What if we’re missing something?

The now seemingly-constant search for what is bothering J badly enough to cause all the SIB continues.  I have read more scholarly articles than my intellectual capacity can handle.  (Yes, I can feel my IQ dropping with each baffling moment.)

The issue with the teeth has been more-or-less figured out.  The concerns about a possible fracture or sprain in his hand are cleared.  His ears continue to be big producers of wax, but I seriously doubt (though, of course, I am not a physician so I might be wrong) that THIS is the bone of contention.  He rubs his feet a lot, but he has stopped screaming because he gets cramps in them…is that it?  Doubt it…

My “spidey senses” are pointing in other directions.  Don’t ask why…I’m just going through a process of elimination here.

Is it his digestive system?  Is he having trouble with something he’s not digesting right?  Is he having acid reflux and we don’t know it?  Enquiring minds desperately want to know.

How do I go about this?  Since I know he doesn’t have a cold, and J is very good about letting me know when he is congested, has a runny nose, or feels uncomfortable in that particular area, I’m pretty sure that the problem has to be somewhere else.

The question is…where?  And HOW do I get to the bottom of this?  My first step will be to listen to his gut.  I seriously doubt that gas will be the root of the problem, but gas can tell you a lot about a person’s digestive process.  I know J, as a general rule, isn’t constipated, but -because he is an adult and I have to respect his privacy- I have not been delving in his bathroom habits.  I intend to, as I did when he was much younger and fully dependent on my intervention to complete his bathroom routine, have to get more up-close-and-personal than any parent wants to be with his now-adult poop.

I know he’s had hemorrhoids in the past, but I don’t think this is THAT.  I think he might be in some sort of digestive distress that causes cramps and pain, and he doesn’t want to discuss it (because it’s embarrassing) and it’s causing him grief.  Maybe it’s as simple as a newfound intolerance for something he used to digest quite easily.  While J has not really been exercising as much as he did when he had TGG to go to the gym with him, his diet hasn’t bulked up enough to justify some of his weight gain.  And his belly looks bigger…so there might be digestive question marks in there somewhere.

So…looking at poop, doing a food diary for a week, and figuring out where the problem is…or isn’t.

I know you didn’t NEED or WANT to know that J might be having digestive/poop issues, but Dada is the only other being who won’t discuss this in medical terms that might alarm me.  Heartfelt apologies for the less than discreet subject matter, but poop is important…we all generate it, and there are those of us who sometimes have issues with it that end up interfering with other aspects of our lives.

There you go…food diary (has been started,) and poop patrol.  Anyone who tries to tell me that my life is not interesting, varied, and fun is in for a surprise…

I am supposing that I am in for some surprises, too.

Off I go…

At long last, I resurface…

Greetings, one and all!

Yes, yes, I know I’ve been lost and not really missed, but I’m back.  It took almost a month, but I have all my ducks in some sort of row (not a straight or well-behaved one,) and I have time to sit and talk to you.

First and foremost, J is doing well.  The Band-Aid Fixation continues, but we now spend more and more time without the wrist stabilizer or the band-aids.  On one particularly happy occasion, we not only didn’t have the band-aids or the wrist stabilizer, we also forgot Slinky in the garage for about three hours.  I had to remind him that he’d forgotten…a joyous moment and a d-oh! moment all rolled into one.

A few days ago we visited our trusted friend, Dr. Psychiatrist.  J was well-behaved and happy throughout, and we discussed removing J’s med completely.  This, ladies and gentlemen, is about to happen…well…as soon as we run out of the med and refills already on queue.  We are thinking Christmas will be, to put it mildly, interesting.  I am sure that there will be some jolts and bumps to navigate as his body lets go of the very last bit of added chemicals, but that’s the way it has to be.

With every passing week the end of J’s life as a student gets closer.  There are 229 days until the last day of school…of those only 128 are actual school days, and we haven’t factored in snow days, or early release days.  The clock is ticking, and it’s neither stopping nor slowing down for our benefit.  The days of J as a student are numbered…

Yesterday we received this year’s version of the graduation announcements.  I thought to myself, as I looked at the envelope, “at least this is the last year when I will cry when I get this.”  We all know, because I make no bones about admitting it, that this is all very bittersweet for us.  J’s school picture, the last one ever, was absolutely spectacular.  He has finally mastered the art of smiling for the camera without looking like a boxing glove is going to come out and smack him.  We hung this version next to the framed proofs for his first school picture ever.  The contrast is marked: on the first a tiny, nearly-bald, skinny kid looks confusedly at the camera, and in the sixth frame you can tell he’s just melting down completely.  They never sent us the actual picture…they just gave us the proofs.  We framed them.  They’re so…J!  Next to it, a portly, handsome, hairy young man smiles gently; his goatee leans to the right and his eyebrows look unruly, but he is handsome and he’s loving the attention.  We’ve come a long way, baby!

Attending graduation is out of the question, of course.  J could not possibly deal with the overstimulation involved in hundreds of students doing a processional and then sitting through a ceremony that won’t last ten minutes.  Needless to say that the cap and gown won’t be his favorite thing to wear.  An alternative must be concocted out of thin air, then…something that will be ceremonious enough to mark the end of an era and the ushering in of a new one.

I’ve suggested the So Long, Farewell song from The Sound of Music performed by teachers, aides and admin personnel, but I don’t think they are keen on learning the choreography, wearing the costumes and leaving the room in any semblance of order.  The end-of-school-year picnic his class celebrates every year will have to do, but I think we’ll try to throw something in there to make it a clear message that this is J’s last ride with his class.

Our family is undergoing changes.  Some of them are less dramatic than others.  We are starting to look, in earnest, for a house to buy…or, at least, for the type of house in the type of neighborhood we’d want to settle in for the next fifteen years or so.  We are hoping TGG moves out soon; this might be a tricky thing to achieve because he is not really concentrating on school as he should (he is “in love”,) and he makes barely enough money to pay for the things that are obligations.  We, the parents, feel the effects of aging…the creaking, cracking, impatience, etc.  Acid reflux has become “a thing” around these parts, and we see it getting worse before it gets better.  That J is almost out of school is the biggest change of them all; that he will be out of school and med-free is an even bigger change.

I confess to you, as I have to Dada, that I am not torn about TGG finally moving out.  I am really looking forward to it, in fact.  That is as close as I will ever get to having an empty nest, and it’s taking very long in getting here.  TGG, at this point, needs to go off on his own, and learn from his mistakes, and I am totally ready to close the door and wave bye-bye.  It may sound mean of me, but sometimes we don’t let our kids grow up because we are there to fix things.

My situation with J is the absolute opposite, and yet it’s the same.  While I am anxious about the prospect of no school forever, I am also looking forward to seeing where we go from here.  In a lot of ways, I feel more confident about J hitting his stride and maturing more smoothly than TGG has.  Maybe, just maybe, we’ve always pushed J more because J has more hurdles to overcome, and TGG doesn’t see that we’ve been exceedingly nice and patient with him…and takes advantage of it.

But I’m not here to gripe about TGG.  I’m here to tell you that we are doing fine, and that we are moving forward.  I promise (or threaten?) to not stay gone as long as I have recently.  It’s just life, you know, and acid reflux…and 24 year-olds who don’t quite “get” why their parents are impatient with the choices being made.

But I’m here…it’s all goodish.  You’ll see…

A trip to town…

With a great deal of equanimity, J accepted that we were going on an outing, and he trusted me when I said it was for fun.  What I mean by “for fun” is “no doctors.”  We ran errands.  We walked a lot.  We rode the bus and discovered that it isn’t just the potholes that cause problems; poor suspension in any vehicle will make for a bumpy ride even if the road is (more or less) in good repair.  By the time we reached High Street, J and I were more than ready to get off the bus; I’m sure the other passengers were ready for us to leave, too, because J said GOING TO TOWN a minimum of 200 times during the half-hour ride.

Our first stop was the courthouse.  Because the world we live in has become increasingly threatening and violent, we had to go through metal detectors and empty our pockets before going in to complete the errands we had for the morning.  J had been to this building before, and he was a little taken aback by the new contraptions standing between him and getting in and out of there quickly.  A brief moment of confusion, a relinquishing of his beloved Slinky and kind patience from the security team at the door, but we made it through without problems.

Of course, I had a minor glitch with the paperwork, and we had to do two of the things we had on our list, but leave and return for the third.  J was patient about this, too.  There were a lot of people waiting their turn, and he navigated this fairly well.  I say fairly well because J takes up a lot of space when he sits down, and I had to ask him to “gather his feet” so as not to create an unnecessary obstacle course for the other patrons.

I had promised J we’d go to his favorite store in town when we were done with our errands, but I had to dash to the library to try printing a piece of paper I needed for that pesky third errand.  When I realized the printers weren’t working, I let J walk the Children’s section and I texted back and forth with Dada trying to find a solution.  The proceedings reached a stalemate and, to recover from the stress of the moment, I told J we were going to the toy store.  THIS was the moment he’d been waiting for, and he was so happy that it was well worth having sat down and taken that deep breath.

We walked around the store, looking at dolls, games, plush toys, books, Playmobil sets.  I asked J if there was anything he wanted before we left.  Another turn around the store helped him make his choice: the biggest set he could possibly choose from among the Playmobils, and the little motor to power it!  I explained that, yes, he could buy it, but HE had to carry it around town.  As we were paying, the store owner (we have known her since we moved into town four years ago) helped me figure out how to complete my final errand.  Immense Playmobil set in hand, we went back to the courthouse (and through security, of course) and finalized our official business.

I asked J where he wanted to have lunch, and he stood looking around at the different store fronts.  In the end, he opted to go to a diner that he’s been to when he’s walked into town from school.  I had never been so he guided me to it, and when we were led to our table, he plopped down like a regular customer.  Since it was after eleven a.m. I ordered French Toast and J ordered a grilled cheese sandwich and some chicken strips.  He ordered his food with his Proloquo.

I can understand why J likes the place.  The booths are spacious, and the music was perfectly in tune with J’s tastes.  As we sat there waiting for our meal, J was happily moving around in his seat, following the songs they were playing.  He was so happy, in fact, that he didn’t hesitate to remove his brace to cut up the chicken strips, and didn’t complain when I reminded him that he has full use of his thumb and I expect him to move, curl, wriggle, and command it.

We counted the money to pay our bill, and made a pit stop before heading home.  Dada kindly drove into town and brought us home.  All in all, we were out and about since 9 in the morning, and didn’t walk into our townhouse until shortly after 1 P.M.  It was a very full and active morning, and J was stretching and yawning when we got back.

We spent the better part of the afternoon putting his toy together.  The nice thing about Playmobils is that they’re easy (for me) to figure out.  I’ve grown too old for Legos.  And before you argue that “you can never be too old for Legos” I will explain that I fully agree with the spirit of that, but my eyes aren’t what they used to be, and some of those tiny pieces are hard to handle with my arthritic fingers.  J was especially thrilled when he realized that one of the figures in his new Playmobil Ferris Wheel set looks a lot like him, down to the newsboy cap it’s wearing.

As you can tell, our trip to town was mostly successful.  The one glitch was the red-tape, but we figured out what to do to properly and promptly complete our errands.  I didn’t flat-out lie to J; I meant for him to have fun, but I also meant to get things done, and we managed both.  The rest of the weekend went well because we set the proper tone for errands and fun.

Today is the first day of the two school-less weeks in August.  We are doing a little work, and we are trying to do some fun activities.  The mood is light, and we are determined to sail through the next couple of weeks without too much drama.  And the brace?  It comes off for chores and meals, and I keep reminding J that his thumb works just fine.

Little pitchers and all that…

As we know, the Thursday before ESY started J had to go to Urgent Care because his thumb hurt.  The X-ray indicated there wasn’t a fracture, but there was a sprain of some sort.  The doctor fitted him with a thumb immobilizer that has become J’s best friend and confidant.  Add to this his penchant for wearing band-aids for no good reason other than to remind himself that he’s alive and breathing and you get a pretty alarming picture.

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We’ve had the same bus driver for 80% of the time J’s been attending school here in WV.  By now, four years and multiple bandaids later, she should know that our son has a flair for the dramatic.  This is the kid who will buy bandages EVERY SINGLE TIME we go shopping.  I’ve told Dada to invest in Johnson & Johnson since we’re helping keep the company going strong.

Anyone here have a child in the Spectrum who isn’t comforted by deep pressure?  Compression garments?  Weighted blankets?  Pillows piled on top of his/her body?  Cocooning?  Individuals in the Spectrum feel comforted by these things, and J is no different.  That he takes it to the point of looking like a Civil War walking wounded is an entirely different matter.

If you’ve never seen J and you witness this “look” of his, you’ll wonder what is wrong.  If you ask, I will gladly explain the whole thing to you, especially if you’re uninitiated in the intricacies of Autism.  I will even, if you feel that my explanation is insufficient, invite you to call the proper authorities so they can do an investigation.  I KNOW what it can look like to those who don’t know what J is like.

There’s another little quirk of J’s that poses a problem: echolalia.  J will repeat the very last thing you said, and this can be considered leading the witness.  If you, as an adult who should know he’s in the Spectrum and has trouble communicating, ask “are you hurt?,” you will get HURT as a response.  “Again?”  will get AGAIN.  If you ask him “was it a rampaging elephant?” J will respond with ELEPHANT.  I don’t mind people asking him, showing him pictures, asking him to point as long as they understand that J doesn’t have the complete ability to answer spontaneously 100% of the time, and that you are probably leading him to the answer you want.  That is why, when we go shopping, and he points to a general display of items, I tell him FIND THE ONE YOU WANT.  I step back, and I wait patiently until he gets that he is the one who has to choose.

Asking a question about whether he is hurt again in front of a busload of special needs students who might go home and say “J is hurt again” is not a very good idea.  Some kids will repeat what they hear.  Other kids will embroider and filigree what they hear.  It might not happen, but it also MIGHT happen.  It’s a possibility…

Every single person that works with J is welcome in our home.  We actually make a specific invitation to come and see how J lives, what our set-up and our system is at home, what our expectations are, and how he navigates it all.  We remain in constant contact with staff from school, and we try to make sure they understand what we’re aiming for here.  Whether they take us up on it or not is entirely up to them, but we wouldn’t ask if we didn’t mean “come over and see what we do.”

I love when people are genuinely concerned about my son’s well-being because it tells me they care, and they will tell me if something seems fishy.  I don’t mind people asking me questions, and wanting to make sure that he is being treated properly and respectfully.  What I do mind is when people call out, from inside the bus, asking J if he is HURT AGAIN!!!!???? in front of a busload of impressionable kids who cannot process the situation with the clarity of their neurotypical peers.  None of these kids can ask J “hey, dude…are you ok?  Is something happening at home?” and then -as concerned friends- take it to a grown-up for follow-up.  These kids can only repeat it at home in a way that their parents won’t be able to interpret based on their knowledge of us, and of J.

Discipline doesn’t mean mistreatment, and we don’t take advantage of J’s inability to communicate when we scold him.  We explain why we’re upset, and we do our best to get him to understand when he’s done something inappropriate, dangerous, risky, rude, and so on and so forth.  Our biggest problem, perhaps, is that we work gradually to wean him off the comfort items he cherishes and we respect what they mean to him.  I always let teachers, staff know when he’s really hurt, and how serious it is; I always inform the teacher if he is sick, and what treatment he is undergoing.  I don’t do this because I am afraid of misunderstandings but rather because J cannot explain for himself how he’s feeling or why, and what’s being done to help him.

I am J’s voice, and I will speak for him when I have to, but I will also allow others to question what I say because I have nothing to hide.  Echolalia is a dangerous thing because not everyone understands how to ask questions of a person who resorts to it rather than to spontaneous speech, and J’s privacy should be respected even in cases of extreme concern for his safety.  A neurotypical child questioned about his/her well-being and safety will not always be upfront about the situation, especially when it’s done in a public and potentially (to them) embarrassing manner.  Asking the child/adolescent/adult in a more private setting, establishing an environment of trust and safety will create a better opportunity for sincerity and confidence.

J’s fine.  He’s healthy.  His thumb has healed and we’re working with the timer so he leaves his beloved thumb immobilizer off for short periods of time throughout the day, BUT he does feel his hand needs to be controlled.  I don’t know why…maybe it’s hereditary OCD, or maybe it’s that splash of bipolar disorder that dwells in my mother’s genes as passed down through the generations.  I have to respect what he thinks that brace is doing to protect him from himself…and I will work on alleviating his concerns in any way I can.  If, for the time being, J thinks the brace is necessary, then the brace is necessary.  It may very well be that it goes the way of the boxing gloves, the Rasta hats, the whole milligram, the three-quarters of a milligram, the half of a milligram of med…or maybe, like Slinky, it will stay as part of his everyday needs and supports.

I can live with that.  I accept that it’s the way it is for now and might be for a long, long time…  But ask me, please.  Don’t assume and unwittingly spread that J might be in danger…  Ask me.  That’s what I’m here for…

Mr. Happy-Go-Lucky gets a thumb splint…

J was happy yesterday.  We didn’t have any trouble during the day; we did our chores, went for walks, put together another craft project.  In the evening he went to the gym with TGG, and then we got pizza for dinner.

At nine o’clock he came up from the TV room asking for bandaids.  It was not yet bath-time so I asked him to wait.  And then the tantrum started…  Even though I was just headed for the bathroom to pee, I stopped in my tracks and reminded him that he has to ask for help.  I might as well have asked him to recite Ozymandias.  He would not budge.

Of course, we were deflated, and had to herd him up the stairs to his room so we could address the tantrum and the bandaids.  No sooner did I ask him to take off his wrist sleeve (which we all know is just a piece of a pair of tights) that he started to hit his head.  We immediately pointed to the DON’T HIT sign, but this did little to calm J down.  His reaction was so strong and decisive that I sat next to him and held his hand.  I slowly removed the old bandaids, and up the hand went…bam bam bam against his forehead.

By this time I really had to pee.  I took J’s arm and told him to follow me.  I am not proud to admit that I used the toilet while J stood there, looking away from his poor, weak-bladdered mother.  As long as I hold his hand, he won’t hit…desperate times call for desperate measures, and with his hand tucked between my ribs and my elbow I washed my hands and herded him back to his bedroom.

His hand was swollen.  Not his WHOLE hand, but rather the pad of flesh that sits between the base of the thumb and the wrist.  Swollen.  Like A LOT swollen.  J has big hands, and we’re used to seeing some swelling when he’s been indulging in SIB, but this was way out of the ordinary amount of swelling we have come to accept as “oh, it happens.”

Dash away, dash away, dash away all…”TGG, wrist brace!  Dada, ice pack!  STAT!!!!  Someone bring the iPad from the basement!!!!”  My minions dispersed.  When they arrived back in J’s room I was putting bandaids on, and TGG was giving the swelling a quick look.  “I think it’s either a sprain or dislocation…”  He asked J to make a fist, wiggle his fingers…  With the iPad he told us it hurt, but the pain was tolerable.    Once we had bandaged him up as best we could with what we had, J said HAPPY.  I explained to him that we would go to the Urgent Care this morning.  He tried to hem and haw, and I had to clarify that the pain cannot be addressed with just bandaids.

This morning, after a quick shower, and some complaining, we arrived at the Urgent Care as soon as it opened.  This kid should have Frequent Flyer miles there.  They know him, and -thankfully- they know how to deal with his hesitation.  When the doctor came in and asked to see his hand, J parted with the bandages he was wearing, and allowed him to poke and prod.  After an X-ray, they let me put the bandaids, wrist sleeve, and wrist brace back on…

It’s a sprain.  A bad one.  The doctor says he must’ve jammed his thumb on something.  We told him it was probably his forehead he jammed it on.  “That would do it if he hits at an angle that the thumb is not ready to support.”  The solution?  A thumb splint that immobilizes that thumb and braces his wrist.  “Will he wear it?  It’s bulky!”  I explained that bulk is no issue; after making a habit of carrying four boxing gloves around for a couple of years, bulky is not a problem…it’s a fashion statement.

When the nurse came in with the brace, J smiled as if he’d just been given a beautiful present.  He extended his arm and thumb with enthusiasm bordering on the absurd.  The only thing missing was his saying “for me??????  Oh, you shouldn’t have!!!!!”  The nurse explained that it’s removable, and he’ll have to wear it for three weeks.  Ice will help with the swelling.  Acetaminophen will work for the pain if he has any.  I told the nurse if he enjoys wearing this thing, he will probably make it a part of his daily wardrobe.

I have never seen anyone look so happy about having a body part immobilized.  When we got home, everyone at the property management office and in the maintenance crew asked J what had happened.  He displayed that brace like Michael Phelps displays his Olympic medals on a box of Wheaties.  You’d think he had Iron Man’s arm installed…

Does he fuss over it?  Yes, of course.  There are Velcro straps, and J loves readjusting Velcro straps.  It’s almost like he got his very own, personal, exclusive amusement park ride.  He walks around smiling, his arm extended in front of him…sort of like a modern day, less gloomy The Mummy.

I will take the fussing over Velcro over the hitting himself because he’s hurting and he doesn’t know what to do.  I know that J didn’t just hurt himself.  Of all the things I know J is capable of, intentionally hurting himself to get attention isn’t one of them.  If J is going to hit himself, he wants an audience.  He wants a reaction.  He’s a performer.  My guess is he grabbed something and, because he was already somewhat hurt, he didn’t calculate weight, size and grip correctly and it just got him the wrong way.  I’ve done that before, and it has resulted in needing ice, etc.

Am I worried?  Yes, of course.  We got an e-mail from the psych that I’m still chewing on, but not because it’s a bad, uh-oh, this isn’t good e-mail, but rather because it’s a “think carefully about how you want to do this” e-mail.  So I’ll chew on that, and then I’ll tell you all about it.

That’s it for now.  I’m taking partial-Iron Man to the pool because the weather is fine.

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.

Slightly intimidated, but not defeated…

In a nutshell, we might have to go back to more med for J, but right now it’s wait-and-see.  I asked the doctor to let me ride the next four weeks and observe assiduously while taking detailed notes. I am sure, I told him, that we can work through this…

He said he trusts me.  That sort of scares me.  Either I am delusional and he is playing along to keep me calm, or HE is delusional and I am putting my faith in the wrong place.  Judging by how well J behaved today at what I expected to be a disastrous appointment, we might both be on the right track with this issue.

The truth is that I think I’ve been lazy.  Or maybe the word I’m looking for is complacent…I’m not sure at this point.  Maybe I’ve been both.  That’s the one drawback about stability and progress: we tend to rest on our laurels even as we say we’re not doing that.  I might have made a cushier nest of laurels than I originally intended…my bad!

This is the plan right now: we’re doing the TV room in what HGTV designers might call sensory-room feng-shui chic.  That is: the ball pit (of sorts) is going in, and the lighting is getting re-designed, and I’m mounting the TV and re-doing his shelving system.  The weighted blanket is a go.  Surround sound will be in place soon.  The purpose is to give him everything he probably wants (because he loves all these things) and we’ve been too dense to provide him with because (get this) we think he’s “too old” for that stuff.  He isn’t.  Just like he’s not too old for Dora the Explorer, Madeline and Disney Princesses, he’s not too old for a ball pit because I’d want one if I could get away with having it in my room.

His bedroom we will work on together.  Tomorrow (because it’s going to rain) we’re going to re-organize everything.  I am going to put a canopy over his bed, and I think this will go a long way to soothing him because he has always loved hiding in dark walk-in closets when he’s anxious.  If he wants a heavier bedspread, more pillows, we’ll get that squared away this weekend.  Because I know he loves his boxing gloves while still loving the freedom provided by not carrying them around, they are staying in his room, prominently displayed on his bed.  As I’ve done in the past, I’m going to make sure we have any type of wrist support he might think he needs at any given moment.

Yoga is another thing we’re doing.  We are trying anything and everything because J balks at first, but is game for it soon thereafter.  We’re trying it all.  We’re immersing ourselves in not going back on more med if we can help it, and it may be the stupidest, most ridiculously hopeful thing we’ve done in a long time, but we’re committed.

And scared…

We are scared…

Of course we are scared.  We’ve heard the growl and seen the SIB twice in two weeks.  We are, for the first time in five years, actually flummoxed about J’s behavior.  He was, as the doctor said today “SO stable…”

All we can do is plan, and go through a whole trial-and-error thing.  We might crash and burn spectacularly, but we’re not going down without trying to pull the nose up.  We’re trying in every possible, reasonable (ok, there might be some unreasonable tactics in there, but that’s why we’re creative people, right????) way to turn this thing around and put J in his “good” place.  Not necessarily his “happy” place because “happy” can be deceptive, but a good place…one that is conducive to what he needs to do and be.

That’s all I’ve got right now.  Well…and lists…lots of lists and notes.

Onwards, upwards…or something like it…

Ok, be A LITTLE intimidated…

Well, that was a meltdown.  A nice one, too.  And it started because we wouldn’t let J wear a sock on his hand.

When, I ask myself, was the last time he wore a sock on his hand????  Five years ago.

My jaw hits the floor.  Dada is pale.  We are, in a word, flabbergasted.

Is this regression?  Is this just him remembering?  Is this the beginning of another downward spiral?

“Well, we need to ask the doctor…,” Dada starts saying, and I have to remind him that tomorrow’s appointment is just J and his mother because there’s a trip to a facility two hours from here that cannot be altered, postponed, cancelled.  It’s just me and the kid who’s been confounding me all day.

I’m genuinely worried as I sit here feeling the acid reflux bubble up.

We have THREE large bandages on the hand, three small ones on the forehead.  The Proloquo has told us HURT and HAPPY.  What?  Are we suddenly John Cougar with the Hurts So Good????  The level of stress is pretty fancy right now…it’s got raisins in it, as Dorothy Parker would say.

The theories we are floating: maybe that little amount of med is not enough med and his body, six months later, has realized it; maybe this is a splinter cell of problems that have been building up; maybe he’s bored/tired/overwhelmed/lonely.

“Well, at least you’ll be at the doctor tomorrow…,” Dada says before I interject “yes, and it’s an outpatient visit to a place where they admit people…”

My shoulders are officially stiff and hurting.  My dinner is burning a hole in my esophagus.  It’s going to be a long night…

Don’t let the smell of regression intimidate you…

First it was “pull my sleeve down and cover my hand.”  I said NO and rearranged his shirt so it was resting properly and squarely on his shoulders.

A few hours later, a smiling, happy J came into the living room with a boxing glove in his hand.  He asked me to put it on him.  Same hand that he wanted covered with his sleeve.

I said NO in the same tone used when saying “silly rabbit, Trix are for kids!!!!”  He smiled and, slowly, made his way back to the third floor to put the glove in his room.

I decided the tack I will take is to keep his hands busy because idle hands and all that good stuff…

It’s still eleven days to ESY.  I think he’s bored.  I think he wants attention.  I am confused because he constantly kicks me out of his presence.  I am willing to try anything; whether it’s leaving him alone, checking on him every five minutes, taking walks when he least expects it, doing crafts, just sitting there…  I’ll try it.

I am aware that he is 20 years old.  I understand that he is not operating on the same system as I am.  I understand -especially after seeing Inside Out..go see it…it’s a must- that the little Mindy Kaling in him is probably taking over the control panel.  I’m even ok with his inner Lewis Black putting in an appearance.  I get the whole thing about a new improved, more complex control panel.  I understand that regression is normal.  I understand that unhappiness in small doses can be a good thing.  I understand that he cannot always do what I wish he would do.

Tomorrow we go to the psych for the first time in six months.  I was hoping to wave goodbye to the Risperdal, but now I’m not so sure…  To paraphrase Sheldon Cooper’s thoughts on gravity: Autism, thou art a heartless bitch!

Tomorrow is, as Scarlett O’Hara said, another day…