“Have you tried Cognitive Behavioral Therapy?” he asked. I tried not to sigh. After all, he’s busy, and we only saw this doctor 3 weeks ago. Plenty of time for the details to slip his mind. Except that he asks me this question every time this subject comes up, and forgets that he was the one who wrote us the prescription for the Engineer to start therapy 2 years ago. He talks to us with his fingers chattering on the keys of the computer, so I know there’s probably a ream of notes in there saying the same thing over and over.
“Yes. After a month the therapist told us we were wasting our time,” I said yet again, a mental running tally going in my brain. I can predict his next question: “why did she say that?” I’m impatient – sitting in the exam room with 3 bored kids for 40 minutes does that to me. “He wouldn’t talk to her.” And since that’s the whole point of CBT, yup, total waste of time and money.
“Well, maybe we can try again.” I restrained myself from rolling my eyes. I should be glad that the Engineer’s doctor is listening to me. I just wish I didn’t have to keep repeating the same thing over and over.
Can you hear me?
I’m not sure what it is about childhood disorders and doctors, but I find that most of the doctors don’t actually listen to me. I can walk into the room and tell them I’m concerned about the Engineer’s anxiety, and they totally tune me out until I start spitting out the life-altering consequences of his anxiety. Hey, listen up! I LIVE WITH THIS KID! Take me seriously!
Take this visit. After discussing my concerns at the Engineer’s wellness visit (which, incidentally took me 3 months to get in) the doctor tossed some ideas my way and waved me off. I pressed for more options – after dealing with this kid’s anxiety for 6 odd years, it’s time for solutions.
Now, at this follow-up appointment, the doctor acted like none of the stuff we’ve discussed before mattered. Suddenly, my definition of anxiety was being questioned.
Here we go again
So, being the problem solver that I am, I launched into an example. I’ve learned to elaborate. To give them plenty of details to hammer home the fact that yes, I know what I’m talking about. The Engineer narrated some of it and filled in questions that I lobbed his way. He explained to the doctor how he felt when he was worried about visiting the planetarium. How he went to the bathroom over and over, terrified that he would have to pee during the presentation and be locked out.
The keys chattered as we talked – all of our details being logged into the system so that they can be ignored on the next visit. After all of that explanation, the doctor turned to me and asked “have you ever tried preparing him for events with a social story or a video?”
Really? You think THAT’S the solution?
I looked at him. The words I wanted to say and the words I needed to respond with collided in my head and tangled, leaving me with an open mouth and slightly stunned expression. No, we haven’t done social stories. Because I never know what’s going to trigger him – it could be something new or something he’s done many times. And if I give him too much information, the Engineer gets bogged down worrying about details, or about things that don’t go according to plan.
I stuttered my way through saying that – which felt a lot like justifying our choice.
I know social stories are a valuable tool. They help the kid learn to cope, and ease fear and anxiety in unfamiliar situations. But what are you supposed to do when it’s a familiar situation and the child is exhibiting anxiety? When they know what’s coming and they want to avoid it? When they don’t tell you they’re anxious until right before the thing that is causing the anxiety?
This isn’t a new problem
Here’s the thing – this is not a new problem. In fact, it’s the same old problem that I mention every single time we discuss areas of concern. But no one takes it seriously. No one actually listens – or they don’t remember. It’s frustrating. It’s a waste of both of our time. Worse, the kid who needs help isn’t getting it.
Not on my watch. This is what they mean about being your child’s advocate. Telling the same story over and over, explaining his life to the doctor. Defining the problem again and again so that someone will take us seriously.
Learn to be the squeaky wheel, parents – because you’ll be squeaking for the rest of your child’s race to maturity.