Sensitising A Doctor (And The World)
Recently, I took my daughter to an ENT specialist because she has developed periodic breathing, holding her breath for up to 40 seconds and then suddenly exhaling. She does it for most of the night, and it disturbs her sleep. (Try holding your breath for that long; it can be extremely uncomfortable and make you feel panicky and distressed.)
A friend who is a developmental paediatrician thought Moy Moy’s breathing pattern might explain why she is so tired during the day – she’s just not getting the rest she needs at night. He wanted an ENT to rule out any simple explanations: enlarged tonsils, say, or some other type of upper airway obstruction.
I found a doctor in one of Dehradun’s fancy hospitals who was supposed to be well-trained, sensible and highly sympathetic. I made an online appointment and, in the section of the form reserved for important information, I wrote: “Moy Moy has severe intellectual and physical impairments and will need extra patience and understanding during the examination.”
So, I was a little unprepared for his reaction when we walked in. Moy Moy was in her wheelchair, her head down, and she didn’t take notice of the doctor. He glanced quickly at her and, just as quickly, looked away, surprised. (I guess those forms are just a formality.)
Without a word of greeting to Moy Moy, he turned to me and said: “Tell me.”
I explained the situation, but before I got to the part about wanting to rule out a possible upper airway obstruction, he said, “I think you should take her to a neurologist.” (Did I detect a note of relief in his voice?) “It’s probably got to do with her brain not sending the right signals to her lungs.”
We had driven an hour across town, and I had just paid 600 rupees for this appointment. No way was he getting off that easily.
“Well,” I said. “We’re certainly willing to consult a neurologist if it comes to that, but maybe we could rule out the simpler things first? Right now I’m concerned about the possibility of enlarged tonsils or anything else that might be blocking her airway.”
Step by step, I helped him do his job. I suggested he listen to her lungs – he didn’t think it was necessary; I insisted. I asked him to look at her throat, carefully explaining first how much she hated anything done around her face. As I helped steady her head for him to insert the tongue depressor, he asked nervously: “Is she going to hit me?”
It was hard not to feel sorry for him. Although well into his 40s, he was very young in some fundamental ways. He behaved as if he was meeting an alien, one he could not be expected to understand or know how to approach. Accustomed to being the one in authority, he felt out of his depth and had to depend upon a non-medico to deal with his own patient. Competent and reassuring otherwise, he was anxious to make the ‘problem’ disappear.
I couldn’t really blame him for being flustered. But medically qualified or not, I had his illness diagnosed in a flash.
Dr ENT grew up in a non-inclusive world. His childhood was no doubt spent only in the company of able-bodied and typically developed kids, and he had missed the critical experience of having differently-abled friends. His schooling was clearly limited and lacking the variety so essential for the development of a healthy, welcoming attitude. And his adulthood hadn’t included a disabled spouse or child with special needs, nor the understanding that this late-life infusion of diversity could have fostered. Indeed, if he ever did run into anyone with a handicap (on a train platform, at a traffic light, in a hospital corridor) all the symptoms point to an experience of fear, distance or, at best, pity.
I pity Dr ENT. It’s not his fault.
But pity only goes so far. I don’t condone his behavior, nor do I accept that he can’t be expected to change. He not only can, he must. Because his patient has a right to expect a professional standard of care and not to be fobbed off to some other specialist.
As parents, one of our many roles is to help the professionals in our kids’ lives overcome their own limitations and underexposure. You will find the same nervousness and discomfort from hairdressers, dentists, tailors and shoe salesmen, and you can adapt the suggestions below to whatever situation you and your child with special needs find yourselves in.
- Consider going in without your child first. Explain the situation to the doctor and act as if he’s already on your side. “I know this isn’t necessary with someone like you – all my friends rave about your wonderful way with kids – but I just wanted to give you a heads up.”
- Do your homework before you arrive. If you have a rough idea what the doctor should be doing, you can prompt her gently. Habit is powerful. Once she steps back into her role, professionalism will usually take over.
- Don’t settle. The doctor is very likely to make a cursory look at the throat, ear, tummy, etc. and pretend he’s seen enough to prescribe. He hasn’t. You’ve come for your kid’s comfort, not the doctor’s. Insist that the examination be done thoroughly.
- Never forget your child. It’s good to educate the doc, but it’s more important to be there for your kid. Introduce the doctor to him or her. Explain what is happening at each step of the process. “Doctor ENT needs to look at your throat. He’s going to put that stick in your mouth and hold your tongue down so he can get a good look. Don’t worry, love. Mom is right here with you.”
Dr ENT never realised it while he was growing up, but Moy Moy was there all along. This is his chance (better late than never) to make her acquaintance.