I don't want him to hate his disability, but that's his choice

"He told me he hates cerebral palsy," I said to the pediatric neurologist. "Max, do you have anything you'd like to add?"

"NO!" said Max.

We were at our annual visit, and Max wasn't excited about it. "I'm not sick!" he reminded me as we headed over. He was happy to let the doctor know he planned to move to Orlando, and even showed him the big house he'd like to live in with Dave and Ben. (Sabrina and I are not part of is moving plans.) Then Max said a word and I had no idea what he was saying. He kept repeating it.

"Max, use your iPad!" I said.

He wouldn't.

"Max, type out the word on my phone," I said, holding it out to him.

Nope.

I told the doctor that these communication stand-offs happened frequently—Dave or I wouldn't know what Max was telling us, and he'd refuse to type it out.

Max kept saying the word, growing increasingly frustrated.

Doctor C. started talking: "He is in the process of identity formation, and at the point where he is trying to figure out how he is like and not like other people, and it's possible he thinks that using the iPad so people understand him makes him feel lower than his siblings," he explained. "It's a power struggle, and he doesn't want to give in and use it. He wants to feel more powerful than his condition."

Ah. That made sense. "Max has to understand that like all of us, he has his deficits, and he has to be smart and work around them or be stubborn and be stuck," the doctor said. That made even more sense. Suddenly, I was seeing Max's refusal to communicate through an app in a whole new light.

"Max heeds help understanding that he can use the iPad for power," Dr. C. continued. One thing he suggested: Create a "pissed off" page. Now, encouraging your teen to let you know just how annoyed they are with you is not something most parents want, but it seemed like exactly what he needed.

So this weekend we'll be working phrases like "You're annoying me!" and "Leave me alone!" into his TouchChat app, along with any other choice sentiments he'd like. (I am going to draw the line at "Eff you, Mom!") The doctor also suggested we could try a tech day at home in which we all communicated using our devices, so Max could feel equalized.

Max just wants to fit in, as teens tend to want to do. But when I hear that he hates CP, it's painful ttpto hear. Nobody wants to see their child struggling. Plus, I don't see Max as being so different from his siblings. Yes, he has more physical challenges and doesn't speak quite like they do, but every one of them has their special needs.

I've come a long way in my journey as the parent of a child with disabilities, passing many emotional landmarks along the way: grief, hopelessness, despair, anxiety, fear and frustration. I have gotten to the point where I see the CP as one part of who Max is, not all of him. But Max's journey is his own, and I have to accept that there are times when he will feel negatively towards his disability. As one adult with disabilities commented on a recent post, "We get tired of all the appointments, pain, surgeries and missed chances, even as we recognize that who we are is often intrinsically tied to our condition."

At the end of our appointment, I mentioned that in October we're going on a Disney Cruise. Max noted that we were going to have some Halloween fun on it. Again, Max said the unintelligible word, but this time he said it in a new context and I got it. He was saying, "It's my favorite holiday!" When he'd been saying the word before, he'd been noting that Sabrina and I could come visit him there during holidays.

And so, my journey continues. I have to figure out how to best support Max at the times when he struggles with the realities of his disability, or downright hates it. I have to help him see that we all have our challenges and that we can work around them. And Max's journey continues, too.