Michael and John: Works in Progress

by Lillian Csernica on March 14, 2013

Some years ago a very smart, very devoted Speech Therapist with neurolinguistic training told me that every time the seasons change, the kids go crazy.  That was back when John was in elementary school.  She was right.  Temperature change, different amount of sunlight, is it still dark out when they have to get up, rainy or cloudy or windy or dead calm.  Add to all that the joy of Daylight Savings Time and you have a recipe for mental, emotional, and physical turbulence.  It’s not just the kids.  The people who by virtue of seniority are called “grown-ups” get rather unstable too.  There’s nothing like the sudden disorientation of trying to get through a day that feels wrong, looks wrong, and is full of other people bumping into each other because they’re all loopy too.

Michael:  His seizures are not under good control right now.  That means we have to watch him closely and make sure nobody with the slightest case of sniffles comes near him.  If Michael gets sick, his seizure threshold goes down, which means he’s more likely to have a seizure.  Some people react to the time change by having their systems get out of whack, which can result in illness.  Michael is in the class with the other medically fragile kids, so any bug that enters the classroom goes plowing through everybody.  Let’s not even talk about the pestilential environment on the school bus.  (God bless the bus drivers.  I don’t know how they do their jobs day in and day out.)  I’m worried about Michael because he’s been having crying fits lately once he comes home from school.  He’s not very energetic, and we’ve been having a hard time getting clear responses out of him regarding any physical or emotional pain he might be feeling.  His wheelchair needs yet another overhaul, he has teeth erupting in unpleasant places due to the narrowness of his jaw, and we’re having a heat wave.  Poor guy.  Life is hard enough on him.  It really upsets me to see him cry.

John:  Due to a dropped ball somewhere between our house, the neurologist’s office, and the company that supplies our prescription medication, John’s refill did not come in on time.  I had to call the doctor, get a new prescription written, then show up there to pick up the prescription which I would then have to mail to the supplier.  The doctor’s office is an hour’s drive from our house.  Important personal data: I don’t drive.  So that meant juggling logistics around here so I could get to the doctor’s office without disrupting a bunch of other events.  It’s like one of those complicated domino designs around here, with one crucial exception.  Hit the first domino and the picture you end up with isn’t pretty.  We have the refill now, but we’re back into a waiting period while the medication builds up in John’s system again.  This is not fun.  John is six feet tall, almost two hundred pounds, and he also has the family stubborn streak.  When he feels like exerting his teenage crankiness on top of whatever his autistic processing disorders are doing to him, life can get pretty intense.  I’m the one person around here who can talk him up or down or out of wherever he’s stuck, and sometimes that’s an exhausting process.

Did I mention the boys don’t have school tomorrow?  Pardon me while I lock myself in my room and barricade the door.  It’s not that the boys will be that demanding.  I am fortunate enough to have R.N.s for Michael and aides for John.  It’s the nurses and the aides who can drive me crazy some days.

I love my sons.  I am very happy both of them are mine.  Yes, it’s a lot of work, and communication can often be very difficult.  Fortunately, working with words is what I do best.


Filed under Family, Special needs

3 responses to “Michael and John: Works in Progress

  1. It’s actualy a great weblog thanks for this!


  2. Pingback: Letters from the Dead | Hopes and Dreams: My Writing and My Sons

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