Oh…it’s cold!

This morning, bright and early, we went out for my doctor’s appointment.  J wasn’t particularly excited about the prospect of leaving the house, but since the doctor’s office is next to Target, he made an exception.

Without the wind chill we were at 13 degrees when we left the house.  Not much had changed an hour and ten minutes later when we started making our way back.  We had parked the car in the garage last night, and this had only ever happened before when we had a Tornado Warning, and it was hailing.  We drove straight into the garage when we got home, and J scampered into the house quite agilely.  For J to scamper it takes quite a bit…he stood in the dining room, encased in scarf, gloves, hat, earmuffs and jackets until he felt like he could trust the temperature indoors.

None of this should surprise us.  This is not our first winter here, but we have definitely grown accustomed to being inside the house rather than waiting for buses in the wee hours of the morning, or walking against the wind on our way home in the afternoon.  J found his fleeciest fleece pants, and his most thermal thermal top, and he bundled up before returning to the dining room.

That the forecast predicts sixty degrees for Saturday, and snow for Sunday is not surprising either.  The thermostat will be set at 68 degrees during the day, and at sixty-five at night until winter passes.  Such a big townhouse with three levels (if you’ve been reading this a while you know the basement is the frozen tundra, the kitchen level is more temperate, and the third floor is tropical) cannot be kept satisfactorily warm or cool depending on the season without the assistance of multiple blankets (walk around this house from top to bottom and you can gather layers as you move towards the basement,) or box fans (the third floor usually sounds like a turbine test facility during the summer.)

The Second Day of Christmas was successful.  We baked cookies in the afternoon, and J was looking forward to the after-presents dessert.  Last night’s dinner was a typical Puerto Rican dish, and J stood in the kitchen (smiling from ear to ear with anticipation and delight) while we cooked. He was so giddy we even took pictures.  Every time I lifted the lid of the pot he would open his mouth like a baby bird…but he ate a prudent amount of food (he was reminded that there were cookies,) and he giggled throughout the meal.

It’s nice to see him happy.  It’s nice to see that he is enjoying those little moments.  It’s also nice to see his sense of humor and funny bone are in excellent shape.  Today TGG stopped by and I made a comment about something J had done to confound us.  J, who was sitting eating his lunch, started giggling.  I told him “yeah, you think you’re funny.  What you are, my friend, is a brat!”  And J then started laughing heartily.  It was contagious.  Before long the three of us were laughing, and -once we slowed down- J would suddenly get a fit of giggles whenever he looked at us.  I know…you had to be there, right?

Tonight we are making turkey meatball soup.  J has been in and out of the kitchen all afternoon, inspecting what I am doing to prep for that.  Once in a while he stops in front of the glass doors and says BRR, and dashes back to the basement.  His mood is light.  He is happy with his Christmas village, and our ins and outs from that room.  He lets us cuddle up to him, and is very affectionate, until he’s tired of being affectionate and, laughing, kicks us out of the room.  As I said: he’s a brat.  An adorable brat, but a brat nonetheless…

The only fly in the ointment today was that J wanted pizza.  We told him he could have it tomorrow.  He got angry.  He didn’t have a meltdown.  He had a small tantrum.  It’s lovely (and very helpful) to know the difference.  Tantrums are, in a very real way, much easier to handle than meltdowns.  A tantrum has an obvious cause, and it is a battle of wills between he who throws it, and those who are on the receiving end.  A meltdown is an existential issue; a battle with something that is hard to define, hard to process, almost impossible to control.  The factors involved are many, complex, and inexplicable to those who don’t experience meltdowns as a “way of life.”

A tantrum is also easily resolved with a simple, firm NO.  Once J saw we weren’t budging, J accepted that PIZZA is tomorrow, and he moved on.  OK, he was miffed for ten minutes, but then we made breakfast burritos (small ones…like the smallest breakfast burritos you’ve ever seen, and they had pureed carrot in them) and he forgot his displeasure.  That is how we confirm that a tantrum is what we saw.  A meltdown wouldn’t have found consolation or satisfaction in a burrito…much less with pureed carrots.

And that’s where we are.  On the brink of making meatball soup (that has pureed carrot in it, too,) and getting ready for Third Day of Christmas presents.  Inching forward a little more every day, sitting for a bit to reassess once in a while, hoping for the best always….

A feeling of complete and utter failure…

I have read every single paper I’ve been able to find online about SIB in adults on the Spectrum.  I’ve tried to apply everything they say to do and not do.  I have tried to be as zen-like about this as I can possibly be.

I’ve failed.

I am feeling horribly frayed around the edges.  I no longer know what it’s like to keep my cool.  The more I think we’ve progressed, the harder it is to face the fact that here comes another massive meltdown that I cannot explain, followed by a wide-smile tantrum that I cannot sit through without feeling a terrible itch cover my body.

I have considered running away.

I then remember that Dada is at work, and I can’t leave the kid alone.  Then I get angry because the kid is 21, and I shouldn’t still be doing this.  Then I say to myself that it’s not his fault.  Then I get angry with Mother Nature.  Then I cry because I am obviously stupid and cannot handle this like a normal, intelligent, proper parent would.

Oh, don’t worry about me.  You know I’ll start floating nicely and eventually I’ll paddle, but right now I’m just not feeling it.

I’ve caught myself muttering some pretty mean things when I’m irritated by yet another cycle of repeating the same simple instructions for the umpteenth time in a day.  I don’t mean any of them, but I say them nonetheless.  I cannot be the pretty, put-together, glossy poster parent of an adult with ASD.  Or what people expect that to be…  In truth we are all a small percentage cantankerous, monstrous crank, and we push that feeling down so we can do what we do without becoming horribly bitter.  But the bile has to come up once in a while, and we might nitpick on things that have absolutely nothing to do with our children because it’s better than actually letting the cantankerous, monstrous crank loose on those we love.  I, for example, would like to drop a piano on the new Daisy Duck and Minnie Mouse….and updated Dora the Explorer.  And whatever the new Strawberry Shortcake and her friends are supposed to be representing…piano on them, too.  And Bratz dolls.  In fact, any doll that is just weird…like those vampire-like, ghoul-like Bratz-like dolls.  What is THAT?

No, I don’t walk around like inebriated Elaine Stritch pointing at these toys and muttering vile insults in the toy aisle at Target…

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but I’m doing it inside my head.  It gets the aggressions out.

There are days when I feel like Michael Palin’s character as the end of A Fish Called Wanda approaches.  I’m pretty sure I look like it, too.

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Today I just feel like Bette Davis in the earlier scenes of Now, Voyager…but I think she was under her mother’s thumb more than I am under J’s.  I would factor in, though, that I’ve needed a haircut for a while and haven’t had the time, and my skin could do with some kindness…

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but the deer-in-the-headlights look is there.

I am not expecting to suddenly have the situation turn around so that I’m Julie Andrews spinning in circles on top of the mountain singing that the hills are alive, but I will settle gladly for a little Auntie Mame‘s misdirected optimism.

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All I really wanted this morning was no hitting.  I wanted to pace the day so J would be entertained, stimulated, happy, occupied with things that would keep his hand from pounding on him.

Since I can no longer have that…what do I do?  I can’t call Ghostbusters.  I can’t explain my plight to anyone who will understand (at least no one who I actually know, and who will empathize and say “there, there…we’ve all been there.”)  I can’t yell at every telemarketer, or drop pianos on anything.

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I can only hope that the end of the day will find me (US) sane and happy and whole.  I can only hope that whatever dark cloud is marring J’s usually-partly cloudy disposition will pass, or rain already…all the thunder and lightning and no rain is ominous and frustrating.

So there we are on Friday: over the meltdown for today (hopefully,) hesitating about having the sitters come over tomorrow (what if he does THAT when they’re here????,) wondering what could be so overwhelming that it’s overwhelming him so much, and trying to keep it (whatever “it” is) together and failing.

I’m frayed.  I’m frayed not like a new pair of jeans you paid too much money for, but the holes are strategically placed.  I am frayed like a pair of beloved jeans that suddenly go soft in a spot and then softer and then your buttcheek is exposed and you realize there’s a pimple there, and you’re wearing your grungy underwear that you save for when you don’t care, but this time you’re at the grocery store and you run into people you know…and they recognize you from behind…

Yeah…

That’s how I’m feeling…

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.

SORRY!

Bedtime.

PIZZA.

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

FIVE GUYS.

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

SORRY!  I LOVE YOU.

Oh, we love you, too.  Bedtime.

SORRY!

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

STORY?

Yes.

SORRY!

OK, bedtime.

PIZZA.

The iPad talks for me: NO PIZZA FRIDAY.

FIVE GUYS.

Nope, buddy…nothing doing.

SORRY.

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!

A small improvement, and we’re glad of it…

All my frantic printing, laminating, velcro-ing and reinforcing yesterday morning yielded positive results.  J didn’t have a tantrum last night.  He still asked for enough bandaids to immobilize a small animal, and he’s still wearing a piece of a leg of a pair of tights over his right hand, but no tantrum is progress.

Last night when we told him that Friday is a holiday from work for Dada he asked to go to the movies.  It was so spontaneous and unexpected that we said yes, and he went to the kitchen and put a movie on the schedule.  Dada, who was on his way up to the bedrooms with a basket of clean laundry, noticed that J was actually weighing the possibility of going to Target or going to Five Guys, and he opted for Target.

Still no word from the psych, but we suspect he’s out of town for the holiday and will reply as soon as he returns.  In the meantime, we’re going along with what we’ve put in place, and it seems to be working for the time being.  Hopefully, J will continue to feel encouraged by the hoops we’re jumping through, and he will modify his behavior without the need for more medication.

And now, off to do another chore so maybe we can go to the pool, or take a walk.

A pattern emerges…it’s not a good one

All through the day, from the time Dada and TGG leave for work until they come home, J is happy and calm.  After going to the gym, while having dinner, J is calm.  And then, randomly and unexpectedly, we get “the meltdown.”

This doesn’t happen while he and I are alone.  I can tell him NO, ask him to help me when he’s engaged in something else, take him out of his routine, and he’s fine.  The only thing I’ve been able to pinpoint so far is that J has tantrums when Dada and/or TGG are home.

I know J loves Dada and TGG.  I know he likes to have them around.  I know he enjoys their company.  I don’t know why he would get upset when they’re here.  I’m trying to figure this out.

My guesses so far:

1)  Dada and/or TGG take my attention away from J;

2)  Dada and TGG don’t spend enough time with J;

3)  Dada and TGG are more easily spooked by the tantrums than I am;

4)  Dada and TGG pay more attention to J when he throws a tantrum;

5)  I pay more attention to J when he throws a tantrum while Dada and TGG are home (because he doesn’t throw them when they are not.)

Last night the tantrum came between putting on one sock and putting on the other.  J immediately went to SIB when he wanted his bandaids for his hand.  No warning sound; no hesitation.  SIB and that was that.

I made him go to the TV room, and he was going to hit himself again but I held his hand and jammed the iPad in front of him.  “We don’t HIT.  We SAY!”

The process is convoluted and frustrating because I’m trying to reason with a person who is just NOT into it…  So part of the effort goes into “talking him down” long enough to get him to understand that we’re trying to understand why he’s upset.  Anyone who has tried to “talk down” an individual in the Autism Spectrum knows this is often easier said than done.

Talk him down I did, but it wasn’t easy, and I had to make sure he understood that I was not happy about his behavior.  Once he got what he wanted, J turned into Mr. Charm…and I was not buying it.  I don’t buy Mr. Charm on a regular basis, and I flatly refuse to do it when it comes in the heels of being obstreperous.  After his outburst, and once he had re-engaged with his bedtime routine, J started the I LOVE YOU on maximum speed.  I sat down on his bed and explained that I love him, but that I was angry because he is skipping all the tools we give him for communicating and going straight to SIB.  I also explained that if he keeps using PAIN in his HAND as an excuse for melting down, he’s going to the doctor for an X-ray.  Even though J then backpedals on the melodrama over his hand, he IS going to the doctor.  I am fairly sure that he IS hurt, and he needs something more than his go-to remedies of sixty bandaids and a piece cut off from a pair of tights worn as a sleeve over his hand.  The medical implications of this situation do not escape me, and I don’t take them lightly.

While I figure that part out, however, I’ve been proactively pursuing ways to help J communicate when he feels “stuck.”  This morning we sat down with the printer, the laminator, and our go-to ASL website (http://www.aslpro.com/cgi-bin/aslpro/aslpro.cgi) to figure out the signs that can help him tell us what he needs.  I also printed four DON’T HIT signs to help him remember this particular point, and I printed a two-sided HELP! card with the word on one side and the signs on the other.  A reminder to use his Proloquo2Go hangs prominently in his TV room.

Of course, the e-mail in which my husband asks the doctor to give us a little more feedback so we can make an informed decision on J’s med dosage has been sent.  This e-mail is so beautifully composed, so eloquent and to-the-point that, when asked for my opinion on its contents, I replied to Dada that it makes me want to make long, sweet, slow love to him.  “So it’s ok, then?”  Yes, it was more than OK; it’s the e-mail that I can’t write right now because my mind is flooded with all the other things I need to address before I fully address this issue…

We’ll see how this goes.  So far this morning I’ve done everything humanly possible with a printer, velcro, laminating sheets, and chutzpah.  I’ve spoken to J; I’ve involved him in the process of making things clearer for him to make things clear for us…  I’ve anticipated everything that my addled brain can possibly anticipate.  I’ve agonized over having to give him more med, and I’ve researched as much as is available (and comprehensible to a non-scientist like me) on the internet. I’ve texted back and forth with J’s teacher, and I’ve asked for input from J, TGG, Dada, and the teacher.

For the time being, I’m tapped out.  I will see what the rest of today brings, and I will try to address what TGG and Dada can do to approach the situation better when they are home.  It’s all I have right now…

It’s time for chores (oh, so late in the morning that it’s almost afternoon,) and for engaging J in something that has nothing to (outwardly and obviously) do with behavior modification.

I’ll keep you posted.  Suggestions are welcome.

OK…so MAYBE it’s a setback…

We have heard J grunting.  Softly, but grunting nonetheless.  Last night, after what I would deem a very good weekend, J threw a tantrum that was spectacular…all because of cheese.  I didn’t let him win.  Maybe I should have?

It all started last week with the hats, and it seems to have become slightly worse since then.  It’s not that it’s constant, but rather that it’s happening at all, and it’s pretty intense.  Last night, for example, J went completely overboard with his displeasure over being denied cheese he didn’t need, and his hands and forehead ended up red from all the hitting and smacking he was doing.

I told him to remove himself from the dinner table and he resorted to one word requests, which are not acceptable.  When he wanted to return to the table, he was asking for CHEESE not for FOOD…I said NO.  This effectively marked the end of J’s dinnertime; it also marked the end of mine.  By the time we’d been sitting downstairs for about two minutes, J was resorting to THANK YOU.  I said NO.  I explained that I was very sad, really angry and worried.

He tried to deflect with THANK YOU again, and I simply put a timer on and told him he had to get his hats when the timer beeped.  I went upstairs.

I don’t know what to tell you.  I don’t know if the body is now officially aware that it has less Risperidone to work with and it’s reacting to that.  I don’t know if he’s just thrown off by the saga of the hats at school.  I don’t know if it’s the absence of his trusty aide from regular school who this year didn’t work ESY.  I don’t know if it’s hormones.  (Damn hormones…they’re driving ME nuts, so if he’s in the same boat…we’re screwed!!!)

I am trying to figure out where the issue is coming from, and I’m not succeeding so far.  Is it that I’m stressed out?  Is it that the move is approaching and he senses the upheaval that comes attached to it?  Is it that Dada is working a lot and feeling slightly overwhelmed by work?  Is it a combination of all these things?????

I am stressed out enough that this morning I yelled at the customer service rep from the health insurance company.  After submitting all the paperwork regarding guardianship and being given the green light, today I got put through the same ol’ wringer again…same questions, same balking, same you need to fill out a form to be authorized…  And I lost it.  I really did.  I cried (I hang my head in shame,) and I issued as many insults as I could come up with without actually saying anything uncouth.  She told me she’d call me back and I flatly refused to accept that option.  (Poor woman…I’m sure she’s flagged me as a customer whose calls she won’t take.)  I asked for a supervisor, and then I clarified to the supervisor that my reaction, inappropriate and unfair though it was, stemmed from the frustration caused by having to go through the same rigmarole time and time again even though I’ve been told it’s all been notated in J’s file and I’m clear to ask away as his legal guardian.

At the end of the call, I was satisfied with their answer.  At the end of the call, I asked the person who ultimately helped me to insert into their training program a concise explanation of what an Order of Appointment of Guardian entails, and some sort of sensitivity training where the customer rep learns not to say “if the member signs a form giving you authorization” after they’ve heard over the line “the person in question does not know how to write his/her name and is a protected person precisely because they lack the mental capacity to take care of their own medical needs.”  I don’t think the script they’re given (because I’ve taken trainings of all sorts over the years, and I know there’s a dialogue that one learns in order to sound soothing, helpful and knowledgeable) is actually productive when the customer is saying “we’ve been through this before and you need to contact your supervisor NOW to clarify this point.”

These are my missions for today: calm down before J gets home; observe J as closely as possible to determine what might be triggering his altered moods, and keep him engaged so that I can redirect him as quickly and effectively as possible.  I don’t know if I’ll be able to achieve any of this.  I confess to you that I am slightly thrown off by this new development for the worse, but I am trying to be positive about what it might mean.  It could be something quite simple, right?  It could also be something quite difficult to pinpoint.  It could also be the new normal where grunting is back in vogue and we regress to refusing to let go of the hats.

I thought we were making progress, but perhaps we are simply moving crab-like towards the side and sort of backwards and forwards…

I wish the hats had been part of the note sent by school to the other school.  I wish I’d brought this up myself rather than decide to think they know what they’re doing and it would be bossy and nosy of me.

I feel like I am dealing with as much of a handful but of a different quality, and…I confess…I am failing miserably at being calm, cool and collected about this…

Let’s not call it a setback, shall we???

“I believe the appropriate metaphor here involves a river of excrement and a Native American water vessel without any means of propulsion.”

Sheldon L. Cooper, Ph.D.

Let me start by stating that J is being a butthead about his hats at school, but that this is not entirely his fault.  Sure, he has run with it, but it all boils down to a failure in communication on the part of the grown-ups.  It seems that J’s school failed to inform the summer program that J does not wear his hats while in school, and I didn’t know that this was the case until a proactive bus driver who happened to run into J at summer school noticed that he was walking around wearing both hats…

Of course, this has unleashed a minor storm regarding people overstepping their bounds and people being defensive and territorial.  My take is that we really need to all stay on the same page or J will run roughshod over all of us.  As J’s mother, I want him to consistently follow rules and meet certain expectations so I am partially miffed that no one mentioned the hat situation to the summer program staff, and partially miffed at myself for not having the presence of mind to mention it when school started.

We’ve had two tantrums.  Yesterday’s was brief and, I believe, acquiescence on the teacher’s part was key in resolving it.  Today we are sporting a nice bump and bruise and a scratch, and the note was not quite what I wanted to read at the end of the school day.  J was aware that he had done something wrong (which supports the notion that he acted like a butthead and had no real justification other than a deep-seated desire to assert his will) and has been very apologetic all afternoon.  Apologies, however, will NOT fix the problem we’re facing.  The goal has all along been that the hats eventually go the way of the dodo bird, and the boxing gloves, and dropping the ball on that due to a lack of communication is counterproductive at best.

When J got home yesterday, I explained to him that hats were not to be worn at school.  I wrote a note to the teacher and asked her to call me if he didn’t behave.  I got a note.  J had another meltdown in spite of my warnings…

Out comes the egg timer, my friends.  We have spent a considerable amount of time without the hats on since he came home, and I sat him down again to make things crystal clear.  First, though, I took him to the bathroom mirror and showed him the bump and scratch he made on his forehead.  This he didn’t want to see, so I sternly informed him that if he has enough balls to bash his forehead with his fist, he also has to have enough balls to see what results he has achieved.  Contriteness soon followed, peppered here and there by rather vigorous attempts at THANK YOU that nearly drove me insane.  I was not buying it, and he knew it…

J is nothing if he isn’t smart.  He also is nothing if he isn’t stubborn, but this time he is well aware that I am not pleased and that I won’t back down from my stance.  He tried all sorts of things to get me to be my usual goofy-mom self, and all he got was NO.  I explained several times that the hats were not to be worn in school, but that the biggest problem I was having was with the rude tantrums.  I planted the egg timer firmly on the counter and, even before I turned the knob, J was removing his hats, handing then over and saying THANK YOU.

Eager to please, J cleaned my bathroom, vacuumed the third floor, helped gather the trash and started a load of laundry.  Then we sat with old Better Homes and Gardens magazines and worked on pointing out those things for which we know words and signs.  He’s getting really good at it, and he’s realizing that all these pictures represent the same words as his flash cards, but that there are so many more versions of what they look like!

It is now 8 P.M. and peace has been re-established.  We are fine, J and I, but he knows tomorrow I expect those hats to come off when it’s time to work.  I’ve told him so, and he’s handed them over when I’ve asked for them.  The white flag of surrender isn’t flying, but we’ve reached a point where, yes, we got him ice cream from the ice cream truck.  And he said THANK YOU, and he was pleasantly surprised…

And tomorrow we’ll start again because this is NOT about his med, this is about teenagers thinking they’re right and thinking the world has wronged them, and that’s all well and good, but the hats are put aside at school…

I think we’ve managed to somehow plot a course away from the river of excrement, but I’m not going to be complacent about this.  J is, after all, his mother’s son and that stubbornness and willfulness came from somewhere.

That’s the way we roll…