My son was in kindergarten when my heart first told me something was wrong. I started asking questions. I was told he was completely normal. My heart kept telling me something was wrong. I kept asking questions. And the road I was on suddenly diverged into two distinct paths. Those who cared enough to help me and those who didn’t.
I bounced around between these two paths, trying to find my way, trying to know whom to trust, whom to seek out for help, whom to follow. The harder I tried to do the right thing, and follow the right path, the more I stumbled and fell.
When my son was in seventh grade, he crashed, emotionally and academically. I stumbled along and reached out to another diagnostic agency. I sat in the office of Watson Institute in my son’s evaluation interview and, with tears in my eyes, I told them that if they didn’t help me, I was going to lose my child either to suicide or to his ever increasing risky behaviors. They listened. And they helped. They diagnosed him with uncommon disability issues that finally made sense for his difficulties. They recommended a cognitive behavioral therapist to treat his depression “from not being properly accommodated” at school.
At the same time we started therapy with a good therapist who cared, I met the woman who handles disability issues at my local school district’s high school. I had no reason to trust her, because I had had my son tested through the school district when he was in first grade and had been lied to about his test results. I had been told he had no disability, despite the fact that he qualified under our county intermediary standards. But she seemed to care about her job and I was desperate for information. I started asking questions. She helped.
Slowly my son’s school began to realize what he needed at the same time I began to understand what I could ask for. I began to have hope. I began to believe.
The problem, though, with believing when you are the parent of an LD kid is that you aren’t the one that has to believe. Your child is.
My son has never learned to believe. I have thought, during the last two years, that there were times when believing was within his grasp. He finally has all the tools available for him to have a real chance to level the playing field, but he still can’t find his way onto the path I plowed for him. He is an angry, desperately unhappy, floundering mess and I am helpless at this point to influence him. He may someday get it together, but it will be too late for his best opportunities. He may also never get it together, and that possibility is just a little too much for me to bear.
I’m sharing this because I want other parents of LD kids to know that you have to keep testing your child until the answer you get makes sense. You have to keep asking questions until you understand what your child is entitled to. And then you have to demand what he is entitled to, no matter how many people try to keep your child from getting the help he needs. You have to keep advocating for your child every day, no matter how emotionally exhausting it is. But just as important, you have to win these battles before it’s too late. Before your child is in middle school and is too ashamed of what his peers will think to ask for help. Before your child doesn’t believe you when you say there is always a compensation, we just have to find it. Before your child wanders into adolescence alone and afraid and not believing in himself. The path to finding out what is wrong can be long and challenging. But don’t let anyone tell you it isn’t a race, because it is. It’s a race you have to run every day from the moment your heart tells you that something is wrong. And, most importantly, it’s a race you have to win at any cost.
For help with LD issues, please contact the National Center for Learning Disabilities and your local bar association (they can direct you to legal help regarding your child’s rights).