At the beginning I was shocked by the stories I heard. But then with the time I realized that these stories were, sadly, quite common amongst parents who have kids with neurological disorders. At some point I set a rule for myself: don’t react emotionally when you hear these stories, but have I followed that rule? The answer is: NO!
A long time ago, the mother of a 23-year-old woman with a brain injury told me that after her child sustained the injury at the age of five, physicians told her that her child would be a vegetable for the rest of her life. The mother did not believe it and fought for her daughter. Today, this girl has grown up to be a bright, intelligent and independent woman. Yes she has some impairment, but so what? She is definitely not a vegetable!
Day after day I hear the stories like this. The most recent one involved the parents of a two-year-old child with multiple neurological disorders. Doctors told the parents: “Do not bother to give her any therapy – she will die anyway. So let her die in peace.” In other words, they were telling the parents to just give up on their child because there is nothing to hope for. These kinds of statements make me angry.
This subject reminds me of a very old movie – so old I can’t even remember the title – which has a scene where the patient is in the hospital and a priest pays him a visit. The patient starts to cry and says that he was told he has just four days to live. The priest asks him: “What would you want to do the most?” “To go home,” replies the patient. “So, just go home,” the priest says. “But I have just four days to live,” says the patient. “Who told you this?” asks the priest. “The doctor,” says the patient, to which the priest answers: “Is he a god?”
Unfortunately therapists and physicians sometimes forget that we are just tools in the hands of God. People often view medical and rehabilitation practitioners as absolute authorities who knows everything. But NO, we do not know everything. We are just messengers. The fact is, it is you who knows your child much better than any other physician or therapist. So you have to ask questions and make sure your get complete answers. If surgery is required, then find out what’s involved, what results are expected, and what are the risks? And then what you do need to do post-surgery to ensure the ongoing success of your child’s treatment?
There are no stupid questions, so do not be afraid to be a pain in the you-know-where. You are, after all, deciding for your child. To make an appropriate decision you have to know all pros and cons. Do not trust, but research. And when in doubt, push for explanations and get a second, perhaps even a third, opinion.
During my over 23 years of practice I have treated a lot of people and seen a lot of amazing outcomes with my patients, some of them a complete surprise to me. But I do know that when you work hard, believe in your patients and encourage your patients to believe in themselves – well, then sky is the limit.
There are a lot of treatments, concepts and medical procedures out there. But remember that as a parent, you are your child’s best therapist and advocate. Your child trusts and believes in you more than any other person in the world. So you must, in turn, be your child’s most ardent believer and supporter.