The Second Day of Christmas has arrived…

J’s enthusiasm for Christmas this year is legitimate.  He has been happy, engaged, and fully participant.  Last night, as I was putting the finishing touches on our dinner, he motioned for Dada to get the Twelve Days board ready.  I then sent them to the closet upstairs to each pick a package for last night’s round of gift-giving.  No sooner had they returned to the kitchen that J wanted his shirt changed…apparently the color was wrong for pictures.

Off he went, burnt orange shirt in one hand, and returned wearing an oatmeal-colored one.  He was happy and photo-ready.

The night before we had been standing in front of the PECS board while J went through his schedule for the next day.  Wednesday is PIZZA day, and J was happy about this, but moving quickly towards the card that showed the First Day of Christmas.  We made a chant out of it…EXERCISE, PIZZA, SODA, SWEEP, FIRST DAY OF CHRISTMAS!!!!!!  By bedtime it had evolved into something longer (involving other activities), and always ending with FIRST DAY OF CHRISTMAS!!!!!!

Last night we had to do the same, only switching over to SECOND DAY OF CHRISTMAS!!!!!!!

Methinks this will be a “thing” now.

Yesterday, J’s new neighborhood companion stopped by to keep him entertained while I wrapped Dada’s presents.  Yesterday was, as it were, the true test of if this arrangement is to J’s liking.

It is.

The young man is amenable, kind, and very patient.  We have made a point of explaining that J might not interact in a proactive manner to start with, but will eventually relax into it as time progresses.  The kid (a teenager) is totally fine with it; I can hear him talking to J even when J doesn’t answer back.  It is not forced, stilted, or stressful…he just talks about whatever he has on his mind.  This all bodes well for the recommendation letter I will write for him in a couple of years when he starts applying to colleges: so-and-so exhibits an open-mind when dealing with individuals who are different from himself, and patience in situations that are unfamiliar and potentially stressful for the uninitiated.

When I told J about his new friend stopping by in the afternoon, he was fine with it.  When his new friend walked into the room, J was fine with that, too.  I went off to wrap presents and could hear the gentle monologue being conducted by his young companion.  J was giggling and humming.  Even with Annie playing on the TV, and J’s music playing on the iPad, our Dashing Young Friend kept his cool beautifully.  The letter of recommendation progresses nicely:  DYF can focus on a task while being presented with often-clashing stimuli that would turn the spine of a grown person to jelly.  (On a personal note: I am often tempted to start climbing walls like Spiderman when confronted with this type of overstimulation.)

The interaction was so successful that I asked the DYF if he would allow us to take his picture for J’s PECS board.  With the solemnity of one who understands he has been accepted as part of a tight-knit clan, he stood in the kitchen and posed.  When told it wasn’t intended for a WANTED poster in the P.O. he relaxed and smiled genuinely.

It is that relaxed and kind demeanor that J now has on his Proloquo2Go, its chosen voice announcing DYF’s name, and on his tray of PECS in the kitchen.

All is as it should be, and the Second Day of Christmas progresses nicely…  So does the note-taking for the future college-application recommendations…

A peri-menopausal woman and a young man with ASD walk into a messy kitchen…

Oh, J and I…we are getting on each other’s nerves this morning.  Only goodness knows why.  No, actually…goodness doesn’t know, but we do…

I think it is a (tenuous) sign of maturity that we have agreed to take a break from each other.  We are both on a timer right now.

It was the mess in the kitchen.  I am not in charge of coffee in the mornings.  I’d say Dada is in charge, but I have the sneaky suspicion that it’s actually the Tasmanian Devil who goes in there and gets things done while I take my shower and drag myself to the dining room.  I generally (and you can blame the time-release caffeine in my morning cup of “revive me I need to be functional” java) don’t realize how messy the kitchen is until I come back down after Dada has left, the beds are made, and J is ready for breakfast.

For us people who drink coffee mornings are very simple, at least Monday through Friday.  We have pressed coffee, frothed milk, maybe toast with butter and jam, or some other sort of quick thing to eat.  If there’s a hot breakfast involved it’s for Dada.  I cannot, in spite of many years living in New Mexico, stomach a breakfast burrito at six-thirty in the morning.    Out of coffee, milk and toast with something spread on it is created a mess that, should such a thing as domestic-affairs CSI exist, would be described as a complex scene.  Remember that scene in The Princess Bride when Prince Humperdinck is reconstructing the sword fight between Iñigo Montoya and The Man in Black?  That’s what I feel like when I step into the kitchen after Dada has gone to work: he ground the coffee here, transported it in the ridiculously-sized container to pour into the French press here, spilled here when the cat jumped on the counter, moved to the dining room table, and poured the water from the electric kettle without turning on the ceiling light…he was lit from behind by the insufficient bulb from above the stove…hence the spill of water HERE, and the wet ground dripping down the side…and so on and so forth.

Please, don’t mutter to yourself that I should be grateful that HE gets up and makes the coffee because I AM.  That doesn’t mean that I have to actually ENJOY cleaning up an amazing mess that is not commensurate with the meal consumed.  The first I do in relaxed lighting (no, he doesn’t turn on the ceiling light,) and with (possibly) Boccherini or Bach playing in the background.  The second I do with J following me as closely as a pilot fish does a shark while making requests for something I’ve already said yes to, and saying GOOD MORNING with every exhalation.  I try to make sense of the kitchen while trying to make sense of six other things, and sometimes I realize that jam hasn’t been returned to the fridge, a cat is meowing loudly and J is running around in very tiny circles trying to keep away from its demands, and the phone is ringing because telemarketers don’t respect the fact that people hate them and don’t want to talk to them AT ALL.

An aside:

Apologies to any telemarketers reading.  I know it’s your job and you have to make a living, but I still hate you when you are wearing your telemarketer cape and invading my mental space with your phone calls.  Yes, I know you have student loans and kids, and car payments, but there is NO right time to call me.  NEVER.  EVER.  NEVER EVER!  And if you are the telemarketer that called the other morning (while I was making eggs for J’s breakfast, picking up plates that had slid out of the dish rack, trying to find the right playlist on J’s iTunes thing, and sliding some bread into the toaster: if you call and say “this is about your Windows,” you totally deserve to be told “they are dirty, but I won’t get to them until springtime so don’t call me to ask about them again.”

And I’m back on the subject.

I think it’s healthy to admit that J and I get on each other’s nerves.  I am not a saint.  I am not Mother Teresa of Calcutta, nor am I some beacon of motherhood that puts all other beacons of motherhood to shame with my efficacy.  Most of the time I really don’t know what I’m doing, or how well I’m doing it.  There are times when I need to walk away from J because I know that his anxiety is going to cause me anxiety, and one of us has to keep it together…this requires a brief moment of “come on!  Seriously?  You are a friggin’ grown-up, lady.  Take a deep breath and get your shit together…”  Sometimes it takes a few brief moments along the same lines.  If there’s hot flashes involved, well, there might not be enough namaste to go around, but I try…

Within the next ten minutes we will be done with our timers, and we will once more stand on the same stage to perform our next scene together.  I think we’ll be ready then.  I’ve agreed with myself that the kitchen is a mess, but it’ll get done when it gets done…probably oh one-ish?  He has agreed with himself that he will take care of the straps on his wrist brace because I have already stated, unequivocally, that I am not going to fiddle with them every five minutes.  We stomped to our corners, we took deep breaths, and now it’s time to mumble apologies, give awkward hugs, and make faces behind each other’s backs.

We’ll be fine.  It’s Friday, and there’s a very small flatbread pizza looming in the schedule for this evening.  All sorts of sins are forgiven when there’s pizza in the horizon, and we know we are “normal.”  In our own way, of course…

I am grateful, and I love my family.  I need more coffee, and the hot flashes suck.  Autism can be a nuisance, and anxiety is a bitch.  But I am grateful grateful grateful and my patience is replenished, and -I think- so is J’s…

Now…to the kitchen!

Three apples and an orange…

We cannot, although it is quite evident and inevitable, believe that it is the day before Thanksgiving.  We also cannot believe that we are back on the med, and having the occasional (and of diminishing severity) meltdown with SIB, but there you have it.  It is what it is and that’s all that it is…

While things are slowing down, the SIB is still there.  More smiles during it (which is upsetting, but I understand that it’s not the same to him as it is to us,) and less frequency and violence, but it’s still there.  I now ask him if he needs to complete his ritual to his satisfaction before I replace his wrist brace.  Sometimes he needs to touch the side of his head, and sometimes he doesn’t.

The current obsession is with the bandaids.  They have to be placed just-so.  When Dada asks how my morning has gone in one of his e-mails I usually tell him “the triangulation, alignment, calibration and placement of the bandaids went well,” or “neither 10th grade Geometry nor Euclidean geometry prepared me for this morning.”  Yesterday I had to redo them immediately after being done with applying them.  The moment you realize your kid is looking at you like this…


you know you’ve done a crappy job and you need to correct it…  Correct it I did.  Quickly.  While asking him to breathe deeply and be kind to himself.

The other day we sent an update to the psych and said “we see an improvement, but he’s still very impatient and sometimes doesn’t seem to want to stop hitting himself.”  He said it was OK to give him the full milligram of Risperdal.  We agreed that this might be wise, but decided to stave off until we felt it was inevitable.

And here we are, still on the half milligram, and doing fine.  I wouldn’t say our problem is gone, or J is fine now, but we’re working on being better.

I was messaging back and forth with my niece this morning, and she asked what -to me, anyway- sounded like a rather existential question.  When I answered it I referred to the three apples and one orange in the title of this post.  I wrote to her, in a rather long-winded (no, you wouldn’t know about me being long-winded, would you?) reply, that if you ask someone (little Timmy, I believe, was my subject) what do you get when you have three apples and someone gives you an orange.  The answer is three apples and an orange because no one says “four pieces of fruit.”

The context for that illustrative scenario was different, but the essence is the same.  Just because you put two things together doesn’t mean that you can turn them into one cohesive mass.  Medication plus J doesn’t mean a solution.  It means J is taking medication to help him be more open to certain negotiations that he is having trouble accepting in his current anxious state.

We have three apples and an orange.  Not a fruit basket.  Not four pieces of fruit.  We have three of one, and one of another.  That doesn’t mean that we won’t end up with a basket of fruit, but it means we’re not quite there yet.

And for this we are thankful.  We have three of one, and one of another.  We used to have all one kind.  We are adding and altering things to what we have.  We are working on this.  We are proactive and productive, even at a very small scale.

So off I go to season the world’s smallest turkey, and to make a well-deserved and much-needed cup of coffee to help me navigate the rest of this day.

I wish for you a safe and happy Thanksgiving with a tasty meal and many loved ones who understand your kind of gratitude, and your scale of accomplishment.  I hope you accept your apples, oranges, lemons, kiwis…whatever fruit you have in whatever proportion it is available, and eventually make a basket and say “this is not that bad…I can handle THIS.”  In the meantime, let’s be accepting of the fact that not all gratitude comes with a warm glow (unless, of course, you can count acid reflux caused by corollary anxiety,) or with a picture-perfect background.  Gratitude is about knowing that you have “the chance.”  The result is maybe still lurking, floating, skulking, hiding, traipsing, scurrying out there…but you have “the chance.”

That’s all we need right now.

Peace, people.  I am thankful I get to monologue at you, and you don’t (can’t?) throw tomatoes at me…even those, too, are fruit for my potential basket……….


Let’s call it an investment in the future…shall we?

Yesterday evening, with my patience at a very low ebb, I told J we were going to Urgent Care.  He had been hitting his head quite insistently, and his hand looked redder and angrier than usual.  The egg sized bump on the side of his head was not giving me any joy either.

Off to Urgent Care we went.  Our friendly neighborhood NP said “wow, it’s been quite a while since we’ve seen you!!!”  I admit I glared at him…  J was all too eager to leave, and I told him that he was having his hand and his head looked at because enough was enough.  J had to have tangible proof that his SIB is a medical situation.  Something has to help him get a shard of understanding about what he is doing to himself, right?  This was it…

To any outsider watching my interaction with J I must’ve looked like the worst mother ever.  I was very no-nonsense, very terse.  The average outsider will not know that this has been going on for a while and I have been fighting the good fight, working through meltdown after meltdown, witnessing SIB while trying to deflect it.  The average observer will judge me based on the lowest ebb of patience…

Explaining that our son has ASD and that he is anxious and has been hitting himself invites judgment whether we want it or not.  People, even when they are medical professionals who should know better, will wonder why the band-aids, why the SIB, why the haunted look on J’s face and the barely contained frustration in our expressions.  We ran the gamut of explanations: the band-aids are not for injuries…they’re comfort items; he hasn’t bled, and he seems to be fine, but we are concerned; he has been med-free since December, and this is just a prolonged period of anxiety that seems very difficult to resolve.  We want to make sure that he hasn’t broken anything…

I would love to attach to that “do you have kids?  Are they neuro-typical?”  I don’t because then I’d be just as judgmental as people are.  I can safely say that “if I’d known then what I know now” my life would be different, but we are young and clueless for a reason, right?

J’s hand is fine.  No fracture.  Just bruised.  Very bruised.  He must be in pain, or at least sore, the NP we had never met before told us.  The head is just a bump…it might break up sooner rather than later, and we might see bruising on the side of his face.  His skin is fine…dry and a little scratchy from all the band-aids…have we tried medical tape?  I tried to explain that there is a pattern to how each band-aid is applied, but then I realized that I was wasting my breath, and said I’d look into it…

J behaved for the X-rays.  J behaved while we waited for the results to come in.  J wanted to come home, but he could tell I meant business.  When Dada went to the grocery store I told J we were waiting in the car.  He was quiet, and he realized that I was concerned enough to put him through going to Urgent Care, and upset enough to just say “see what happens when you hit yourself?  We don’t want to do this, but we have to because if you get hurt it’s very important to us that you are properly seen by a doctor.”

He came home, had his dinner, and didn’t hit himself.  He tightened his wrist brace, and I had to loosen it…I know that’s another comfort thing, but we can’t cut circulation, can we?  So I’ve bought a new brace to replace this one that is looking frayed and forlorn, and this morning I made sure that I kept J busy doing the seasonal cleaning and rearranging of his room.  He is happy with the result, and he was calm and focused on that task until nearly 10 a.m. when we came downstairs.  At that time he wanted fresh band-aids, and I helped him with those.  He was going to hit his head, but he realized I was looking at him (quite calmly…I didn’t glare…I was very impartial, but I wanted him to remember where we were last night) and he thought better of how hard to do it.  He simply tapped the sore spot he has been dedicated to creating for the past couple of weeks, and then placed his hand where I could take care of the band-aids.

We’ll see how the rest of the day goes for both of us.  I admit I am frayed, shaken, worn out, baffled and grasping at straws.  The more I think about this, the more I am outraged at the lack of support so many parents can find out there.  We were discussing this last night, and I told Dada that no wonder so many parents of disabled adults seem so disenchanted.  There comes a point when you realize that it’s not that the creek has run dry, but rather that there is nothing other than the creek bed, and you live in the desert.

But we plod on…our feet feel heavy, but we’re not crumbling.  We are, if anything, even more determined to change things for ourselves and J.  We might end up packing up and moving to a kinder climate sooner rather than later, and we might end up changing our entire lifestyle to handle this better.  We are determined.  Shaken, stirred, frayed, scared, anxious, but determined nonetheless.

I do curse a lot these days.  I apologize for it…or maybe I don’t.  I have to do something, right?

Off I go to deal with everyday life…

Enough was too much…

A meltdown a day I can deal with; a tantrum for the sake of a tantrum just because he can…well, that’s another story.

Mind you, my friends, I know the difference.  A meltdown has, at its core, a level of frustration that moves J to behave in a manner that will get him attention for something he cannot express is wrong.  A tantrum comes with a sly smile and says “dance, monkey!  Dance!”

Oh, we were patient throughout.  We bathed him as he beat the crap out of himself, and smiled.  We took deep breaths as we saw his hand get redder, and we tried to divert him.  He was relentless.  He was enjoying the power he was exercising.

And then I calmly sat him down.  I showed him how red his hand was, and I told him that there would be NO PIZZA FRIDAY, and NO FIVE GUYS SATURDAY.  He had not been melting down; he was being a brat.  I then informed him (before ten P.M….egads, Brain!) that it was bedtime.




I tap the iPad screen and the Proloquo says: NO PIZZA FRIDAY.


I go back to the iPad: NO FIVE GUYS FRIDAY.


Oh, we love you, too.  Bedtime.


Get your story, pack your things, and up we go to bed.




OK, bedtime.


The iPad talks for me: NO PIZZA FRIDAY.


Nope, buddy…nothing doing.


I accept your apology.  I won’t give you a reward for it though.

I go back to the iPad and tap buttons in quick succession: J RUDE.  J NO UPSET.  J HIT.  HIT WRONG.  MAMA AND DADA WORRIED.  J GROUNDED.

Stunned silence, and acquiescence.  He gathers his things, and we head upstairs.

When we get to the kitchen he looks at the board where PIZZA, TARGET and TAXI were on display for Friday, and FIVE GUYS was on for Saturday.  I calmly take them down and put them back in the tray.

J looks at me.  SORRY.  I say “I appreciate your apology, but I cannot reward a tantrum just because you think it’s funny.  Upstairs, please.”

Of course, he turned on the charm while we went through the bedtime routine, but I stayed cool and calm, said GOOD NIGHT, and left Dada to read Mouse Soup.  We were all in bed by ten-fifteen, and then J came into the room to check if Dada had clothes out for work.  I told him to leave the closet alone, and march to bed.

At 5:45 this morning he walked into our room and said COFFEE.  We told him to go back to bed.  At 5:52 he repeated his request.  I got out of bed, put a timer on for him to stay in his room, and went back to bed.

How do I know that last night’s incident was a tantrum and not a legitimate meltdown?  Because my son has been trying to be as charming as can be, and he has been SIB-free all morning.

Oh, that might change.  It might be a SIB-ful afternoon, but this is proof that J knows what he’s doing, and he also knows that there is a point when I will no longer go “poor baby!  Do what you will with my nerves.”

I feel empathy for my son.  I really do.  I want him to be happy, and I want to help him in any reasonable way I can.  I also don’t want him to use SIB as a form of entertainment.  “Oh…I’m bored…let’s make the parental units jump, shall we?????”  A legitimate meltdown is something that I can unravel and, perhaps over time, find a way to help him manage better.  I will not accept entertainment-value tantrums.  I will not sink to the level of “reality TV” just because there’s nothing of quality to view at the time.

It is a dreary day.  Rain, clouds, fog, gray…and we’re indoors, and we’re stuck with each other.  We will be entertained, interactive, affectionate and communicative, but I hope we will also manage to have a little peace of mind today.  If he is genuinely upset, we’ll deal with it, but I will not encourage him to manipulate a whole day simply because he can.

Would allowing this help him at all?  I don’t think so…but I might be wrong.  Feel free to chime in!

J benevolently rescues his parents…

With the arrival of warm temperatures, and the progress of our garden, we love to sit outside.  We take our books, park ourselves around the table, and read until the sun starts to set.  We’ve grown accustomed to the trill of the cicadas, but we are still freaked out by their habit of dive-bombing against leaves, patio umbrella, us…  J, guided by his fear of flying insects and strangely whirring creatures (I swear the cicadas sound like they’re trying to contact the mothership,) prefers to stay indoors.  On Monday night this was the best decision ever…

It was a nice, warm, comfortable evening.  The whirring wasn’t too loud, but the cicadas were circling us with looks of annoyance on their scary little faces.  Inside the house, J was happy and relaxed watching a movie after dinner.  The cats were lazing about in the sitting room.  Because Dada is always arguing that we can’t keep “air conditioning the great outdoors,” he had closed the sliding glass door.  I keep the A/C at 74 degrees so it hardly ever kicks on when all the fans are going.

We live in a safe neighborhood.  By that I mean that once in a great while a car gets broken into, things are stolen from porches, or there is a random break-in while someone is away on vacation.  This all happens so seldom that it out of an excess of precaution (and because I am, in essence, a chicken shit) that we put a stick on the sliding glass door track to keep it from opening completely.  Ok, there are TWO sticks…a shorter one so that I can leave the door open for the cats to come in and go out, and a longer one that prevents the door from opening AT ALL.  The longer stick is made of wood.  The shorter stick is metal.

As we sat outside reading I told myself “I will stop at the end of this chapter.”  Page 132 was my goal.  I was on page 131.  I am reading Barbara Tuchman’s The Guns of August, and I’m going slowly because I have lots to do.  During the day I have J supervising me, and so I take a while every evening to catch up on where I should be in my reading.  I wanted to stop at page 132 so I could go back inside and eat a cookie.

And then I heard the click of metal against metal.  Dada, who can’t hear very well, heard it too.  It was a sound that we immediately, and correctly, attributed to the short metal stick falling into the sliding glass door track.


We fake-calmly walked to the door, and saw Miss Zelda on her back, happily stretching over the door track.  Somehow she had managed to push the stick towards the door and kick it into the track.  We fail to see how this could have been accidental…  If you have never seen Miss Zelda you cannot begin to imagine how accurate I am in describing her as a dead ringer for Lucifer, the cat in Cinderella.



Make no mistake, just because she isn’t smiling like Lucifer doesn’t mean she’s lacking that mean streak.  We have seen the glint in her eye as she passes us on the stairs, bolting towards the kitchen level as we make our sleepy way to coffee in the mornings.  The only thing preventing her from doing away with us is that we keep the cat snacks on top of the refrigerator, and it’s not easy for her to climb up there, but the day she figures it out, we’re toast.

Our plan was to try to jostle the stick out of the track with one of the garden poles.  Valiantly (because that’s how I roll,) I attempted to go in through the small space that remained open.  My arm did really well.  It would have been awesome if there hadn’t been the rest of me to contend with.  For some strange reason, the man I married thought that -being six inches taller and weighing 40 pounds more than yours truly- he would be able to get into the house that way.

Two solid minutes of “are you calling me fat???” ensued.  We then realized that we had to think of alternatives.  Mind you, at this point Miss Zelda is just looking at us like she has won the lottery.  Because every night we have the same exchange about the car not being locked, I told Dada to go check if he locked the car.  For a second he was really happy because, of course, he ALWAYS forgets and get upbraided for it.  The logic was: GARAGE DOOR!!!!!!

I admit that, in my desperation to get inside (why is it that when you can’t you HAVE to pee???,) I tried to persuade the cat to cooperate.  The cat refused.  Seconds ticked by and I heard a lull in J’s movie soundtrack.  Eureka!!!  I decided to call out to him…

Now, this is the part where I must do a flashback narration.  The year is 2004.  The place is Santa Fe, NM.  It is a cold, cold night in November, and I have gone to close the gate while TGG holds the door open.  Dada is in Colorado, and J is -as was his habit at the time- running naked around the house.  TGG is in his jammies, and I am wearing a coat, but I’m still cold.  TGG is goofing around and, as I call out “make sure you don’t let the door close…we’ll be locked….” CLICK!

Long story short, I had to break a window to get in.  Try as we might, J flatly refused to unlock a door for us.  We had told him to never, under any circumstances, open the door to the great outdoors.  After ten minutes of trying to jimmy windows, persuade the unpersuadable, shimmy in through the pet door, I punched a glass window and got us into the house.

It was with this memory in mind that I called out to J.  J!  J!  J!  He came out of the TV room looking annoyed at the interruption.  I know I looked stupid.  Of course I did!  I could see myself reflected back in J’s expression.  It was an “ARE YOU SERIOUS???” expression of the highest quality.  I meekly whimpered “can you let me in, please?”  J took a couple of steps towards me and looked at the cat (his arch-nemesis!,) looked at the stick in the track, looked at his mother..

I heard him sigh.  I saw him roll his eyes.  He bent down and picked up the stick, pulling the door open for me.  Thankyouthankyouthankyouthankyou…I hugged him.  He shrugged and went back to the TV room.  I sprinted up the stairs to open the door for Dada who was just starting to walk back to the side of the building.

“Either you got very malleable in short order, or the cat has a merciful streak,” he said.  I told him J had answered my call and opened the door for me. ” Thank goodness,” Dada said.  “I had visions of you disassembling the whole door frame to get back inside…”  We went back to the sitting room and peeked in on J.  “Hey, bud…thanks for opening the door!” Dada said.

J just rolled his eyes.  Our effusion was unnecessary.  We are, after all, his to take care of from now on.  We obviously cannot be trusted to not get locked out by a feline.  We need J to look out for us.  I know this because today, when I went to the garden to water, J stood inside and pushed the sticks as far away from the door as he could with just his foot.  He didn’t make a big show of it…  It was all very Bob Fosse-like.


And then, like Shane, he was gone…


Of calamitous weather and surprising turns of events…

If you have ever heard thunder when it’s snowing, you know what I mean when I say “oh, crap!”  Such was my reaction on Tuesday afternoon when, as I emptied our mailbox, a clap of thunder surprised me.  I had walked in very light snow from our doorway to the corner where I was going to wait for J.  I looked at my cell phone, determined I had time to spare, and went to the mailbox.

I ran out of there.  I told the property manager to go home, and go home ASAP.  She, who trusts me, did so just as the rumbling got louder, closer and the visibility got less and less…  The sudden-onset blizzard had announced itself, and made a grand entrance.

I texted TGG, Dada and J’s teacher: stay where you are.  This is going to be bad.

This was at shortly after two-thirty P.M.  As I hugged the wall that flanks the townhouse complex driveway, I kept telling myself that J’s bus would arrive “any second now…”

The usual group of parents started gathering as the snow continued to fall in what seemed to be a relentless onslaught.  The road started getting slicker, and shovels and ice melt appeared.  Cars started inching down the road towards our driveway, and no sign of the bus yet.  People kept arriving and clustering in groups, commenting on the suddenness of it all.

The doppler radar had announced this.  The snow was supposed to be enough for the school district to switch Wednesday’s early-release to a 2-hour delay, and yet here we were…waiting for buses that were not coming.

And then, when the usual time of arrival had come and gone, we got word through one cell-phone armed parent: the buses were stranded down the road due to an accident.  I texted TGG at work: DO NOT LEAVE!  ROADS DANGEROUS.  WAIT FOR MORE INFO.

A motorist got stuck in a ditch trying to drive away from us.  A group of the shovelers ran to help.  I got a call from Dada: where is he?  I said “to wit?  He’s stuck in the bus somewhere down the road.”

Someone said “the buses will be here in half an hour.  We need more salt.”  I handed my keys to a guy I’d never met and told him to help himself from our garage.  He came back in ten minutes with a bucketful.  Another call: it’ll be an hour.  By then it was already four P.M….a full hour and a half since I’d heard that first clap of thunder had elapsed.

I ran home to change my socks and shoes, and to check for messages from the bus.  Pam, our trusty aide, had called to say they were safe, but that they were firmly stuck in place due to two accidents on the road bookending their route.  I called her back.  J, she told me, was happy; he had moments when he felt a little antsy, but they had crackers, water and the kids were singing and trying to make each other laugh.  I told her I’d be waiting on the corner when they got here.  She said, wistfully, maybe another half hour.

They rolled up to the corner at 7 P.M.  All in all, the kids had been sitting in the bus for four and a half hours, and they had been stuck less than a mile from our driveway, but impeded by vehicles that had been stranded, two accidents and a very steep and icy hill.  As J stepped off the bus, I was standing there with my lantern, my shovel, and such a great feeling of relief that we would soon be warm and safe at home.

We traversed the icy, slippery road and made it home to doff our coats, scarves, gloves, hats, and bags, and to use the bathroom.  J had, Pam told me, had a banana, crackers, water.  The people who lived near where they were stranded had come out to offer food, blankets, and their restrooms.  The kids had been worried, but they’d kept it together.  As soon as we got home, J made a beeline to the bathroom, and I called Dada and TGG to tell them, once more, that the reports about road conditions were grim and to stay where they were.

They didn’t listen.

Dada took two hours to get less than 1000 feet from his office, and then he turned back to the warmth and safety of his workplace.  TGG, who had taken refuge at a fast food place that was closing at around ten, made his way to Dada’s office and there they sat, drinking coffee and checking the weather and road conditions.  They finally got word that an alternate route was more open, and -leaving TGG’s car behind- made their way home.  They arrived at nearly midnight.

The schools were still on a 2-hour delay when we crawled into bed, and classes didn’t get cancelled until 6:20 the next morning.  The superintendent (the Mr. Potter of Morgantown from what I heard from other parents) referred to the whole situation as “at least we didn’t say “see ya” and leave the kids behind.” Some students, mind you, didn’t make it home until midnight.

I have heard the argument that “parents should have gone to get their kids from school if they were worried.”  To that I’ve answered that in loco parentis applies, and the school has to work with what they know about the weather, and the city is responsible for monitoring potential hazards on the roads BEFORE bad weather hits.  It’s not like they didn’t know it was going to snow.

All in all, the situation has made me be thankful for all those Shackleton books I’ve read over the years.  It’s also made me not want to watch The Revenant.  I’ve also come to understand that we have, indeed, come a long way with J: on the one-month anniversary of his med being completely taken away, J sat gracefully, calmly and patiently for four and a half hours while stuck in traffic.

If that isn’t an awesome thing to discover, I don’t know what is.  He was calm and happy, and glad to be home.  And when I told him that he wasn’t going to school the next day, even though classes hadn’t been yet cancelled, he took it with a smile that indicated relief and the desire to just chill after his long wait at the bottom of the hill.

I have to say this is a surprisingly wonderful discovery: J can function without the Risperdal under rather extreme conditions.  I am grateful, happy, encouraged…and looking for a place where we can live without the ONE road in and out that might get horribly stuck in bad weather.  Not that there will be school buses next winter, but…lesson learned……..




On the Ninth Day of Christmas, all is quiet and happy all over the place…

Things are going well.  The med is gone, baby, gone, and we’re definitely hanging in there.  Four and a half pounds lighter, and still hanging in there.  A little obsessed with the band-aids, but hanging in there.

Is J a little antsier?  No, not really.  He’s a little more prone to boredom, but he’s also a little more enthused about helping.  He waited patiently for the time when we actually could leave for the theater to watch Star Wars The Force Awakens, and this even though we were supposed to go the (we discovered suddenly) sold-out 10 a.m. show…he also patiently waited when he realized that the 1:50 show was sold out, too.  He was ok with coming home, putting groceries and purchases away, and eating lunch before actually heading out to the theater with a rather long, drawn-out stop at Barnes & Noble.

All this sans Risperdal…

If you had told me J wouldvpatiently wait through reversal of plans after reversal of plans…  Yes, he’s picked at his chin a bit more than usual, but he LISTENS when I tell him we have to wait a little longer.

On the  “not-quite-good” news front, the psoriasis made a comeback, and this time it was next to J’s goatee.  We thought, initially, that it was razor burn, but as soon as we recognized the characteristics, we applied the lotion his doctor prescribed and the patch disappeared in short order.

Of course, I have to point out that first I had to FIND the lotion.  J, seeing a prescription label, assumed this was something one drinks and, based on experience, assumed it would taste like crap and hid it.  He hid it along with my wrist stabilizers (which I’ve been needing and wanting,) and several other items that -to him- are not “friendly.”  Once I explained that the prescription was for that patch on his chin, he allowed me to take it out of the box, and put it in his bathroom.

We are negotiating a lot more.  Today, for example, we negotiated chocolate chips for every task he completed while we baked biscotti.  I’ve never had a more avid helper, or one who can bounce so easily from dark chocolate and semi-sweet chocolate chips with such alacrity.  He was disappointed when I told him we were done with the baking for today, and accepted his chocolate chip-less fate with aplomb.

By now, as you may know, we are deep into the Twelve Days.  It is, as I type this, the aftermath of the Ninth Day of Christmas, and this year J has actually sung the song with us…if he doesn’t raise his voice, I can see he’s enunciating rather nicely, but we -sadly- drown him out.  He’s not thrilled about Miss Zelda’s eager participation in the ritual, but he tolerates it as long as the cat sits next to Dada and doesn’t attempt to approach J’s present.  The fact that we now have a cat that, regardless of where she is in the house, hears The Twelve Days of Christmas and runs to arrive in time for gift-giving is yet another sign that this is not a run-of-the-mill household.  If she has not left the room for any transaction in another area of the house, she is calmly sitting under the tree, waiting for us to join her…

The weather has been kind…sort of.  When it’s cold, it’s very cold.  The rest of the time it’s basically gloomy or rainy, or it rains.  Winter begins now, I remind myself, and January will make up for all that we’ve missed so far.  I get the feeling that snow days (or harsh weather days) will abound.  In my efforts to over-prepare, I might have had a hand in the persistence of warm weather, and I think I (and everyone else) will pay for it in the coming weeks.

But J is happy.  J is calm.  J is handling himself beautifully, and I cannot help but be hopeful about everything else.  I will not go out and buy a lottery ticket anytime soon, but I will definitely savor this uptick in goodness that comes from the med being gone and J exercising his most mature self in the process.

I can’t ask for more.  Well, I could, but that would be the same as being ridiculously greedy, and we want to spread around the good stuff to those who need it…

We are happy being happy with the happiness we have…we hope some of it comes everyone else’s way too…



Learning from a manic morning…

If, on a morning like this one, I have to leave the house with J and my husband, J sits in the back channeling Bob Hoskins in that last scene from The Long Good Friday.  In the mirror I can see a full gamut of emotion being displayed in quick succession…only, of course, there’s no Pierce Brosnan in the front seat and the resolution of our car trip is much happier than the one we (and Harold) know is awaiting him at the end of the movie.

I had a doctor’s appointment.  The usual rigmarole where I get told “well, Ms. So-and-so, at your age…”  Now I have to go in to have myself poked and prodded, stuck with needles and, in general, told that the chemistry of my body is OK considering that I’m slowly inching towards my fifties and what do I expect.  Par for the course…

J, however, thinks that when I get dressed and hop in the car with them, it’s about him.  This morning, just to prove that he can be the monkey wrench thrown in the midst of the gears of any well-oiled machine, J decided that he was going to get dressed as slowly as humanly possible.  Had he been able to put his toes into his socks one by one, he would have.  Had it been possible for him to brush each hair on his head individually, he would have.  And the process of choosing between TWO pairs of shoes made me wonder what Imelda Marcos went through every morning considering the amount of footwear she owned.

I tried to be reassuring by saying “come on, J!  I have to go somewhere this morning.”  He wasn’t buying it; he came into the bathroom as I was trying to put my face together, and he turned off the light.  “Do you REALLY think I don’t know how to do this in the dark???,” I asked him.  He switched the light back on and sighed.  He then proceeded to put away every single piece of clothing I’d laid on the rocking chair in my bedroom.  I whipped off my robe and showed him I was fully dressed under it.  “Should’ve checked for a bra strap, sir!”  He half-heartedly stomped away to the kitchen.

I am so settled into a particular groove that any alteration to my routine is nerve-wracking.  It’s the Autism, I tell you.  I have become accustomed to the usual rhythm of life and, if I have to get dressed and leave the house, I want to do it so efficiently that J has very little room for anxiety.   This makes ME more anxious.  I walk into the doctor’s office telling the nurse “I was yelling at people and running around this morning so my blood pressure is high!”  It’s usually true; it’s never alarming, just high enough to prove that I’ve been rushing around at home.  The doctor, bless her heart, tells me that’s not bad for all the anxiety we face.

Do we face anxiety?  Are we stressed out?  Lately I’ve been wondering about this, and I’m not really sure if I’m just being ridiculously optimistic about things or if, in fact, things are as I imagine them to be.  J, thank goodness, seems to be doing well in general.  He is happy enough; he is annoying enough; he is antsy enough; he is discontented enough.  On my desk I have the list the psychiatrist wanted me to make with the instances of anxiety or impatience that J experiences until our next visit.  It’s not as long as I feared it would be; it’s a list, but it’s not a long one, and I am left wondering if I should even worry about when J gets upset.

Let me rephrase that…I DO care if J gets upset, but I care in the same way about when TGG or my husband get upset.  If something is bothering any of them, of course I want to soothe, comfort, please, encourage, console, etc.  The psychiatrist’s request, though, made me feel I should be fearful of when J is unhappy, as if unhappiness is something so horrible that it needs to be addressed immediately and stomped on like a cockroach.  And then I ask myself, is unhappiness a bad thing?

I know that J needs to see the psychiatrist.  I know J’s medication has worked as we wanted it to, and now we’re probably ready to start transitioning to less of it until it fades into family memory, a period of our lives that we’re done with and which we can hark back to in years to come.  Has the medication helped us be happier?  No, I don’t think it has contributed to our happiness per se, but it has allowed us some latitude by removing the anxiety that made J want to bash his head in with his fists.  Is that happiness?  No, I think it edges closer to balance, to peace of mind…if happiness springs from those things, that’s just icing on the cake.

I want my children to be happy.  I want my husband to be happy.  I want to be happy.  Not especially in that order, not alphabetically, not hinging on chance or outside factors.  We can’t provide happiness, we can only hope that we will find it and enjoy it, but this cannot happen unless we know the polar opposite, right?  Isn’t trying to make J happy all the time counter-productive, then?

As J hopped out of the car at school, he didn’t even glance at me.  I called out to him and he rolled his eyes, turning to face me.  “I told you I was going on an errand.  Don’t be sore because you were wrong, J!  You can be sore all you want, but don’t hang on to it and don’t waste it on silly things.  OK?”  (Yeah, I used J’s trigger word…it flew out just like that…)  He looked at me, still somewhat miffed, but more relaxed.  I love you, I said, and he repeated -grudgingly- AH WOV EWE, and turned away towards the building.

You buy a ticket for the roller-coaster, you can’t expect a ride on the merry-go-round, can you?

In your -hopefully- big hands I put all my troubles, God…

Every morning a string of thoughts parades through my mind.  There is a cast of usual suspects among these thoughts: “morning already?????  I just fell asleep!!!,”  “memo to me: no dairy products after 8 PM,” “what day is it?  Please let it be Saturday…please, please, please!!!”  I try to throw “I put this day in your hands, God” in there every morning.  Some mornings I forget.

Lest you think I’m being absurdly religious on a Friday morning, allow me to tell you that this particular thought has little to do with religion: I am thinking about J’s Spring Break.  I have previously mentioned that I do believe in God, and in his sense of humor.  TGG is agnostic and we often have rather animated discussions about the subject; my husband quietly prays every night before he starts snoring vigorously.  J is the person closest to God that I have ever known, regardless of the fact that he has no clue about religion or faith.

TGG’s agnosticism harks back to the Eighth Grade when he had a Math test.  Yes.  TGG is agnostic because of Mathematics.  I was never mathematically inclined (as Mrs. Henning in the Second Grade informed me) and I think TGG has inherited my un-mathematical-ness (I KNOW it’s not a word…in the outside world.  In this house it’s a perfectly good word, thank you.)  Back in 2005 we waged massive battles to get TGG to actually do homework.  The kid is brilliant!  His IQ is high; his desire to use it to advantage is nil.  TGG is one of those people who is smarter than is good for him, and who make parents tear their hair out in frustration on account of their laziness.  For this one Math test (Algebra, perhaps?  I can’t remember,) Dada had sat with him going over the material; there was such a vast amount of frustration at the kitchen table that it’s a miracle every meal after that night didn’t turn sour by osmosis.

TGG failed that test.  He came home and announced he was angry at God for not answering his prayers to help him.  I replied, in my usual tart fashion, that goes answers prayers, not Math tests.  This I knew from experience.  If I’d spent as much time studying for Algebra, Trigonometry and Geometry as I did praying for divine intervention in helping me pass, I’d have had a better chance.  Instead of taking the “I’ll study more” tack, TGG decided to take the agnostic tack, and so we find ourselves (seven years later) still discussing God’s existence (or lack thereof) on a semi-regular basis.

I have my own logic for believing in God’s existence and, in my own informal way, I express my faith in his plan…and in his sense of humor.  Perhaps because I grew up in a very traditionally Catholic household and attended Catholic school through high school, I am knowledgeable enough to steer clear from the aspects of organized religion that are in conflict with my Humanities-based academic choices starting in 1982.

I don’t speak openly about my faith.  This is not because I am ashamed of it, but because people will then ask questions: which religion I profess?  Where do I worship?  Do I read the Bible?  How does my faith reflect my political views?  Do I think J’s autism is an act of God?  How do I reconcile my faith with J’s disability?  And, my personal favorite, am I worried about going to Hell?

I am a recovering Catholic.  Every Lent I fall off the wagon.  I am a big fan of the Virgin Mary, not because she was a virgin but because she was a mother, and she did make Jesus turn water into wine (ah, the power of mothers!)  I believe in God and his grace and sense of humor.  I think J is the way he is because it is the way he is, and if God willed my son’s situation for MY sake, I wish he’d left J out of it.  I believe that God has a plan for each of us, and if we are patient and we are willing to pay attention, we will reap the benefits and rewards of God’s plan when it’s our turn to do so…

Am I worried about going to Hell?  No.  I am worried about leaving Hell behind when I go; that is, I am worried about the pain and concern, the upheaval and mayhem that my parting from this world might cause others.  Last night I told my husband that I worry about the limited amount of towels we own.  “When I die, if you run out of clean towels and no one remembers to do laundry, you’ll end up drying yourself with toilet paper.  And what if you then run out of that?,” I said.  “Is that why we currently own about a hundred rolls of toilet paper?,” he asked.

I am heading into Spring Break by putting the whole matter of J’s hats and keeping him entertained in God’s hands.  (I can almost hear God using his best surfer-dude voice to say “so, what do you want me to do with this?” and laughing at me.)  This doesn’t mean I’m not going to put in the very same amount of effort I’ve been putting on phasing out the hats and keeping J engaged.  This doesn’t mean I’m throwing my hands up in the air and saying “ok, let’s do this!”  This means I hope God will lean his ear in my direction during this time and listen to all my complaining.

I don’t think I have as much faith in God as he has in me.  Why else would he entrust J to a person who didn’t learn to ride a bike until the age of ten?  (Really.  And don’t hold it against me…I was not very coordinated.)  Why else would he allow me to discover patience after spending a whole lifetime being impatient?

I hope my views are not terribly irreverent, leading all you faithful followers to abandon me in droves.  I’m just worried this morning.  I am armed with an egg timer and I have a week of teenaged J at home in my schedule.  What I used to solve swiftly with play-doh and jigsaw puzzles has become more complex, and I am ill-prepared for the coming week.

Here I go…I’m going to do my best to be a good, kind, and competent mother…and not lose my marbles in the process.