"Thank God I Have Normal Kids!" (& What I Do When That Illusion is Shattered)
Working in education for a long time, I've worked with many kids, probably had contact with hundreds, all great kids, but not a single one of them normal. Let me clarify, I have come to believe that there is no such thing as normal. Kids are individuals, just like the rest of us, and that being the case, they each come with their own unique set of characteristics and quirks, that make them uniquely who they are.
So perhaps a better way to describe my thankfulness, is that for roughly 15+ years, I have, with my wife been in the process of raising two beautiful girls, who are well-rounded, good students, who have friends, have their health, and were generally issue-free and low maintenance. Does that mean raising them has been easy? Absolutely not. I have, however, over the years, been thankful that my kids haven't had any serious struggles, like a lot of the kids I've worked with in the schools, and at SOAR.
My sense of normalcy was shattered over the past few weeks. One of my kids was diagnosed with an eating disorder. What started out over months, as healthy eating, turned into restricting calories, and exercising a lot. It turned into not eating, and fighting over meals. I won't get into the nitty gritty, but the diagnosis was Anorexia Nervosa.
I won't say our world was turned upside down, but I knew we had to relinquish control to the professionals, the experts, and trust that they know what is best for our child, in much the same way parents turn to the folks at SOAR in faith, that they know and will do what is in the best interest of their child.
What follows is a generalization, and in no way intends to condemn the entire medical profession, but I am pissed. You don't have to be a counseler, therapist or psychiatrist to know that eating disorders have a psychological origin that has to be addressed, for recovery to begin. This is what I have witnessed so far, knowing that each incident of all my child's needs not being met, is, no doubt, being billed, heavily.
The doctors, and the interns all see us on " their rounds", which means after a day or so you can't keep track of all the doctors, other than to refer to them as " The lady doctor" or " The doctor with the beard who obviously goes cas on Satyrday" Every doctor comes in, after reviewing the chart, and my daughter's vitals, giving us all an update that lasts a few minutes at best. Some come in and actually have the gall to say that they "don't have any new information", and leave within a few minutes, leaving me with the realization, "damn, they just charged us for that?"
I question my daughter's treatment, which consists of vitals checks, eating and repeating. I say to the doctor of the hour that I feel that there is a psychological component that isn't being addressed here, that I feel is vital to my daughter's recovery process. Now I sound more like the doctor than the doctor. The doctor's response, " Our system, unfortunately isn't set up to provide that. Your daughter is in the hospital for nutrition and medical stabilization. I wish we were set up to do more, but unfortunately we aren't." He went on to tell me the sob story of how the psychiatrists at the hospital were extremely stretched and over booked, and proceeded to tell me how the kid who was diagnosed with Leukemia yesterday takes priority.
This is what I have come to expect of the bureaucracy of the public sector, but not of medical professionals with years of training in the double digits, and undoubtedly salaries in the six figures. I begin to think of that old expression, " You get what you pay for, " and how it obviously doesn't apply here at this hospital. In fact, I know we are going to be paying through the nose, for what I'm uncertain. I'm not sure if I'll be able to stomach the itemized bill.
My daughter's day consists of ( when I am there to witness it) reading, watching TV, playing an occasional board, game, an occasional crafts class, a wheelchair ride to the roof garden or the main lobby, neither of which have any entertainment value whatsoever.
She is supervised around the clock with personnel referred to as "sitters". These folks are not full- fledged nurses, though they are trained to check vitals, whose job it is to monitor my daughter around the clock, to make sure she doesn't do anything she isn't supposed to do. I won't get into the specifics of that, as they haven't really either.
She is bored, and tired of eating what she considers to be less than healthy caloric-high foods, to get her weight and her vital signs back to normal. What these medical professionals are neglecting, in my professional opinion, is the " whole" child. I mean they are a children's hospital for cryin out loud. Isn't this stuff in Psych 101?
These sitters, watch TV with her, check her vitals occasionally, and praise her for doing a good job eating. They offer nothing more than that and it is obvious that they aren't trained to do so. I can't wait to see what their services bill out to.
She has been a good sport for a while, but on day 6 of her hospital stay, she is having a hard time with them increasing her calories and portion sizes each day, to well what is beyond normal, because that is what is needed to get her body back to physiological health. She is sick and tired of eating huge portions of food, and while she doesn't say it in these exact words, is sick and tired of them stuffing her full of food without even glossing over the underlying problem.
Her primary care doctor for eating disorders rationalizes that until my daughter is well-nourished, she isn't necessarily thinking clearly, and thus, wouldn't benefit to the fullest extent from therapy.
I often take a little bit to process information, so my comebacks aren't always what I would like them to be. Though my training doesn't have an ounce of medicine in it, beyond my high school biology classes, as an educator, someone who works intensely with children, it is my professional opinon that this hospital, these doctors are half-assing it. Whether intentional or not, they are not, and have not been considering the "whole" child and what the " whole" child needs, like we do at SOAR, and the Academy at SOAR.
The result is, that my daughter's vitals are almost normal, so we suspect they will say she is " ready" to come home very soon. We know, and it's not brain surgery to figure this one out, that when our daughter texts us, when we are not at the hospital, and tells us to " take me home," and that "If they continue to make her me more than I am ready to eat, rather than doing it gradually, I am going to stop eating as soon as I get home," that the doctors with all their medical degrees, and all their wisdom, have done little more than put a proverbal bandaid on a gaping wound.
Why, you may ask, do I tell such a personal story? What's my point? This story gets to the heart of what we do at SOAR and at The Academy at SOAR. It's what makes us special, what makes us unique. We do what medical professionals, who bill and are paid multiples of what we charge and get paid don't do. We care for the whole child, and the whole family.
We take the time, no matter how long it takes, to meet a child's needs, to address the needs of a family. We don't simply see our kids "on rounds", read a chart, make a diagnosis, and prescribe a treatment. We do all that, and then we treat the whole child, every day, all day long using whatever it takes to be successful.
It isn't simply good enough to focus on one aspect of a child/student's well-being, so that they are " good enough" to go home. We want to give them the tools and the strategies to "make it" there.
To this day, I don't think I truly had an appreciation for what we do for kids, and for families here at SOAR. We go the extra mile, and do beyond what is expected, even if it stretches us to a point where we can stretch no more. Why do we do it? It's the right thing to do, and its making a difference.
Perhaps the doctors can learn a thing or two from the folks at SOAR. Chances are they won't. We are what we are, and do what we do, because we are a unique breed. It just makes me angry, damn it. When you are talking about your child's life and wellbeing, you want folks to be real with you, but you shouldn't have to settle for less than the best, and lame-ass excuses.
