Our power to control the weather…

It seems like we have a way of tweaking what is about to happen -weather-wise- in our area.  We move somewhere and the first winter we spend there will experience The Worst Winter Scenario in every model.  This winter we have had record-breaking lows, heavy snowfall, and so on and so forth.  We have promised (repeatedly, vehemently, sincerely) that we are NEVER moving again; we won’t move AWAY from here, or WITHIN here…we won’t move…period.  I think the neighbors are circulating a petition to make us swear on our mothers’ graves that this is true.

If you add to this “talent” the ability to tinker with J’s meds when the weather turns nasty, you get a double whammy.  Either tinkering with J’s meds affects the weather, or we sense it’s time to tinker with J’s meds because the weather is about to change.  Not quite the wind-direction effect has on Mary Poppins’s arrival and departure, but a sign of change nonetheless.

Tuesday evening we got all sorts of warnings about the weather.  Wednesday dawned fair and bright, but Dada’s employer – according to the emergency plans in place – told him to stay home.  And so it wasn’t until today at 10 a.m. that Dada left the house to go to work.  Between Tuesday and this morning, the three of us had a lot of togetherness.  A LOT!

J, of course, was having none of it at first, and Dada was instructed to put all his thespian abilities to work on faking the sniffles.  Let’s put it this way: good thing the man has other abilities because acting isn’t his forte.  J was unconvinced and annoyed until it started to snow…profusely.  Of course, the snow went from profuse to abundant rather quickly, and by Thursday morning (another moment of irritation for our son), the blanket of snow was significant.  J accepted his fate and decided to try to enjoy our company as best he could.  He even let us, oh miracle of miracles, watch a movie with him in his TV room.  He even -egads!- enjoyed it…  So we didn’t get to Paddington 2 on Monday (as planned and hoped by J), but we managed to watch the five-dollar DVD of Paddington on Wednesday.   Dada had found the movie when he went to pick up J’s new prescription and he figured (since we had to subject ourselves to a sequel) we might as well watch the first part.

But on to the part of this entry that everyone is wondering about: how goes it with the Prozac?

It goes well, I think.  J complains that he is SICK, but he doesn’t really mean it; we can tell it’s more of a “hey, my stomach is upset” than a “hey, I feel sick.”  After reading all the possible side effects (a hobby of mine that, paired with my overactive imagination, can present a significant problem) an upset stomach seems like the lesser of many evils.

Considering that J is non-verbal and that his ability to communicate is limited to basic  ASL and his Proloquo2Go, how can I be expected to extrapolate whether he is having depressive or suicidal thoughts?  My son is already a walking, living, breathing conundrum as is, and I’m supposed to somehow recognize that he is about to cause severe harm to himself under the influence of this medication?  As you can imagine, my muscles have been in knots for days now.

We often chase shadows, don’t we?  As parents of individuals with a developmental disability, we often look for things that we cannot even recognize.  If the parents of a neuro-typical kid fail at recognizing depression and anxiety, our odds are not good, are they?  I look for signs of a gathering storm, of clouds forming on the horizon, of a veil being drawn in front of J’s eyes.  I listen, my ears as hypersensitive to the cues as his are to every sound, for music that tells me something is changing for the worse.  I sniff the air as if I can somehow sense sadness by the scents it carries.  I observe his choice of clothes, of music, of movies, of snacks.  I listen to the most infinitesimal change in his tone of voice, in his laughter, in the way he shifts on his couch.

Abstract concepts related to feelings, emotions escape J.  He feels everything.  I’ve seen every feeling play across his face, his eyes.  I know my son feels, but I also know that he finds it difficult to process things that require a little more grasp of the abstract.  People die.  J doesn’t understand that; J just sees it as an absence.  The database in his mind retains an image of everyone he’s ever met, but if you tell him someone has died, the image isn’t erased.  Is it ever revisited?  Possibly.  I’ve seen J pensive as he listens to Music we’ve always connected with my father, but 12 years since the last time he saw my father is a long time, and two years since my father died isn’t going to alter J’s mental image of him.  He had not seen my mother in nine years, and her passing away will not change whatever memories he has of her.  The living are another matter entirely; J will see someone after many years, and he will take a moment to connect the current appearance of that person with the one he remembers, and then -we’re pretty sure- he will absorb this and multiply the file in his mind.  J retains the emotions people elicited in his previous experience of them, and he holds on to fears, concerns, antipathies, affections, tenderness.  It is as if, quite simply, he does an age progression on an existing file, and picks up where he left off the previous time.

But how do you read emotional distress of a more complex nature in a person like J?  How do you figure out if sadness means “I don’t want to live?”  How do you determine if a moment of anxiety means “I want this to be over?”  It is hard to react to things we cannot understand fully, and so we spend a great deal of time trying to decipher our son’s silences, giggles, sighs, repetitions, and hand-flapping.

I read lists of side-effects like other people read celebrity gossip.  I ask myself “is this really possible?”  I tell myself “I would be able to recognize this…right?”  I wonder how I could come up with a test that will determine if I am seeing what I think I’m seeing, or if I’m just imagining some horrible scenario.  I question my own judgment when reading my son’s cues.  I read the lists and then I try to figure out what it all means in a world where smoke, mirrors, and alternate ways of communicating are the norm rather than the exception.

So all I can tell you right now is that J seems a little less anxious, a little less repetitive.  I can tell you that J seems to be complaining of a side-effect related upset stomach and that he seeks the reassurance that I recognize his “SICK” and meet it with a legitimate concern and desire to help him.  I can tell you that I sleep with my ears peeled for every sound, and I count the seconds he spends in the bathroom…then I go to make sure that he is OK.  I can tell you that we make every effort to be with him and offer him our company and support throughout the day.  I can tell you that we tell him we love him, and just how much.  I can tell you that we say “it’s ok if you don’t want us around, but know we are here.”

That’s all we can do.  Listen.  Hope.  Pay attention.  Be present.  Hope.  Look out the window at snow and icicles.  Find things to do together.  Know when to step back and give space.

Did I mention hope?

Well, yeah, we hope this works.  And we look at the side-effects list and then at each other and say “not too bad so far, huh?”  And that is the whole truth: not too bad…so far.

Hello, medication…my old friend…

There was a moment of recognition that passed between the spoon, the pixie stix dust, the pill and J.  Like people who haven’t seen each other in a while, some sort of change has ensued, and they meet up randomly in a familiar landscape, hesitation and then enthusiastic welcome happened.

J had heard the word “medication” floating around the doctor’s office the previous afternoon, but -as it happens with other things people mention- it isn’t real until it materializes.  There it was right in front of his eyes: small, a pinkish adobe color, circular and resting on a pillow of blue pixie stix dust.

It didn’t make him sleepy, but it obviously relaxed him.  I don’t know if it was so much the  chemical effect as the familiar routine of something that, he knew and we knew, somehow regulated the “noise” that overwhelms him.  This didn’t stop him from hitting himself during his shower.  That will take a while to go away, of course.  No one here thinks that the pill is the magic solution, or that -like the magic beans in the good ol’ beanstalk fairy tale- it will work overnight.  What was encouraging was the realization that J knows this is meant to do something that he’s been having trouble doing by himself…

He slept better last night than he had in days.  This morning he was happier when he woke up, and stayed in his room relaxing for a while.  His little fairy lights, his fans going full tilt, and him curled up in bed smiling at me as I went in to tell him to get his butt in gear.  The tense muscles, the face locked in a frown, the jaw that looked like a coat hanger were gone…

Yes, he hit himself when I swapped out his bandaids, but what started out as hitting slowly transformed into gentle tapping between one and the next layer of bandaids.

Something of the edge, the sharp and jagged edge of discontent, seems to be ground down.  I don’t think the problem has been solved, or that it has gone away, but some of the veils that are making the view unfocused are starting to sway in a light breeze that may eventually lift them enough to let us all see what’s on the other side.

That’s all we need.  We don’t need a silver bullet; we need a machete to clear a path so we can get to what needs to be done to help J.  Like the Tin Man, the Cowardly Lion and the Scarecrow, we have it in us, but we can’t see it YET.

Today, tomorrow and Friday I intend to play by ear the days and nights of life in this household.  I know there are things that I need to figure out before I figure out others…because this goes in layers.

So that’s what there is for now.

No man is an island, but some are archipelagos…

The morning started with three changes of bandaids in quick succession.  I managed to find a moment to reorder some of our more popular and in-demand models from MFASCO.  I wonder if they think I run a small clinic with very specific wounds being treated.

J was very happy last night.  He was giggly, ticklish, cheerful…apparently that dissolved while he was sleeping.  He woke up stormy, brooding, and easily irritated by the slightly-off crease on the bandaid that sat on top of another bandaid at an infinitesimally-skewed angle.

He has since calmed down.  I am assuming the third time’s the charm, and he settled in but his demeanor didn’t change much.

The med is here, and we will wait until evening (when Dada is home and I have another pair of eyes, ears, hands and legs to help with response) to give him the first dose.  The doctor said we can start with .5mg, but we can also go up to a whole milligram if necessary.  I’m hoping the one pill a day will do the trick.

Right now I feel like I’m dealing with a compartmentalized version of J.  In one compartment I have the J that suddenly seems completely helpless when it comes to tasks he used to complete independently.  In another compartment I have the J that wants things just-so, and will fly off the handle if I fall short of that.  Yet another pocket is holding the J that doesn’t really want me around, but next to it is the one that follows me around the house and asks for hugs.  Another pocket: the happy guy who wants me to play with him.  Another pocket still: the guy who doesn’t want my help, and is impatient if I offer it.  So many pockets…

The questions that tick through our minds at rather high speed: is it his brain?  Is it a mental health issue?  How do we reduce the stress without becoming the non-denominational interpretation of cloistered nuns?  Will we ever watch another episode of Midsomer Murders without interruption?  What is easier: buying more coffee, or trying to get more sleep?  If there’s something wrong with J’s brain, how do they deal with that?  Oh, my god!  What if there’s something wrong, PHYSICALLY WRONG, with J’s brain?  What’s going to happen to our son?  How do we help?  What if it’s the hitting?  What if the hitting is because of something THAT IS WRONG WITH HIS BRAIN?  They’re going to have to sedate him for a CAT Scan or an MRI…how nervous is he going to be?  Will he be totally freaked out?  Will he trust us when we say it’s the thing that has to be done?  Is he further regressed than we had thought?  Is he scared and doesn’t know how to tell us?  What if he needs to be hospitalized?  How is he going to feel about that?

You might picture us freaking out.  Go ahead.  Picture us.  That’s what we’re doing.  We shouldn’t, maybe, but we do…

Randomly, one of us parents will turn to the other and say, “it’s just us, isn’t it?  We’re it?  He’s got no one else?  WE have no one else?”  The other parent says: yes, it is…yes, we are…no, he doesn’t…no, we don’t.

It is what it is, my friends.  The only thing that matters right now is that we figure out what is causing all this grief for our son.  We only want him to be well.  We want J back.  We know that he’s in there somewhere, but he’s having trouble coming to the surface.  He’s murky and can’t follow the light that says “this way up.”  We need to deal with this so we can deal with everything else.

You don’t mind me telling  you this, do you?  I really hope you don’t because, hand over heart, actual physical humans don’t listen.  Maybe you blanked out while you were reading this, and that’s ok.  Maybe you’re nodding and going “whatever, lady…blah blah blah, life is hard…blah, blah, blah…rallying cry of parenthood.”  At least I can’t see the look on your face, and that goes a long way to make me think you don’t think I’m a whiny person.

I’ve gone off-topic again…meds, yes.  We’re back to meds, and we know (because we did this for a while) that there are tentacles on that octopus.  So I am going to work on daily schedules…better ones than the loosey-goosey ones I haven’t managed to completely refocus yet.  (It’s been a weird few days, thank you.)  I am also going to re-tool our menus. Since weight gain is par for the course with Risperdal, we are going to tighten up that department, too.  All Halloween candy has been ejected from the house, and J has had six Skittles last night, and six Skittles as his dessert.  I am extremely thankful that he accepts this as “a serving” and considers his multi-vitamin part of dessert…because it’s gummy.

We know about muscle cramps, and we have all sorts of things to help in that area.  J likes his massage rollers I got him from Gaiam.  He also has a  vibrating pillow (don’t ask) that he loves, and a fuzzy pillow I found for him at Pier 1.  He has a tent, and his ball pit.  He has all sorts of things he can use to help him, and he has us…we’re here.  We’re not the most talented, skilled, capable people ever, but we try…we try really hard.

As of this evening we will wade, once more, into the waters of medication.  We don’t want him sedated, and we don’t want him altered in any essential way.  This is not about making our lives easier for the sake of not wanting to do the work.  We want J to not feel overwhelmed beyond what is manageable for him.

Not enough hours in the day?  More coffee beans, then…



Gimme an S! Gimme an I! Gimme a B! What does it spell???? Crappy weekend, that’s what…

Many years ago, I don’t remember when or where, I read an essay about the early weeks of raising a baby.  The author, whose name I don’t recall, mentioned that at some point he/she started crying whenever he/she sang Old Man River and got to the Ah, gits weary
An’ sick of tryin’ part while trying to get baby to sleep…

At the time I thought this was very funny, but I didn’t have kids yet and I didn’t realize how true it can be.  It has long been a running joke, when the kids were sick or restless, that I’d sing that line and Dada would snicker.  We now sing that line together, and it doesn’t sound quite as amusing as it used to a few years ago.

We are going to the psychiatrist this afternoon.  We have reached a point where we are baffled, confused, totally stumped, and pretty much sick and tired of the status quo.  It’s not the lack of sleep (although that doesn’t help,) or the mental exhaustion (which has led us to have mostly incomplete-sentence conversations during which we sound like Jeff Spicoli without the pot…or the pizza.)  We do a lot of “yeah…I know…right?  That’s…yeah…you know…what I’m saying is…  Totally…(sound of explosion made with mouth while hands signal head exploding.)”

It’s not just the Cheech and Chong quality of the conversations that worries us.  We are worried about how obtuse this situation is, and how it’s affecting J.  When you have to fashion an “ice-pack holding” beanie, you know that SIB has become an issue.  When J wears it with panache, you basically know you’re f*cked.

At this point we are pretty sure that there is an underlying cause that WE cannot get at because WE are not healthcare professionals.  We read scholarly papers, and we can say “I see this, this, this, and that,” but it is not OUR place to diagnose him with anything, or to devise a plan without consulting someone who can tell us if he needs something more.  We are not fans of medicating J, especially after working hard to get him off his meds last year, but if he NEEDS medication because there is something that needs dealing with and that’s the only way to clear the functional emotional cobwebs, we do what has to be done.

It was a grueling weekend.  J brooded a lot.  J was stormy…not in a “holy smokes!  We’re all gonna DIE!!!!” sort of way, but in a low rumble of thunder and ominous clouds that make you wonder if you should go out or stay in.  We stayed in…

One of the most difficult sides of this situation is that everyone knows individuals with Autism are prone to SIB.  J has a history, and we accept that not every incident of SIB is the end-all be-all, but…when we tell the doctor that this has been consistent and escalating over the past few weeks, and that there are certain compulsive behaviors that are increasing…

When you wake up at six a.m. on a Sunday because you hear pounding, you go into your son’s room and he’s hitting himself and visibly shaking..that’s not normal.  Or, let me say it another way, no one should expect you to take it as normal.  A while back I spoke to the doctor about my concerns regarding the possibility of J having bipolar disorder like my mother.  He told me we’d have to wait and see.  I asked what for…he didn’t really have an answer.

I don’t expect a blood test to tell me if J’s mental health has become more fragile.  I am not stupid.  I know the whole process is more convoluted than that, and that a great deal is observation and piecing the puzzle together.  What bothers us, and baffles us in those Cheech and Chong-like but completely cannabis-free moments, is that no one seems to trust our judgment.  When we call or e-mail and say “hey, this is getting out of hand,” we shouldn’t simply be dismissed with a “we’ll have to wait and see.”

What has to happen?  The cops have to be called?  Property has to be damaged?  Someone has to get hurt…worse than J has hurt himself?  Someone has to die?  Someone has to be arrested?  I don’t understand what the DefCon thing is for this…

I know that we can deal with this, but not in this way.  Does that make sense?  We have had to take a long hard look at a lot of factors: our age, our physical condition, the stress level we live under.  And, when it comes to stress, that includes J; J is under A LOT of stress, and since we don’t know the source, we cannot really deal with its cause.

Yesterday was hard.  Yesterday there was crying, screaming into pillows, sobbing uncontrollably when J wasn’t around and couldn’t hear me.  Yesterday was long and grueling, and scary.  And it wasn’t made any easier by Dada’s job.  Just as we were heading out to take J on a short drive to be outside the house for a while, work called and that was canceled.

And by the end of the day we realized that we have bought into the illusion that the income makes up for the rest.  It doesn’t.  The benefits are awesome and J is covered for all his dental and medical stuff (except psychiatric services because the State of West Virginia doesn’t cover that for people with Autism, and thank you for that.)  But…we don’t really enjoy any of the other stuff that the salary allows us to have.  We are not really taking care of each other as we should.  We are putting patches here and there, but the raft is still full of holes.

Our marriage is good.  We love each other.  We want to grow old(er) together, but we know something HAS to give, and we have found WHAT it is…we came up with a plan.  It’s not a perfect plan, but it puts J and us as a family front and center.

And today we go to the psychiatrist, and we see if we can figure out the hard part…


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.



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…



J’s parents

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….



This just in…


Let us, for the time being, put aside the very real problem we have (in America) with people being shot by the police, and the police being shot by people.  Either way, it is a problem.  Police officers have a job to do, and it is a dangerous job; in the exercise of their obligations, they carry weapons, and -regrettably- there have been several instances of preventable deaths of innocent citizens at the hand of police officers discharging those weapons.  People have reacted to this viscerally.  I don’t just mean by protesting -which we are entitled to do because the Constitution guarantees us the freedom to do so- but by killing and wounding police officers who have been exercising their duties during public protests, or simply while doing their jobs elsewhere.

I am not going to address that aspect of the gun violence that permeates our lives because I feel that this is not the place to do it, but I will address an issue that -as the parent of an adult individual who is firmly placed in the more severe end of the Autism Spectrum- gives me daily pause.  I want to address the issue of training.

Now, if you read this article you will see that the authorities were responding to a 9-1-1 call that stated there was a man in the street threatening to kill himself with a gun.  The young man in question is a 23 year-old in the Autism Spectrum who had wandered off from his group home.  He had a toy truck with him.  A white toy truck.  The young man, obviously, looks like a 23 year-old; he is burly, tall, dressed in the usual jeans and t-shirt outfit that many men his age select in the morning.  He has facial hair, and he looks like a dude…just a regular dude.  He is sitting in the middle of the street, and appears to be paying attention (but not particularly understanding) what is happening around him.  His stance is not aggressive or apprehensive; he doesn’t seem anxious.  He is not crying, yelling, expressing distress in any way.  He is, basically, sitting there with his toy truck in his hand, and we assume that his behavior therapist has caught his attention and was trying to negotiate with him up until the moment the police showed up.

I have been there.  I am sure many of you have been there, too.  Our child (whether young or adult) is determined to do one thing, not really resisting, and we are trying to gently but firmly persuade them that it’s time to do something else.  The person we are trying to communicate with is calm, but won’t budge.  Sometimes they react loudly, and wave their arms to keep us at a distance.  We are trying (sometimes when internally on the brink of tears) to keep calm and do what needs to be done.  Sometimes we are doing this while people stare and judge, and comment amongst them.  If the circumstances allow it, and the child (or adult) is not at risk, we take our time so as not to make the situation worse.  We are thinking of the child (adult,) and we are trying to comply with the demands of the place and population that surround us.  Have I picked J up (when he was light enough for me to do so,) and dragged him away from a dangerous situation?   You bet your sweet ass I have.

I also have patiently sat and waited until I could persuade J to move when it was clear that forcing him would only cause him, me and the rest of the planet severe distress.  The internal dialogue that takes place at those moments can be emotionally draining.

When I look at my son I see a 21 year-old man who weighs over 230 pounds, is over 5’9″ tall, has a mustache and a goatee, has powerful legs and arms.  I think he is handsome, and imposing.  I think he has a lovely smile.  I can tell when he’s about to do something mischievous.  I know he has ASD, and I see it in the way he moves and walks, scans the view while flapping his hands or waving his arms.  He dresses like an average guy; shorts, t-shirts, a hat…

I know the world sees a big dude who can crush them, and he has a weird attitude.  I know this because the world doesn’t stop to think maybe there is something extraordinary about my son.  People have told me they thought he was my husband, boyfriend, brother, or gay friend.  (Yes, someone thought the way he walks indicates that J could be my gay BFF…which I found interesting.  Not insulting, just interesting!)  There are several reactions that come with meeting J: awkward silence, hyperbolic enthusiasm, brief acknowledgement followed by a change of subject, and genuine acknowledgement followed by discreet questions about him.  The last category is not as frequent as it should be, but one hopes that this will change over time.

In spite of our best intentions (and, trust me, we’re just brimming with those,) J can be disruptive and/or difficult to manage.  Sometimes it’s not the right day to walk on a wet surface (the wet surface being the street or sidewalk;) at times it’s the direction of the wind.  There are days when dogs are a bigger problem than others, and -of course- there are flying insects, birds, and that pesky problem known as airborne seed dispersal.  Yeah.  That can make a good day not so good.  I’ve had to escort J home from the pool because a dragonfly touched the surface of the water…and he started screaming.  That J’s data bank includes the dragonflies in Mickey and the Beanstalk…well….


The point is that I KNOW what I’m dealing with when I’m dealing with J.  I know what strategies to use when he needs refocusing, calming, disciplining.  I know when a situation is under control, and when it isn’t.  I know when to ask for help, but I don’t always know who to ask for help because people are either distrusting, fearing, commenting amongst themselves.  I worry that someone is going to look from a distance, make assumptions, and I will not have the ability (or opportunity) to explain to authorities that become involved what it is that is truly happening.

I have wanted, many times, to call the local police department and ask how they train their officers to interact with individuals with ASD.  I wouldn’t even begin to know how to start. It’s not that I don’t think the police would listen, but I don’t know if they would consider this being approached by an overcautious, busybody private citizen.  I don’t know if there would be eye-rolling taking place.  Some people, regrettably, believe that this would fall under “special treatment,” and think we’re angling for something because we think our kids are “better” than the average member of the community.

All parents worry about their kids.  All parents have fears and concerns.  All parents have something that they mull over from time to time, and then discuss with their kids.  This is true of parents that belong to minorities, parents who live in high-crime areas, parents who are not home when their kids get out of school, parents whose children walk home from school.  It is not less true of parents of adults with ASD.

During the day, school age individuals with ASD are in a more-or-less controlled environment.  When we take our children out shopping, or dining, or walking, or to the doctor, or to the bank the environment is less controlled; we are the ones who are the first intervenors if an unexpected situation arises.  When the school organizes an outing, the people who work with our children assume the role of first intervenors.  I don’t know of a single parent who wishes ill for anyone who works with their child.  If the aides, teachers, therapists, drivers cannot count on being listened to when they explain a situation, what would that mean for the children themselves?

I understand that our social mores are stilted and broken.  I understand that law enforcement officers have a right to be concerned about their safety in the current emotionally-charged social climate.  I understand that private citizens have a right to be scared.  Fear is the overwhelming factor, and it is -more often than not- propelled and supported by ignorance.  Whatever reasons have led us to where we are, my friends, the place where we’re at is bad.

I don’t know how this should be addressed, or if it can be fixed.  I just know that I am feeling a little more trepidation when I step out there.  People are scared enough to confuse a toy truck with a gun so imagine what they would “see” if J is wearing his wrist brace because “it’s a bad day?”



The downside of being beloved…

Would you like to discuss my ability to wear shoes for the past five days?  It is not that my feet are swollen, or that they hurt.  It is not that my shoes are uncomfortable.  My ability to wear shoes is being hampered by my son.  You know him.  He is J.  The kid who now realizes he loves me and cannot stand the thought of me leaving the house?  The one who has been taking my shoes away because they might propel me out the door much like Dorothy’s ruby slippers eventually led her home after a bit of heel-clicking wishful thinking?

I am not complaining.  I am merely pointing out that being in J’s radar has its not-so-cool moments.  We have previously discussed his ability to go all Droopy Dog on me.hqdefault

We have gone a step further.  We are now a weird combination of Buddy the Elf and Rhino from Bolt.


Friday evening J’s helper came over so Dada and I could go to the grocery store.  We were back in less than an hour.  On Saturday we had dinner plans so we had made the arrangement with J’s helper to come over with her husband and, as they usually do, cook dinner for them and J while we went to a restaurant that we’ve always wanted to try.  This place is closing for good tomorrow night so we figured we’d sneak in one meal (especially since all their wine has a 30% discount.)  After breakfast, we arranged J’s board and put the corresponding picture for our outing and his helper.

J was outraged.  J was not having it.  J removed the PECS, and I put them back.  He removed them again, and I put them back.  Once more…and once more again.  I waited until ten-thirty to call her and re-schedule for Tuesday.  J was satisfied by this…

We ran our Saturday errands, and when we got home J unceremoniously removed my shoes and continued to do so the rest of the weekend.  I explained I can’t go outside to water the garden barefoot.  I was handed my shoes, sent out to the garden, observed while doing my chore, and -no sooner had I stepped foot indoors- divested of my shoes once more.

I tried being casual about footwear.  OH, here I am, sitting at my desk wearing my garden slip-ons.

Like Obi-Wan Kenobi, J can feel a disturbance in the Force quite easily.  Propelled by his instinctive knowledge of the sound that shoes make as they cover skin, he came out of the TV room and removed the offending items.  Or he came to the garage, guided by his inner voice (which, I’m sure, sounds a lot like Sir Alec Guinness, and not necessarily in Star Wars…maybe more like The Bridge on the River Kwai?) and pointed to my shod feet.  This dance has gone on consistently for the past few days…

Yesterday morning J hijacked my closet.  Not in a Stanley-Tucci-in-TheDevilWearsPrada way.  J hijacked my closet so he could hide all the clothes I might wear to go out.  Anything I’ve worn out of the house (and not just in the garden or going to the mailbox, mind you) had been pushed back to the deepest recesses of the the closet; all else had been buried under layers of clothes that are at-home garments.   We had it out.  I put things back.  He put them away.  I sent him out of the room.  He sneaked back in.  I raised my voice.  He flicked his chin.

We were exhausted by the time we were done, and I had to lock the bedroom door and listen to ten minutes of J pacing back and forth while trying to determine if it was worth it to get a butter knife to unlock the door.

Eventually he age up, and we negotiated a peace pact.  He got a very small pizza for lunch, and I found my shorts.  When he was pleasantly relaxed after his turn on the elliptical machine (he skipped the intro and the intermission and entr’acte, but he watched the rest of The Sound of Music while working out,) I introduced the prospect of Dada and I going to dinner.  The crust, cheese and pepperoni inspired some benevolence and we managed to go out to dinner.

This is good.  It cost an arm and a leg to pay the helper, leave ingredients for a nice dinner for them and us going out to dinner by ourselves, but it was totally worth it…

Of course, I had to pay with relinquishing my alarm clock to the deepest, darkest depths of the back of the bottom drawer of my bedside table, but it’s a small price to pay for only getting the once-over and being found satisfactory in my at-home outfit of yoga pants, t-shirt (with holes in it…because that makes it look more sincerely at-home-y,) and no shoes.

Yes, I’m pandering.  Yes, I know that’s bad.  Yes, I’ll work on being more assertive.  Yes, I’m half-lying right now…  No, I don’t mind admitting that.

People think J’s behavior is cute.  Dada relates these experiences to his co-workers and he invariably gets and “aw!!!  That’s sweet!  He loves you!!!!”  Yeah, he loves us.  Yeah, he seems to have realized that he wants to have us around.  But…

J IS 21 years old, and he IS tall and big and heavy.  This is not a cutely obsessive waif-like figure we’re talking about.  He is not dangerous, but being bossed around by a dude who has overcome his Hulk tendencies while remaining entirely capable of performing a haka to convince me that I want to put my alarm clock away…well, it can be overwhelming.  I don’t give in because I’m afraid he will hurt me.  I give in because not doing so can be tremendously exhausting emotionally and physically.

For the time being J is my bestest friend, and he wants to be with me always.  I know this will change.  I know he will start giving me the emotional Heisman soon enough.  I don’t want this to fray our relationship so I will accept that, for the time being, my shoes are strictly on a “need” rather than “want” basis.

It’s the downside of popularity.  I get it.  Celebrities love the attention until they hate the attention.  I am currently wishing for some mild rejection, but it’s not my decision to make…as long as my entire closet doesn’t disappear…


The not-so-cute or uplifting list…

From time to time you see online one of those “what parents of children in the Spectrum want you to know.”  I’ve read them all.  I agree with some of the stuff on there; we want you to know our children are not unintelligent, unaware of what is being said about them, blah, blah, blah.  That is a blah, blah, blah from a place of love and respect.  I don’t want you to think I don’t appreciate what people are trying to do with these lists and essays.

There’s stuff I’d like people to know about J, he of the firm placement in the Autism Spectrum, that doesn’t quite “fit” the usual pattern of these lists.

  1.  J is a pain in the ass.  I love him, but this is true.  When J wants what he wants, J is a total hard-ass about it, and it’s only through the lavish dispensing of patience and firm negotiation that we can get him to not be a total asshole about things he wants NOW.
  2. When J doesn’t like you, he will NEVER like you.  He will, at best, tolerate your presence, but he will not last very long, and he will make sure you KNOW he doesn’t like you.
  3. We will say “oh, it’s only he gets used to you.”  We will be lying.
  4. J’s concept of privacy does not extend to other people.  He WILL walk into the bathroom while you’re on the toilet, and he will rush you to finish.
  5. Yeah, he knows how to unlock the dinky indoor locks with a butter knife. He will also use his thumbnail.
  6. While incapable of reading a calendar or understanding the concept of time, J will know when it’s not a day for Dada to be home.  If we look too relaxed while having our coffee and watching Reading Rainbow (don’t judge us…the news was too stressful so we got rid of cable and LeVar Burton makes us happy,) J will get irritated, march upstairs, pick an outfit for Dada to wear to work, and then unceremoniously hand him the can of shaving foam.  This is, in J’s world, the equivalent of handing the Black Spot, or a fish wrapped in newspaper.  It’s an announcement.  It’s an ultimatum.
  7. J’s sartorial sense is either very good, or he has memorized Dada’s work combos over the years.  He never picks anything that clashes or looks like it’s meant to be worn for an occasion other than work.
  8. If J doesn’t want to go out, J will not go out.  You can tempt him with anything you can imagine, but he will not budge.  Even if you’ve made plans and are really excited about them, you will find yourself with egg on your face…the kid will not budge.  He’s not interested in making US happy; he just wants to be happy.  If that means he gets to screw us out of an outing, so be it.
  9. J’s single-mindedness can be truly irritating.  This is made worse by the fact that, at times, he refuses to communicate when he’s obsessing about something.
  10. There are moments when being J’s parent is truly exhausting, and we yell at each other because we cannot yell at him.
  11. Some of the quirks can really drive us nuts.  The flicking of the fingers.  The tapping of the head.  The band-aids.  The turning the lights on and off three times, disorienting us old people who tend to suffer from vertigo…
  12. J cannot abide seeing the cell phone charging.  It has to be putawayputawayputawaynownownownow…  At least he doesn’t do it while out and about to other people…

The truth, and I know this sounds horrible, is that he pisses us off once in a while.  Like him, we have our good and bad days, and there are times when we are just not in the mood to do what has to be done.  We still have to do it.  We do it while gritting our teeth.  We do it while cussing under our breaths.  J knows when we’re angry.  I think it’s fair that he knows, even if he cannot always understand it.  I think that J deserves to know that he is as much of a human as we are, and that these difficult interactions are part and parcel of the whole gig.

J is persnickety.  J is demanding.  J is obsessive compulsive, and annoying.  He wants attention, and then he doesn’t.  He wants affection, and then he doesn’t.  He is careless with us; he loses his patience with us (sometimes very quickly and for no apparent reason,) and he hurts our feelings.  He always thinks he’s right, until he realizes he’s been wrong, and then he quickly forgets it.

We don’t know, for a fact, that J loves us.  That’s the nastiest bit of all.  We know he is used to us; we know he feels close to us.  We know that J recognizes us, and he feels bad when we’re upset or sad because of him.  We know he loves to hug us, and he likes our fish kisses and displays of affection.  We know that he trusts us, and that he likes -for the most part- having us around.  Does that mean he loves us?  I could go into the whole Fiddler on the Roof/Tevye and Golde thing and sing “Do You Love Me?”  I could argue that love is different things to different people, and that to J it is something along the lines of what we see from him every day.

I would like to tell you that it doesn’t crush us to think that we are simply constants, and if we’re gone we can be replaced.  We like to think that, like us, J spares a few moments each day to be thankful for the chance to be a family, or that he misses us and is glad when we reappear in the scene after being gone a while.  The truth, my friends, is that we don’t know…

What I want people to know, for the most part, is that -yes- J fits into all those lists that say he’s special, and has abilities, and sees the world differently…blah, blah, blah.  I also want people to know, nay, UNDERSTAND that this shit isn’t easy, and that we’re human and fallible and short-tempered at times when it’s most inconvenient because it doesn’t help matters.

Yes, J is awesome, and lovable.  But he’s also this complex human being who -d-uh!- has huge issues trying to interact with us.  Even WE think “shit, does he have to be so…argh!…all the time!”  It’s not pleasant sitting on the toilet in the dark because he wants the lights out NOW.  It’s not pleasant sitting on the toilet with him walking in and demanding action NOW.  It’s not pleasant that he feels entitled to invade our privacy, take up our space, rule our life, alter the course of plans, days, you name it.

It is what it is.  We love the kid, but there are moments when we hate this situation.  In an alternate reality, J would be living by himself, not wanting to deal with parents who sit on toilets, or make plans that HAVE to include him. It’s not that we didn’t raise him right…it’s just that it is what it is, and no amount of training completely alters the “what it is” of it…seriously.  At most we’ve managed to get him to not open the bathroom door AS abruptly.  Or we’ve managed to get him to wait (after yelling “I’M ON THE TOILET” so loudly that the neighbors know what we’re doing) outside the door, only to open it and find him RIGHT THERE…FACE TO FACE WITH US…

We love, respect, admire our son, but he can definitely be a hugely self-centered jerk sometimes…  SO, yeah, he can be cute and charming, and funny, and entertaining.  He can be uplifting and inspiring, and awesome and warm-ish.  He can be affectionate (it’s usually because he wants something…how like every other kid is that?,) and he will hug us (sometimes a little too hard,) but…

it is what it is.  Not a very uplifting list, but…sincere?  Honest?  Slings and arrows come my way…