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.

 

 

We go on a family vacation…

Spoiler alert: we survive.

On a sunny Saturday morning, and after lengthy and detailed preparations that would qualify me to participate in organizing D-Day (if I’d had a past life,) we hopped in our car and drove east to D.C.

J packed enough stuff to stay a month.  He wore all of it.  His suitcase was heavier and better equipped than any other suitcase I’ve ever seen.  At some point during his childhood he must’ve heard me say “always pack more underwear than you think you’ll need” because he only left enough underwear at home to use while his post-vacation laundry was being done.

This was the very first time we took a trip without TGG.  We were cautiously optimistic about how this might turn out, but we were also ready to graciously accept defeat and head home early.  A Saturday-to-Wednesday didn’t seem significant when we originally planned it, but once we got to our hotel we started wondering if we’d bitten off more than we should chew.  Notice I didn’t say “could.”

We timed our drive in such a way that we arrived at the hotel shortly after check-in time.  We suspect that his hotel has only one set of adjoining rooms because we got the same ones we were in the last time.  This is not a bad thing because J was familiar with the set up, and even looked around as if to say “ah, yes…MY room.”

It seems that we are the bringers of heat waves.  Our trip last year was in June, and it was pretty toasty.  Our first day this time around was very much in the same vein.  We have decided that we will plan for either earlier or later in the year the next time around.  Maybe that way we will have cooler weather, or we will bring a much needed spike in temperatures to the area.

We walked all over D.C.  J was so happy to be out and about!  Of course, I took both iPads, and I bought him a set of headphones that worked a charm.  September is a lot less crowded, and we managed to experience things that we had to skip last time.  Last year J had problems with the crowds at the Smithsonian Air and Space Museum, but this year we walked around the Smithsonian American History Museum and the National Portrait Gallery.  I made sure that one of the iPads was fully charged up when we left the hotel, and then I’d swap it for the other one as it reached 10%  charge.  This allowed us to be out for hours, and J could drown out the noises that tend to cause him anxiety.

We had Sunday brunch at the very crowded but very much worth your while Founding Farmers.  We had a reservation for ten a.m. and, should you want to go there, get a reservation because the lines can be long, and the wait can be exhausting.  After a hearty meal, we set out towards the National Mall, and ended up circling around the Tidal Basin and sitting for a while at the Jefferson Memorial.  There is a very friendly squirrel there.  This, and birds, were the only living creatures that gave J pause.  The first day he was a little overwhelmed by the birds, but by the second day he was much better.  I don’t know if he just thought to himself that they were as much a part of the environment as the buildings and people.

On Monday we made our way to Dupont Circle and explored a couple of bookstores that we had been hoping to visit last year.  J had fun walking around.  He also liked eating a mid-morning snack at Panas, a small place where they make delicious Argentinian empanadas. Tuesday was museum day, and J was relaxed and happy in spite of the seeming not-very-J theme of the day’s schedule.

I will now take a short moment to tell you about the one fly in our ointment.  We took him to dinner too early on Saturday.  I had mistakenly thought he was more tired than hungry so we went for tapas at a fairly early hour.  In the middle of the night he was grumpy and disruptive, and we had to get out of our bed to deal with his anger.  He went through several packages of bandaids, and he was complaining in spite of the snacks I gave him.

At around four in the morning I had to sit him down and tell him “these are all the bandaids you have left.  If you use them all up, we will have to go home because I didn’t come here to buy you bandaids.  When we get up, we will go to breakfast.  If you want to go home then, fine…it would be nice, though, if you told us why you’re unhappy so we can help you.”  Dear reader, that was the end of the bandaids issue.  If I tell you that we came home with the packages of bandaids I showed him in those early morning hours, would you believe me?  You should.  He didn’t ask for any again.  After this incident, J was very communicative about his needs and wants, and we ended up being thoroughly impressed with his behavior.

Now, the other thing I want to tell you about: we are SO GLAD we have made a habit of setting the table each evening and eating together!  We took J to several very nice restaurants, and it was wonderful to see how well he navigated the sea of glasses, cutlery, trays with bread, etc.  I know it sounds snobbish, but we wanted to take him somewhere nice so he would see that all the effort he puts here pays off.  We took him to dine at a lovely restaurant called Casa Luca.  We made an early reservation and it was wonderful!  J ordered the gnocchi, ate his bread after dipping it in olive oil, tried the prosciutto…  We then walked back to the hotel.  It was awesome!

For lunch on Tuesday we went to Rosa Mexicano, and he loved it!  The tapas at Jaleo were out of this world, and they had his favorite sausage: chistorra.  If you’ve never had chistorra and you see it somewhere, try it.   Dip it in something sweet like honey…J highly recommends it.  We made sure we took him to places that might be crowded and noisy, and the headphones did the trick.  We didn’t do this out of meanness; we simply wanted to show him that we cannot always go somewhere where he will have the absolutely perfect conditions.  He adjusted very well.

We drove home on Wednesday and, after a one-hour delay in very slow traffic on the interstate, we made it back with plenty of time for J’s sitter to come see him.  We had her over for dinner and he was very happy to start swinging back into his routine.  The rest of the time until today has been dedicated to settling back into the everyday drudgery that is our life.  He has been happy.

So that’s the recap of the Great Family Vacation of 2016.  We hope to repeat it next year.  We know now that J will happily go along with plans as long as we address the issues that can cause him anxiety.  I cannot get rid of birds, but I can make small adjustments that will make him feel comfortable, and help him realize we care and are trying to help him.

On to other news and comments tomorrow.  For today I’m basking in the glow of a successful trip with our son.  🙂

 

Ah…the weekend…

I have never claimed to have this whole thing figured out, but on Friday I pretty much kicked ass.  That is: I managed to take J to the movies, lunch and shopping without a major incident, and without regretting that I don’t make a habit of carrying a flask full of hooch with me.

On Tuesday J reorganized his PECS board to reflect a trip to the movies on Friday.   Then he switched to “watching a movie at home.”  This happened at least ten times over the course of Wednesday and Thursday, and I had to -very quickly- research WHAT movie, and when. I settled on Kubo and the Two Strings, and even showed him the trailer on You Tube.  As is my habit, I prepared for this possible outing by over-preparing.

I had money, a cab booked with plenty of time, clothes picked out, and a timeline that would make synchronized swimming look like disoriented ducks trying to swim out of a bowl of noodle soup.

I wanted to make sure that this would happen because J insisted (even when he was changing his mind,) and I used the expression “I PROMISE!”  He raised his eyes at that.  Goes to show how often I unequivocally promise that something will happen.  I usually say “we will try,” “weather permitting,” “if the opportunity arises,” “it is quite possible,” “we’ll see if that’s a possibility.”  This time, my friends, I made a solemn vow, and I wasn’t (under any circumstances) going to break my promise.

So after changing his mind, and assuming that I was all bluster and no filibuster, J was pleasantly surprised when I told him (at precisely 11:25 per my schedule) that we were getting ready to leave for the movies.  By 11:35 we were headed out the door to wait for the cab at the complex’s leasing office and, as I had requested, we were notified via text that our cab was running a little behind so it would be a while before we got picked up.

If there’s one thing I’ve learned over time is that you book cabs to arrive with plenty of time for your outing, and that way you won’t be disappointed if they’re running late.  J, who was impressed that I was this committed, patiently sat annoying anyone within earshot with his Proloquo and I WANT TO GO TO THE MOVIES, I WANT POPCORN, I WANT A SODA, I WANT CANDY.  When the cab arrived I think people danced around why taking shots of whisky.

We made it to the mall with plenty of time to go to lunch.  I’m not big on going to lunch at the mall, but I figured since J had done it with his classmates, and he no longer has classmates, it would be fun to see that those outings are still possible.

When we walked into the Chinese buffet, the lady at the counter addressed J by asking “two for lunch?”  He turned to me and handed me the iPad.  I explained that, yes, we would both be having lunch.  We ordered our drinks, and sat there for a moment before I realized that J was looking at me like I’m the dumbest person in the world.   I asked what was wrong, and he rolled his eyes and pointed to the buffet.  Ah…the lady who never goes to lunch at the mall didn’t know that you just get up, grab a plate, and serve your food.  He patiently led me through the buffet, and we sat down to eat.

From there we went to Old Navy.  J loves Old Navy.  He knows how to SAY Old Navy.  He asks to go to Old Navy.  He was so happy when he saw they had the pajama pants he loves that he let out a whoop.  I don’t know if other people get excited when they get Old Navy Bucks, but J was in seventh heaven…he handed them to me like they were a sure-fire winning lottery ticket.

We made it to the theater on time.  J ordered his snacks, handed his rewards card over, and off we went to watch Kubo and the Two Strings.  There were only six people in the theater.  This is good because we were comfortable, but it’s sad because it’s truly the best animated movie we’ve seen this year.  J loved it.  Not only was he happy that I kept my promise, he was thrilled that he liked the movie we went to watch.  He was so happy that he didn’t even mind that he only got a medium soda and popcorn, and that I ate half of his M&Ms.

After the movie we walked to Target, and bought the things we needed for the weekend.  Dada picked us up when he was done with work.  We headed home, and J had a happy, lazy smile on his face.  He was happy to be home and his new pajama pants for the rest of the evening.

On Saturday, however, he was a little less patient with us.  I’m sure the fantastic outcome of Friday went to his head, and he was expecting another solemn vow, but I had to say “we have cheese at home,” and “you are NOT having TWO hot dogs from Five Guys.”  We were not friends for a bit, but we managed to make peace without me losing my foothold on “I’m the mother, darnit!!!”

I know a lot of you are probably thinking “this is no big deal, lady!  We take our kids places all the time, and it’s not a huge production.”  Well, people, I don’t drive.  I am the crappiest, most unsafe, anxious driver ever, and I reserve my driving for “a life must be saved and it’s in my hands!!!!”  J also is used to getting to the movies via Dada or, formerly, TGG.  Going alone with me hadn’t happened in a very long time, and I believe TGG was with us then.  J was also significantly smaller, younger and lighter, and I could handle his squirming, screaming, thrashing, tantrum-throwing body a lot better.

So, Saturday was more of a low point, but Friday was amazing.  And I’m proud of us.  J knows that school has started for everyone, and seeing that life goes on outside that context is awesome for him.  We went to the movies…just J, Slinky and I with an iPad.  And  it was great.

 

Dear Boxing Gloves…

It was four years ago today that we saw you being left behind when J left for school.  We were stunned by this development.  I’m sure you were stunned also.  You had been his constant companions for two years, and he wouldn’t put you down voluntarily for anything other than his shower.

We saw J eat meals, sit on the toilet, get dressed, sleep, walk, do chores all while encumbered with the four of you.  Awkward though this was, you were a welcome presence.  Before you, J had been beating his forehead with his bare fists, and we’d seen boo, scabs, bruises and scrapes appear and disappear in an constant parade.

For some reason, his first comfort item was a balloon.  We had a shoe box full of balloons because, of course, they would pop or deflate, and J would get upset and, hands free of this item, he’d hit himself.  You, his Everlast boxing gloves, were part of his “uniform.”  He also had a sparring helmet to match.  We used to joke that kids at school wouldn’t mess with J because he is tall, big and was professionally equipped for a rumble.

We tried to make light of it because we had to; what do you say when your kid walks around with four boxing gloves and doesn’t let them go for any reason?

The day he got dressed for school and, rather valiantly, pushed you aside when we handed you over, we almost cried.  We didn’t cry because we didn’t want him to think we’re wusses, and we didn’t want him to hesitate.  He had made this decision, and we were going to be encouraging.  The moment J and Dada left to wait for the bus, I sat on his bed (with you,) and called his teacher.  I remember telling her to let us know if we needed to run over there with his comfort items at any time during the school day.

J came home and found you on his bed, waiting for him.  And he was fine.  He never carried you anywhere again, but he always makes sure that you are neatly placed by Raggedy Ann, Minnie Mouse and Daisy Duck when he makes the bed in the morning.  He also tucks you in next to him at night.  He is fond of you, and you still give him comfort.

Four years is a long time.  We know that Slinky has lasted as a comfort item way longer than you, but we also know that Sparring Helmet was soon replaced with Scrum Cap Covered By Rasta Hat.  By the way, you don’t see it during the day, but Scrum Cap Covered By Rasta Hat hangs on a hook near J’s PECS board in the kitchen.  It goes there when he comes downstairs in the morning, and doesn’t get picked up again until he heads up to bed at night.  He sees you more frequently, stopping by when he’s doing his chores, making sure you haven’t fallen off the bed.

I don’t think we’ll ever get rid of you.  J likes having you around.  When he’s sick, he curls up with you; when he’s well, he feels comforted by your presence.  Slinky is his wing…item, but you remind him of how far he’s come, and that it’s ok to sometimes need something to make you feel better.

I wanted to say thank you.  I also wanted to let you know that we remember all you’ve done, and we see your being left at home as a positive milestone, not a negative one.  We don’t forget that you were there when J was being harmful towards himself, and you stopped quite a bit of nasty bumps that might have happened.

These are usually given to the fighter, but we think you deserve them…

Golden_gloves

Sincerely,

J’s parents

We can do this your way, or we can do this the right way…

J has come a long, long way.  There’s no arguing that point.  I see it every day, and I can attest to the fact that leaps and bounds are the measure for his progress.

That, however, doesn’t mean he’s not human, and it certainly doesn’t mean he won’t try to get his way if he thinks it’s possible.  But, heaven help me, I am the mother and I get to call some of the shots around here.  Not too many shots because I respect the fact that he can choose like any ol’ Tom, Dick or Harry.  I do, however, take out my thick marker and draw the random line here…or there…or maybe over there…

Many years ago, when Dada and I were choosing to make our lives OUR LIFE, we agreed that it was crucial (as we embarked in co-parenting these extraordinary children of ours) to not forget what it was like to be whatever age they were at any given point.  So, very often, the urge to punt a child over a balcony translated to “I remember being nine, and THAT thrilled about Christmas morning,” or “I remember being sixteen and wanting my license SO BAD!!!!”  With J, of course, the game is a little more complex…

We have in our midst a 21 year-old with a fully-grown body, and the sliding-scale emotional age that is par for the course in his situation.  He can be tremendously cool about some things, and he can be five and on a sugar high about others.  When the 21 year-old body (with the goatee and the deep voice) reacts with the thought process of a five year-old, well, it can be interesting.

J gets overexcited about things.  He hasn’t yet figured out how to react.  Sometimes, when he’s extremely happy, he goes into SIB, and all the while he is telling you how happy he is, and how much he loves you.  The strategy is now to control the SIB until I can get him to sit down and focus on telling us how he feels, and why.

This sounds a lot easier than it is.  We are, after all, also human, and we get frustrated with the brief spats that arise when J is overstimulated with something we’ve yet to identify.  But we’re getting there.  We’re figuring it out.

J has realized that school is about to start.  Anywhere you go there are reminders of the school year that is about to start, and we know he understands that it doesn’t include him.  That there would be a hint of nostalgia, some regret, a tinge of oh-man-why-not-me, and a definite undercurrent of “crap, I’m stuck at home” is totally understandable.  We know that is playing a part in the minor eruptions that take place from time to time.

The calendar is, for the first time since 1999, completely bare of school-related notes.  The only thing highlighted are the home-game Saturdays for WVU, and the days when parades and other activities might snarl traffic beyond all manageable proportions.  Friday is move-in day…we’re doing our grocery shopping/Friday outing today.  A) The store shelves won’t be bare, and B) we won’t have to deal with crowds.

My dad was a ham radio operator.  I remember sitting next to him as he gently turned the dials on all his equipment, seeking the signal he needed, wanted.  Sometimes the slightest movement would make him lose that signal, and he’d patiently go back and lean forward to listen for a voice (garbled though it might be,) or a bit of Morse code.  Even when I couldn’t make out what was being said, he would smile and feel satisfied that that was as good as it would get, and it was what he needed at the time, and he’d jump in and participate in whatever conversation was going on…

I’m taking that lesson and I’m running with it.  I turn the dial gently, and I listen carefully, leaning forward to get a better idea of what is happening.  I do the best with the signal I get, and I jump in and do what needs to be done.

Every single day.

 

Patience for pancakes…

This time last year we were gearing up for the start of J’s last-school-year-EVER.  We were hoping to get him back in the groove of going to bed early enough to be ready to get up bright and early on school days.  Suffice it to say we’re no longer facing that problem.  Getting up at 6:15 is a tremendous luxury we will not be able to afford much longer (other people still will generate school day traffic, of course,) but right now we’re positively loving the prospect of not being OUTSIDE at 6:15 waiting for the school bus.

J seems to have figured out that he can get up later, and still get a full day’s worth of activities.  Today, ladies and gentlemen, he came downstairs bleary eyed and stretching at 8:20.  He was happy.  He was, quite obviously, pleased that he had stayed in his room, curled up in bed, THAT long.

The young man, I will clarify, is not lazy.  Once he is up, he is a very active person.  He does chores, exercises, goes for walks…he is helpful and proactive.  He also knows that staying in bed is totally ok.

Yes, J used to be the person that was up before we were (especially on holidays, weekends, and days when Dada had taken the day off from work,) and we used to think “will this ever end????”  It has.  It is over.  Sometime ago, after the first few weeks of not going to school for the rest of his life, J figured out that it was ok to linger in bed.  He knows we’re up.  We’re not quiet or even discreet about grinding coffee and setting about the morning routine, but J KNOWS he doesn’t have to get up.

The person who used to consider Ramen noodle his equivalent of a breakfast of champions has evolved.  Not only does he THINK about what he wants for breakfast, he actually doesn’t mind if it’s something that will take a little longer than usual.

This morning J emerged from his room at 8:20, and he went about the business of his morning: getting his snacks from the garage, emptying the trash, replacing the bag that lines the kitchen trash can, setting the table for his meal, and THEN looking for his food.  Sweet potato pancakes.  J asked for sweet potato pancakes for his breakfast.  And, you know what, it took me a bit to make them because I was in slo-mo this morning, but J was absolutely cool with waiting.

After breakfast, J helped me load the dishwasher, and then he went downstairs to set his TV and iPad up.  When I called him up to help me again, he did so with a smile.  I didn’t really have to tell him much, I just said we’re doing upstairs today.  Off he went to empty all the trash cans, and then he disappeared and (I confess) I thought he had ditched me, but he suddenly returned with the trash bag in his hand, and I realized he’d been emptying the trash in the basement level.  He cleaned his bathroom, he brought water bottles from the garage, and then he waited to see if there was anything else I needed from him.

We have done several things together, but we’ve also kept busy on our own.  We go for walks to take trash, check the mail, or just to walk.  We check in on each other.  We have lunch together.  We have adjusted the schedule so times are not set in stone, but they are pretty predictable: after exercising, we go for a walk to the mailbox, and then we make lunch.  We no longer have to eat at noon because the world no longer falls into chaos if we eat at one, or one-thirty.  We have relaxed our requirements, and now J decides when he wants his bath.  In fact, I can now take a bath without him going all Droopy Dog on me.  I just tell him “hey, I’m going to take a shower, and I’ll be back in ten minutes.”  That’s fine with him.

We are adjusting.  We are negotiating.  We are finding our footing, we are sleeping in a little, and we are doing fine.

 

 

I wouldn’t say “like clockwork…”

Once in a while (actually, once a week,) J gets anxious and has a “moment.”  It doesn’t last very long, but it is exhausting.  The PECS board is involved, and there is a rather dramatic insistence on scheduling things until he is satisfied that I (we) have paid attention to what he wants when he wants it.

J times this perfectly.  The moment that I am busy, rushing about, hands full of things, attention focused on something that requires me 100%, THAT is when J will want to go over the board in minute detail.

There is a lot of deep breathing involved.  There is a lot of me reminding myself that this, too, shall pass.  There is a lot of holding a PECS card up to my face, tapping it repeatedly and quickly with one finger, and expecting me to stay calm.  I do my best.  I don’t deny that there are times when I bark and say “yes, yes” because I have either something on the stove, or am slicing something, or am trying to get to the bathroom.

If J doesn’t get the EXACT quality of attention that he requires (because he has his standards and they are on a sliding scale that is unavailable for perusal from the rest of us,) he gets angry.  That’s when the chin-flicking comes in.  Once in a while there is light stomping.  Today we had soft fists hitting the chin on both sides.

My strategy was to say “yes, J…we will go to -insert place here- on -insert whatever day he was pointing at-.”  I said it many times.  J was either unconvinced, or the number of times he had to ask, point, demand attention was higher than on other days.  I said yes, yes, my dear…as you wish.  (Oh, Westley…it didn’t work for you, but eventually Buttercup did figure it out, didn’t she?)  I didn’t really have a problem with this insistence because a) I’m used to it, b) it’s pointless to have a problem with it, and c) I knew it would pass…eventually.

After ten minutes of chin-flicking and chin-hitting I decided to say, rather firmly, “ok, well…I understand that you are pissed off and want things your way, but I don’t think this is productive.”  I went to the balcony, and closed the screen door.  J decided that he should take this opportunity to become even more vocal about what he wanted.  I came back inside and he came up to me, quite close, and repeated the tapping of the PECS card, the chin-flicking, and the chin-hitting.

I don’t tell J he’s being bad.  Even when he’s being a brat, I try to say he’s being rude rather than bad.  Rude is an attitude; bad is character flaw.  So I said “J, you are being rude.  I understand that you want something, but we cannot get on with your breakfast and everything else until you stop this.”  He was shocked that I would take that tack so he got closer, flicked harder and tapped more insistently.

I grabbed the keys, took the security bar with me, and stepped out on the porch.  I grabbed the keys in case J decided to lock the door.  Ditto for the security bar.  I could see him because the door has a window, and I know he could see me.  I locked the door, and stood there looking at the tomato plants on the driveway.

I was more irritated than angry.  I know my son has difficulties communicating how he’s feeling, and I know he can get tremendously anxious, but (as I said to him while he was stomping around the kitchen protesting against life and its hiccups) we are stuck together and all the chin-flicking and PECS-tapping doesn’t help.  “I will help you, but you have to listen when I say whatever it is I’m saying.”  On the way down the hallway towards the door I said “I will come in when you’re ready to listen.”

J’s silhouette filled the window.  He was still standing in the kitchen, his snack portions ready to put in the box, the packages ready to go back to the pantry.  I gazed at the tomatoes and took a deep breath.  I counted to 100.  While I did this, I could hear J walking back and forth between kitchen and garage as he put away the snacks, and then stored the box on top of the fridge.  When I got to 100 I opened the door, replaced the security bar, and hung my keys.  J was standing in the kitchen with his binder, and he was obviously done being upset.

I asked him what he wanted for breakfast, and he showed me the breakfast burritos.  I told him to get the things ready, and stood back in case he needed help.  With very little intervention on my part, he made and ate his breakfast.  He kept looking at me between bites, and I smiled at him in a conciliatory manner.

After that we tidied up the kitchen, made beds, gathered laundry and headed to the basement to do whatever it is we do in the mornings.  Every time I stepped into the TV room, or he came out to the sitting room, he told me he loves me.

At 10:30 we did a few more chores, and then I asked him if he wanted to exercise.  He chose The Sound of Music for his workout movie, and climbed on the elliptical machine.  By the time intermission rolled around, I told him it was lunchtime, and he was happy and ready to eat.  We made lunch, and then he asked for his bath.  After his bath he wanted a shave, and after that he wanted his band-aids and wrist brace.

It is an anxious day.  I know that.  He has been “off,” but he has worked his way through it.  We didn’t start very well, but we figured it out.  Maybe it’s the weather.  Maybe it’s just the excessive togetherness of two adults in the house together all the time.  Maybe he’s just needing the reassurance that he has a say on what he wants to do, and when.

I understand what little I can figure out about all this.  I make sure that I am as fair as I can be, and that -because he was worried about me not being around the day of my surgery- I stay where he can see me if I have to “step outside.”  It is the same dynamic, but it has changed.  I don’t know if that makes sense, but that’s the way it seems.  New and improved?  Same formula and new packaging?  I don’t know how this would be marketed…

All I know is we’re trying to make it work.  It’s not quite running like clockwork, but if you’ve ever looked at a clock’s mechanism (not a digital one, of course) you know it’s quite complex and beautiful.  It takes years to become a master clockmaker.  It takes effort, and attention to detail.  It takes patience and skill.  It takes vision and an understanding of the way pieces work together.

We’re working on it….