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…

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The Wednesday Whirlwind…

It rained last night…and it thundered.  It thundered with gusto.  It thundered to the point where the cats were whining at us to let them climb under the blankets.

J is doing well.  In fact, J is doing so well that he now insists on working through his flash cards because he is hungry for more vocabulary.  Last night he insisted on sitting with us and working through ALL his flash cards, and that amounts to well over a hundred.  (I’m counting them today…I need to edit the list that I’d created the other day because we have a lot more now.)

Is it because of the reduced dosage of Risperidone?  J is talking more.  J is more alert and involved.  He gets upset, but he is handling his moods very well, and I don’t really know if it’s because he’s matured or because we’re engaging him so much.  Whatever the reason, we’re very happy and relieved…

J is learning more signs and using his Proloquo more than ever.  We are getting actual spontaneous communication more frequently than before.  He hasn’t yet started a long-winded conversation with us, but he is more willing than ever to use any means available to say things.  Whether it’s something he wants or needs, or something he doesn’t want, we are getting better at understanding that WORDS work better than hollers.  

This morning, for example, we walked out the door to catch the school bus and were met by a bevy of dogs out on their walks with their owners.  These were the kinds of dogs (and I don’t know how J makes that determination other than because of a “vibe” they give off) that make J let out his high-pitched wail.  I made him stop, and told him we would walk through the construction site.  It was muddy, and we had to go slowly so as not to slip, but we navigated it with a minimum of trouble.  While we walked I explained that the next time I’d rather he say DOG, PLEASE like he does when he doesn’t want Zelda the Kraken around, and then we can redirect our steps away from the canines.  

We got to the corner with plenty of time to sing our Bus Song, practice the signs for TREE, LEAVES, GRASS, BIRD…all things we see while we stand there.  During a break in the singing, I turned to J and said (and signed) I KNOW YOU WORRIED ABOUT THE DOGS, BUT WE WALKED AROUND THE HOUSES AND ALL WAS GOOD.  And then I was surprised (pleasantly) by J looking at me, smiling and saying THANK YOU!  

This was not the repetitive, meaningless THANK YOU that he uses to divert attention or indicate that all is well.  This was ONE single, solitary, fully significant THANK YOU directed at me for the steps I’d taken to ensure he didn’t get more upset about dogs.  He meant this.  Don’t ask me how I know it, but I know it.  This was not random, empty gratitude…

When I got home, maintenance came to work on the kitchen faucet.  They replaced the faulty one (that had been either stuck or jiggling constantly) with a new one that I have to figure out how it works.  During their visit, I got a call from J’s bus driver from last school year.  She’d run into him at summer school and noticed he was walking around wearing his hats at school.  She was worried that she’d overstepped her bounds when she’d told the driver that he normally isn’t allowed hats at school, and wanted to check if I was OK with that, or if we’d changed this rule. I explained that no, she had not at all overstepped, and that I was grateful to have an answer as to why J’s head was so sweaty and chafed when he came home from school.  I will write a note about this to make sure the teacher knows what we’d like.

That, my friends, is as collective an instructional plan as anyone can ask for, isn’t it?  J’s loyal entourage (as it were) is working for the kid, even when they’re off the clock.  Not only do they talk to each other, they talk to US, and we all get on the same page, and we come up with better ways to tweak everything so it’s more effective and helps him more. I couldn’t ask for more, could I?  

So here we are…sixteen instructional days left in summer school, and progress is being made every day.  I get good reports of J’s behavior and work habits.  He leaves for school happy and comes home happy; he wants to work on the plan we’ve laid out for him, and he wants to relax and enjoy his downtime.  And all this is taking place with less medication coursing through his system…

I don’t want to say it too loudly, but we’re all doing quite alright, aren’t we????

Day Eight…all’s quiet, and that’s how we like it

One week ago this morning J started taking the reduced dose of Risperidone.  I think I can now officially label myself a horrible melodrama queen and the muscles around my shoulders can unclench slightly.

If J has acted up, it has been milder than usual and basically the result of him wanting to assert his will above mine.  I have somehow successfully managed to remain calm when he’s tried to huff and puff his way through a disagreement.  Either I’m getting better at this or he is, but one of us definitely is…at this point, I don’t really care which one of us is, but just that it’s happening.

Is this it?  Is this the new normal?  Are we level once more???  Armed with notes, I have to e-mail J’s doctor today to give him an update.  We have sufficient meds to cover the new dosage until July 6th, and we don’t want to get caught with our pants down if the doctor goes on holiday for the Fourth of July.  Do I ask for a refill of the .75 or do I dare go lower?  My gut says stay the way we are for a little longer, until we are sure we are not pushing J too far, too fast.

I really think, and I’m not succumbing to any little bluebird of happiness schmaltz here, that J is doing fine and that we’re on the right track.  I’ve re-read my notes and I realize that when he’s “misbehaved” or “acted out” in the past week, he’s just being a teenager, a willful, annoying teenager.  The rest is easy.  And there are no pills for being a teenager, thank goodness…it’s just something we all (hopefully) outgrow at one point or another.

We’ll see what the doctor says, but I’m pretty sure that we didn’t “just have a good week.”  I think the time is right for this step and we’ve been fortunate to have started this transition at this particular point in the summer.

We’ll see…we’ll see…  It’s only June 24th, I know, but I’m sure we will have witnessed an even bigger improvement by August 15th when school resumes.

Fingers crossed.

Day Seven…

Well…what can I say.  J has adjusted to the reduced dosage of his Risperidone much better than I anticipated.  Last night he was anxious about school, but it was because of the fact that Thursday he didn’t have class.  He counted, as he usually does, three days with no school and asked about school today.

With the help of the Proloquo2Go, I explained that Thursday had been a holiday, and that yesterday was Saturday so he still had Sunday at home before returning to school on Monday.  We did this in several ways for about 45 minutes, and it ultimately sank in…he wasn’t imagining things, this HAD been a longer-than-usual weekend.

I don’t blame him.  Long weekends sometimes throw me off for a day or two after the holiday has passed, just like changing the clocks does when that time of year rolls around.  I went back and forth to MONDAY SCHOOL and SUNDAY HOME, and then said SUNDAY HOME DADA TGG MOM J, and then I reminded him that there would be SCHOOL MONDAY TUESDAY WEDNESDAY THURSDAY and so forth.  He asked over and over, and I answered over and over until he was satisfied and announced he was ready for bed.

This morning he came into our room at around 6:30 asking for Slinky.  It seems that it had fallen off the bed behind the headboard and onto the floor, so I crawled under the bed, retrieved it and handed it to a grateful J.  I told him it was way too early to get up on a Sunday, he thanked me and back to bed I went.  J was happy and entertained enough in his room that I didn’t really wake up until nearly ten, at which time I leapt out of bed in a bit of a panic because (after all that clarifying of weekdays and schedules) I had dreamt it was Monday morning.  When I realized it was still Sunday and I had been blessed with an extra few hours of sleep, I was beside myself with joy.

So that’s Day Seven of the Reduced Med…I don’t feel comfortable enough to stop tracking, but I think I’m getting there…

 

Day Six…and the closest we’ve been to a “crisis”

J has a nasty habit of expecting ME to change from street clothes to comfy clothes as soon as we get home from running errands.  This stunt he tried to pull on me today when we got back from the usual Saturday morning rounds of Farmers’ Market, grocery store, etc.

I was wearing a nicer blouse I bought online and didn’t want to get it dirty (we were having Mexican for lunch and, surprise!!!!, I’m sloppy when it comes to Mexican food) so I had every intention of changing.  J, however, was being pushy, and I was NOT going for it…

We had a minor tiff.  He wanted me to change and I was trying to explain to him that I would, but only once I’d opened his bottle of soda with the bottle opener I was retrieving from the drawer.  My son, however, was hell-bent on being melodramatic and decided to hit his head and punch his thigh…

Guess, please, who was NOT going for that???  ME!!!!  I said HEY quite loudly and told to get the ice for his soda and pipe the heck down…NOW!!!!!

J’s eyes opened quite widely and I turned around and went to change my clothes.  He complained to Dada who, quite frankly, was not having any of it either, and promptly got sent to change into his at-home clothes.  Boy, did he whine throughout the whole thing.  I simply went into our room, changed into shorts and a t-shirt, and found my way back to the dining room where I sat waiting for J to return.

Jolly as the Green Giant, my son bounced down the stairs and said THANK YOU.  I said SIT DOWN.  J sat across from me, looking slightly offended and annoyed, but I have learned the difference between what he can and cannot control behavior-wise (thank you, Temple Grandin, for the insight,) and I told him to EAT.  J tried to jump on his quesadilla like a feral cat suddenly faced with a meal that didn’t come from a trash can.  STOP!  Mouth full of tortilla and cheese, J looked at me, stunned.

ONE…(whoa daba daba is what I say in my head instead of one Mississippi)

ONE…

TWO…TWO…(no chance for a whoa daba daba…so I took a deep breath)

TWO!  (whoa…daba…da…ba)  J looked at me with narrowed eyes and allowed me to go as slowly as I wanted to, the feral cat receding into the background, knowing it is liked and Soft Kitty, Warm Kitty, Little Ball of Fur is what is called for…

TWO…

THREE…(whoa…daba…daba…I sped up again)

THREE…

FOUR (whoa daba…daba…and a little more)

FOUR…

FIVE (whoa daba daba)

FIVE…

AND EAT…

And so he ate, counting like the ace that he is, knowing that I was NOT going to give in to pounding or yelling or any other type of emotional terrorism…

When he was done eating, a full ten minutes later, I told J to look at me, and I said (quite calmly) “I will come home and change my clothes, BUT only when I am done doing whatever it is I need to do.  Understand?”  J looked at me, at his plate, and then asked to change the schedule for the rest of the day…

THAT, my friends, is as close as J will come to saying YES, MA’AM.  I’ll take it.  I accept that I have to be concise and precise, and take no crap from him when it’s something that he can control…like his MANNERS!

He asked to do laundry.  He asked to go downstairs to the basement.  He has been sweet and nice since then.  Tonight I will remind him of how he cannot bully me or push me around, but I know that it will take more than ONE or TWO or even TEN reminders.

But if that’s as close as we’re going to get to a tantrum with less medication, I’ll take it.  I’ll take it, and I’ll feel very lucky.  After all, when I think of how very different these disagreements used to be a few years ago, a couple of thunks to the head and some thigh-punching are nothing in comparison…

And on to day seven…

Day Five…and we’re all dragging…

J didn’t want to come to bed last night.  At nearly eleven o’clock he was escorted upstairs by Dada and he was NOT happy.  We would have let him stay downstairs longer had it not been for the fact that TGG and Dada had to go to bed so they could go to work today.  I was tired.  I was not going to stay up later than I absolutely had to, and that’s the sad fact of my life right now…

Why don’t we leave him to stay up as late as he wants and sitting in the basement???  Because, like any other teenager, he will fall asleep on the couch.  Unlike other teenagers, J might freak out if he wakes up to find himself alone in a darkened house with everyone else sleeping soundly in their beds.  While a run-of-the-mill teenager will navigate to the kitchen and grab a snack before heading to bed, J will have to gather up all his things, bring them upstairs and be totally offended if we’re not there and awake to greet him.  J cannot process “oh, they went to bed” as other people can, and that can cause him anxiety that would spread out to other things.

This is the thing: I can walk outside and sit on the stoop; I can stand out front and talk to a neighbor.  Dada and I can walk to our soon-to-be new townhouse and leave J sitting on the deck so he can see us.  J cannot be left alone at home, especially if he cannot see where we are.  I cannot dash across the street to a neighbor’s house to have a quick chat, and I cannot take a shower without announcing that I will be upstairs in my bathroom if he needs me.  J cannot understand the difference between “it’s just for a moment” and “I’m gone.”  At the same time, J can easily replace one person to meet his needs with any other member of the household who is available.  If there is another person at home, I can shower without problem.  If we’re alone, J will sit on my bed or in the hallway until I emerge from the shower.  He needs the reassurance that someone will be there to assist him should the need arise.

Because J made a fuss (not “threw a tantrum”) when going to bed last night, and compounded with the stress from yesterday’s trip to the pool, I didn’t sleep well.  One ear was alert to any noise from J’s room (trying to listen over the din of Dada’s rather sweet, but nevertheless loud, snoring) and my brain was still whirling around from the “just a dummy” thing.  I had several instances of tossing and turning, interspersed with instances of sitting up in bed and coming up with a fantastic and withering response to the comment made by the kid.  I was a veritable Jane Austen hours later while I only managed a wounded cockroach reaction when the incident took place.

The only person who had truly been cheered up by the arrival of the ice cream truck was J.  In spite of the fact that he didn’t show up until nearly nine (when we’d all just about given up on the notion of dessert,) J was very happy with his cup of soft serve.  I ate mine with little enthusiasm, mostly because I was factoring in getting into a bathing suit to take J to the pool today.  

This morning we are a little on the slow side of movement.  J has been doing things half-assed, but I am bound and determined to not let him lure me into codependency on this beautiful Friday.  I could have done with another cup of coffee, but I figured I’d be wired and tired, and that’s never a good idea.  So we have had a minor tug-of-war over J doing things he normally does and now wants help with (turning on the stove?  REALLY???,) and my patience being frayed by tiredness.  

It is the first day of summer here in the good ol’ Northern Hemisphere.  We are going to take advantage of it!  We are going to enjoy it!  We are going to have fun!  We might fall asleep at the movies this evening when we go to watch Monsters University, but we’re going to give this day all we’ve got…

Five days on the reduced dosage and we’re still chug, chug, chugging along…and that’s the way we like it…

Day Four…not “just a dummy”

Oh, sacrosanct bovine…I was doing fine, I swear, and then we went to the pool.  Now I’m here, all of forty-eight years old, hyperventilating like the little kid I was in the playground when someone insulted me and I couldn’t respond immediately.  My response now, as then, was to simply gather my things and leave…

I pride myself in being a frequent traveler along the high road, but today I wish I was not so dignified.  I wish I could turn around and comment on someone’s parenting right to their face, but -I admit- I am both oozing dignity and a horrible coward.  That and I was taken by surprise.

Let me explain:

This morning we had to make a rush trip to the store because we couldn’t find J’s swim trunks.  On our way back we stopped for lunch so it wasn’t until nearly three that I finally managed to get him into his new flamingo-print board shorts and down to the pool.  He immediately parked himself on the step…that’s what he does.  J sits on the step and there he stays until he’s good and ready to get into the water…say around August.

Today he went in and actually made a more proactive attempt to get farther into the pool than he usually does this early in the season.  Today he reached mid-July depths.  This, mind you, is an excellent sign.  The kid is not just apparently adjusting well to the decrease in his medication, but he’s also enunciating more, trying to spontaneously express what he wants and actually stepping out of his comfort zone and into the pool.  Good stuff, right???

And then the kid with the big mouth showed up and we had to go…

Harmless seeming enough, a dad and his two young children approach the pool.  A heavy Southern accent, but a happy, open smile from the dad and the little girl who walked past us.  Into the water they went, and little whatisname (maybe all of seven or eight years old) immediately starts teasing his sister and commanding attention.  The little girl, maybe five years old?, makes her way past J and tries to engage him in conversation.  He smiles, but -of course- doesn’t respond to her chattiness with anything other than a grin.  The little girl, I can hear from where I’m sitting because J has asked to SIT, is telling him the water is nice and come in and see.  J does nothing other than smile, and I sign from a distance GO WATER PLAY and SAY HELLO.  He just smiles, but he’s not rejecting the little girl’s friendliness, he’s just being…well…autistic.

Up on the terrace, sitting in the shade, another member of this particular party is strumming a guitar quite soothingly.  J smiles at the sound, and I sign to him LISTEN GUITAR.  And he signs GUITAR back to me, and smiles even more broadly.  His eyes lift up to the sky and he closes his eyes, clearly enjoying this little bonus around the pool.

TGG is sunning himself nearby, enjoying his day off and getting ready for class tonight by just plain ol’ chillin’ out.  When he sits up and comes to me, I see the little girl becoming more insistent and, because she comes closer and makes the water splash a bit, J lets out a little AH-AAAH that indicates the water is cold, but not unpleasant.

I tell TGG to sit near J and help him say HELLO to this little girl, and TGG promptly moves over to his side and I can hear him saying SAY HI.  The boy with the long blond hair starts approaching his little sister, and she splashes him playfully and, here it comes, clear as a bell we hear:

DON’T SPLASH HIM.  HE’S JUST A DUMMY!

As I feel my shoulders tense up, I see TGG’s echoing this reaction.  To my left, out of the corner of my eye, I see the dad  still in the water, looking at his kids with a stupid smile on his face.  And wait to see if I hear so much as a low “hey, come here” directed at his son, or perhaps some movement in the boy’s direction.

Nothing.

I hear the boy say the word DUMMY again.  I look at TGG and I can tell he’s looking back at me.  I sign DID THE BOY JUST CALL J DUMMY?  TGG’s face says YES better than any sign could.  I wait a couple more minutes, and then I motion for J to get up and come get his shirt.  Without making eye contact, we calmly gather our things, and leave…

As we walk away from the pool area, I verbally ask TGG if he heard what I heard.  Yes, he says, that kid called J dummy.  That’s when I feel like I’m going to cry, and simply hook my arm around TGG’s and guide J towards the Mail Room because he’s asking for the key.  On the way up the hill, I have to talk TGG into not going back and saying a thing or two to these people…

I don’t know where they live.  I know there are three families that have moved within a few doors of us in recent days, but since I don’t particularly keep looking out the window to locate the new neighbors, I don’t know where they live.  And even if I did, what would I do?  Ring their doorbell and tell them “teach your child acceptance?”  Leave a note on their door that says “he’s not just a dummy?”  Post a note in the Mail Room for the whole neighborhood to see stating that my son is as valuable as their children and…what????

It’s not my job to teach other people how to raise their children.  It’s not my job to teach other people’s children that they are being offensive.  I’ve taught my children how to behave.  I think I did it again today, though perhaps it would have been better (in the eyes of others) if I’d taught them to face up to an unpleasant situation by making it a “teachable moment.”  If the dad heard what his son said, I’m sure he either doesn’t think it was that offensive (kids will be kids, I guess) or he’s mortified and will tell his wife about it when they go home.  Maybe they’ll be embarrassed.  Maybe they’ll think it’s no big deal.  Maybe I’m overreacting.

At the end of the day, all we can do in this household is echo John Mayer’s words: We keep on waiting.  
Waiting on the world to change.