On Figuring Out What's Wrong

I know I had promised on Friday to cover some ideas to deal with elopement today, but considering Wills was sick over the weekend I thought a better subject for today's ramble might be the difficulty many parents of autistic children experience when their children are sick.  "Oh come on" some of you out there are probably thinking, "What kind of parent can't tell when their kid is sick?"  Well that's a fair question, but I never said the difficulties came with telling whether or not your child is sick.  Hell, when a normally active, indeed almost hyper, child does nothing all day but lay on the floor or curled up on the coach under an afghan then even a complete idiot can tell that the child doesn't feel well.  No, the difficulties start with figuring out just what is wrong and can all too often extend to getting the child diagnosed and treated.  I mean, think about it.  If your neurotypical son or daughter comes down with the flu, they can tell you that they ache all over, especially in their joints, that they're feeling chills or hot, that they're nauseous and feel like they're about to vomit, etc., etc.  But with an autistic child they often can't talk, so figuring out what is wrong is more like trying to figure out what's wrong with an infant or a toddler who's too young to talk.  Then you have the problem that many autistic children, including my son, have what is commonly called Sensory Integration Disorder where their senses are not always giving them the same input all the time, and often they can't tone down what their senses are telling them at all.  To understand just what this can be like, imagine yourself at the mall on a busy day talking to a friend while the two of you shop.  You're successfully tuning out all the other voices you hear around you and that persistent mall music so that you can concentrate on what your friend is saying.  At the same time you probably don't even notice how your clothes feel nor the scents coming out of "The Bath And Body Shop" you just passed, and if you notice the scents from the food court it's probably only because you're starting to get hungry.  For a person with autism who suffers from Sensory Integration Disorder, every single stimuli that you're ignoring is pounding away at them demanding to be recognized all at the same time and they have no way to tone any of it down!  Every conversation is the same volume and demanding the same attention. You are acutely aware of just what you're wearing and what it feels like, and those scents can actually be overwhelming.  Now apply this to what you feel like when you have the flu and it's no wonder that even those who have reasonable verbal skills have serious troubles explaining just what is wrong.  For those who are effectively nonverbal, it's an exercise in futility.

Fortunately most pediatricians receive extensive training in how to handle these cases, and Wills' pediatrician is outstanding in this way.  But Wills didn't get sick when the pediatrician's office was open, he got sick on a weekend when our choices were to wait it out and hope, or take him to either a free standing clinic (aka outpatient center, emergent care center, or doc-in-a-box) or an emergency room.  After more than 30 years as a healthcare professional, there was no way I was going to misuse an emergency room for this (I'm sorry if I offend someone, but a cold or the flu is NOT an emergency), and while emergent care centers are often extremely competent at what they do, they are also rarely trained thoroughly in how to handle autistic children.  I still remember once when a nurse I had worked with at the hospital I was currently employed by before she quit to take a position at a new doc-in-the-box kept asking me and Wills to describe what he was feeling.  Before we were through, I felt like screaming at her "What part of non-verbal don't you understand!"  And the doctor, who I wouldn't hesitate for an instant to allow to treat my wife or I, proved to be not much better!  Truthfully, it's wasn't their fault.  Neither were trained to deal with children on the autism spectrum, which can almost be a whole other specialty all on it's own.  But when your child is sick, and you have no idea what is wrong other than the fact that he is running a low grade fever and listless, it can be very hard to keep this in mind.  All you find yourself caring about is that your child needs medical care now and the medical staff you're dealing with seems to be complete idiots who couldn't pour water out of a boot if the instructions were printed on the sole!  And to be honest, much as I respect my coworkers in the emergency room where I work, many of them would be just as lost if I were to misuse the emergency room for such a matter.  Fortunately for us, both my wife and I are healthcare professionals and, as might be expected after raising my son for all these years, quite adept at reading what bothering him.  So we elected in this case to simply keep him home, keep giving him plenty to drink, and children's motrin (he absolutely will NOT take adult motrin because he cannot stand the taste) to keep the fever down.  It might have been nice to be able to get a prescription for tamaflu, but I doubt he would have been willing to take even if we had it so it's kind of a moot point.  Many parents of autistic children build up a fairly respectable library of medical books aimed at the layman for the same reason; but to many people who don't understand our unique situations we border on neglect.  After all, if your child is sick, the first thing you should do as a good parent is take him or her to the doctor's right?  Well, sorry but we wish we could; but when you've had too many doctors for your comfort scratch their heads and admit that they don't know what to think, or worse, try to bluff their way through with obvious B.S., you learn to coop with it as best you can until a doctor who you KNOW will understand is available.  If that means waiting 2 or 3 days to see the doctor, then even as you loose sleep worrying that maybe this time you're making a mistake you still wait those 2 or 3 days.


As alway dear reader, I hope this give you just a little more insight as to why we do the things that we do and a deeper understanding of our children.  Until next time, God bless and thank you for stopping by.

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