Friday, Saturday, Sunday and Monday walk into a bar…

We spent the better part of last week dealing with bitterly cold temperatures.  The one day we didn’t have a two-hour delay for school was Friday.  That was, coincidentally, the day when we had the 2-hour early-release due to the weather.  On Friday and Saturday the snow fell steadily, and it was cold enough that navigating around town would have been risky.  At J’s insistence, we hibernated at home, and yesterday (with more favorable temperatures and a brightly-lit sky) we ventured out for a while.  The forecast calls for warmer weather today and tomorrow, dipping back down into the thirties by Thursday, just in time for J’s birthday.

Taking advantage of a small pocket of not-too-adverse weather, we sauntered (yes, sauntered) down to the courthouse on Friday.  The petition for guardianship and conservatorship has been filed.  A small weight has lifted off our shoulders (it will soon be replaced with a new weight, I’m sure…)  The to-do list has several items crossed off, and a few more have been added.  J is now the proud occupant of 6 three-ring binders, each one assigned to a different facet of his (official and legal) life.  I have become very popular in the local office supply circle.

The clerk at the courthouse told us we have a waiting period of about two to three weeks; we’re thinking that’s the “positive outlook” timeframe.  We will be happy to hear anything by March.  March, I believe, will be the month when everything we’ve been working on for J’s benefit will fall into place.  There are moments when it feels I won’t be able to relax until then…this might seem hyperbolic to all of you, but I am not merely succumbing to melodrama here, I am weighing what it means to be “a parent…on steroids” which is what guardianship/conservatorship look like from where we’re standing.

A few nights ago, during an aching back that wouldn’t let me relax or sleep, I read Eustacia Cutler’s A Thorn in My Pocket from cover to cover.  Ms. Cutler is Temple Grandin’s mom, and she raised her family at a time when institutionalizing an autistic child was par for the course.  Her book has more answers about how parents can still be themselves in the midst of such upheaval than about how to raise an autistic child, but I found it illuminating nonetheless.  Not getting “lost” along the way is not easy.

My record as a parent is spotty at best.  I have done my best to not screw it up, but the jury will remain out for a while longer.  I don’t know how successful I’ve been at not getting “lost,” but I hope that I still am the person I was meant to be (dear e.e. cummings, I often think of you and your “it takes courage to grow up and become who you really are.”)  I don’t know if it is a sign of maturity on my part, but I find myself asking more questions…even of J.

On Saturday, out of boredom, J was asking for food every half hour.  It was exhausting.  NO was trotted out so often that it was almost let loose and unsupervised.  NO, NO, NO, NO…(I can hear Amy Winehouse in my head…which, by the way, is a song J sings along to every time he hears it.)  At one point, J got so frustrated that he started stomping on the dining room floor and dishes, bowls, cups and glasses clinked ominously against each other.  Off came the hats (this is my only resource at this point…J knows I am commanding his attention fully when I take his hats away,) and down the stairs into the basement level we went.  Dada sat on a rocking chair while J and I parked ourselves on the couch, right in front of the iPad.

Up came the Proloquo2Go and I opened the FEELINGS folder.  How do you feel, J?   HATE, he chose, and I wished I could convince him to pick a weaker feeling but…if that’s what he’s feeling, that’s what he’s feeling.  I seriously doubt you feel HATE right now, but I’ll play along, I said.  HOME folder and MY FOOD.  I WANT NOODLES WITH CHEESE, PLEASE!, he said.  NO, I said.  Stomp stomp, hand slap, fingers drumming insistently on temple, stomp.  Up again came the FEELINGS folder.  How do you feel, J?, I asked once more.  A LITTLE, he tapped.  A little?  A little what?, I asked while Dada shrugged his shoulders, feeling as lost as I was feeling in the middle of the stomping, drumming, slapping…  Stylus in hand, J tapped for the HOME folder and the MY FOOD folder in quick succession.  I WANT NOODLES WITH CHEESE, PLEASE!  I was about to say NO…again…for the millionth time, but then J tapped the screen again and…

A LITTLE.  I WANT NOODLES WITH CHEESE, PLEASE!

Realization dawned.  J was willing to negotiate with us.  He KNEW he was asking for food again, and that we didn’t want him to eat to entertain himself, but…he would be satisfied with a small portion of noodles with cheese.  I said You just want a little bit of noodles with cheese?  The relief on J’s face was evident; he had finally made himself understood.  I don’t want you to think that I feed J to keep him quiet, but…I do have to acknowledge that he is making an effort to communicate and to compromise.  For this efforts he got a quarter cup of penne rigate sprinkled with cheese, and he was satisfied.

One of the most difficult rites of passage is to learn to talk to one’s parents.  Another difficult rite of passage is getting one’s parents to listen, and understand.  I think we’re getting there…scary though the thought may seem at times.  Ms. Cutler did the right thing, I think…she listened to herself, but she also listened (albeit in ways that were not particularly sanctioned by the “experts” of the era) to what her daughter wanted and needed.  I am winging it…I think I might yet take flight…which means I still can crash or crash-land.  I guess I could do much worse…

 

 

Tuesdays are for tempests in teapots…or, in this cold weather, just for tea…

J and  I hurried to the bus stop this morning, not so much because we were late, but rather because we were trying to keep warm.  It is seriously cold out there.  It is so cold that J, who usually is very blasé about temperature, was voluntarily wearing gloves and a scarf.  When the gloves started to slip from his hands a bit, he made me pull them up and tuck them under the cuffs of his jacket.  Because schools were on a 2-hour delay, Dada and TGG were long gone to their workplace by the time the bus arrived; J and I were waiting on the corner, trying to stay out of the breeze while others sat in their cars on the driveway.

If J was sniffling and coughing yesterday (an obvious attempt to get attention, warm blankets and oodles of affection,) this morning he was the picture of health.  On Sunday morning we had breakfast with his Pandora account streaming the Blossom Dearie Station we created, and it wasn’t long after he was done with breakfast that J decided mid-morning on a Sunday is as good a time to dance as any other.  With a smile so broad it was worth being photographed, J swayed, spun, hopped, twirled, twisted, shimmied and sashayed around the dining room table while Dada snapped his fingers to the beat and I did my best to keep up with his exertions.  This morning, since we had to consume an extra two hours before leaving for school, we did chores and inserted vigorous bouts of dancing in between laundry, drying dishes, making beds and cleaning counters and tabletops.  In the midst of all the enthusiastic dancing I made a mental note never to let J watch Royal Wedding so he doesn’t get any ideas about dancing on the ceiling like Fred Astaire to the tune of You’re All the World to Me, or any other tune for that matter.

With a little over a week to go until his 18th birthday, and with his doctor due back in the office today, I am hoping that the end of the week sees me in court, filing the petition for guardianship/conservatorship.  I don’t know how well my nerves are holding up.  I’m sure some of my anxiety is related to the legal tangle in which we are right now, and the rest of it I will (as usual) blame on peri-menopause because it’s there and it might as well do something other than just wake me up in the middle of the night with hot flashes and profuse sweating.  My internal calculator is adding up all the expenses involved in this, and I am wondering if I should go back to work.  Of course, I then start agonizing about what would happen if J needs to come home early, on a snow day, during vacation…  (We always joke about me writing cheap tawdry novels, but I don’t have the heart -or the sense of humor- to do it with gusto.  I can’t even think of writing a sex scene without laughing my head off…imagine what would happen if I ever sat down to actually do it!)

I am sure all these things will be sorted out in time.  I just need to stay focused on what is important and take matters as they turn up…hopefully one at a time.  For example, on Friday we finally got the form from the school district to authorize J’s use of his iPad with the Proloquo2Go at school.  The teacher attached a post-it note that read: DO NOT write down if he has 3G or 4G as only Wi-Fi is allowed!  They won’t let him bring it otherwise.  I couldn’t stop myself from replying with a HA!  I can’t afford ONE G, let alone 3 or 4.  Between us, and this is tremendously confidential and embarrassing, I have NO IDEA what they mean by 4G, but I assume it’s something that would give J access to stuff he’s not supposed to get at school.

We are still seriously considering a move across the street this summer.  The more I think about it, the more comfortable I think everyone would be.  Also, the more I think about it, the more overwhelmed I am by the financial implications of this decision, and by the amount of work it will generate for me.  August 1st, which would likely be the move-in date, is a Thursday…people will have to take time off from work to assist in this endeavor.  Surgical precision will be required in packing, labeling and distributing all things to be moved.  J’s room will get packed last and unpacked first…I am already hyperventilating about this…and it’s not even the end of January.

The last time we moved, the distance we had to cover from door to door was greater.  We divested ourselves of many belongings that wouldn’t have fit in the truck.  This time around the move is shorter, the space is bigger and we have months and months to plan ahead.  I have months and months to plan ahead.  Hard-earned wisdom reminds me that no one else will care how this is done (except, perhaps, J) in spite of their protestations to the contrary.   I know this because they already get distracted when I start asking for opinions about the whole endeavor.  Everyone wants their space and comfort, and they simply don’t care how they get there…the very notion that it’s an across-the-street move as opposed to an across-the-country move is A +++ for them.

All this (what I have come to think of as the Scylla and Charybdis of life) is making me wonder if I am simply just looking for things to occupy my mind with.  I seriously wonder this, even though I know and am fully aware that I am busy enough as is with everything that is ordinary to my life.  I had a birthday a few days ago and I took some time to seriously ponder if, at heart, I am a melodrama queen.  I reached the conclusion (hard as I tried to convince myself that the opposite is true) that I cannot possibly relish drama and crises because I am constantly cheering the end of one or the other.  I am not, either, a much-put-upon person that Destiny (or Fate or God or whatever you think sends us hurtling towards any maelstrom in the distance) has it in for…  Do I think too much?  Yes, but that has been my problem since I can remember.  I cannot see a problem without actually giving it thought and trying to tear it apart and solve it…

I can’t solve the weather (but I can manage my end of it…with layers and layers and layers.)  I can, however, solve the paperwork and figure out the way to move with as little emotional push and shove as possible.  Where will I find a way to get more money?  Ah…one mess at a time, people…one mess at a time!

 

Braggarts can’t be choosers all the time…

I think by now we’ve all heard about this…

http://www.nydailynews.com/news/national/waiter-refuses-serve-customers-insulted-special-needs-child-article-1.1243239

I don’t know how I feel about this.  I’ve been on the “annoying child” side of the equation often enough to understand why other patrons would be irritated or bothered by J’s presence, especially if his behavior is socially unacceptable.  As his parent, it is my job to teach him to behave, and to determine if introducing him to a social situation that involved overstimulating and overwhelming his senses is appropriate at any given time.  I’m silly that way.  I’ve learned (in the School of Hard Knocks) what happens when an autistic kid is taken into a restaurant that is full of people, full of noise and has very little distance between one table and the next.

I wasn’t there when this happened, so I am going to talk about what is being reported as the trigger for this incident: “special needs children need to be special somewhere else.”

The first question that came to mind when I read that was “WHERE?”  If a person is going to go so far as to say something like that, I’d be one of those people who would ask, rather directly, not WHY, but rather WHERE.  Where would you suggest the special needs child go to be special?

Regrettably, people who only think of their own comfort, rights, etc. are often incapable of answering such a question.  They have the “witty” statement at the tip of their tongue, but once you actually ask them to expand on what they’ve said they tend to resort to yelling, arguing, berating, and resorting to circular reasoning that mainly centers on THEM, not on anyone else.  “Well, why should I be disrupted…why should I have to deal…why do I want to…I am only trying to have a nice family dinner…”

How would you like to be in that car on the way home?  What do you think the atmosphere was like?  Either everyone agreed with him (which wouldn’t make ME want to ride in that car,) or everyone was so appalled and embarrassed that they sank into awkward silence.    Neither alternative seems appealing to me…

“WHERE?  Where should a special needs child go to be special?  Where is the “somewhere else?”  One can then list some suggestions and ask for YES or NO answers; no expanding, explaining, or vagueness; specifics should be one of the requirements of the process.

“Special needs children need to go be special somewhere else.”

Where?  Implicit in this comment is “not near me.”  Do we send all special children to be special somewhere else or just this one that is currently present?  That would be my second question.  They did use children, so I’m assuming it’s all of them, not just the one.  So WHERE?  An institution?  SpecialNeedsChildrenLand?  An interment camp?  A special town designed just for them?  Away from society?  Away from human company?  Do their parents, siblings, cousins, extended family get to go too or do they stay behind?  Who’s going to care for them?  Will the people who run the town or “being special” place be neuro-typical or special needs too?  Do they get to make their own laws?  Do they get to complain if someone comes into a restaurant and acts in an annoying way, like “normal” people do?

Where do we send them to be special?  If it’s somewhere else, who decides where that somewhere else is?  How about we send anyone we don’t like somewhere else?  How about we start deciding that there are places where some people need to go so they don’t pose a risk to others?  How about sending those people who “offend” or “bother” us by virtue of characteristics they have no control over, like where they were born, the color of their skin, their intellectual ability?  There is a huge difference between being found guilty of a crime that makes you unfit to live freely in society, or being found mentally-ill to the degree where you pose a threat to yourself and others without proper care and supervision.  It is another thing entirely to want people to be “special somewhere else.”  How are these kids supposed to learn proper behavior if they are not welcome in their communities?

That we CHOOSE our time and place for an outing is out of consideration for others, of course, but our main concern is J, and always will be J.  Getting overwhelmed in a restaurant will not be conducive to anything positive for HIM.  Neither the overstimulation nor the dirty looks will lead anyone anywhere good, but we CHOOSE…we shouldn’t be emotionally forced to stay at home and isolate our son simply because someone isn’t comfortable around him.  Yes, we consider other people’s feelings, but…

WHERE is the somewhere else that special needs kids need to go to be special?  If I could ask this person one question, it would be THAT, and -believe me- I’d be patiently waiting for an answer…

 

 

A stumble down Memory Lane…

Human beings leave a mark on the world.  It doesn’t matter how “big” or “small” their presence is, there is something they leave in their wake.  J, for example, generates a lot of paper.  I think we could probably form a whole tree trunk out of what he’s generated over the years in terms of documentation, and that’s not counting all that has gone to the shred pile.  Perhaps because I’m getting old, or perhaps because it’s still early in the year and the worm of my “be more organized” new year’s resolution is still wriggling around, but I spent the better part of this afternoon sorting through J’s paperwork…I am dizzy with where we’ve been and how far we’ve come; I’m even dizzier from the effects of sitting on a modified lotus position on the floor.

Anyway…

I found paperwork I didn’t expect to find.  I didn’t find paperwork I was hoping to find.  I am hoping my efforts have been sufficient and we have a clear enough portrait of the young man so far.  That on paper he seems somewhat alien and foreign doesn’t surprise me; no amount of clinicians, therapists, observers could flesh him out in words as well as living with him ever will.  I know the J of the IEPs, the incident reports, the evaluations and assessments, but I also have the luxury, privilege and honor of knowing J himself.

When J steps off the bus these days, his head is bare.  The hats travel in his backpack, and I offer them to him on the way home when the weather is cold.  At home, yes, he leaves them on more often than not, but I think that’s a comfort thing, an “I missed these” thing…I know this because he has been hatless at school for the whole day for some time now.  Yesterday, for example, J put his hats in his locker and didn’t retrieve them until it was time to come home. At home, much like his comfortable lounge pants with the bubblegum-chewing pugs printed on them, the hats are a part of his chill-and-relax wardrobe.  I can live with that because I know that others out there see his lovely head of hair and realize that he’s gone through phases and is ready to let them go…socially.

Among the papers I sorted through today (and which I organized by date from oldest to newest all the way back to 1999, when J was first evaluated for Autism,) I found a document with the heading “this document is for private school use only; copies must not be distributed to parents or students.”  To be honest, I don’t know how it found its way to my hands, but I’m glad it did.  The incident report from May of 2009 indicates that J “chased and tried to attack” a teacher during recess at school.  The teacher, it says, lost her shoe when running away from him.  J, however, quickly calmed down when sent to the swings to relax.  In 10 years, according to the paperwork, J went from a sweet kid who needed as much exposure to society as possible to a menace to all who surrounded him.  I remember that day distinctly because the incident happened a week before the meltdown that turned J into a “problem child’ in the eyes of the school district.  Chronologically-speaking, I had already mentioned to the school that J was outgrowing the untrained one-on-one aide assigned to him for the past five years…I was told that they couldn’t assign a gender-appropriate aide because they could get sued for discrimination.  We made quite an impassioned (and I think eloquently articulate) plea for J to be allowed to develop more social skills, more independence.  Within a month of our meeting with the school, J was branded a monster with behavioral problems and was threatened with suspension.

How far we have come!

Between our recommendations, the crisis that followed and the beginning of taking Risperdal, J went through hell and high water.  The one clinician who hit the nail on the head was not taken seriously enough when her report was issued, and this was pretty much the same attitude that was given to our concerns.  Poor J, who -granted- had issues to contend with, found himself labeled and feared rather than diagnosed and helped.  Seventeen-hundred miles have made a huge difference; the school system that currently serves J seems better prepared to deal with the challenge we served them on a silver platter.  I didn’t fudge on my explanations; I submitted every document I had available to them with full-disclosure as my banner.  I didn’t want to impede his progress or their work; I wanted to help them be equipped for his arrival.  They have risen to the challenge and…here’s the kid…hatless, boxing-gloveless, happy and blossoming…

I am not nostalgic.  I am most definitely not melancholic.  I am a little angry that we got ignored, swept under the rug by people who thought their jaunt through academia gave them an insight that was sharper and clearer than ours.  Most of the progress J made while we were still 1700 miles away was achieved on an unofficial basis; when teachers collaborate with parents for the kids, not for the administration or the district, much is accomplished.  We no longer have to suggest our approach and coordinate our efforts (like an underground Special Ed Special Forces) on the down-low.

And so we keep moving forward…albeit using the flight pattern of a butterfly with hiccups…but we keep moving forward.

Do not go gentle into that good night…but if you’re getting up, please bring me snack

We are navigating the slippery slope of “bedtime.”  We can tell that staying up “late” isn’t a positive approach to the new day, and we have had to handle the mood that comes attached to J the next morning.  We also know that sending him to bed “early” is ridiculous because he is almost 18 and no one wants to be told to go to bed at that age.  The older one gets, the more one wants someone, anyone to say “your duties for the day are done…go get some rest.”  At 18 I would stay up as late as I wanted to…because I could, dagnabbit!  It was my right!  Let the trumpet of independence sound and if it wakes anyone else up pfffft to them!

Much like I was back then, and like any other grown-up who remembers the feeling, J is completely cranky, annoyed and uncooperative the morning after he’s stayed up late.  We are not particularly thrilled either; after all, when J is up during the night, it’s hard to ignore the alternating giggles, monologue, TV sounds, trips to the bathroom, stealthy appearances at the entryway to our room…  J doesn’t just exist, he makes his presence felt, so he’s up and we’re alert.   We suspect that sometimes J is calculating if he can get away with sneaking down to the kitchen, and the answer to that is NO…85% of the time.

When J is up, one of our eyes is ready to open (the other just flatly refuses until it’s absolutely necessary) and our ears are pricked up.  I usually have one foot on the floor, not that that helps much.  I usually (selfish of me, I know) try to persuade Dada to get up so that I don’t have to, and it works…some of the time.  Other times he’s snoring so at his leisure that I don’t have the heart to interrupt his sleep apnea to send him to check what J is up to (though I do make him turn on his side…I love the man, I want to see him alive the next morning.)

Usually, all it takes for J to turn off his light and pretend to settle down is for me to open the door a crack and say “it’s late.  Lights out!”  I don’t open the door enough to go into the room because I don’t want to invade his privacy.  Since I’m not wearing my glasses in the middle of the night, I wouldn’t be able to tell if he’s got a nudie magazine in hand, but I don’t want him to think that opening the door wide and barging in is OK.  The times when he tries to stop me as I leave usually involve the hand motion (which is general enough I can identify it) of summoning me to his bedside.

Not much has changed since the days when he slept in a crib and required breastfeeding every two hours.  Correction: a LOT has changed in terms of details involved in these incursions to check on J (thankfully, my breasts no longer figure into this equation except in that I cannot leave them behind because they are attached to me,) but the essence of it remains the same.  Pay attention to me.  But I don’t WANT to go to sleep.  I said I’m not sleepy.  You’re so annoying.  I need a drink of water.  I have to go to the bathroom.  Come sit by me.  Can I have another kiss goodnight?  Do I HAVE to turn off my light?  It’s EARLY!!!!  The plaintive look that says “a snack would be good right about now” is one I’m especially immune to, even when it comes with the “but I had dinner HOURS ago!!!” look.

This morning TGG reported that J woke him up at around midnight by making a big show of going to the bathroom, turning on every light and hiccuping as he giggled, or giggling as he hiccuped (TGG’s words, not mine.)  We asked if he’d gone to check on his brother.  Oh, yes, TGG said, and J sent him away with a very curt BYE!  A short while later, the same thing happened.  TGG got up, went to check on J, and was sent away.  A third time, and TGG reacted the same way.  By the fourth time, TGG was not worried….he was just plain annoyed.

There is, between the kids, a way of interacting that is exclusive to their relationship.  TGG is enough of an authority figure (because he has a car, money and J feels the need to make sure those resources are accessible to him) that J will KNOW when TGG is being serious, and he will respond by behaving as TGG asks.  TGG is also enough of a teddy bear that J knows when to tug at his heartstrings to get what he wants.  If TGG is worried about J, he will go out of his way to ensure his brother’s comfort.  J is aware of this, and knows that a well-timed sniffle, a small pout or a sad look will make TGG more pliant.  The hiccups, I presume, was the bait for sympathy, and the trips to the bathroom were for emphasis.  TGG, however, didn’t hear any movement from our room and started figuring out that J was making a move for something he wanted at that late hour.  That TGG has to get up early to be at work and has witnessed J’s lack of cooperation after night’s such as this one seem to have tipped the scales in favor of firmness.

LIGHTS.  OUT.  GO.  TO.  SLEEP.

J, realizing he’d overplayed his hand, opened his eyes “wide as saucers,” dove under the covers and switched the light out.  As TGG turned, a voice floated from under the blankets…CEREAL???…and without so much as a NO, TGG closed the door behind him.

We heard about this over coffee this morning after J had left for school.  TGG offered this as the explanation for what can only be described as TGG stomping out of his room (with hair reminiscent of Albert Einstein’s, the look of Droopy Dog and disheveled as only the parent of a toddler should be) at 5:30 a.m. and saying to a rather argumentative J “oh, no you don’t!  You had me up all night, young man, and now YOU are getting UP and going to school.”

We couldn’t help laughing a little.  To be honest, when your kids start sounding like YOU and they ask “I was never like that…was I??????,” it’s entertaining…

 

 

The mood improves…

J was more sociable yesterday when he got off the bus.  I was happy to read in his comm book that he had just tried once during the day to get his way, and that this led to a mild incident of self-aggression.  It petered out, the teacher said, as quickly as it had come…

When we got home, though, J wanted me around.  He didn’t really mind my leaving the room (which I did from time to time to check on other things and to encourage him to stay by himself without getting anxious,) but he liked it better when I was sitting at the desk working as he quietly watched TV or listened to music.

And that’s when he started choking…

I suppose he was eating a cracker and it went down the wrong pipe, but I still leapt out of my chair and gave him a good smack on the back (without panicking, of course) until he said I’M OK, took a deep breath and asked for water.  J was shaken enough by the incident that he sat quietly, ignoring his snack, for the next hour or so.  From time to time, he sighed and said WATER before taking a sip.  I wonder if he has a mildly irritated throat that is making him uncomfortable, or if he just freaked out a little by the cracker getting stuck in his throat.  Either way, I made sure to encourage him to eat if he wanted to, drink plenty of water and (in this I was unsuccessful) to let me look at his throat.

The rest of the afternoon was spent folding laundry, practicing requests and phrases with his Proloquo and finishing up a few minor chores that I’d left hanging for J to help with when felt like it.  By the time Dada got home, J was happy to see him, ordered an immediate change into at-home clothes and then wanted us BOTH to keep him company in the basement until he was satisfied that we both care enough to sit there and freeze in the tundra when we’d rather be upstairs near a heating vent.

After dinner, J was much happier and much more willing to be by himself.  Only God knows why there are times when he succumbs to anxiety over being left to his own devices, but I’m not going to question it…  If I, once in a while, would like a cat to curl up on my lap and keep me company, I cannot begrudge J his occasional bouts of “I don’t want to be lonely.  Sit there and keep me company.”

By the time his bath was done, J was dancing a very happy  jig while towel-drying himself.  He was singing (tra-la-laing enthusiastically, in fact) and hopping about while waving his towel around and hopping from one foot to the other as he shook his belly and his butt.  I think it is safe to assume (and this was the general population’s conclusion) that he was feeling much better about whatever was making him blue.

This morning he was happy.  He asked for money for his wallet, jauntily placed his hats on his head, and rubbed noses with everyone before leaving for school.

Isn’t that just like a teenager…

Time’s a-wasting…but all we can do now is wait and be mature, right? Right? Yeah, yeah…right! Right?

J woke up in a surly, angry, cantankerous mood this morning.  That it threw us for a loop goes without saying.  That it could be he’s absorbing all the stress permeating our household is a distinct possibility.  The pile of paperwork we have to work through for the guardianship/conservatorship petition is significant (and convoluted,) and the delays surrounding the process are not helping promote peace of mind.  Outwardly, we are cool as cucumbers, but we know (and it roils at the bottom of the kettle of our anxiety) that the clock is ticking on this whole legal process.  I’m sure J, with his super-Spidey senses is completely in tune with what we are trying, very desperately, to mask from him…

So this morning was not bad, but it wasn’t good either…he left for school feeling happier, but not -by any stretch of the imagination- “happy.”  As I wrote in his comm book: it could be that he’s not feeling well (we are, after all in Flu Country, and he’s been vaccinated but…) or that he is seeking attention.  If it’s the first option, at least I bought medicine for helping alleviate the symptoms and I’m ready to nurse him back to health.  If it’s the second option, oh, how I wish he would just say “pay more attention to me, please.”  This morning, in the middle of a rant, I asked him how he was feeling.  He picked up his iPad, found the Feelings folder in his Proloquo2Go and simply said HATE.

At the age of nearly 18, it is easy to boil down our discontent to HATE.  I didn’t take it as a personal affront, and I know that J wasn’t in a hateful mood.  The symbol matched what he was doing with his hands and face at the time.  If he had found FRUSTRATED more quickly with his eyes, he might have picked that one instead.  In a nutshell, he was not in a good mood.

His shoulders were very tense, and he was angry.  The weather, after a few pleasant and unseasonably warm days, has turned again, and I’m sure he is feeling a wee bit of the winter blues, the stress we’re all concealing (something that it seems we’re sucking at massively,) and any of the teenage angst that is common at his stage in life.  I wrote a note, as I said, and I’ve been waiting to hear if we need to run over there to get him…

In light of our interesting (I don’t want to say catastrophic because we are not quite done yet) experience with J’s guardianship, I will offer some advice.  It’s entirely up to you to take it, or leave it…

1)  Call the court first.  They know, better than attorneys, what the process is and what forms you’ll need.

2)  Keep notes of what you’ve done and when.  Not only will they help you keep a timeline, but they’ll also refresh your memory and take you back to the person you contacted, when, why and what they suggested you do.

3)  Track down all the documents you might need, and make sure all the copies are official and up to date.

4)  If doubt nags at you, listen to your inner voice; it’s talking for a reason, and if something is bothering you or doesn’t seem clear, it’s best to ask and ask and ask and ask again until you’re comfortable.

5)  Make a list of what needs to get done, and try to come up with a workable timeline; give yourself plenty of time in case any issues arise that you weren’t counting on.

6)  If you hire an attorney, you will feel more empowered if you’ve done your homework beforehand.  Read about the process; learn the requirements; don’t let the attorney do all the talking and guiding.  If the attorney gets the impression that you know nothing, he/she could take it as a sign that they can take their time and lead you through a significantly more ornate and curlicued path than you need to follow.

A quote from The Best Exotic Marigold Hotel keeps coming to mind (in Dev Patel’s voice, no less): Everything will be all right in the end… if it’s not all right then it’s not yet the end.   It’s not yet the end, is it, of this whole convoluted thing, and so we have to trust that everything will turn out just fine.  (It WOULD be lovely if Dev Patel could come and tell us this in person, but we’re not going to be picky…)  I do feel like we’ve managed to cut a path through the entangled vines of the process; we also know that, in trusting the attorney, we helped the vines grow and become more entangled more quickly.  Now it’s not about damage control, but rather about having started from scratch and peeling as many layers as possible from the process without losing track of what it’s about.

We are worried.  We are more aware now of what being J’s legal guardians and conservators entails.  In essence, it is not much different from being J’s parents with all the obligations and responsibilities that involves, but it is daunting nonetheless.  It almost feels like we are now about to become J’s parents…on steroids!  The scariest part, however, is not that we are about to become his guardians, but that -because of timing issues and unexpected delays- our son will be guardian-less, unfettered from parental interference and participation, until the court responds to our petition by granting us the permission to care for, and look after, him.

I know I am being redundant.  I’ve spoken (written) about this many times before.  It still is something that gives me (us) pause: J is about to become an adult, and -as such- he will be able to declare his choices freely while assuming responsibility for them, and unless we actively request the honor and privilege of looking after him.  For a few weeks, I won’t be able to participate in J’s medical appointments, and even if I’m allowed to sit in, I legally have no say on what the treatment is…

THAT is some scary crap, I tell you…no wonder the anxiety is seeping out like a noxious gas…  :/

And deep breath…

and let it out slowly…

and deep breath…

and the clock keeps ticking…