, less bureaucracy, same basic idea.
Over time, you begin to get used to the world of special needs. For one thing, you discover that it’s a lot bigger than you thought, inhabited by many of the same kids and parents you’ve been seeing around for years. You meet therapists and educators trained to give your child exactly the kind of help he’s needed, remediating what can be remediated and teaching him ways to cope with and compensate for the rest. On a fundamental level, you see just how empowering the evaluation was, replacing uncertainty and confusion with knowledge, understanding, and a way forward.
And slowly, gradually, things start changing. He’s still the same kid you’ve always known and loved, but now growing and learning in new directions, less frustrated, more confident, better able to reach his full potential. At the same time, you’re less frustrated as well. You understand his challenges, and you’re better able to help him overcome them—which is another way of saying, you’re becoming a better and more effective parent.
It’s not all roses, of course. There can be a few near-misses (and not so near) on the way to the right understanding of your child’s situation. Some evaluators and therapists are better than others; some schools will be better equipped than others to meet your child’s needs, both physically and professionally. You‘re responsible for doing your own research, managing your child’s case, and advocating for his needs, sometimes to the point of hiring a Special Ed lawyer and going head-to-head with recalcitrant bureaucrats. After-school therapy limits playdates and other extracurricular opportunities, and home exercises take away time otherwise spent with siblings or Legos. As your child gets older, he may wonder why he has to do all these things, and he may not always (or ever) want to do them. With clinical language coming out your ears, it’s all too easy to pathologize his personality and see everything he does in terms of symptoms and syndromes. Remember—sometimes a rough day is just a rough day.
The main thing is not to lose track of the kid you started out with. The evaluation doesn’t define your child—it just describes certain aspects of his development to date. It’s not a moral judgment or a judicial sentence, and it has no bearing on his worth as a unique, loved, and blessed individual in this crazy world we all share. Special needs might affect your life in a number of ways, but at the end of the day, you’re still doing the same things as every other family: celebrating each other’s successes and victories, helping each other through the setbacks, and making a life together. And there’s nothing wrong with that.
Dan Janzen
