Monday, January 18, 2016

Adjustment and Perspective

Remember the "good old days," when all I had to worry about was whether Ben would have a catastrophic meltdown, punching, kicking, and screaming for an hour, or have to come home from school because he leapt out of his seat without provocation and punched a kid in the stomach?  Ah, how I miss those days.

This year has been exhausting. Maybe it's the change from elementary school to junior high. Maybe it's the new surge of testosterone that suddenly rages through every 12-year-old boy's body. I just don't know.  When the school year began, I got a phone call at least once or twice a day to report that Ben was in the office in the throes of misery which he could not define nor explain. He just cried, buried himself under pillows in the Special Ed Director's office, and demanded that I come and pick him up.  I didn't often go get him, but he also didn't often go back to class.

Now that the teachers and staff know him better, he spends more time in class (though once a day, at least, he is still in the office complaining about something), but often it is with his hood over his head, or his head buried in his arms on his desk, frequently still crying.  Today, Sunday, he was seated with the other young men at the front of the chapel getting ready to pass the Sacrament to the congregation when suddenly he stood up, returned to our pew, buried his head in my arms and cried for 20 minutes. His explanation?  He just suddenly felt upset.

And the tics are tougher to deal with, too.  Here's a new one: He is compelled to "mock lick" everything he picks up.  Well, I take that back. I think the "mock licking" is limited only to hard surfaces, like phones, tablets, books, dishes, rocks...  and what is "mock licking"? It is where he draws the object close to his lips, flicks his tongue in and out of his mouth a few times, and "almost" licks the object without actually touching it. I think sometimes he misjudges the distance and really does lick it, but usually it's only a close call.  A gross, close call.

Fairly recently, though--a couple months ago--I think he may have licked something he shouldn't have (feel free to say "ew..."), and he got a large canker sore on his tongue.  That wouldn't have been a problem for most people, but Ben turned that canker sore into a new tic:  tongue biting.  For almost two months straight he bit his tongue so hard and so often that it was a bleeding, cankered mess. Quite literally, the entire tip of his tongue was just a gaping, white hole, and the rest of it looked like an exploded minefield.  I took him to the doctor, who prescribed a mouthwash that he said might help (it didn't), but recommended I take him to the dentist.  I took him to the dentist who said he had heard of tongue-biting among Autistic children, but had no experience with it. He recommended I take Ben to an orthodontist to talk about making some kind of appliance that would stop him from making contact between his teeth and his tongue.  And all this time, Ben was in agony from the pain, and yet he couldn't stop biting. He cried every time he tried to eat, sleep, talk, or (not surprisingly) go to school.  Those were a miserable couple of months which finally resolved when I purchased him a nighttime mouthguard, and he wore it day and night, and bit down on it instead of on his tongue, which finally healed and then Ben didn't feel compelled to bite it anymore.

In the meantime, Ben barely passed his classes this semester (because he spends more time in the office or with his head down than actually engaged in class), and he passed those classes really only because his resource teachers have exerted Herculean effort to accommodate him while he "adjusts" to junior high life.

How long, exactly, does this "adjustment" take? Because I'm pretty sure that most adults are still trying to "adjust" to junior high. Heck--I'm still traumatized by junior high. There is no such thing as "adjusting" to junior high for even the most emotionally stable kids (not that I count myself among the emotionally stable, mind you), let alone a child with Autism.

I'm a problem-solver. I'm a fixer. It's a rare thing when I just don't know what to do. But I'll admit it: I'm at a loss.  It's tempting to just call it quits and homeschool him, except that neither Ben's nor my sanity will allow that, and I can't even get Ben to do 20 minutes of homework most days, let alone complete all his courses independently.

A friend of mine whose son also has Autism (and who also started junior high this year) has had to embrace a hard, painful reality this year that her son will likely not graduate from high school, will not go to college, and will not move into some lifelong professional career. He has not thrived in the mainstream junior high environment, and is now on a track that will allow him to obtain just a certificate of completion from high school (not graduation). His future probably includes learning some occupational skills and gaining basic employment down the road.  It has been a painful recognition for my friend, who has done everything humanly possible over these past 12 years for her son in terms of his education and skill development. Yet in the end, she is having to acknowledge that there are limits to the heights her son will reach.

Am I being naive in refusing to raise my own white flag? Am I setting Ben or myself up for failure and disappointment? Admittedly I lack any objectivity here, and I am not asserting some Galaxy Quest-like battle cry ("Never give up; never surrender!").  I won't even echo that revolutionary declaration that I have not yet begun to fight; I began to fight years ago.  But I'm battle-weary, and wondering how much longer this skirmish will last. I believe in him, and in the intellect and talent that lie within him. I believe we can weather this storm (apologies for the mixed metaphor there).  At what point do I surrender to limitations? Not yet, not here, not now.

All the same, I never thought I'd miss the days when adding a few new bruises to my collection was as hard as it ever really got.  I never thought I'd reflect fondly on days of drawers overturned in a furious rage amidst a squalor of swearing. Yet now those seem like the simple moments of raising a child with Autism.  And so, sweet perspective, I welcome thee.


  1. I think they're lucky to have you!

    1. Thanks, Norris. I keep trying to tell them that, but they don't seem to believe me... ;-)