My son doesn't have autism, but boy do I know this conversation. I know it because we had it with Javi shortly after he was first diagnosed with ADHD. Many parents want to shield their child from knowing that difference exists, that their child's nuts-and-bolts don't work in the same ways as "normal" children's do. We, on the other hand, decided that knowledge was power.
Of course, Javi's life was never as sheltered as Max's. There was no posh special-needs school or one-on-one coach. There was no stay-at-home mom or large, extended family. There was just us. My husband and I sifting our way through overwhelming amounts of literature and opinion (both informed and uninformed) about the disorder. My son slogging through torturous days of being the class scapegoat, anxiety attacks, meltdowns, and exclusion. He was young, but I could picture how his adult self would look back on these formative years and see no happiness, no joy, no moment to cherish.
Yes, it sounds dire. It was dire. My kid, the one I'd promised to protect always, was flailing. I could withhold the reason, or I could explain it. I decided that if the situations were reversed, I would want something tangible, something whole, to grasp onto. I would want knowledge. I would want any answers to Why?, and badly.
So we told him. We explained that the reason he can't sit still and blurts out answers and runs and jumps and climbs and talks a mile a minute and doesn't hear us when we're speaking and reads sentences out of order and gets angry over nothing ... all of it, the whole roller coaster ... is because his brain works differently than many other kids' brains.
He thinks differently, makes decisions differently, behaves differently ... because he's a little bit different. Where other kids can sit and watch, he must stand and do. Where other kids can wait to speak, his thoughts are a speeding train that must exit. And therefore, he just has to work a little bit harder.
Just sit, just wait, just think when he wants to speak, just underline and just highlight and just number when other kids just read. We raised our hands, palms up, and shrugged. This is just how it is. Just just just. Nothing to be done. Nothing wrong. No one to blame. Nothing to be embarrassed about or ashamed of. It just is.
The conversation came and went. The child listened and asked questions and negotiated (because that's what he does). And we gave the whole set of behaviors and symptoms a name. Not a label, but a name that he could point to and describe. We made it tangible so that he didn't walk around thinking that he was his disorder. He is a precocious, brilliant, silly, strong boy who is growing into a fantastic young man who makes me proud. He also has a disorder that makes him think and behave differently from other people. It's part and parcel.
And now, years later, my son has a whole vocabulary to use when speaking about how ADHD manifests in his life. He talks about hyperfocus, organizational skills, social skills, impulsivity. He uses those words. He makes lists of things to address in therapy. He talks openly with his pediatrician about how his medication is working (or not working). He is his own best advocate -- and I began giving him the tools he needs with that conversation.
But being completely honest, there are things I wish we hadn't said. If I had a do-over, we wouldn't have focused so much on the downsides. I pointed out the behaviors no one likes and gave them the ADHD tag. We talked about excessive talking, excessive movement, impulsivity, frustration. We left out extreme creativity, innovative thinking, and extreme compassion. Much of our time now is spent pointing out the upsides of having this disorder, but that touchstone conversation contained no positives.
I would also have shared how many really cool and inspiring people have the same disorder. People he admires, even. Michael Phelps, Justin Timberlake, Jamie Oliver, and Will Smith. His grandmother, his biological mother and father, and me. His uncle and his brothers. The principal at his school. Two of his best friends.
Having ADHD is as normal as childhood gets these days. I want him to know that. It's not a crutch or a punishment. It's just another facet of this thing called life. And I'm proud of him. If he knows all of that, I'll consider our job well done.
Have you told your child about his/her disorder(s)? Why or why not? How did the conversation go? Have you blogged about your talk? Post a link below!