And exhale…

I am a fan of worrying.

Correction: I am NOT a fan of worrying, but I can’t seem to help myself when an occasion calls for any degree of concern.  And while, as a very young girl, I learned the lesson of “less is more” when it comes to jewelry, makeup, and perfume, I’ve felt absolutely no need to be cavalier about anything.  If there’s a drip in the kitchen, I call it a flood and wonder if the whole house is going to collapse because of it.  If we have 3/4 of a gallon of milk left and it’s Wednesday, I worry about not having milk should a snowstorm hit on Friday.  I am the Queen of Mountain-Out-Of-Molehill Land…and don’t you forget it.

When I worry I’m like a duck in water…not only do I feel like I’m in my element, but I also manage to give the outward appearance that it’s an effortless task.  There I am, gliding along while, below the surface, I’m paddling incessantly to keep myself afloat.  This is when the sense of humor kicks in (like an angry mule) and goes into overdrive.  I try to find humor in everything.  Some days it works, others…not so much.

At 1:30 this morning, as I watched the ceiling fan turn, I heard J roaming the top floor of our home.  He visited every bedroom and bathroom, trying to not disturb any of the occupants.  The cats barely stirred, Dada snored to his heart’s content, and TGG slumbered peacefully.  I didn’t really move until J returned to his bedroom and left the light on; I reminded him that he should be sleeping and, giving me a look that said “doesn’t the same apply to you, lady?,” J made himself as comfortable as the thought of a dentist would allow.  I heard him shuffling around in his room until it was time to get up and succumb to the inevitable.  That he didn’t take his med before going gave us pause (we’ve been down this road before, thank you…)

We left the house at 8:30.  We arrived at the dentist’s office at 8:45.  J asked, of course, to go to the bathroom at 8:45:30.  They called him in at 9:00.  Dada went with him.  Dada’s the Utility Man for Stressful Circumstances; I am handy at recovery.  I am the coddler, the spoiler, the pillow fluffer, the blanket tucker, the mashed potato maker…  I paced the waiting room (praying, of course, that it would go smoothly,) and then I looked up and a nurse was calling me.  Twenty-five minutes had elapsed.  J was getting ready to wake up, she said, and I could come back to see him.  As he opened his eyes, I looked down at him and he had a bit of blood in his mouth, but he seemed peaceful and relaxed.  They sedated him long enough to get the offending molar extracted, and now it was time to wait for him to be able to stand up.

Because it is a teaching-practice, the surgeon had a team backing him up, and they all kindly welcomed me, congratulated us on “the best patient of the day” and gave us instructions for J’s care until the sedation totally wore off.  They asked if we needed pain killers, and we explained that we’d rather weather this with run-of-the-mill acetaminophen.  They said to call if J experienced any pain that was much too much for him to handle.  We were home, factoring in traffic, before ten a.m.  At 10:45 J asked for food, and he ate the very creamy mashed potatoes that I made for him.  By noon Dada was back at work.  It is now half-past one, and J is happily sitting on the couch listening to music and giggling.  I gave him acetaminophen two hours ago because he told me he had A LITTLE PAIN with his Proloquo2Go.  At the dentist’s office he told us he was feeling RELAXED with the Proloquo.  He repeatedly said GOOD MORNING and THANK YOU to every person in the room while smiling his sweet, goofy, I’m-still-sedated smile.

Unless he bleeds, he doesn’t have to miss school tomorrow.  Judging by how well he’s handling the whole thing, and how he has asked for food and has accepted drinking from a bottle and not from his straw-equipped insulated cup, he won’t have any problems.

What have I learned from this situation?  Not to not worry, that’s for sure.  I will worry until I’m blue in the face because it’s what I do.  I don’t ever want to not think something could go wrong because I don’t want to be complacent about the gift of J doing well when faced with this type of thing.  But I have learned that, yes, we are right to believe that J understands what we tell him, and that he knows we can be trusted.  I have learned that if you prepare him for something like a tooth extraction, he WILL be anxious like any other person would be, but if you remind him that there is a purpose to this invasion and pain, he will accept that you have the best intentions.

All we got out of him at the dentist’s office prior to the procedure was a mild WAH WAAAAH that meant to announce he was justifiably concerned, but that he was not going to struggle.

Did I cry when the nurse told me it was done and had gone well?  Yes, but almost imperceptibly.  Did my little duck feet stop paddling?  Yes…I let the current carry me; I coasted on the feeling of relief and gratitude.  I would have kissed every practitioner in that room if it hadn’t been because, well, it would have been totally inappropriate, but I did call a while ago and left a message telling them that they’d done such a good job that J is back to his usual self, and that we are tremendously grateful because it is a gift to know that your autistic kid will now have a happy picture of the dentist’s office in his eidetic memory.

This duck is climbing out of the pond…for a while.

 

The Night Before The Dentist…

I will be brief.

At the stroke of midnight J can no longer eat or drink ahead of his tooth extraction.  We are hoping to keep him awake as long as possible so that he will not wake up too early tomorrow and ruin our plans.  The appointment isn’t until 9:00 a.m., and we have to be there at 8:45 to get ready for the whole thing.

In the neuro-typical world,telling a kid to not eat or drink after midnight just so they can go in and tear out the offending tooth that he’s been tortured by for two weeks is hard enough.  In the autistic world it’s quite a feat of persuasion, praying, hoping, lying…  I feel like a scene in any heist movie where they are about to get caught red-handed…it’s not a pleasant feeling.

I’ve been preparing J.  Every day for the past two weeks I’ve been saying “you know that tooth that’s been hurting so badly?  We’re taking it out.  The doctor is taking it out.”   I’ve pointed to the calendar so that he can see the date approaching.  Earlier this week I put the BACKPACK and BUS on the schedule for every day except tomorrow.  When J filled the spaces for Thursday with BACKPACK and BUS I made sure to remove them while reminding him.  I’ve become very talented at signing REMEMBER and DOCTOR and OUT.

At dinnertime, I sat there watching him look at the board and signing DOCTOR; I responded TOMORROW and went into the whole rigmarole about how the tooth that hurts will be gone.  He seems at peace with the idea.

SEEMS.

I won’t know for sure how well this went until it’s done.  In fact, I don’t think I will know how this whole thing has gone until Tuesday when the tooth is gone, the pain is over, the weekend has passed and we are over and done with the guardianship hearing on Monday.  Yes, it’s that kind of week…

So, here we are…sitting in the living room flipping through songs on iTunes and trying to keep a cool, calm demeanor.  Shortly before midnight we’ll sneak into J’s room and take away his water bottles…and we’ll make sure Slinky hasn’t fallen into the dirty clothes hamper because this caused quite a flurry of activity at around 3 a.m. a few days ago…

Wish us luck.  Pray for J, and for the dentist’s hand to be guided with certainty to the offending tooth.  And for a quick recovery…

 

Independence would be way more welcome if it didn’t come with so much oomph…

So J is asserting his will.  This, of course, is awesome.  We all want our autistic kids to be independent and assertive.  The fists pounding on forehead, legs and hips we could do without, though.  The whole rigmarole is quite exhausting.  My toes and fingers are not yet on speaking terms, but my stomach seems to drop to my feet whenever J gets angry and starts emoting.  Not quite the effect I’m going for, I fear.

The early Friday morning tantrum was almost justifiable.  Although we look forward to the time when J walks into a room and properly announces why he is upset in a reasonable manner, we know that the visceral screaming is acceptable under the circumstances of a toothache, especially for a non-verbal individual.  It’s like firing a cannon to let those inside the fort that an attack is at hand.  The flare, as it were, to get our attention.  We can, it has been proven, bring him down from that height.  With a little persuasion, we can start a conversation.

A tantrum for the sake of asserting independence and authority over self, however, is a horse of a different color.  Ok, not just a horse…a whole pack of wild horses…a crayon box-ful of colors of wild horses.  We’re not talking those pseudo-sweet My Pony things, either…we’re talking galloping, stampeding wild horses of many colors.  They give me indigestion, and Dada’s having a similar reaction to the whole thing.  Last night, after the hullaballoo had died down, we both had to do our yoga to somehow release some of the tension.  It worked, and we managed to sleep restfully until I started dreaming about zombies that were following William Hurt -whose eyes were taped shut?,- Richard Dreyfuss and I on a trip from the Midwest to Costa Rica.  I HAD to wake up after that, otherwise only goodness knows where we’d have ended up…  (Please, don’t ask me to explain my dreams.  I have an overactive imagination and it obviously runs away from me in the middle of the night.)

Again I think back on when I was eighteen.  Again I ask Dada to think back to those days.  TGG, being closer in age and time, remembers better than we do, but doesn’t understand any more than we do why the assertions come with such violent pounding of forehead, knees, and so forth.  We remind TGG that he was inscrutable at that age, and he doesn’t believe us.  I think we didn’t believe our parents either, and TGG’s future children won’t believe him.  It’s a vicious circle.

To his FEELINGS repertoire, J has added EXCITED; because HATE, LOVE, SAD weren’t enough, we’re also encouraging TIRED and FRUSTRATED.  No, not encouraging the feelings, but rather the expression of them.  Last night, when he finally came back to The Land of the Willing to Reason, I signed to him that I was angry that he’d had such a tantrum, but that I was also sad and worried.  He had thrown this tantrum out of a sheer desire to eat more.  He had had enough.  We knew that.  I’m sure he knew it, too.  His comm book had announced a tantrum at the school cafeteria, all on account of his demand for seconds of two items.  The aides had given in because the teacher wasn’t there, and the teacher had written to inform us that this -put simply would NOT fly the next time.  I had read the comm book to J, and he had made a show of looking at his feet, the wall, the table, anything but me…

I thought we had made the situation clear.

I was operating under a mistaken impression.

Gone are the days when saying a word 20 times was enough.  Last night I lost count of NOODLES after 75, and NO came at him as quickly as he said his word.  Impassive.  Calm.  Cool as a cucumber on the outside, and ready for some Beano on the inside…that was me…  J was just persistent.  Christ, what a persistent person he is!!!

The tantrum ruined everyone’s digestion but J’s.  The overeating ruined that.  There’s only so much control we can exert, and some lessons (like the gas and discomfort that come with having one’s way regarding meals) can only be learned by personal experience.  For the record, I didn’t enjoy J’s digestive misery one bit, but judgment has to be developed on one’s own.  Possibly the hardest thing to do as a parent is to watch kids make mistakes, and let them learn from those.  In this particular situation, the one fact that offered us consolation was that we had as much gas and discomfort as J was experiencing, even if we had eaten a small fraction of what he had insisted on gorging himself with.

I spoke to the teacher this morning and told her he was being “difficult” at home.  I reported that the same stubborn willfulness being exhibited at school was being displayed at home.  We agreed that being firm (and withstanding the wailing and pounding that would ensue) is the best course of action.  We wished each other luck.

If J’s anthem is going to be Beastie Boys’ Fight For Your Right, ours will be Tom Petty’s I Won’t Back Down.  This is the only way to go…

Pass the bicarbonate of soda, please…

 

Fingers, get ready to be reacquainted with toes…

These days, when my toes and fingers meet it’s because I’m curled up and they have a chance encounter.  I knew this was a problem when the early-morning “gentle exercises for seniors” lady on TV said “now stretch,” and I said YEAH RIGHT to the TV set.  Much to my chagrin, the two elderly ladies flanking her stretched with greater ease than I could, in my current situation, muster.

Every afternoon, J runs with the Wii.  Depending on my mood, I DJ the event or participate half-heartedly.  My inability to sleep through the night, sit comfortably or remember what it felt like to touch my toes has inspired (forced) me to take a long hard look at my current habits.  I hang my head in shame as I admit that, as much as I used to be fairly interested in remaining flexible and in shape a few months ago, I’ve basically given up because I am “too busy” with other things.

I started “being good” on Monday and on this snowy, miserable Wednesday I’ve already managed to do a quick run and have my yoga on tap for later.  By now, in spite of my best intentions, I would’ve crapped out on my commitment to “being good” if I hadn’t actually managed a restful full night of sleep last night.  There is a benefit to this awareness of self and bad habits, and I think that’s what will keep me going.  That my back is no longer screaming (that low but shrill, constant, sustained scream it was issuing since November) is another plus.  I am not, of course, in the shape of a 25 year-old (heaven forbid!,) but I also don’t sound more like my grandmother than myself.

J was intrigued by my yoga moves on Monday, and did his best to follow them yesterday.  Perhaps today he, too, will make some progress in this department.  It is not my weight that bothers me; I am quite at peace with the fact that I am a closer-to-fifty-than-forty mother of two and that this has an impact on my formerly young and slender body.  I am more concerned with the fact that the Tin Man in The Wizard of Oz squeaked less than I do when he moved.

The important thing is that a step is taken, and the other foot is poised to take another…

The slippery slope of a small-scale International Man of Mystery with an eidetic memory

Yesterday’s holiday was spent relaxing ahead of the next couple of hectic weeks.  One has to use the word “hectic” when there’s a tooth extraction involved.  The word “chaotic” doesn’t really come into play until, awake in the dark and looking at the blurred shape of the slowly-rotating ceiling fan, one starts pondering what J’s reaction will be when he realizes there’s a gaping hole where his painful tooth used to be.  I’m sure that the same kid who had issues the first time someone cut his hair (and wanted to stick it back on) will somewhat object to one less molar, but we’ll cross that bridge when we stumble into the roaring river.

J is obviously no longer distressed by the pain he was feeling Friday morning, and this often serves the purpose of making people in general forget how miserable they were and why the emergency visit to the dentist was necessary.  “But look!  It no longer hurts!!!,” we all reason as we go about our business in the usual carefree fashion.  Cruel though this may seem, I try to remind J that his tooth was causing him a considerable amount of grief not that long ago, and that the improvement in his circumstances is purely the result of a significant amount of antibiotics that are taking away the pressure of infected, swollen tissue.  He is emboldened into foolishness by this lack of pain, and wants to eat popcorn.  This particular treat was denied to him until he threw a royal hissy fit that threatened to require major structural repair to the kitchen floor.  Mother, in all her desperate wisdom, acquiesced and, within seconds, a bite into a kernel proved that the original NO was justified.

J wouldn’t admit he’d hurt himself biting into the popcorn and, quite stoically, arched a brow, sent me out of the room and then left the popcorn on the table, unattended and uncared for, until it was too stale to eat.  In a classic “well, it wasn’t worth it anymore” move, he waited a whole hour to bring it up to the trash can and unceremoniously dumped it out, looking at me as if to say “it was highly unsatisfactory and I won’t want any more until you read the microwave instruction manual and figure out how to make it right.  Don’t apologize!  It’s not worth it.  I am disgusted by this poor display of corn popping and…just leave me be!”  Since Saturday he hasn’t attempted to eat anything that might have small, hard, sharp pieces that would hurt him so there have been no more requests for popcorn, and he is steering clear of candy of the sorts that usually send shivers down my maternal spine: laffy taffy, sweet tarts, smarties…things that enmesh themselves into holes or crawl in and put pressure.

You might question the wisdom of “allowing” J to have this type of snack.  I’m right there with you.  I should say NO, and I very often do.  However, J has a way of absconding things that is uncanny.  The existence of the baby monitor allowed us to hear very delicate, obviously “quiet” munching in the middle of the night; reconnoissance missions led us to the discovery of J, sitting in the dark in his room, munching on the 2-ounce containers of cereal we pack for him.  How he brought it upstairs without being noticed (he who is over 200 pounds and now 5′ 10″ tall,) we might never know.  He has ways, you see, and it might very well be a Jedi Mind Trick for all we know.

There are times when his body language gives away the secretive purpose of his actions.  I’ve discovered ice cream sandwiches in pockets, but only because I detained him long enough for things to start melting or the cold dessert to press against his leg until it was uncomfortable.  There is only so much I can do to police J’s actions.  I can give advice (the Good Lord knows my kids roll their eyes enough,) but I also have to give him the opportunity (as was given to TGG) to fall on his ass and learn a lesson from time to time.

J’s ability to conduct himself in a super-secretive way can cause problems.  Eight years ago we had to put a call in to the National Poison Control Center 800 number because we discovered J had consumed a small quantity of Miracle Gro.  After soothing us and helping us figure out that he wouldn’t be harmed by it, we went to even greater lengths to guarantee his safety.  You now need a retina scan, a passkey and your fingerprints to fertilize plants around here.  The jury is still out on whether this particular incident was the gateway to J becoming the tallest, biggest kid in the household…TGG certainly thinks it was.  I’ve seen HIM eyeing the Miracle Gro greedily…

Our Man of Mystery struck again on Sunday, only this time it was a cyber-attack and I didn’t realize it until yesterday afternoon.  We were sitting in the living room when I decided to do a little research on an app someone had mentioned might be good for J’s Math skills; I sat at the computer and opened our shared iTunes account.  The balance was off.  There was money  missing.  I backtracked and remembered how, on Saturday, J had asked for Chopin’s Fantaisie-Impromptu, and I’d obliged, sitting next to him in front of his iPad and keying in the password to our account.  That, my friends, was a 99¢ purchase, and a considerable amount of money was left in his balance when I did that.  Yesterday, when I went “app hunting,” there was a minimal amount of money in his balance.  “The iTunes account has been HACKED!,” I e-mailed Dada.  “What???,” he replied.  “There’s money missing!,” I typed frantically while thinking of poor J and his missing money, and all the music that could have gone with it…sigh…  “Check his iPad.  Check your wireless.  Maybe someone is stealing everything else from our computer!!!”  We are panickers here, you know.

Click.  Click.  Click.  GASP!!!!

J, my dear boy, OBVIOUSLY memorized the password I typed into his iPad.  It HAD to be him.  Who else, for crying out loud, would complete the purchase of the other 110 Classical Masterpieces in the album that had the Fantaisie one day after the Fantaisie was purchased?  I looked at my son and said “did you…” and his eyes immediately shot up to inspect the texture of the basement-level family room ceiling through the slowly rotating blades of the fan.  “You DID, didn’t you?”  He smiled.  Broadly.

Remind me never to check the online banking around him.  NEVER!

 

Just your regular, run-of-the-mill, garden variety autism…

One in eighty-eight?  Really?  That’s where the statistics place autism now?  Wasn’t it 1 in 150 a few years ago?

I know that part of that number is based on the wide-swath spectrum we’re talking about here.  I know that part of that number is the result of overzealous diagnosis.  But, still, it’s a staggering number, isn’t it?  I’ve seen a panic form in newspaper and news website headlines for stomach bugs and flu strains with similar numbers.   The medical expenses for a person in the spectrum can be staggeringly more significant than those for a person who isn’t.  Don’t we all know it, huh?

At this rate, autism will soon be shrugged off (wait, isn’t it ALREADY shrugged off?) by some as a figment of our overactive parental imaginations, a crutch on which we lean to explain away our poor parenting skills.  Like the common cold, if you utter a single complaint about the vicissitudes of living with autism, people will roll their eyes and say “it’s ONLY autism, for crying out loud!  Take a pill and get over yourself!”

I read that number this morning and I had two reactions: the first was an expletive-laced WOW, and the second was “well, J doesn’t count in that particular statistic anymore because they’re only counting children to the age of 17.”  What does THAT mean?

I googled it.  What I found was a string of statements regarding employment for autistic adults that echo this one from The National Autism Resource and Information Center website: There is no good source for this number for adults with autism spectrum disorders.  J is a non-statistic.  J is a factor in a, generally, uncounted sector of the population.  From being 1 in 88 a few weeks ago, J has gone to being 1 in 4…as in one person in this family of four who has autism.

Clearly, we have more work to do.  Here we are, past the midpoint in the month of February, and we have looming ahead the extraction of a diseased tooth, a guardianship hearing, a general check-up at the doctor’s office, and the as-yet-unresolved issue of his Social Security benefits.  J deals with the direct stress caused by his toothache, and we’re fine with that because that’s a lot to handle.  The rest remains up in the air, jugglers that we are, until -one by one- things are resolved and taken out of the rotation.

The toothache has receded into nothingness thanks to the antibiotic that has made the raging infection peter out.  J is back to his usual self, and everyone is sleeping a little better.  I still jolt awake from time to time, but that’s the every-two-hours instinct that we all develop when they’re babies.  J is submitting to being given antibiotics with as much dignity as he can muster before loudly announcing the pink stuff tastes like BLEH!  He wants us around a little more than usual, gets a little anxious when we leave him alone for more than ten minutes at a stretch.  I wouldn’t want to humor him under other circumstances, but I know that Friday morning was pretty traumatic for him.  I negotiate furloughs to do other chores, and pop into the room to say HELLO when I hear him starting to stir from his comfortable mood into his “why am I alone?” mood.  There’s been a lot of hand-shaking going on, mainly because he wants to prove that his 2 a.m. tantrum was the result of unbearable pain, and any harm that befell us in the process was not intended as punishment.

J’s humility in the midst of his anxiety (which is now reflected in this desire to not be alone…maybe he thinks it’s our presence that keeps the pain at bay?  I don’t know) is most clearly illustrated by his current relationship with his good ol’, trusted friend Slinky.  At one point during the dental resident’s exam on Friday, J slung Slinky with such force that one of its coils got seriously bent, and Slinky (usually perfectly coiled or discarded) lost its shape forever.  This is not just the lassitude resulting from an excessive stretching of Slinky’s coils; this is a marked kink on an otherwise perfectly coiled Slinky.  A human would, under the circumstances, be considered scarred for life; Slinky is no longer Slinky, but rather the Igor version of Slinky, a hunchbacked thing that J would have protested and tossed mere weeks ago.

I think, perhaps, J realizes that his tantrum (although justified) was an ordeal for everyone, and he accepts Slinky as-is, kinked, bent, marred, simply because they’ve been through a lot together.  I think that’s the same reason the boxing gloves -beaten, battered, but no longer necessary- remain on his bed as bodyguards surrounding Raggedy Ann, Minnie Mouse and Daisy Duck.  One of his hats has a gaping hole that I might or might not be able to fix, but he keeps that, too.  He lets me hold it long enough to do a quick inspection of the damage, but he doesn’t let me mess with it otherwise.  They, too, have been through a lot together.

Does J know that his “cute” factor has been canceled by adulthood?  Is he aware that we are jumping through numerous hoops with as much alacrity and agility as we can muster just to help him?  I think he knows; I think he is aware that something is in the air that signifies change or a shifting of the picture.  I think he can “read” us and “recognize” us.  Now that he doesn’t fall into the 1 in 88 statistic, and he counts as The One here, with us, at home, J seems to be letting go of some things while trying to understand others.

I think he “gets” us now, and he sees what we do.  Like Slinky, the hat, the boxing gloves, we have holes and bends and rips.  We instinctively and suddenly react to his instinctive and sudden reactions.  The autism here is an everyday thing, unsurprising even when it boggles our minds.  He’s safe and known; he’s not a number; he’s J.  And we have been through a lot together.

 

Long night’s journey into day…and then the dentist…

What woke us up was the loud thumping.  It came from the other side of the top floor and it jarred us out of our slumber.  THUNK THUNK STOMP STOMP PHWUMP PHWUMP.  It was in such quick succession that I was bolt upright on the bed as soon as the first THUNK could be heard, and by the time I “landed” from my disorientation, we were on the second STOMP and got to witness firsthand both PHWUMPs.  It was 2:00 a.m.  J was -quite obviously- NOT happy.

During the ensuing tantrum (conducted everywhere from the toilet to the hallway to J’s bed,) Dada and I kept looking at each other and thinking (as we both admitted later) “not again, please.  Not THIS again!”  For all intents and purposes, we were back in the middle of a circa 2010 tantrum, with J howling, growling, gnashing teeth and hitting himself (fist on fist, fist on forehead, fist on knees, fist on feet) with gusto.

A while ago, while having lunch, Dada and I agreed it was all too eerily familiar and all too sad, and that we both felt like crying.  TGG, who had rolled out of bed during the last PHWUMP, had the wide-eyed look of one who is having a scary flashback.  Trying to establish eye contact with J was proving difficult and, no matter which side we approached him from, we were in the line of fire (people have sore fingers and hands in the aftermath) and incapable of establishing a line of communication with J.

When we finally got him to respond to us rather than to his desire to pummel his forehead in with his fists, he used the Proloquo to tell us he was in pain.  Then he told us his ears ached (possibly because that’s where he was feeling it most) and then said his tooth ached, too.

This was the worst news possible, of course, but we were buoyed by the fact that our J, at long last, was putting in an effort to tell us WHY he was so upset.  I don’t think I can properly describe the joy we felt when this happened.  To anyone who has never experienced being constantly locked out of their child’s mind because of Autism, our description would seem excessive, too melodramatic, too…much.

If I tell you that we were walking around, smiling from ear to ear while tripping over ourselves to find something for the pain, and saying “his tooth hurts!  He is in PAIN!” you might understand.  An outsider, someone who has never had to guess why their child (who is far from a baby or pre-verbal toddler) is screaming and kicking and biting and hitting and lashing out because they don’t have WORDS…well, they might not find our joy mingled with concern funny or heartwarming.  People who have never experienced the isolation of silence and Autism will probably peg us for lunatics who are into some sort of dental sadomasochism.

We gave him something for the pain, and J started calming down.  By then it was half-past two.  After a quick search of the dentist’s website, we agreed that at 6 a.m. I would call the bus ladies and tell them J would be skipping school today.  With this thought in mind, we all climbed into our beds and tried to wind down.  (Laughing at people who still hope they will be able to wind down after such an experience is not nice.  The situation IS ridiculous, but laughing is not nice.)

On went the hallway light, and again J was in the bathroom.  Not pounding or screaming or acting out, but awake and alert in ways that are impossible to fathom at that hour.  I got up and found him, calmer, but still agitated in a quiet way.  He insisted that I put away the dosage cup for the medication we’d given him, that I move a towel that had been left on the counter (a complaint I am constantly offering to anyone who will lend an ear,) and generally anxious.  I talked him into going back to bed, and he crawled under the covers and bid me adieu.

No sooner had I settled back into my bed, alert and awake in ways that are just plain wrong for that time of morning, than the light in the hallway went on again.  Once more I fished for the sweater and climbed out of bed.  As I lifted my glasses to my eyes while asking “what’s up, Pumpkin?,” I saw that J was holding the towel he’d been pointing to earlier.  It was wadded up into a ball, and he was going for the laundry basket.  I looked more closely and noticed he’d thrown up on his bed; he didn’t make an obvious mess, but all the water he’d been chugging down since he got up in the middle of the night had come out in a gush.

The second most powerful call of alarm in this household is “he threw up!”  Bodies emerge from under blankets, corners, rocks; people come armed with our beloved “barf bowl,” baby wipes, laundry baskets.  J, unprompted and calmly, had set in motion the protocol for the situation at hand.  It was 3 a.m. by the time we had a load of laundry going, J’s bed freshly made and a bag of ice (ok, a ziploc bag with ice inside an old, but clean, sock) on the area that was hurting.  While one of us manned the bag of ice, the other called the dental emergency line.  It was best to wait until the urgent dental care opened in the morning because at the ER all they would do was give him pain medication.  This didn’t sound like a viable alternative for us so we sent TGG to bed and sat up with J.

Little by little, J started calming down and relaxing.  At first he asked for us to give him something for the pain, but we explained that we could not give him anything more, that one doesn’t take more simply because one vomited what was given earlier.  The ice, we explained, was to help with the discomfort.  Grumbling, but he accepted this dictum and we settled down on his bed for an uncomfortable wait until 6 a.m.

A pattern for comfort was soon established: J would wait until Dada and I had nestled in around him (one holding the ice bag, the other rubbing his leg to soothe him,) and then he would ask to go to the bathroom (because he did have an upset stomach that we are attributing to the anxiety caused by the pain,) then he’d wash his hands, climb back into bed, ask for a drink of water, get the ice pack in the right position, nearly doze off and start all over again.  By the time six a.m. rolled around, J was doing this with an ear-to-ear smile and a giggle.

The wait at the urgent dental care clinic was more of an ordeal than all the preceding hours.  I think the anxiety J felt, the children running around uncontrollably and all the toothless people surrounding us made for an excruciating hour or so.  J asked to go to the bathroom six times, to drink water three and to leave for home at least 20.  We told him he had to wait for the doctor to look at his tooth.

The quarters into which we were led were extremely cramped, and we had to have X-rays taken twice.  The news was not good, and we were given three options: do nothing (which they are required by law to mention,) a root canal and crown, and extraction.  Doing nothing, obviously, was not a viable option.  So we asked about the root canal and the extraction.  The root canal would be ONE appointment, and the crown ANOTHER.  It would have added to about four hours of treatment.  The extraction would be done by a surgeon (not a student, thank goodness,) and would be quick.  The questions we had to ask ourselves were not quite simple: could J live without the molar in the farthest recesses of his mouth or could J live with having to have treatment possibly repeated a few months down the line.

Looking at J’s anxious face, the decision was simple: in the cramped quarters of the urgent dental care unit at a teaching hospital was not the most comfortable or soothing place for him.  Having to repeat the same treatment several times over before extraction became necessary, all Dada and I could agree with was that extraction was the best course for our dentist-phobic son.

From the small room (in which we felt like sardines and J kept asking to be sent home,) we were sent to the oral and maxillofacial surgery unit.  I skipped out to call J’s court-appointed attorney to explain that J’s treatment was necessary and that, in the absence of guardianship, we thought it was still the best thing to make this particular determination.  She agreed and said she knew we were thinking of J, and to let her know what happened.  As soon as I turned back towards the waiting room, J and Dada had disappeared into the recesses of the surgical office.  I cursed the crappy cell phone signal acquired through our dinky pay-as-you-go cell phone, and dashed back into the office.

Being the person waiting outside for news is not fun at all.  When J had his dental treatment done in hospital as an outpatient, both Dada and I had to wait.  The clock moves so slowly when news is expected!  I ended up waiting half an hour, and the verdict was simple: antibiotics until the morning of the 28th when the tooth will be extracted.  Dada tells me that they could’ve done it then and there, but they didn’t want to poke and probe too much with the infection in full swing.  J, in spite of his misgivings, had behaved beautifully.

And here we are, mid-afternoon on a Friday, watching a thin snowfall gathering half-heartedly outside the windows.  We are all tired.  We are all anxious.  We all know the map points to a long tunnel with an end to it, and we’re ready to head that way.  The antibiotic is disgusting; the liquid acetaminophen is worse.  Not much else we can do for now, just clear the path for the bulldozers, I guess.

What do we know now that we didn’t know a little over 12 hours ago?  That J really, really, really wants to let us know what he’s feeling.  He’s not just responding to the availability of a shiny new toy; he’s actually trying to tell us “hey!  I’m in HERE, and I have something to say…and I don’t need to scream anymore!!!”

It feels good…damn good, in fact.