Blindsided!

When our son Tim was in second grade, my husband and I happily trotted off to meet with his teacher in October. We were confident that we’d hear the usual stuff we’d heard since preschool: “He’s a delightful kid. He’s smart, articulate, funny, and kind.” We were not in the least worried about him, and we loved this opportunity to revel in his successes.

So when his teacher started talking and was not in fact saying all those things, we were stunned. Tim is smart, funny, and delightful, yes, but guess what? He can’t read, she said. When the other kids were doing silent reading, Tim was right there with them, cuddled on the floor and holding a book upside-down.

“The fact that he’s so bright and can’t read is the sign of a learning disability,” she said.

I immediately burst into tears.

It really shouldn’t have come as such a shock: I had questioned his first-grade teacher about why he wasn’t reading, but she had assured us that it was all developmentally normal — he’d be fine. But we were caught off-guard nonetheless.

Before we could even catch our breath, the teacher was walking us down to the principal’s office, asking that our son be tested for a learning disability. And so began our journey into the world of learning disabilities. We had a lot to learn.

“When parents are thrust into the whirlwind of special education, it can be confusing and scary,” says Alison Greene, a special education advocate in Northampton, Mass. She encourages parents at this stage to get emotional support, ideally from another parent who has been through the process. “It can be a devastating time — parents are often frightened, confused, and sad. Sometimes they make bad choices when they’re in the throes of it. Reaching out to another parent can help steady the newcomer.”

Parents also need to find someone in the school system to explain the evaluation process their child will be going through, says Greene. She recommends starting with the school principal. “I find that many parents have never even talked to their child’s principal,” she says. “The principal knows how the system works.”

Realistically, no parent should expect to be an instant expert in evaluations, learning disabilities, and special education, adds Greene. Don’t beat yourself up if you don’t know which tests to ask for. It’s enough to say, “My child isn’t reading,” and the professionals should be able to start the process of testing.

We were lucky, in a way, because our son’s teacher was the one who noticed the problem, and she knew exactly what to do next. When we all paraded down to the principal’s office, we were handed a form to sign — the teacher checked off a couple of things they would test for, and we numbly signed. To be honest, we had no idea what we were agreeing to or what questions to ask.

“Parents shouldn’t be afraid to put a temporary halt on the process if they’re uncertain of what to do or if they haven’t found the support they need,” says Greene. “Take the time to do a little research about the disability as well as on [your child’s] rights in special education.”

Be prepared!

If you find out your child may have a learning disability, don’t panic. There is a process in place for testing your child and determining if he or she has an LD and what kind it is. Here are some tips for surviving those first days.

• Take a deep breath: You don’t have to do anything on the spot. If you’re not sure what you want or have to do, tell the school you need a few days before making any decisions.
• Testing, testing: Find out exactly what testing the school will be doing on your child. Schools are required to test in all areas of the suspected disability, so talk to the teacher and really get a sense of where the problems lie. Does your child have difficulty writing? How is his or her speech? If there are concerns, they should be included in the testing process. And don’t forget about things you notice at home (behavioral issues, etc.) — all the facts you can think of might be relevant in diagnosing your child’s issues.
• Go for pros: Do not be shy about asking who will be doing the testing and what his or her qualifications are. If you are not satisfied that the tester is proficient, ask for someone else.
• Know the law: Federal law (IDEA 2004) outlines special education requirements, but each state may have variations on the law. It helps to know what your state says about testing and independent evaluations.
• Parent to parent: Ask your child’s teacher if he or she can hook you up with other parents who have been there, done that. Many districts have organized parent groups for special education, which are a great resource for the beginner.