If only someone had warned me.
When you first have a baby, you feel the intense desire to blend your experience into his. To become one with the baby.
It is hard to sit outside the door, resisting the urge to go in, if the kid is crying. Even if it is for the umpteenth time that night. Because you feel his pain, his suffering. You imagine you know what that wordless baby is feeling.
Even into childhood, you agonize over every disappointment. Even though you are, more often than not, the one who caused it.
But in the end, the comments and slights made for our ears only tend to be the most hurtful. Hearing them over the years, we parents end up having a very large chip on our shoulder, long before our kids even know they have been slighted.
You have to develop a tougher skin as a mom or dad to a kid with special needs.
For some reason, people seem to think that if a child is not 100% on grade level, he cannot hear. Or that observations, as long as they are made in the spirit of clinical or academic accuracy, do not hurt.
To refute that misapprehension, I would like to put forward a little etiquette lesson of my own, so that doctors and teachers of the future will learn some Bedside Manners.
Bedside Manners For Doctors
- Never suggest to a pregnant woman, who already has a child with special needs, that now she needs to have genetic testing, in case the second child “has it too.”
- Never assume that a mother’s intuition about what is “normal” for her child is “helicopter parenting”. Never assume it’s indigestion, when it could be a seizure disorder. Ask for video confirmation.
- In you quest to inform a patient or parent about the possible complications of a medicine, or the side effects of a surgery, try to temper your statements with words like
- “This is not common,” or
- “This medicine has been tested extensively and found to be safe,” or
- “The risk of complications is much less than the likely benefit to be gained by treatment.” Don’t scare patients and their parents away from sound and safe treatments.
- If a patient’s symptoms have subsided, to the point that your specialty care is no longer required, do not belittle the condition of the child before you, as “unworthy” of your time. At the very least, give a referral for follow up, or increase the length of time between visits at your office. Your busy schedule does not require a parent to accept less experienced care. You may unwittingly be letting the patient go without such care indefinitely.
- If a patient chooses to leave your office, do not charge them for a copy of their file. You have already been paid in full, and it comes off as retribution for leaving.
- Do not post notices which threaten legal action, i.e. for verbally harassing the staff. This is both intimidating and insulting. Any laws that protect you will still be there on the books.
- Be aware that giving a diagnosis may send the family down a very long and circuitous path. If you can give them a map, do so.
- Ask a “difficult” patient or parent for his or her side of the story before “firing” the patient. Your staff may not be telling you everything.
- Do not hide the truth from a parent, by waiting too long to refer him to a specialist, or to express your concerns.
- Be kind. This isn’t as easy as it looks.
Bedside Manners For Teachers
- Don’t categorize every aspect of my child in terms of how far from “on grade level” or “age appropriate” he is.
- Don’t pretend that my child will make progress comparable to a typical child, i.e., a year’s worth of progress or more, in a year. Set reasonable goals that he can achieve.
- Don’t repeat the same goals year after year. Look for accommodations that will allow him to do the same thing in another way, instead.
- Tell me, often and early, the possibilities for my child’s future, and guide me, so that we actually get there.
- Don’t let my sixteen-year-old snuggle up to a twenty-five-year-old teacher, as if he were still five. Teach him appropriate social distance for adults.
- As often as possible, let my child be with typical kids his own age, with enough support so that he can succeed.
- Be kind and help him to be self-confident. Call attention to what he can do.
- Forgive him, but don’t encourage him, in his challenging behavior.
- Communicate with me and never keep anything important from me. Don’t be afraid of telling the truth, and never take the side of the school against the interests of my child. I will feel betrayed.
- Check up on him after he’s gone. He certainly still remembers you!
I’m sure I haven’t covered all the bases. But I’ll bet many of these ring true. All of us could use an etiquette lesson now and then.
Can you think of more tips for doctors and teachers when dealing with special needs kids and their parents? Or perhaps etiquette tips for the parents themselves?