Day 118…moving away from the Lego Village.

My memories of reading the Bible all hark back to the days when I attended Catholic school. Of all the Bible verses that stuck in my head, the one I most revisit is 1 Corinthians 13:11: When I was a child, I spake as a child, I understood as a child, I thought as a child: but when I became a man, I put away childish things. My aunts were not, of course, very strict in their adherence to this tenet. No one could possibly expect women who could laugh so freely and tease each other so relentlessly to have any affection or inviolable respect for putting “away childish things.”  

Although I was, by far, the youngest person in the household, I was spoken to with the implicit understanding that I was capable of grasping all that was said to me. Whatever difficulties of vocabulary or complex abstract ideas more easily understood by an adult were approached with a dictionary, and my aunts formed a multitudinous committee of experts who kindly conveyed even the most unpleasant aspects of being a human. They each had their forte; one was kind and wise, another was firm and straightforward, and the third was anxious and funny. Between the three of them, they helped me navigate the Scylla and Charybdis of childhood, adolescence, and early adulthood.

The world and the dynamics of families are such now that we’ve had to be J’s multitudinous committee. The finer points of adulthood, translated for a person who is playing with non-verbal Autism in his kit, are a little trickier to handle than we would like, but there isn’t much we can do about that.

Sometime around Day 115, we started wondering if there was anything, aside from tiling a bathroom, painting cabinets, organizing closets, that we could address to make J’s life more, for lack of a better term, “age-appropriate.” The discussion was not prompted by any discontent on J’s part; he’s been quite cheerful and relaxed during these strange times we are living. We simply looked around and started thinking: “well, he’s TWENTY-FIVE!”

How do you “upgrade” and “update” the living area occupied by a twenty-five-year-old who loves Disney Princesses, jazz, classical music, lava lamps, and his extensive animated movie collection? This is what we are wondering, dear reader. Out of a too-big-for-us-old-people house, J occupies two big rooms and his own bathroom. That’s what he wants: two rooms and a bathroom. The largest room is intended for daytime use, and the other is purely and exclusively for sleeping. He is happy with those, and he is appreciative of the two ladies who come to help me with the housecleaning (because it has become harder for me to keep up, I admit) because they respect his areas and leave them pristine.  

What to do, then, to make these rooms more like a twenty-five-year-old man’s, and less like a kid who lives with his parents? The first thing we pinpointed as “needs to go” is the Lego Village. Over the years, it has grown into a sizable chunk of floor space; J doesn’t really pay as much attention to it as he used to in the past. With distinct “zones” in it, the Lego Village is fun, but it also occupies a large corner that would work for other things. Perhaps we can find someone who will be happy with boxes and boxes (and boxes and boxes) of Lego pieces and all the assembly instruction booklets for all the sets. Perhaps someone will be glad to have all the train tracks and additional pieces of “vegetation” that have become a part of this project over time. A home for it will be found, I’m sure.  

The second layer of the issue is, we think, the carpeting in the rooms J uses. In the whole house, these are the only two rooms that are still carpeted, and I’m already budgeting for a new floor that will better suit J’s status as an adult with his own “pad” as it were. The rest will be paint, artwork, better lighting, and a more suitable layout for his dining and sitting areas. When presented with the question of J’s style, we concluded that our youngest son, contrary to his older brother’s morose approach to life, is a cross between Harry Styles and Jack Black. Where our oldest son would have chosen all-black clothing, a slouch, and a growl, J is drawn to bright and attractive colors and shapes, and a sunnier disposition than one usually expects when faced with a diagnosis of Autism and Anxiety.  

Like many others that I undertake in moments of romantic enthusiasm, this endeavor will involve a lot of sorting and giving away of things. J and I, together, will face the boxes, bins, shelves, and cubes to determine what still appeals and what is just there because, at one point, he felt affection for it. I am sure we will hesitate from time to time between letting go of something and keeping it “just in case,” but we will figure it out as we go along. There are, of course, items that are so bordering on “sacred” that they will remain as part of his decor. I don’t think that, 20 years later, J would want to get rid of Pinky and Red, the two little bean bag dogs he bought at a Borders in Orange County, CA and which, upon arriving at home, were subjected to one (Pinky) witnessing the dunking of the other (Red) in the toilet.  

A few weeks ago, J’s older brother (remember Gonzo? He’s now a father of six!), during one of his rare phone calls to check in with us, asked what we’d been up to. I told him we’d been streamlining, downsizing, organizing, paring down. He got angry when I answered his query regarding the reasons for this by saying that we won’t live forever and don’t want to leave a mess behind. “Well, it’s true!” I said. This led to an even briefer call than usual. The truth, I suppose, hurts?

When my children were children, I spake to them as children; they understood as children; they thought as children: but as they’ve become men, I -their mother- put away their childish things and tried to approach them as one should other adults. One has made his own life and seems to chafe at the realization that ours is closer to its natural conclusion. J, our lifelong commitment, is being shepherded into the stage where his surroundings are age-appropriate without forgetting childhood is another part of who we become as we age. How much of this J can fully grasp we are not entirely sure of, but we do know that he sincerely appreciates and enjoys the life we’ve built together with him.

Wild thing, you make my heart sting…

Our oldest son, always known here as TGG, got married on Friday.  Because of a disagreement we had over the weekend, we only got notice of his intention to do so via text.  Confirmation came over iMessage on Friday night…from someone who saw it on Facebook.

I gave Facebook up months ago, and actually went back on to see if there were pictures.  I’ve been blocked.  Oh, well…  I deactivated the account again.  I will not be sucked into the drama because, well, I’ve come to realize it’s really not worth it.

So we’ve spent the whole weekend wondering how we became the villains straight from central casting.  We’ve reached the conclusion that we suck so badly our entire experience raising children has been part of a delusional alternate universe we live in…

Something in the posting our son and his wife put on Facebook caught our attention.  Stay wild, stay true, stay you.  Not being up on all the youthful lingo of the hipster generation (which they claim not to belong to,) we assume that this is some sort of call to arms.  We are baffled: our son has never been wild (tattoos notwithstanding…he is possibly one of the more timid people we know,) and as for being true and “you,” well…this is the kid who used to be tremendously unique until he realized that the other kids made fun of him, and he relinquished his uniqueness so he could embrace the “generational uniqueness” that all his friends professed.

My dad used to say that what we all have in common is that we want to be unique.  More often than not it is the people who sustain the barrage of abuse from their peers who fly the flag for uniqueness.  If you sublimate, you are saying “thank you, I will blend in until such a time when I am comfortable with not sublimating.”  Our son became one more of the long line of kids who got tattoos, earrings, listened to rap or heavy metal, and acted like the world was an unjust place without ever really understanding that he was doing all this from the comfort of his middle-class existence.  He was “edgy!”  He was “rebellious!”  He was “wild.”

The results of this are two children by two different women in less than three years; a wasted semester in Nursing school; living from meager paycheck to meager paycheck, and complaining about how hard he has to work for said meager paychecks.  And, of course, the attitude that WE are the ones who have NEVER understood him.  How dare we???!!!  He just wants to be…wait for it…HAPPY!

In a nutshell, we are bad parents who don’t understand, and we bring him down.  We are lame, and that’s why we don’t understand.  I believe Busby Berkeley had a sequence in the movie set to this tune; I’m sure Cecil B. DeMille had a cast of thousands performing a scene where this was the gist of it.  Francis Ford Coppola, Lasse Halstrom, Steven Spielberg, Wim Wenders…they’ve made movies about this, I’m sure.  The entire musical history of the Sixties, Seventies, Eighties, Nineties, and so on and so forth has documented this feeling…

Parents of young adults who think they are entitled to whatever it is we do for them: we had it coming.  We suck.  We had best sit here and accept that we failed.  As they raise their iPhones in the air, shake their fists on Instagram, Twitter and Facebook to protest our lack of understanding, let’s take a moment to look deep inside and see the swamp in which our lack of parenting skills is steeped.

We wanted him to get an education.  We never demanded straight As; when he wanted to be an actor, we encouraged him.  He liked to draw…I have lost count of how many sketchbooks, pencils, materials we’ve bought over the years.  He had a guitar, a keyboard.  He was interested in them for about twelve minutes in total.  He wanted to learn swimming, be a Cub Scout, play soccer…we acquiesced.

He wanted an earring.  He wanted tattoos.  He liked to dress like James Bond.  He wanted girlfriends.  He wanted to not be subdued by parental demands for academic excellence; he almost didn’t graduate high school because of his grade in Baking.

His first car, granted, was a Saturn, but then he had other cars.  Against our better judgment we allowed the Playstation, the Xbox, the GameBoy, and the countless hours that were necessary to become well-versed in all sorts of games.  When he wanted to get a job, we signed the paperwork so he could work.  When he graduated from high school (I think his Baking teacher simply didn’t want to deal with him over the summer,) he traveled to NYC with his friends, and went to see plays on Broadway.  When he was sixteen we bought him a suit, shirts, ties, shoes at Men’s Wearhouse.  They weren’t cheap.  He also had a video camera; he was going to be…wait for it…a filmmaker.

When he knocked up the first girl we were supportive.  Disappointed at his lack of precaution, but supportive.  We made an overture, and his child would come visit.  Then he hooked up with another girl, and away went every illusion that school was a priority.  And then came the second kid.  And now he’s married.

In the interim we’ve bought tires for the car, a bumper, paid handsomely for chores that I could have done myself for free, filled his freezer, and so on and so forth.  When I called him out for saying something callous about my mother, that was the end of it for him.  How dare I misinterpret something that he, and I SHOULD KNOW THIS, didn’t mean that way!!!!

Yeah, you know…I probably overreacted.  My mother is old and frail, and -at my relentlessly advancing age- I am struggling with the understanding that being parentless is not too far in the future.  That I will lose whatever link there is to my childhood, to understanding why my mother never quite “took to me” is not easy.

On top of that, my friends, my body’s aging is causing mild-to-moderate health issues.  And I have to, in the midst of this, prepare for the next stage in our lives, and deal with being J’s primary caregiver 24/7.  I could have been a little less angry, but non-apologies and arrogance are something I have very little patience for these days, especially when they come from someone who flatly refuses to meet us halfway.

In light of that, we have decided to embrace our status as bad parents, and we are baffled, but we are accepting.  We know there will be whispers, and gossip. The world thrives on that, and we could address them directly and call out our son in all the public forums he has made his own, but we don’t have the energy for that.  We have places to go, and things to do.  We won’t drag J into it…J doesn’t deserve that sort of shit.

“Stay wild.  Stay true.  Stay you” he posted.  We hope they are happy.  Life can be long, or short, but it will always -inevitably, mercilessly, relentlessly- be full of surprises, and wicked turns.  We have done all we can, and we will take this stinging sensation elsewhere, and there we will recover.  And we will find  a new way of being proper selves because WE have always been wild, true and very much us.  Unrecognizable to our son, who has led a life of privilege without even realizing it, but wild, true and very much us nonetheless.

When I married the absolutely inappropriate man the first time around, my parents were present.  They were not thrilled, but they were there.  They looked mildly horrified and resigned, but they were there.  So were our friends and family.  I made my declaration of independence, my grabbing-life-by-the-balls very public.  Every choice was bold and misguided, but I was proud of the fact that I was fucking up in my own terms.  When Dada chose to marry me, he did so boldly, proudly, even in the face of people thinking “what is he doing?  He’s marrying a woman with a child who has Autism???  What a moron!!!”  We had witnesses; we were thrilled at the community spirit of our declaration of boldly going into the great unknown together.

We managed, somehow, to raise someone who declares his independence through Facebook and text message.  Ah…this generation.  Selfies, but no self-assuredness.  Go figure!  “I take thee, and we become we…we must change our Facebook relationship status.  Take THAT, bourgeois parents!!!!  We are wild, free, true…”  Whatever…  Sigh….

Wild middle-aged parents of the world, UNITE!  We did our best.  It’s time to move on.  🙂

The problem with ointment? That one single, solitary fly…

It has become part of the morning routine: a brief, inexplicable tantrum.

By now I should be immune to the stuff, but it is more unnerving because it had stopped completely.  So the past few mornings, when J turns into an asshole for no good reason, I am left sputtering and breathing so deeply I get dizzy.

This too shall pass, I’m sure.  And come around again, of course.  Only to pass one more time, and so on and so forth ad nauseam.

Is it like this for everyone else out there?  Or is this just in the realm of those who don’t have services available to them?  The tension headaches are a lulu.

So we now have expanded our conversations with the Proloquo2Go, and that helps.  I ask J to “talk” to me, and he realizes that he’s done something he shouldn’t have.  We then go into GOOD MORNING, I LOVE YOU, I NEED A HUG, KISS, LOVE, I LOVE YOU mode.  I tell him HIT WRONG TALK GOOD and we go back to the same GOOD MORNING, I LOVE YOU, I NEED A HUG, KISS, LOVE, I LOVE YOU loop until he finally gets that he should say SORRY.

We are learning something new about how hard this is every single day.  We adjust accordingly.  We fine-tune.  We repeat, and repeat, and repeat.  We go over things many times, and we try to clarify the message so that it becomes more accessible to J over time.

It would help if opportunities for activities were available.  We have made a habit of going to the movies just the two of us, and he likes that.  Tomorrow we might hit Miss Peregrine’s Home for Peculiar Children, but I’m not sure J will sit happily through that.  The book is awesome, and I have faith in Tim Burton’s ability to adapt the material, but I don’t know if J will like it.  Perhaps a bigger bucket of popcorn and his iPad with the headphones will do the trick, but it’s a 2-plus hour movie and that’s a lot of popcorn…

Yesterday J got fixated on the notion of a birthday.  We made cupcakes.  Most of them went to work with Dada this morning.  J was satisfied with the ones he got to keep.  He has only had one so that might be a treat later, or he might just be over the whole thing.

We’ll see.  We’ve passed the tantrum point for today.  I am exhausted and frustrated, but he seems to have settled down nicely.  The trick is to see how long he cycles through this particular routine, and to try to make it less overwhelming for everyone here.

We are, as usual, working on it.

 

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.  🙂

 

A tremendously huge milestone…

Consider, please, that J is 21.  He is signed up for Selective Service, he can buy alcohol (which he doesn’t like,) porn (which I’m sure he’d enjoy)  and cigarettes (the smell of which he finds disgusting.)  He can go into the movie theater and watch any movie he wants…no restrictions.

And now, drumroll, he can tie his shoes.

Is it done prettily?  No.  Is it done quickly?  No.  Is it done without an intense look of concentration?  No.  But it’s done.

Not bad, I think, for a couple of people that the world assumes spend their whole day twiddling their thumbs.  No, dagnabbit, we get stuff done…and that stuff, right now, is shoe-tying.

Don’t ask me how it happened.  I’m pretty sure that it was as close to Eliza Dolittle surprising Professor Higgins by properly pronouncing and enunciating her way through “the rain in Spain stays mainly in the plain.”

First one shoe…then another.  After years of  trying and trying, and failing and failing….

You know how people say “in the end it was anti-climatic?”  It wasn’t.  It really, really wasn’t.  Two days running, it still isn’t.  We actually celebrate it every time he does it.  It’s almost up there with when he finally got potty-trained at the age of eight.  It’s a big, big, BIG deal.

I am sure that people think we do very little when we’re here all day.  I know this because people often complain that I don’t answer their calls, e-mails, text messages, and don’t have “time to hang out” with them.  I am tempted to do an auto-reply on my e-mail and text, change our voicemail greeting, and have a t-shirt made that reads “trust me, we’re doing important stuff.”

Life sometimes reminds us that we’re not just running on idle.  Life sometimes throws us a little gift like this miraculous shoe-tying development.  I would say we’re not worthy, but I firmly believe that we are because we try, people; we really really REALLY try.

In the middle of everything else (the tense negotiations about the PECS board, the echolalia that drives us to distraction) a little ray of “we haven’t been wasting our time” shines through, and J achieves something that truly makes him more independent.  And he is proud of himself.  This is not just about us not having to sit on the floor with his foot on our leg as we tie his shoes…this is about J being able to do a little more for himself.

Many of my friends announce their children’s achievements on Facebook.  I think that’s tremendously cool.  Moving away from home to start college, joining this or that organization, winning this or that competition.  Even those friends who have kids with disabilities share their successes, and -believe me- I rejoice with them.  I don’t feel envy, but I do have moments when I wonder “what would have J done if…”

I snap out of those.  I know he’s doing a lot.  I am aware of the effort he puts into everything he does.  I am tremendously proud of him (even when it’s a “I have to say this X number of times to quell my anxiety) and I tell him all the time.  He knows the sign for PROUD, and when I tell him I’m proud of him he smiles broadly.  J knows.  J is aware.  J accepts the recognition, and he values the time we spend working because he knows he’s going to figure something useful out in the end.

It’s not that we don’t get frustrated.  We do.  Some days can feel long.  Some hours spent working on a seemingly menial skill can feel even longer.  We have moments when we both get upset and have to take a breather from each other.  There are times when we set aside whatever it is we are trying to master (we…yes…not a royal we…both of us are trying to master it…he the learning, and I the teaching) so we can try again later…maybe much later…both of us refreshed and renewed.

We enter September with a new skill learned.  It’s a biggie.  We are thrilled.  We are thankful.  We feel empowered.  On to the next thing!  Bring it on!  We can do this!!!!

Of course, we’ll have to stop dancing little random jigs to get on with whatever comes next, but -for now- let us bask in the glow of the shoe-tying.

 

 

A stumble down memory lane…

Summer is winding down, and I have to start thinking of all the prep for colder months.  You read right: I’m organizing the garage again.

Life is just an accumulation of stuff, isn’t it?  For some reason, I can send along clothes and shoes we no longer wear.  I can hand-down dishes, pots and pans, small appliances.  I have even, in my mission to downsize and pare down, passed along holiday decor that doesn’t make sense for us anymore.  In the middle of that is left of all that sits a plastic crate I can never really address fully…

I opened it today.  I admit to you that I was looking for old letters my dad wrote to me when he was still talking to me, and before e-mail became his medium.  I found, among other things, letters and cards from people that, for the life of me, I have no idea who they are.  I found greeting cards, postcards, notes and post-its.  And I found dad’s letters.

I read everything else, but those I simply put aside and tied with a rubber band.  I will deal with them later.  I can’t do it right now.

Instead I focused on the kids’ old papers from school.  Drawings, scribblings, certificates of recognition, doodles.  I found all of J’s comm books from his first year of school.  I found notes the teacher sent attached to hand-over-hand work he’d done.  We were all so excited!

I found school pictures that document J’s development from a cute waif-like creature to the strapping young man he is now.  I found the first one with a hint of mustache.  I found the first one where he was absolutely terrified of the camera and is cowering.  I found the one where he agreed to wear a long-sleeve polo shirt, and the one where his hair did the Alfalfa thing.

I framed three of the photos and showed it to J.  He smiled at himself.  It took him a moment to recognize the skinny kid with the bright mile and the spiked up hair, but he knows it him.  And he knows these are school pictures, and he knows he’s not going back. Yesterday, in preparation for our short vacation trip in a few weeks, I went looking for a backpack I can use, and J didn’t want me to get one…because it’s the sort of thing that reminds him of school.

We have started introducing the subject of this trip we’re taking.  The place will be familiar, and we’ve chosen the same hotel we used the last time.  Our itinerary will be simple.  We will see what we really, really, REALLY want to see first, and then -when J decides he’s done- we’ll follow his lead.  We’ve been researching places where he might enjoy eating, and we’re packing our comfortable walking shoes.  We will be ready for whatever adventure J is inclined to pursue, and for whatever he’s not.

Yesterday he wanted to go to the movies.  This was a slightly tricky proposition because J is not the kind of individual who can go to watch the same movie several times AT THE THEATER.  At home he can watch the same thing over and over and over and over, but the theater is usually a one-shot deal.  Since we’d been to Kubo last week (have you seen it yet?) we were at a loss.  Our calendar reminded us that The King and I would be showing at the local theater so off we went to watch it.

If you’ve read this blog before you know that J is a fan of musicals.  Most of them, of course, he was experienced at home, and we all know that’s just not the same thing.  Yesterday he got to watch Yul Brynner and Deborah Kerr on the big screen.  It was a treat for him.  He was so happy!  Not only are the songs familiar, but he could see all the details much more clearly.  I have to confess that we had a wonderful time, too.  I am, after all, the girl who understood romance from seeing Yul Brynner reach for Deborah Kerr’s waist before twirling her around the floor with careless abandon.  (Yes…I sighed out loud and, says Dada, I squeaked…)

Today we are in “I have a cold” mode, and I think it’s more a matter of “I want to sit on the couch and be cuddly with you, mother” than anything else.   The weather, though, HAS started changing and J now wants his flannel sheets when he makes his bed, and he has plugged in his electric throw.  He hasn’t turned it on yet, but it’s ready just in case.  Regardless of the temperature outside, he feels a change in the air, and our resident chipmunk running around gathering food is a clear indication that summer is winding down.

So it’s back to the garage and the bins for me.  And looking for a backpack or such is necessary, too.  Post-school life goes on and we are happily realizing that we’re all moving forward…some us limping…some of us bouncing…but forward is that way, and that’s the way we’re going…

 

A little rant on a Thursday…

Please, bear with me…I know I’m going to come across as a horribly old, cranky, not-with-it person, but I do have a point.

Raise your hand if you have a child, or are close to someone, or actually have ASD.  OK…good.  Present and accounted for, and I should have waited until AFTER my shower AFTER our run to raise my hand, but that’s neither here nor there.

Every single day, as J’s parent and primary caregiver, I work with him to make him more socially functional.  This is, as you know if you raised your hand, not as easy as it sounds to those uninitiated in the intricacies of ASD.

J has been taught when to say HELLO, and still has to be reminded.  His response to HELLO is something he has learned through effort and consistent repetition.  HELLO means to him something he does to fit into a social scenario.  When it does happen spontaneously, it is quite lovely, and we make a huge deal of it.

J has also had to learn that eye contact (while disturbing and difficult for him) is something other’s expect, and we encourage it when he feels comfortable with it.  We have also taught him to respond to his name; he knows when he’s being addressed, and we expect him to show a certain degree of attention, even if it’s only for a very brief moment.

We don’t expect J to be a walking, living, breathing example of Emily Post’s etiquette, but we do expect him to behave closer to what is considered acceptable social behavior so that others know an effort is being made, and so he will feel more a part of his social surroundings.  He is NOT, by any stretch of the imagination, a trained monkey, and we know that there are moments when his social behavior will be contingent on other stimuli that he cannot process in a way that satisfies others.  We do, however, expect him to ask for HELP and ESCAPE if he’s feeling overwhelmed and that, as you know if you raised your hand, is a significant social consideration towards others.

And here goes the rant…

Our tall, handsome, burly son is looked at like a weirdo when he displays any degree of antisocial behavior “out there” in the world.  People look out of the corner of their eyes, once in a while you can see they’re commenting, and they react as if J has committed some horrible faux pas if he doesn’t act like we think people are supposed to act when in the presence of others.  By this I don’t mean scratching his but, picking his nose, chewing with his mouth open, or farting in public (although he has done that, and we’ve told him he should ask for the bathroom because it’s off-putting.)  No, what I mean is when someone talks to him, J doesn’t answer or look at them.  That, my friends, is considered RUDE by the general population…

Let’s cut through the myth of the benevolent, happy-go-lucky disabled person who smiles and is extremely friendly.  That can be true, but it can also be bullshit.  Everyone has their moments, and (if you raised your hand) you KNOW that responding to the social cues in the way people expect can be overwhelming and, at times, even physically painful.

This is my point…really, I’m getting there…

We stand in line at the store, and in front of us are countless people who are on their cellphones.  They are talking, or texting.  They barely acknowledge the cashier.  They answer curtly, abruptly, rudely.  They ignore the “good morning” or the “did you find all you were looking for today?”  The cashier might roll his/her eyes, and chalk it up to “that asshole was rude.”

Cue us getting to the register.  We are NEVER on our phones.  We try to engage with the cashier with greetings, and thank you, and what not.  But heaven forbid the cashier should talk to J and J should not engage with them.  The sourness in the face of the person who says hello to him and doesn’t get a hello back is so obvious!  We try to explain, and we encourage J to respond socially…sometimes it works, others it doesn’t.

When you tell a cashier that your adult child has ASD and is non-verbal, they might reel back the deflation they previously displayed, or they might ignore YOU.  Why?  Because the rudeness, or the lack of social skills are the result of something that cannot be controlled.  If a person is focusing on their iPhone and acting like a self-absorbed ass, well, that iPhone cost a lot of money, and they’re paying for a service.  If a person is acting self-absorbed because Autism is part of their make-up…well, how dare they????

Look…I have nothing against cellphones.  Ok, that’s not true…I think cellphones have caused a greater deterioration of social skills than any other item we carry on ourselves.  Cellphones have destroyed our ability to communicate with each other because we are so focused on that one thing that we block out what surrounds us.  People now text in abbreviations and acronyms.  People no longer know how to sit in a waiting room not looking at what they have in their hand.

Case in point: on Tuesday I went to the doctor.  I was the only person there with a book.  The people who were on their phones suddenly saw something on the TV screen that they could latch on to for conversation, and they were GOOGLING about it while talking to each other.  I suddenly realized that they were looking at me like I was the rudest person in the room because I was not participating in this ritual…because I was reading.  So my absorption in this task was rude because I couldn’t look for a contribution to make to their conversation in an item that has no capabilities for accessing information from the ether.

I will sound like an old and cantankerous old lady, but the majority of kids out there are rude!  They don’t know how to talk to grown-ups; they don’t have the basic skills of courtesy and social interaction that my generation had to learn because our parents expected us to know how to behave.  Those same kids look J up and down like he’s a freak because of the way he acts, but how different is their self-absorbed, phone-obsessed, socially-inept behavior from his?  Oh, wait…it IS different because he is not focusing on himself, and failing to focus on others, in a socially-acceptable way.

I’m sure that if J walked around with earbuds, sunglasses, a cellphone in hand, people would just say “oh, he’s just a product of his generation.”  As it stands, J is just strange and antisocial, and we REALLY should’ve done a better job helping him adapt to society…

AAAAARGH!

Rant over…thank you.  As you were.

The patience of J…

I have to say, my friends, that we are impressed with our son.  He has, somehow, managed to learn how to patiently wait while one or another of his parents runs endless errands.  Yesterday it was my grand tour of doctors’ offices, and J spent the morning with Dada, running errands and getting a treat by having a sit-down breakfast at a diner, and going to the library.  The rest of the morning was rather dull; it included going to pay taxes, and stopping by Dada’s office.  It was almost noon when we arrived at my last appointment.  J waited patiently, and Dada dozed off next to him.

The morning, after a brief eruption involving J’s confusion about when his sitters will be coming over to cook dinner for him, went smoothly.  We understand that J wants to hang out with people closer to him in age, but insisting on seeing them Tuesday when they can come on Wednesday isn’t going to make things easier for anyone.  So we had a brief, and intense, back and forth about this, but we managed to make it through unscathed.  (And my blood pressure was actually quite nice when measured at the first doctor’s office, and positively picture-worthy at the second.)

The rest of the day went by quietly.  Dada returned to work, J relaxed in his TV room, and I fell asleep on the couch until J gently nudged me because his ESP (or his hypersensitive hearing) told him the timer for his afternoon snack had arrived.  The only out-of-the-ordinary activity was his desire to get his band-aids on, but I know that was because a) he’d been upset about the sitters being scheduled for the next night, and b) it had been a long morning.

Today he is happy.  He was up very early yesterday (because he knew we were going to the doctors,) but today he was up a little later and happily went back to bed when I said “we’re just going to have coffee so Dada can go to work.”  Big smile, thumbs up, lights out…  He didn’t emerge until nearly eight.

Of course, after having enough blood drawn to alarm the biggest chicken shit that ever lived (namely me!,) the doctor ran all sorts of tests from every angle possible.  The conclusion?  Ah, my friends…it’s fibromyalgia.  Thank goodness it’s not SLE, or MS, or MG, or RA, or ALS…not that the pain I’m often in isn’t an absolute mess for me, but I can deal with this.

I am not now, nor have I ever been, a “pill” person.  It’s not that I don’t love medical science.  Au contraire, my friends…I trust doctors.  Some doctors, of course, are better than others, and they actually take the time to listen to what is going on, and why you’re concerned.  Other doctors are a little less invested, and it’s harder to communicate with them.  I got lucky this time around, and they are being very exhaustive about everything they’re checking.

For starters, the iron level in my blood is quite alarming.  Or it WAS before I started taking iron supplements twice a day.  When I say “alarming” I mean “the specialist called the clinic so my PCP would see me immediately!”  They’re poking me everywhere.  No stone is being left unturned…no part of my body is being ignored.  The anemia was bad enough that they have to rule out internal bleeding so they’re doing every test imaginable to determine if that’s a problem.  By mid-October we will know if there are any major issues that should be surgically addressed.

In the meantime, we keep going.  I take the iron.  I eat well.  I exercise, and I go about my business.  I’ve been told, quite kindly by a doctor closer to me in age, that I need to be nicer to myself.  I could tell she wasn’t scolding me.  I could tell she knows.  She knows about J.  She told me that fibromyalgia is not uncommon among primary caregivers for elderly parents, sick spouses, disabled children.  She told me that we often put everyone else’s needs ahead of our own, and our bodies seem to hyper-react to this.  There are pills, she said, but you don’t look like a pill person, and I think you want to work on making it better through other means.

She’s right.  This thing (that, thankfully, now has a name) will stick around for a very long time, and I have to learn how to deal with it as best suits our situation rather than try to hide it behind a pill.  Maybe, somewhere down the line, that will change, but for now this is the way it goes.

I will get my exercise when J gets his exercise, and I will take my breaks while J relaxes.  I will stop doing EVERYTHING as quickly as I can, and I will focus on doing what I can when it’s reasonable.  I will take walks, read, do the chores, work with J on the things that J needs to work on, and let J do what he wants to do independently.  Dada and I want to get old.  We are no longer young, but we are not “old” yet…and we want to make sure we transition into being elderly in the best way possible.

Oh, it’s not going to be easy.  I don’t think I’m wired for concerted idleness.  I grew up among women who would sit quietly doing other chores as one of them read the paper out loud.  The household of my childhood was a household of productivity that, to the hustle and bustle of the outside world, looked slow and dull.  I don’t have to move a mountain a day, but I am used to constant activity that yields significant results without creating a whirlwind of noise and chaos.

I will try to be better.  I have promised myself this.  I want to feel better.  I really do.

So…here we go.  Let’s be nicer to ourselves.  We DO do a lot.  And J, who has learned patience, can maybe help me learn that I have to be patient with myself when I cannot do all I would like to…

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.