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….



The not-so-lost art of negotiation…

Today we had a few errands to run.  Well, technically, we had three errands at two different places, but this still required negotiating with J.  If you have been reading about J for a while, you know we’ve come a long way in this area.  We’ve progressed from adamance to hesitation to outright quid pro quo to two-way-street meet-in-the-middle negotiation.  It is very comforting to not be dealing with someone who will cling to a doorframe with nails and teeth.

Of course, this has not been an easy thing to achieve.  J does know when he wants to be open to something, and when he is simply and irrevocably against it.  There was a time when I felt that winning the argument was necessary, but now I’m more concerned on trying to learn how to get to where we want to be.  This doesn’t necessarily mean that I am willing to cave in, but it also doesn’t mean that I won’t.

Every single day we negotiate something.  Some things are minor (no, you’re not having your pepperoni and cheese snack today; you can have it tomorrow,) and some things are major (no, I am NOT going to walk around without my glasses just because you don’t want me to see what you did in the laundry room!)  We negotiate anyway.  We negotiate whether we’re going to check the mail at 11:00, or if we want to wait until 4.  We negotiate whether we’re running with the Wii, or using the elliptical.  We negotiate whether we are going to take a bath at 3:30, or if we’re doing it before bedtime.  Timers are negotiated.  Snacks are negotiated.  Bedtimes are negotiated.  We have figured out that if J wants something he will be willing to find a way to let us know, and we will find a way to get him to wait for it.

For the most part it works.  J has attempted to throw a tantrum, but the close proximity in which we function these days has taught him that I know we can’t just succumb to hyperbolic behavior.  Last Thursday J was spectacularly angry, threw a significant tantrum, and then apologized and did his Wii run while arm-in-arm with me.  All because I said “I will accept that you’re pissed off, but I will not accept that you’re being an asshole about it.”  The whole incident lasted ten minutes; the apology was heartfelt and extended for an hour.  We were friends for the rest of the weekend.

Yesterday evening, after J made it clear that it was entirely too hot to leave the house all day, I explained that I had a doctor’s appointment today, and that he and Dada would be going to the DMV to get his ID done.   He looked anxious, but he trusted that I was telling him the truth.  We had to repeat ourselves twenty times over before bedtime, and twenty times over on the ride between here and the hospital (2.5 miles away,) but J accepted the scheduled activities.  I went into my appointment and, for the very first time, sent J off to do something long, boring, and public with just Dada.

You know how DMVs are on a Monday morning.  The line was long, Dada said.  The wait was boring, Dada said.  J was only upset when they took his old ID away from him, but the clerk allowed him to keep it after invalidating it.  An hour later (yes, I know…a minor miracle) they were on their way to meet me, and we headed out to J’s destination of choice: Target.

This is what I have learned about my son over the past two months: he is good company, but he likes his space and time to be under his control.  He is kind and charming.  He is funny and helpful.  He likes being around me, but he also likes being by himself.  The biggest lesson, however, has been that I’m perfectly OK with that.

We have good days.  We have days that, in hindsight, could have been better.  We have days that are definite scrap-pile material.  We try.  Today we succeeded.  In small increments, but we succeeded.  There’s not much else we can aspire to on a day-to-day basis.

We’re fine with that.




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?”



Truth is the daughter of time…

I have stopped paying attention to the current presidential election cycle in the United States.  You can say “aw, you’re what’s wrong with this country,” but the truth is that I think there’s so much wrong with this whole process that it’s best if I just step aside and let history take its course.

I grew up in a very political household.  My great-aunts were flag-waving, foot-stomping, phone call-making members of the pro-Statehood party in Puerto Rico.  That environment was fervent, involved, loyal to a fault, and yet…it never lacked civility.  Sure, they would think you were an idiot if you didn’t agree with their views, but they didn’t think that tit-for-tat should be taken beyond a few opening salvos that stopped the moment it got too heated.

This is not to say that blood pressure didn’t rise, or that they didn’t have choice words when it came to yelling at the TV or the newspaper.  They would get angry.  Seriously angry.  They would be sprung to action by what they thought required their immediate rattling of cages filled with dormant voters who were not invested enough in the process.  They never, however, resorted to vileness, and they never relinquished their innate respect for others.

I was raised by three elderly, conservative, religious, traditional women in what many consider to be a rather backwards Hispanic society.  The funny thing about that is that it was those same women who encouraged me to read, question, doubt, research, ask, discuss, challenge.  Yes, even them.  While their political views were very specific, they would try to persuade them about their soundness rather than force me to agree with them.  This from women born within the first two decades of 20th century.

What would they have made of the circular arguments, mendacity, subterfuge, vitriol, disenchantment we face these days?  I have often asked myself this as I read the news (from every media outlet possible, people, because I REALLY read,) and see what passes for dialogue these days.  Discourse is lost.  And this goes for both sides.  Once you say something that people disagree with, all is lost and it’s over.  Insults are, sad to say, frequently are the response you will get.

We seem to have lost the ability to disagree civilly.  We seem to have lost the ability to listen.  We seem to have lost the ability to give our opinion without trying to denigrate each other.

It is bad enough that I read the news online.  If you read any comments under any news item, you will see the world descending into the worst sort of anger: anonymous, unfiltered anger.  We relinquished cable TV so we wouldn’t be compelled to listen to the news (24/7…relentlessly…minutely detailed…,) and yet we cannot turn away from world and national events.  Being uninformed and remaining quiet is almost as bad as being misinformed and yapping away uncontrollably.  We remain committed to being informed, but we can no longer be invested in the way politics have become, more than ever before, entertainment.

I understand feeling strongly about one’s beliefs.  I understand passionately defending one’s opinion.  I understand feeling distaste for one or another candidate’s views and actions, but I don’t understand why anger and hatred seem to be the primary forces at work here.  People can no longer say “well, I don’t trust him/her because it seems to me, from what I’ve read/witnessed/researched/heard that his/her views on this/that/the other subject are not the soundest.”  Any opinion you give will get you a mighty tongue-lashing from just about anyone.

I really don’t know what direction we’re choosing for the next four years.  I really don’t know how much of the decision will be made based on hate for one candidate rather than love for another.  I don’t know if we’re going with the “lesser of two evils” approach, or the him/her rather than her/him approach.  All I know is that, for the first time in all my fifty-plus years, I see our society behaving with a lot less civility and consideration for others.

Look, I really am not smarter than anyone else.  I do read a lot.  I do try to look at every situation from different angles.  With J as a member of my family, I have to accept that there are many shades of gray in every direction…this is not a line…it’s more of an orb…  I am concerned at how strict some people’s interpretation of things can be; I am concerned that most people in America have NEVER read any of the documents on which our nation was founded.  People don’t understand that history is a process, and that many things have changed over time as a result of events that created concerns, fears, shifts in perspective, etc.  I’m not just saying that because I’m an elitist.  I’m saying it because I have a degree in History, and am an avid reader.  I didn’t learn about Alexander Hamilton NOW.  Yeah, nerd that I am, I’ve read The Federalist Papers.  (Although you have to admit Hamilton is a pretty freakin’ kick-ass way of getting young people to realize that our Founding Fathers were, at one point, kids just like us, and that our history is not as dead a thing as people like to think…  Thank you, Lin-Manuel Miranda…)

What gives me pause about this election cycle is that we are accepting cardboard cutouts in place of actual people.  We are repeating without researching.  We are believing without confirming.  We are agreeing without knowing what it is we’re agreeing to, and that is pretty freakin’ scary.

Truth is the daughter of time, not of authority.  Francis Bacon said that.  He had a point.  At the end of this whole election period, whatever happens, the government we get will not be like the picture that has been painted for us in the heat of campaigning.  The real world doesn’t work that way.  Life is a lot more complex, and -newsflash!- we will be going through it together whether we agree or disagree.  I may not agree with others, but I will do my best to not be part of the screaming and foot-stomping.

My great-aunts would agree: it’s not worth having a stroke, and it’s not going to help us in the end.  Wednesday, November 9th, we all have to get up and keep going, and the dynamics that come into play when you wake up next to a stranger after an ill-advised sexual encounter shouldn’t be what we aim for.  We’re all in it together.  Whether we like it, or not.




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…


Lightning storms are exhausting…

My father was an expert on electricity.  I don’t mean that with even the slightest shred of sarcasm.  My father was born, raised and educated in Argentina, and he started working at a young age so, once he stopped his formal education, he continued it through dedicated, enthusiastic reading.  If my father, even as he got older, didn’t know about something you mentioned, he would go seeking information about it.  Phone calls would randomly be received asking if you knew about this, that, the other thing.  If you knew, he would go AH!, and then hang up and try to find out more so he could be better informed than you.  He was competitive, but in a good way…except, of course, when lightning struck.

My parents lived in abodes made of concrete when I was growing up.  I lived with my great-grandfather and my great-aunts in a house made of wood.  Whenever I visited my parents and I had the misfortune of hearing thunder, I knew what was coming.


While other parents issued general warnings about the dangers of lightning, my father would launch into a very detailed explanation of why we couldn’t take a shower, go outside, stand in front of the window watching the storm, touch lamps that were flickering, answer the phone…

These, of course, were the days when phone and power lines were not buried, except in bigger cities.  Our family didn’t pass lightning storms watching TV, even if the power had not failed.  We also didn’t walk around barefoot.  Or touch appliances.  Or cookie sheets.

I know there’s some science in all his warnings.  I also know that Snopes and Mythbusters have debunked some of it.  Because I grew up in a place where tropical depressions, tropical storms and hurricanes are a yearly occurrence (sometimes in bunches rather than singles,) storm preparedness is a thing for me.  Weather awareness is something I preach.  If anyone in my household hesitates to respond according to plan, I turn, yes, into my dad.

The one bastion that will not give an inch is J.  It turns out, ladies and gentlemen, that J’s TV room is THE safe room in the house.  It’s in the basement, it has concrete slab on three sides, no window, and is in the center-back of the structure.  It also has a closet that, should things get really testy, holds all three of us safely.  There is bottled water there.  There are pillows, flashlights, and things to entertain ourselves with should we have to stay in for a significant while.  There is, for crying out loud, a ball pit.  I can still, while the power is on, get a good wi-fi signal to follow the weather reports.

J is insulted that we would, how dare we, pick his bat cave for our safe room.  This was in evidence yesterday when we had a Tornado Warning.  We calmly, because that’s the way to do it, strode into J’s TV room and planted ourselves in the middle of the room.  J, who was sorting his movies into piles (a classification system that makes sense only to him,) turned and looked at us as if we’d just burst in with flaming torches in our hands.



“We are just going to sit here unobtrusively,” we said, and Dada grabbed a storybook while I checked the extent of the warning on the other iPad.  “It expires in fifteen minutes,” I announced; “we’ll be out of your hair before you know it!”  I looked at J and he was not particularly thrilled by the idea.  The next fifteen minutes were peppered (liberally) with the word BYE, and we basically ignored his desire to kick us out of the safest place in the house.

Trying to explain a tornado warning to a person who doesn’t understand weather except as something expressed by music is not easy.  Vivaldi?  Yeah, yeah…it’s a little more complex than that.  Karen Carpenter was not far off the mark when she sang that “rainy days and Mondays” always made her sad.  The problem is that we have come to, as a culture, relate certain atmospheric events with certain emotions.  Eeyore is followed around by a raincloud.  A rainbow crosses the sky when someone is happy.  The sun shines and birds chirp happily when the moment is joyous.  Lovers run across across sunlit flower fields.  The wind blows fiercely and the rain batters the windows when someone is in searing pain.  I tried to figure out if Twister was a good way of introducing J to the concept of why we need to go into that room, but then I realized that the movie ends with a sunflower field where a tornado has cut a swath, but all else pretty much stands, gloriously drenched in bright, hopeful sunlight.

I can explain weather to J. We have sat there looking out the window as snow falls, heavy and slow, building up around us.  We have sat there water racing down the blacktop and into the drains as the world seems to melt with the rain.  We have watched sun break through clouds, and warmth suddenly suffusing the air after it’s been cloudy all day.  These things, in J’s mind, don’t always go along with the sort of music that we -with our standard-issue brains and conditioned minds- would choose.  I have seen J happily prancing along to the school bus in sunshine while humming “Singing In the Rain.”  I have witnessed him bouncing around in the garage while rain falls abundantly and “Walking On the Sun” is streaming from his iPad.  He has sat in our very sunny, very hot back patio, shielded by the umbrella as bees buzz from flower to flower around him, while listening to “White Christmas.”  

After the storm had passed (and we’d rescued the tomato plants that had been knocked over,) I sat J down to tell him about tornados and why we need to sit in his TV room to be safer.  J’s view of the world is different from ours.  His bubble is multifaceted, multicolored, multi-textured, but it has very little to do with the other bubble, the outside one…the one we manage, deal with, handle, convey to him.  There are things he just doesn’t grasp, even if they are important, crucial, essential.  The Wizard of Oz is a magical adventure that starts with a tornado…J probably thinks “hey, guys, that sounds like fun…you go right ahead and do that while I sort my movies in private.”

My dad’s system won’t work this time.  Think, think, THINK!!!!



Seventeen days in…

Habemus groovus…  Or, in plain English and not that freakish attempt at Latin, we have a groove!  It’s not the best groove, and I’m sure it will be fine-tuned further as time goes by, but it’s a groove nonetheless.

J’s newest obsessions are simple and vaguely familiar: organizing MY closet, saving electricity at all costs (to the point of people suddenly finding themselves showering or shaving in the dark,) and making sure Dada is out the door without fail on days when he’s supposed to be heading to work.

The binder with the breakfast selections is a hit, and we’ve only had issues one morning when Dada was in charge and J got yogurt and pear chips for breakfast.  To hear Dada tell it, J gave him the most amazing WTF look ever.  That’s what happens when mother has a headache and stays in bed until her Tylenol kicks in…

J now has his own apron and chef’s beanie, and he happily dons them when it’s meal prep time.  He has opinions, too.  It’s a little like having Christopher Walken in the kitchen…61659035

This applies to things like mushrooms, garlic, cheese, basil, and chicken pieces.  Pasta, also, elicits a hand movement that beckons greater amounts to the cooking pot.

We have discovered that he sometimes doesn’t want to go out.  It’s not that he’s upset, but he wants to stay home.  Maybe he’s just happy in his lounge pants, or maybe he doesn’t want to be hassled by getting in and out of the car and sitting in traffic.  Sometimes he’s just happy doing whatever it is that he has decided to do.

For the past three days J has been sorting a two-cup container of glass and resin beads.  He does it his own way, and it’s more efficient than the way I showed him for doing it.  He watches movies or listens to music while he sorts, and he lets me come in and look, and then he benevolently waves me away.  When he’s done with that container, there’s a second one of equal size filled with a greater volume of smaller beads.  I don’t know if that will make him happy or not, but we will find out soon enough.

We are learning a little more about how to navigate this post-school world each day.  Some days are easier than others, and some days our nerves are frayed while other days we seem to be fine regardless of the difficulties.  Some days things are truly overwhelming for all of us because, well, it’s three adults living in the same house, and some of us are parents while one of us -in spite of being an actual adult- cannot always be left to make his own decisions.  Other days we deal a lot more easily with the limits that have to be set to make things function properly.

Life is complicated.  We try to find balance at home and things start unraveling elsewhere. We have always been an independent unit; we have not really had a network of relatives and friends supporting us every step of the way.  Yeah, people ask…  Yeah, people call for the holidays.  Yeah, we get an e-mail here and there, but people don’t “get” what this is like here.

Take, for example, a recent family event.  One of Dada’s nephews got married, and I had to repeatedly explain that no, we weren’t going to the wedding.  A) It was out of state, B) if we couldn’t manage to travel as a family for my father in-law’s funeral, why would we then make arrangements for A PARTY, and C) J wasn’t invited.  What are we supposed to do in that case?  Not take J and leave for a few days so we can partake of some social event?  Or take J and find someone to watch him for us while we go to the wedding?  When we said no, we weren’t going, the next question to arise was “well, isn’t Dada coming?”  My reaction, basically, was this…


I asked Dada anyway.  His reaction was this…


We sometimes wonder (I mean REALLY wonder) why people don’t “get” why this is not a practical request.  We have actually caught ourselves sitting around at the end of the day pondering this…



We’ve reached the sad conclusion that people are just not that invested in us.  Not that they have to be, but it would be sort of nice if they put just a teensy weensy bit of thought into why traveling 2500 miles each way might not be something ONE of us wants to do just to attend a wedding.  Seriously, how would it look if my husband of seventeen years hopped on a plane to go to a black-tie wedding at a ridiculously expensive venue with an open bar while I sit at home single-handedly taking care of our 21 year-old disabled son?

It’s not that he can’t, mind you.  He’s had to travel before.  His father’s illness, the funeral, work…he is OK with doing that because, well, how can he NOT go…but do we REALLY think he’d want to go to a party without me?  This is the man who asks me if I want to go to the hardware store with him because we can grab a coffee on the way back, we can talk and hang out.  He wouldn’t enjoy being there stag when he has a wife who is at home trying to negotiate with a person who uses an iPad to communicate his wants and needs.  In what world is this logical???

People KNOW we won’t go.  We really are not particularly social (hello?  I’m the one who waited for the bus wearing a t-shirt that reads “Do I Look Like a People Person?”,) and when we do go to a party we tend to stay together, chatting with each other, basking in the opportunity to not be wearing yoga pants/track pants/t-shirts/slippers.  We HAD to get invited (ah, social obligations…they will be the death of us…just send us an announcement and we’ll send you the same exact gift as if you’d sent us an invite, thank you,) but did they have to NOT add J’s name in there?  Do we really seem like we would show up with Brother Kong wearing a tux and making a spectacle of himself thus ruining everyone’s expensive good time????

Come to think of it…it does have its appeal, doesn’t it?


So, in conclusion, people don’t GET it.  We don’t live like they live.  We don’t have the luxury of hopping on a plane and showing up for a wedding just because there’s an open bar.  For one: how easy would it be to find a truly trustworthy person to take care of a 21 year-old developmentally disabled individual for a whole weekend?  For another: how would HE feel when suddenly thrust into the care of others so we can disappear for a few days?  It’s bad enough that we have to arrange for someone to help watch him while I’m in the hospital for an outpatient procedure…can you imagine for a weekend????

We are falling into the groove.  We are making this work.  We are figuring it out.  We are still surprised that people are so clueless, and we can’t help but feel comfortable in our isolation.  Explaining, obviously, doesn’t work.  People don’t get IT…

The sad thing is we are starting to think they’re really not supposed to after all.