We go to see the “Talking Doctor”

J makes a very clear distinction between doctors that worry him and doctors that don’t.  His psychiatrist doesn’t worry him…much.  That’s who we refer to as the “Talking Doctor.”  There will be no poking, prodding, auscultation, drawing of blood, use of any type of needles.  The only anxiety J feels when we go there is when he encounters other patients in the general outpatient waiting room.

As with every other mental-health facility, the one we visit is full of people with a variety of situations that, when gathered in one room, can be a bit overwhelming.  Some people don’t like crowded rooms, low ceilings, things that are not orderly…many anxieties in one room can bounce off each other, and the vibe can be overwhelming.  J puts off these vibes, too, so when they come back to him from someone else, it seems to emphasize them.  Yesterday he locked eyes with a young lady who stared at him in a way that unnerved him, and I’m sure he unnerved her too, but their responses were different: she started laughing nervously while fingering a rubber band she was wearing on her wrist, and J just burrowed into me and started squeaking anxiously.

We have come a long way because I simply had to say “I have you, dear.  I will make sure you’re fine,” and he allowed the nurse to lead us to a smaller waiting room closer to our doctor’s office.  This smaller waiting room is divided into an area for older patients and an area for children.  J likes the rug in the children’s area so he sat in one of the bucket chairs while I sat next to him with a low table between us.  While we waited I read stories to him; I am in the habit of carrying several of his books with me when we go somewhere that involves a wait.

People started coming in to wait for their doctors, and there we sat reading and giggling.  I realized that in this scenario we were the odd birds: two adults happily sitting where the more colorful rug dominated the room with The Fat Cat Sat on the Mat, Froggy Gets Dressed and Peek-a-Boo! for entertainment.  The other patients, many of them children under the age of 12, sat with cell phones in their hands; their parents were also on cell phones.  J had his iPad, of course, but he was turned towards me, and we were both looking at the book and animatedly interacting over the words.  When we ran out of books, we both looked at his Hugless Douglas and Charlie Brown apps on the iPad. Several times we looked up to see people giving us strange glances, as if we were doing something terribly unusual.

This was our next-to-last visit to the psychiatrist.  He is pleased with J’s progress and development, and since he has been med-free since last December, we agree that we have moved past the more serious issues that used to hinder our young man.  A calmer, more focused J went into that office yesterday, and sat calmly listening to what we had to talk about.  He didn’t interrupt or ask to leave as he usually did in the past.

The doctor and I talked about how TGG’s absence has affected J.  We also talked about how the sudden integration and equally sudden disappearance of his nephew from our family life has affected J.  The doctor agrees that these things are very difficult for J, and that it may take him a very long time to overcome the resentment and antipathy he seems to feel for his brother now.

I also explained to the doctor that TGG came to visit for Dada’s birthday and announced that he is about to become a father again.  He also has decided to get married.  He had known about the pregnancy for a while but had opted not to tell us.  We don’t know if the marriage proposal was the result of finding out about the pregnancy, or if that came first and the other second.

Were we upset?  I don’t know.  We were not surprised.  TGG has moved so fast on all these life-altering decisions over the past three years that we cannot say any of this comes as a shock.  We have never met his girlfriend, or her two children.  We have never met her family.  We are still recovering from the previous girlfriend pulling a rug from under us; we opened our hearts and our homes wholeheartedly, and then discovered that there were many conditions to our involvement in our grandchild’s life.  Things got emotionally messy, and  it was proving overwhelming for J.  We had to tell ourselves that, while we are probably being horribly selfish, we have to think of J’s well-being first and foremost.  He has no one else to look out for him.

We asked TGG to please understand that an instant family is not an easy thing for J to adjust to, that it’s been a rough year, and to give us time to see how we can navigate this situation so that we don’t have any regression that will affect J’s transition into a more independent life.  We don’t think TGG gets it, though.  That very night he was asking when we could get together for lunch or ice cream to meet everyone.  Dada and I have spent many hours talking about how this is going to affect everyone, and we don’t see J taking like a duck to water to two toddlers, a baby due in February, and his brother’s soon-to-be wife as frequent fixtures in our home.  The year-old baby we introduced last year who disappeared shortly after turning two was heart wrenching for him; I had to make the PECS that indicated his visit disappear, and J spent a good long time not wanting to watch The Three Little Pigs because that is what he and his nephew used to watch together.  The high-chair we have stored in the garage is now covered with a blanket because J would stand there and stare at it when he went in to get his snack box ready in the mornings.

The doctor agree with me: J’s equilibrium and mental health are a priority.  We need to make sure that we take him into consideration as we move forward with all these changes, and that might mean that TGG has to cool his heels for a while before introducing his whole family.  Of course, TGG has never been one to cool his heels, and he seems to have lost touch with what we’re up against here.  We know what it’s like to have small children; we know what it’s like to go from me to us to ALL OF US in short order.  We understand, but…we are middle-aged people looking at the shorter side of life while caring for a developmentally-disabled adult who has mental-health issues.  We have to tread with caution and exercise wisdom.

So many things have happened this year: my father passed away, TGG moved out, we gained and lost a grandchild in a very short time, J finished school…and now we have more skipped beats, lost stitches, knots, and hiccups in our story.  It is inevitable, but it also has to be handled with a certain finesse.  The doctor wants to make sure that J doesn’t feel like he’s being imposed on and reverts to the unmanageable anxiety that caused his bouts of aggression, SIB, and depression.  We don’t want to go back to meds.  We want J to move forward, and that takes work.

I was recently told that I am a narcissist.  As a child I would run to a dictionary when a word I didn’t know what used around me; the definition I know of narcissist doesn’t really apply to me, but I suppose it could be used in a wider sense.  Because it’s what I do, I’ve gone back and read what this means, and I still don’t think it applies to me, but I am not as intelligent or successful as the person who called me this.  If anything, I think I simply am an introvert, and I focus on my family because, well, no one else outside of this environment will do it for me.  Our well-being as a unit, and the well-being of each of us as individuals is important to me.  I make no bones about not being a people person, and I know that people, in general, do not like me.  It is not a loss to either entity.

In the past weeks I have realized that, yes, we live in this bubble that is hard for others to understand.  I understand everyone has their own bubble, but ours seems to carry with it certain pitfalls that are outside the realm of understanding for outsiders.  I can easily empathize with people’s situations because they are more easily and readily accessible to human experience; our situation, unless you have experienced it more personally, seems to elude the grasp of those who don’t deal with ASD on a daily, non-professional basis.

The doctor gave me a measure of peace of mind.  He is concerned about what all this upheaval can do to J, and he wants us to be as sensitive to his needs and reactions as we possibly can.  Dada and I have talked about it, and we will set up an opportunity to meet with TGG and his family to explain in person WHY we need to take things very slowly.  Will they understand?  Ah, that’s another matter entirely…we’ll see.  We can only hope…

So…there you are.  Feel free to give your opinion.  I listen to all, and I do take them into consideration.

 

 

J benevolently rescues his parents…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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And then, like Shane, he was gone…

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Fifteen days…

Well, I would like to say that I’m closer to being ready than I was five days ago, and I am…but not as ready as I thought I would be.  Life, as usual, intervenes with the progress of all my preparations, and I find myself fine-tuning even as I go along.

J is happily oblivious to all the planning and re-planning that I’m doing, and he basically ignores all grown-up conversations that relate to the upcoming transition.  Granted, this is in part due to the fact that we have not once used the word SCHOOL in our conversations regarding the matter.  We have become the masters of word substitution.  We have even taken to quoting Pooh’s Grand Adventure: The Search for Christopher Robin and imitating Owl when he says that Christopher Robin “has gone to S-C-H-O-O-L!  [gasps]  Skull!”  In short, we’ve become ridiculous.

J knows something is about to change significantly, and he has decided that, for the time being anyway, he will not let go of wearing his snow boots.  They comfort him.  We’re not going to press the issue because it’s not worth it.

Yes, I know…life cannot always be comfortable for J, but…this I’m willing to give him leeway for.  It’s just snow boots.  If he steps on us, yes, it hurts, but that’s a relatively small price to pay for a little comfort for our son.

While we have not really seen TGG more than three times since he moved out (and, believe me, the times we HAVE seen him have been far from pleasant,) we know that J has acclimated to this change.  The first few days were rough, but we’ve found the balance, and now we can actually mention TGG’s name without eliciting negativity or anxiety in J.  That, my friends, is progress.

Another plus is that we now have a J-sitter…or a J-companion…or a presence that allows us a brief respite here and there.  Well, technically, we have TWO.  A neighbor recommended her dog walker as a potential helper, and -after a brief interview- we invited her and her husband to dinner.  Our helper is a young, pretty med student.  She is barely a year older than year, and we wanted to make sure that both she and her spouse would feel comfortable with the arrangement.  When you are looking for a babysitter, the requirements are of one sort; when you are seeking for a person who will keep your adult son company while you have some “me” time, the requirements are different.  We wanted to make sure that both our helper and her husband knew that we care as much about their comfort with the situation as we care about J’s.

And that’s how we ended up with two companions rather than one.  That is: one afternoon a week, SHE comes over and helps with J, but if we’re going on a “date night” they BOTH come over and hang out with him.  We leave dinner ingredients, and they cook and eat.  It was tremendously comforting to find J sitting at the table eating balsamic chicken and couscous with chard in a totally relaxed and happy mood.

To be frank with you, we had been planning an escalation of food bribes if the first outing didn’t work out: duck, crab, veal, lobster, leg of lamb…  Yes, we are shamelessly in need of a break here and there, and we’re not afraid to go to any gastronomic lengths to achieve it.  We can tell that J is a fixture wherever we go because when we showed up at the bookstore on a Saturday evening without him the booksellers were saying “hey!  You’re on your own tonight!!!!”  We felt compelled to explain that J was at home and happily hanging out with people closer to him in age than we are.

And so we reach fifteen days to the last day…

The list of things is still long.

The level of chaos waxes and wanes.

We’ll figure it out.

Eventually.

Of course.

Dear Bobby and Grace…

A lot has happened in the past month and a half, and I’ve been -I admit- cocooning and trying to navigate the changes.  My father died on a Thursday in mid-February, and the world has been a whirlwind of unexpressed grief since then.  TGG moved out to start his life as an independent household elsewhere, and that hasn’t made matters less complicated.  We’ve managed, mind you.  We don’t think TGG’s absence is a bad thing for anyone, but helping J adjust has not been the easiest task to handle.  Absence, it seems, has been the operative word lately.  My father’s absence from this world (although expected,) and TGG’s absence from our household (although anticipated) have brought on change that requires emotional fine-tuning.

I’ll say that J has gone through several stages of grief.  He skipped Denial because there was no denying TGG had packed up and left without having a conversation with his brother; the Anger went fairly well.  Target (the last place where J had seen TGG working) became an Angry Place, and we suddenly (and, thankfully, briefly) relapsed into impatient tantrums when at the store.  Never mind that it was J who wanted to go there; grief doesn’t really make sense at times, and our reactions to it don’t have to make sense either.  The Bargaining came in the shape of a very strict flight plan when visiting Target (even at J’s request.)  Depression, like Denial, was skipped and we went straight into Acceptance.  After a month of not seeing TGG, J felt awkward and uncomfortable when we got home from an errand to find our oldest packing things up into his car.  The hug was similar to Michael Corleone kissing Fredo Corleone…the lines had been drawn, and TGG now knows that J felt betrayed, not so much by the “moving out” as by the not having a conversation about how things were going to change and why.

Let’s say that TGG doesn’t owe J explanations.  Explanations, however, would have been nice.  TGG made the classic mistake of thinking that J wouldn’t understand, and J -obviously- felt slighted and will take his time in finding a happy medium between the way things were, and the way things are now.  He is, however, finding a new “normal” here, and we live in a household of three quite contentedly.

Change looms over us.  It hasn’t been easy, but it’s getting done.  We are looking at the brighter side of absences.  My father, I tell everyone, is no longer suffering the overwhelming helplessness caused by a stroke.  The last few months of his life, within the framework of the last two years, were grueling for him and his wife, and there is a strange sense of peace that comes at the tail end of loss.  No, I’ve not yet reacted to it, thank you.  I’ve almost  caught myself about to crumble, but day-to-day life suddenly takes over, and I refocus.  It annoys me that I have to refocus, and I have promised myself that I will let go of the need for some control soon, but it keeps getting re-scheduled due to the impending end of the school year (the last school year ever,) and the re-structuring of our home life.  I have been trying to make sure that J understands that “being us three” is not a tragedy.  It’s just different…  This takes a lot more effort and energy than it would for a “regular” family.

I tend to introspect about that, as you well know.  I think about the whole “regular” family idea, and I try to make sense of how it would be “easier” for us to be one.  The conclusion I reach, again and again, is that I don’t know how it would be if we weren’t as we are.  We don’t know what life without Autism would be.  We’ve never really lived that way, but we’ve seen it done.  Take away the minivan full of kids being carted to and from extracurricular activities, the sleepovers, the vacations at Disneyland, the hopping on a plane to go on a family trip, the Christmas mornings, the once-a-year visits to the doctor, the tantrums at the store because a Lego isn’t being purchased, and you have our life…  Well, leave the tantrums at the store.  They don’t usually have a reason, but there are store tantrums…and they are judged like the tantrums of the neuro-typicals aren’t because, in our case, they are obvious reflections of a distinct inability to parent.  (It couldn’t possibly be a disorder that affects neurological development that causes them, could it?)

On Friday I read, with the same interest as anyone else who has a child in the Spectrum, that Robert De Niro and Grace Hightower have a child in the Spectrum.  I read this in the context of Mr. De Niro asking to include, for the first time in the history of the Tribeca Film Festival, a documentary called Vaxxed: From Cover-Up to Catastrophe.  The documentary was directed by Andrew Wakefield, and Mr. De Niro was hoping to start a conversation regarding what is a very personal matter to him and his family.

The backlash didn’t take long to start.  I admit I was not particularly impressed by Mr. De Niro’s willingness to give Wakefield yet another platform from which to spread his views.  Having Mr. De Niro, who is respected and admired in his field, give credence to a documentary of this nature would support the arguments used by the anti-vaxxer movement to justify skipping immunizations.  Pulling the documentary, after reviewing its content and finding fault with it, supports the conspiracy theories espoused by the anti-vaxx community.  It has become a damned if you do, and damned if you don’t quandary.

This is what I want to say to Mr. De Niro and Ms. Hightower…

Dear Bobby and Grace,

We know how you feel.  This unexpected bomb of inscrutability was dropped in the midst of your lives, and you’ve been trying to figure out why since then.  We’ve all been there.  We all wonder.  Some of us blame it on one thing; some of us blame it on another.  We are all being, whether we realize it or not, judged by people who don’t have this situation, and there is -even if it’s not called THAT- a pointing of fingers because we vaccinated our kids, fed them gluten and casein, had a glass of wine before we knew we were pregnant, lived near contaminated water, didn’t feel overjoyed when we realized it wasn’t the flu but rather a baby we were not yet ready for, and so on and so forth…

We all want to have the conversation.  We all have, in one way or another, tried to have the conversation.  I don’t know about you, but I have often been questioned as to why my son is in the Spectrum.  People often have offered explanations and reasons they have read/heard/surmised from other sources.  If you’ll notice, a lot of these people who have all these opinions don’t have children in the Spectrum.

It’s hard, I know.  Your child, whether people realize it or not, becomes a poster child for what you wouldn’t want your own child to be.  They don’t vaccinate “because of Autism.”  That totally sucks, you tell yourself.  You’re wondering why there can’t be a conversation and you realize that it’s because of the anger.  People who don’t have children in the Spectrum are angry that they might end up with one if they prevent communicable childhood diseases.  It’s a “conspiracy” because we, the “dissatisfied,” “burdened” parents of “damaged” kids, don’t want to be the only ones.  Big Pharma won’t rest until it makes ALL OUR KIDS damaged.

I don’t know you, or your son, but I know he’s not “damaged.”  He’s just the way he is, and it could be that there IS a link between a hereditary sensitivity to certain environmental factors, or that it’s just hereditary, but he’s your kid and that’s all that matters.  If he is, as the press has speculated, 18 years old, your work is about to change.  I’m sure your resources provide opportunities for him that are not par for the course with other individuals and families.  Still, the game is changing for you, too.  Your life, I know, hasn’t been the same since you were “told.”

We out here know.  You have resources we don’t have, but we are all the same when it comes to this “thing.”  We worry about the same exact crap, even if it is to different degrees.  Your heart, Mr. De Niro, was totally in the right place…because, like the rest of us, you want to know, and you want a conversation, and you feel like your hands are tied a lot of the time.

We know.  We hear you.  Our lives, just like yours, are full of constant route recalculations, fine-tuning, what-ifs, oh-nos, uh-ohs, unexpected alterations, quirky developments, head-scratching moments.  We live to the fullest, and some days it’s not in a way others -who don’t have “this” in their lives- can comprehend.

We are not less.  We are not bad parents.  We are not to blame.  We do our best to open a door that will help others understand, but…the world is designed for other things.  We have, in a way, adjusted our behavior, our worldview to that of our children, and we discover that we sometimes can’t quite communicate in a way that others understand.

You are getting flogged for one thing, and thanked for another.  You chose the give a quack a platform and you were slapped for it.  You are now being thanked for pulling that rug out from under Wakefield’s feet.

Yet, this morning, your day was just as it usually is with your son.  You have navigated, negotiated, tried to help, tried to encourage, tried to follow whatever goals you and your son’s team have decided to work on…

Life goes on…hobbling some days, and bouncing others.

We know, Bobby and Grace.  We know.  We are now listening to you.  Tell us what you think.  Help us say what we need to say about these young adults in the Spectrum…

You can totally do this, guys…

 

 

 

 

Of calamitous weather and surprising turns of events…

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

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

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

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

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

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

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

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

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

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

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

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

They didn’t listen.

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

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

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

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

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

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

 

 

 

Suddenly, the end of the year is upon us…

How fast did the past few weeks go????  Sacrosanct bovine!  I could’ve sworn Halloween was yesterday!!!

Nope…it’s already December 7th, and we’re looking at 74 years since the attack on Pearl Harbor.  We’ve had several more mass shootings since I last wrote.  The world is an upside-down, very scary sort of place, and -after today- we have only Tuesday, Wednesday, Thursday, Friday and Saturday of J taking med.

And then the med is GONE.  Gone forever.  Gone for good.  Gone.  G-O-N-E…gone.

Are we ready for this?  Well…yes.  Is this the best time to do this?  Well…maybe not.

The tension with TGG continues.  He’s like the bull in the china shop that then turns around and says “what?  What did I do?” while standing in the middle of a sea of shattered glassware.  Sigh…

Dada has had to travel A LOT lately.  He was gone all last week, and things got a little topsy turvy with J’s schedule and routine, but we managed.  (By the way, nothing says “I missed you” in a person in the Spectrum like greeting someone who’s been gone all week by insisting they change out of their street clothes and put on their pajamas IMMEDIATELY!  Dada had to finish getting his stuff from the car wearing his fleece pants, his Mr. Incredible t-shirt and his fuzzy slippers.)

Of course, when we had looked at the calendar to calculate the date of the last pill, we hadn’t really let it sink in that it’s a Saturday, the day before the First Day of Christmas, three days before Dada has to do a day-trip for work, and two days before the class shopping trip for J.  As soon as my brain registered all this information, I hyperventilated a little.

After nearly six years of having that (shrinking) safety net, we now won’t have it at all.  As we stand on the edge of “one more change,” we look over our shoulders and wonder “have we done enough?”  It’s all in what we’ve done over time, you know.  If we’ve helped J develop the skills to handle his anxiety, fears, concerns and frustrations, we should all be fine.  If we haven’t, well, we’ll have a slightly rougher time of it.

To be quite truthful, there are days when I think that, yes, we’ve worked our asses off to help J, and there are others when I think we’ve fallen short of doing the best job we could do.  Second-guessing is an enemy we face often, and sometimes we smack it down, and sometimes it smacks us down.

One of the greatest problems I face (and this is ME admitting something that isn’t quite stellar about myself) is that I’ve reached an age when I feel I should be “done” with raising children.  I know I am NOT, but there are mornings when the alarms starts buzzing (and Dada’s alarm is very alarming…the volume and tempo of the buzz increase if you don’t promptly answer its initial beckoning,) I think to myself “crap!  Again?  I have to do this all over again?  And I have to have the same so-so results???  What if it’s a “bad” day?  Can I still navigate a “bad” day when I’m becoming increasingly achy and cranky????”

I know I can do this.  I am equipped for it by now, but it’s not EASY.  This is not a walk in the park for us, and J’s degree of dependency on us chafes at him, too.  Like any other adult, he bristles at having to ask for help with certain things, and I know it bothers him that he still requires help with things that other guys his age do independently.  The other day he was constipated, and having to admit this to me (his middle-aged, slightly cranky, glasses perched on the tip of his nose mother) is not easy.  I, after all, need to lean on him on days when I can’t walk without limping.  In the midst of tending to his digestive needs, I explained to J that I need his help from time to time, and some day I will need a lot more help in a lot more ways.

I know I can do this, but to that I have to add “for the time being.”  Eventually, I understand, it will all be “too much,” but right now I can do this.  J can do this, too.  J is beautifully equipped for this transition, and for continuing to develop skills and techniques for coping with life.  Of course, there WILL BE days when it’s all “too much,” but we all have those.  I’d rather have him try and fail than not try at all, and I have made sure that we all discuss this transition so that we can be helpful and supportive.

And here comes the one fly in the ointment: what do we do about TGG?  It seems to us that he has sort of “checked out” from our family experience, and we understand that this is part of growing up and wanting to be independent, but………..

Feel free to chime in; this is an issue that might ring bells in your minds if you have more than one child, and if you have children in the Spectrum and neuro-typical children co-existing in your family.

There is a balance that has to be struck when your family dynamic is altered by adulthood.  Ours is a home where communication is an issue because one of our family members is on the more severe end of the Spectrum.  We have had to jump through hoops, learn ASL, insert PECS into every room, go over things twenty-thousand times before we manage to nick the outer shell of J’s communication difficulties.  Talking about someone present in the third-person, or falling into awkward patterns that weren’t there before doesn’t help.

We had asked TGG to try to strike that balance while we take away J’s med, but I don’t think that TGG understands at all what we mean.  Deep in the throes of love, he has ceased speaking our language, and has learned another…one that belongs to a group of people who don’t truly understand what life in our tribe is really like.  Their customs, habits, rhythm, patterns are different from ours, and TGG has embraced them like a drowning man embraces a passing log.  In the process, he has discarded the language that would allow him to help his brother understand why so many things are changing at the same time.

So we are headed to territory that is somewhat familiar, but we are navigating a little blind this time.  Not a lot blind.  Just a little.

It’ll be fine.  In the end we’ll figure it out just fine because we always do, but we might experience a little turbulence along the way…or maybe not.

Let’s have a little faith until we get there.

 

 

Counting down to no-med days…

A quick inventory of the Risperdal bottle, and a cautious reading of its label has confirmed that J’s last dose of med is on Saturday, December the 12th at some time around 9 a.m.  Based on previous experiences, and on extremely intricate calculations that I cannot divulge because they involve very convoluted logic, J will have a crappy Second, Third, Fourth, and possibly Fifth Day of Christmas.  By the time he goes on Holiday Break, his teachers, aides and classmates will have earned a much deserved break from J’s angst and moodiness.  (Memo to me: make the gift cards slightly nicer this year…call it “appreciation” but really mean “atonement.”)

It’s not that I don’t have faith in our ability to navigate this transition.  It’s not that I’m not sure J is pretty much ready for this.  It’s more that I’m always wary of the sudden (yet gradual) shift in the brain’s chemistry when an outside element (that has been there in greater and then sporadically reduced quantities) over the course of nearly six years.  There’s always that iffy moment when J’s anxiety peaks because his body is looking for something that is no longer there.  Those three or four days can be grueling for him.

In preparation for this, we are trying to keep things organized, and we are hoping to create a solid routine for J with plenty of opportunities for escape if he is inclined to be on his own and away from us.  Insufficient attention from TGG continues to be a problem, but we cannot do any more about that than we already have done.  Last Wednesday TGG took J to the movies, and J ended up paying for the pleasure of his brother’s company; he bought the movie tickets and the popcorn and soda.  Of course, J was over the moon with joy because his brother was finally paying attention to him, but…

Dada is up to his neck with work.  The project he’s been engaged in since he got hired at the hospital is supposed to be done by the first of the year, but between the regular work each team member has to do and the tasks involved in completing this process, things have not been going as smoothly as they should.  Long days, traveling, stress…it is shaping up to be quite a lulu of a holiday season.

The Thanksgiving break is a few days away, and we’re mostly ready for the holiday.  TGG has to work when the store opens at six, and Dada will forgo the traditional Friday day off to go in to get things done for his project, but that’s something we can deal with.  I will probably engage J on decorating wrapping paper for Christmas.  I am planning on a little forest of Christmas trees (made with paper mache cone shapes and tissue paper) for the living room, and J loves doing those things so we’ll work on that, too.

I am trying to keep things low-key because I have not been feeling well.  It’s nothing serious, but I’ve been less enthused, energetic, and sprightly than usual, and I think I need to take things down a notch until I’m feeling up to my usual.  The Christmas shopping is 85% done (it’s always the little things that jumble me up,) and we have our menus clearly planned for all upcoming holidays.  I’m skipping Christmas cards, and I’m going to focus on making our Christmas a nice quiet one that will be conducive to J adjusting to life after Risperdal.

There WAS life before Risperdal, and parts of it weren’t so nice, but I think its time is up.  Let’s face it, if we compare J to a car, he’s been driving around on fumes of gas rather than a full tank for a while now.  I’m sure that there will be not-so-nice parts to life after Risperdal, but that can be said about everything in life.  My job in all this is to try my best to help J face yet another transition in life.  That I am taking it slowly, calmly, and trying to not overexert myself should not be construed as being unprepared or being cavalier about it…

We are still wearing a ton of bandaids, but we now choose to go out without taking our brace with us.  We have even gone out for excursions without the band-aids. I don’t foresee (especially with the anxiety that overtakes him when the med is reduced) that the band-aids will go the way of the boxing gloves, but I do foresee that J will make entirely personal decisions regarding certain things he carries, wears, clings to, and so on and so forth.

If there is one thing I’ve learned about J it is that he is a lot more malleable than we sometimes give him credit for, and I am glad that he has become increasingly comfortable with being stubborn, and with negotiating.  Does that make sense?  I am glad that my son can now stick to his guns without being aggressive, and I am glad that he can negotiate without feeling defeated.  Whether it’s about band-aids (negotiating longer and longer periods without them,) or a pair of pants that he was adamant about not wearing, or accepting that he either has his two slices of pepperoni and one slice of cheese OR his cookie OR his two squares of chocolate, J has become an easier person to live with over the past four years.

Furthermore, the change effected in his relationship with food over the past two years can only  be categorized as astonishing.  The same kid who would only eat Ramen noodles, mac and cheese and pizza now happily picks the scallions out of the Pad Thai and eats them first.  I have placed a ramekin with broccoli, cauliflower and carrots in front of him, and J has consumed them with a very modest amount of Ranch dressing.  That he loves fish, eats legumes without complaining and drinks apple juice (something that used to cause melodramatic bouts of gagging and near hurling in previous years) is cause for rejoicing.

We’re in good shape.  Anticipation, but the good kind, is in the air…

We’ll see what happens next…….