Disability advocate and Twin Falls, Idaho, resident Michelle Nielson, 41, shared the story of her stepson’s struggle with ADHD with Jordan Lite.
My 12-year-old stepson, Chase—I consider him my son—was diagnosed with ADHD in kindergarten. He wasn’t like most kids who’d sit in their seat and follow direction. He was always getting time-outs, always in trouble because he couldn’t control himself. He was hitting other kids. When you’re told your kindergartner is suspended, it’s devastating.
We’d just thought, he’s a rambunctious little boy. We didn’t know much about ADHD. But his mom and I were all on-board for medication after his diagnosis. It was really hard to convince his dad—who wants to put their child on medication in kindergarten? But thank God for it. I never thought I’d say that, but to see Chase medicated and non-medicated, it’s two different children. You can tell the minute it kicks in: He goes from bouncing up and down and not following directions—he can’t even complete simple tasks without prompting—to being focused and calm. He can process thoughts; he can do his homework. It’s a whole different world.
He also has oppositional defiance disorder (ODD). A lot of kids with ADHD have that, too. (Other conditions that may accompany ADHD include learning disabilities, conduct disorders, bipolar disorder, Tourette syndrome, anxiety and depression, according to the National Institute of Mental Health.) He gets very defiant, very argumentative. If you’re asking him to do something and push him too hard, he’ll develop a real bad attitude and get real angry: “I’m not doing it, I don’t care.” He doesn’t display that very often—it’s the lesser problem. But the medication treats both and helps manage it.
It’s getting better, but it’s been a really long road. School is the worst, trying to explain that this is a disability and not a behavior problem. People treat a child in a wheelchair as disabled because they can see it. With a hidden disability, if you can’t see it, [a lot of people think] it must not be real. What you see is the hyperactivity, the impulse-control issues. That all seems like a behavior issue. But underneath that there are learning disabilities, developmental delays, depression—so many other things going on that you don’t see. You have to remember this is not his fault; he cannot control it. You want to protect your child, but have him held accountable for things, too.
Chase is mainstreamed, but he needs little things from his teachers: to remind him to turn his homework in, to make sure he has his books in his backpack and his homework written down for us because he can’t retain that information. If the teachers don’t think he’s focused, they need to tap him on the shoulder and say, “Get back to what we’re talking about.” We want to set him up to be successful, not to fail.
He requires consistency, schedules. We write things on a dry-erase board: time to take a bath, etc. He follows that routine and it works really well. Before, we’d fight. But we’ve learned to ask him not to do homework the minute he gets home from school. He needs to come home and reboot. We break down homework to 10 minutes at a time, taking a break in between then coming back to it.
He’s been on the same medication since 2nd or 3rd grade. It curbs his appetite so he goes all day without eating and then eats from the time he gets home till he goes to bed. The doctor says he can eat whatever he needs. He’s really tall and thin, so we don’t let him eat a ton of candy and junk food. But if he wants three hot dogs he can have them. He’ll eat four or five corndogs in one sitting!
We’ve always been educating him about how his brain is different, why he’s taking medication. [The precise causes of ADHD aren’t clear, but research suggests that development of areas of the brain responsible for attention and planning is three years behind in children with the disorder. Those who are affected have trouble paying attention, remembering information and controlling their behavior.] Chase knows there’s nothing to be embarrassed about. Early on, it affected him having friends—he knew he had this poor impulse control and couldn’t stop himself from reacting if kids were mean to him. He knew that was because of the ADHD and that caused him to back away from people.
Now he says, “This is who I am and kids are going to like me or not and not care if I have ADHD.” He’s able to accept his diagnosis and is willing to let other kids know what’s worked for him. There are a lot of kids with ADHD in his school, and in the line of work I do as a disability advocate I met a lot of parents going through the same thing. I’ll ask if he wants to hang out with their children and he’s always cool with that. He enjoys when other kids with ADHD come around because they have something in common. He’s aware he’s not in this alone. We’ve had to change the way we come across to him. We try not to come across as nagging, but calm and supportive and encouraging. We find one thing Chase has done every day and praise him about it. The difference we’ve seen in him is huge since we started doing that.
I am so much more confident as a parent now. We’d internalized this societal perception that, “your child is like this because you’re a poor parent.” It’s nice to have the frustration we feel validated, and to learn there are ways to make this successful. I love to talk to other parents of kids with ADHD and reassure them, “This is not your fault.” You cannot take on that responsibility because it will eat you up. Having the knowledge that it's not your fault or his gives you a lot more confidence and makes you a better advocate for your child.
A version of this story originally appeared on iVillage.