Losing the cool I’ve never had…

In our little universe, Bad Days are increasingly less frequent than Good Days are.  That doesn’t mean Bad Days don’t happen; it just means that when they happen they throw us off completely because our habit of them has diminished over time.

This morning we started a Bad Day.  Anxiety and Autism, as we’ve mentioned before, can be a pretty difficult combo, and that’s what we were experiencing today.  For some reason, J was extremely anxious and started his day two hours ahead of schedule and repeating the same things over and over and over again in a very obsessive tone.

The hill heading down is a lot shorter now so things escalated and we were both pretty much emotionally and physically spent before 8 a.m.

By 9 a.m. J was into the cathartic sobbing that washes it all away, and my neck was as stiff as Sam the Eagle’s.

Last week was good.  J’s 24th birthday was pleasant in a sweet, quiet way.  He got his cake exactly as he requested, and he had balloons, streamers, a banner.  Prior to that, the holidays had been better than they’d been in quite a while.  We seemed to be on a roll.  Today we either hit a wall or we ran out of “roll”, and are left with the little cardboard spindle.  Hopefully, we will now start with a new “roll” and it’ll be double-ply and super-thick.

J has been doing well.  He has been a little less into exercise (something I started working on today…please, pass the Penetrex) and a little more into being alone.  He has been a little less into going out, and a little more into being specific about where he wants to go, what for, and when he wants to come home.  J has also started not being so difficult about his dog.  He can walk near her most days, even walking into a room without worrying about her presence, and not bat an eyelash.  The dog, for her part, has learned that J is the cue to everything…when to sit, when to not resist being sent outside, etc.  They co-exist peacefully though not yet side-by-side, and I think both are pretty much happy and satisfied with their lot in life…

Everyone is getting older.  J is getting older.  We are getting older.  It makes for interesting dynamics.  As we slow down due to age, J has to exercise greater patience with us.  He accepts the limits of his bedtime when we factor in that our schedule calls for an early start (we are up at 5, and Dada is out the door before seven a.m.) and that we often feel exhausted before nine P.M.  J, who has the habits and wishes of a dude his age, has to think to himself “I know I didn’t get out of bed until nine, nine-thirty, but these old geezers can’t stay up until midnight…even if they TRY!”  So he navigates our schedule and his with very little resentment…  There IS some, but it’s not unmanageable.

What we do have, whether people outside our home realize it or not, is a lot of activity within these four walls.  I travel up and down the stairs incessantly during the day, and there are chores to do, administrative work to keep up with, and the matter of J and the dog being creatures who require and want attention.

The doorbell rings and I answer after taking deep breaths.  The phone rings and I answer after taking deep breaths.  I take a lot of deep breaths.  More and more often I miss the gate that separated our house from the road when I was growing up.  We knew someone was there because they would honk the horn, jangle the chain, or call out.  It gave us time to collect ourselves and prepare for the onslaught that was “company.”

I don’t have that luxury.  The doorbell is right next to the door which is only 50 feet away from the sidewalk, and it takes me 30 seconds to get to the door from the farthest spot in this house.  Also, people can immediately tell I’m home…basically because I’m always at home.  This seems to translate, in our modern day and age, to “I’m always available.”

I am not.

Some days I am up to my ears in Autism. Other days I’m up to my ears in administrative tasks I need to complete.  Other days I have chores or projects I’m working on in stages.  Some days, I admit, all I want is to be left alone.  There are times when I’m quite content to just sit with the dog and read while J doesn’t need or ask for me.

Another problem I have is that people assume I am always near my cell phone or my computer.  I am not.  There are days when I hardly touch the computer at all, and most of the time the cell phone is shut off on the bedside table.  On these days, if you text me, I will not know it.

Apparently, this poses a problem.

I am not modern enough for some people, not accessible enough for others, and make things look easy by -because this is how I was raised- not complaining in all the adjective-filled glory I’d like to display.  The fact that I have an adult son who still needs his ass wiped after he poops is not something I like to discuss in polite conversation, but that -more and more- I feel compelled to share when someone doesn’t “get” why we’re tired, busy, or simply want to be left alone.

I can be sociable…in dribs and drabs.  And I will allow access to some of the more personal aspects of our family life so that people will understand why their expectations need to be lower…and lower still.  I don’t violate J’s privacy when someone is insistently not understanding my roundabout explanations about how we live.  I just nod and say “yeah, I know…you’re right.”

I listen to well-intentioned criticism with as much patience as I can muster.  I nod at statements regarding how we deserve time alone as a couple (which is being interrupted by the advice-dispensing guest), we’re still young (no, we’re not…the “youthful fifty-something with a disabled adult child is more of a myth than Sasquatch), people know what we go through (I have a 6 a.m. task you can come do for me whenever you feel inclined, and then tell me you “get” how this is necessary -on a digestive distress day- more than twice a day).

I see the little pouts (those are necessary to the proper conveyance of the message that empathy is present), furrowed brows (concern), tilted head (active listening that is formulating a peppy message of encouragement and understanding).  I understand people want to help, but I don’t think they understand the kind of help we actually need…

  1. We don’t need to be made to feel “normal”.  We’re not “normal”.  If what you present to us as “normal” is what “normal” really is, we don’t want it, thank you.
  2. We don’t need to hear the words “I feel you”, “I understand”, “oh, I know.”  Unless you are a middle-aged person dealing with a developmentally disabled adult and you are looking at your dwindling remaining years as an opportunity to “get everything ready for when we’re gone”, you neither feel, understand or know…
  3. Your irascible toddler or teenager, difficult though she/he may be, is neuro-typical.  They are in a slightly better position to eventually revise and improve their coping mechanisms as they mature.  What we have is what we get.  If Molly likes to slam the door and yell she hates you because you didn’t take her to her friend’s house for a sleepover, Molly will -hopefully- eventually realize that it’s stupid to react that way to something pretty much trivial.  J will never understand -because that’s how he’s wired, thank you- that just because his Slinky is tangled doesn’t mean that the space-time continuum won’t function as it should until I fix the Slinky…

What “cool” I have for dealing with crises of all sorts and intensities is learned.  I’ve learned to have patience and not say EXACTLY what I’m thinking when I’m thinking it.  I see in my future an old lady that everyone thinks has galloping dementia and says the first thing that comes to mind…let her talk, they’ll say…she’s not well.  The thing is I will be well, but I’ll just be old, cranky, sick and tired of being told how “normal” and “awesome” everything is because we make it look so but it’s really rather messy and can be unpleasant.  My filter will be gone.  I won’t have lost it…I will have, however, dispensed with it quite voluntarily and shamelessly…

Until then, well, here I am…I will nod, smile, not show my teeth, and say uh-huh a lot with what little cool I have.



If a Christmas tree falls in the living room and there’s no one there to hear it…

‘Twas the Seventh Day of Christmas and all through the house, the only creature stirring was yours truly.  I am usually the first one up and about on a weekday, and I dutifully headed downstairs to make coffee, turn on lights, turn up the heat and water the Christmas tree…

Have I told you about this year’s Christmas tree?  We got it from a lot near the house, and the plumpness and juiciness of it were eye-catching even at the Christmas tree lot.  It came into the house with that evergreen aroma that is the harbinger of all things happy, cozy and Christmas-y.

For the most part, the dog has left the tree alone.  She absconded with, chewed on and discarded a wooden snowflake, but that’s been the extent of the damage.  Of course, she likes the tinsel because it just about leaps off the tree and attaches itself to her luscious coat, and we expect to -at one point or another- find some tinsel in the poop she drops in a particular corner of our backyard.  Aside from that, the tree is just an outdoor thing that was placed in an area she usually doesn’t mess with much, and so we haven’t experienced any of the usual dog-related horror stories that people tell at this time of the year as if they were sitting around a campfire in a dark forest holding flashlights under their chins to morph their visages into something doomful.

No.  The tree had been happily occupying its corner, witnessing the progression of our annual Twelve Days of Christmas with nary an incident.  The whole December-cycle had been so pleasant this year that we, in fact, congratulated ourselves and each other, like Mortimer and Randolph Duke tend to do in Trading Places, as to how great this round of Christmas-y reverie has been…



Yesterday morning, as I said, I went downstairs to start the coffee and water the tree when I found that the tree didn’t so much need watering as it seemed to be watering the floor.  A sort of quiet panic (the sort that engulfs you when you don’t want to rouse an entire household at an ungodly hour) took over and I moved quickly to get a tarp for the floor, paper towels to dry everything, and a flashlight to see if I could find where the water was coming from.

When Dada came downstairs half an hour later, he found that certain things were moved but, with the dignity of the Titanic’s skipper as his ship was going down, I informed him that there seemed to be a leak and we needed to carefully move the tree so the floor could be dried (“Hardwood floors!  Wonderful hardwood floors!  We love hardwood floors!”  What were we thinking????) and the situation solved.

There was no water UNDER the tree base.  Mysteriously enough, no water seemed to be coming from anywhere.

I know what you’re thinking: the dog peed.  No.  It wasn’t dog urine.  It was water.  Pure and simple.

So, we moved the tree, put the tarp down, replaced the tree in its allotted spot, and had our coffee.  Afterward, we returned to our bedroom where I prepared my list of things to do for the day, and Dada got ready for work.  The dog snoozed at the foot of the bed, far from the tree, and all was right with the world.  Dada left for work shortly before 7, and the dog and I returned upstairs so I could read and do some administrative stuff before getting into the full swing of things at 8:15.

As I stepped off the staircase, I thought something about the tree looked off.  But, as it often happens when you first look at the beginnings of a catastrophe, I couldn’t quite figure what it was.  Like the time TGG shaved his eyebrows (he was five…wanted to look like Michael Jordan…kinda funny 22 years later) and I looked at him KNOWING there was something “not right” about his face, but not quite “getting it” right away.

A loud EEP! escaped me.  The tree was drunkenly sagging against the wall.  Uncle Billy leaving the celebration for Harry Bailey’s wedding in It’s a Wonderful Life appeared soberer than our tree.


I decided that giving J his med was the priority and so I went to deal with that before addressing the tree.  This was, for once, the right choice to make…

What ensued, kind readers, is the sort of absurd chaos that Hollywood inserts into every Christmas comedy.  Collapsing trees.  Exploding ornaments.  Water, water everywhere.  A middle-aged woman trying to cope with what is now known as The Great Tree Debacle of 2018 and the young man who, loving Christmas as he does, felt it was a very personal affront to come downstairs to find his tree lopsided, his ornaments willy-nilly in a rather wide arc around the base, and his mother unable to fix this in the same prompt and nimble fashion she usually fixes that which causes him grief.

J’s distress over the tree’s collapse was such that not even pepperoni and cheese would soothe him; he walked around in circles repeating the word CHRISTMAS both spoken and in ASL, and his attempts at helping me were not particularly productive so we both ended up upset, frustrated and on the brink of tears.  We alternated between yelling at the tree, each other, and then apologizing profusely.

Dada had to come home.  There were more yelling, more throwing things around, more drying the floor.  Because the tree, after being righted and secured, inexplicably decided that horizontal was the way to be, and taking the tree-base (and what cannot have been, but surely seemed, 100 gallons of water) with it.

At this point, the dog is outside (sitting in front of the fence in the farthest-from-us-possible spot she can find and looking out into the distance as if trying to pretend she doesn’t know us), J is circling around helplessly (all while repeating the word CHRISTMAS in a more plaintive tone than Charles Foster Kane utters “Rosebud!”), and Dada and I are both yelling at each other because the floor is wet, the floor isn’t being dried properly, we hate Christmas, we especially hate THIS TREE, we never want to see another real tree ever again, we’re too old for this shit, why have the GOOD towels been used to mop up the mess?, this will never be fixed, I’m leaving you and running for the hills…you name it.

The tree (which lost ornaments like the aristocracy lost heads during the French Revolution) is dragged outside on to the patio.  The ornaments are peeled off and thrown into a bucket (the one that isn’t holding sopping-wet towels) and the lights are unstrung and set aside.  J is still sitting at the dining room table and muttering CHRISTMAS to himself, raising his voice to say it only when I walk past him looking for tools, boots, whatever we need.

I am, by then, attempting to sound soothing even though I feel far from soothed myself.  Dada holds the tree while I tend to all the things that will impede the rest of the process.  The tree, he tells me (and the thought has crossed my mind, but I think it impossible), feels much heavier than it did when we first brought it home…

A quick Google search rendered no results that would confirm our suspicion that the tree is, quite simply, waterlogged.  Try it.  Google “can you overwater a Christmas tree?”, “how  much water does my Christmas tree need?”  Nowhere will you read that a Christmas tree will suck down water and accumulate it on each and every limb regardless of how tiny and insignificant it might appear to the naked eye.  Nowhere.  Yet here we were, standing with an overwatered tree that weighed -easily- ten more pounds (if not more) than it did when we bought it.  The tree is so fresh and plump and juicy that it was no trouble at all cutting into it…it was, to quote Linda Richman from SNL‘s Coffee Talk, “like buttah!”


We hacked away at the base and the branches.  The formerly-7-foot-tall tree is now shorter, and we have a clearer view of its trunk at the bottom. We put rocks in the base to help prevent another tipping-over incident.  The tree is now (we hope) so firmly secured in the base that if it tries to tilt, it will probably make itself even more secure.  Our hope is that, like Tai Lung in Kung Fu Panda, it will be a prisoner in its fortress until we decide it’s time to take it out of the house permanently.


Of course, if a feather happens to fall near it and it uses it to escape, that’s an entirely different story.

The whole process of returning the tree to some semblance of its former Christmas centerpiece glory took about five hours.  From the initial tilt-sighting at 8:15 to “this tree is DONE!” and J being happy it was seven hours.  J cried.  I cried.  I’m sure that Dada felt like it at several points during this long, drawn-out bout of chaos.

The rest of the afternoon and evening, and even this morning, we have been looking at the tree from every possible angle to make sure that it hasn’t budged a millimeter.  It hasn’t budged at all…that we can tell.

The Great Christmas Tree Debacle of 2018 has left us emotionally and physically exhausted.  The Seventh Day of Christmas proceeded as planned, and we all managed to get some enjoyment out of it, but we’re ready for the Eighth Day and putting this whole messy (the best thing for pine tree sap stains??? PINE SOL!!!!) incident behind us.  The tree is smaller today than it was yesterday, and I admit we walk past it with suspicious looks and a wariness we didn’t feel before.

You might be wondering what happened to those limbs that the tree lost during the Great Hacking…well… since people keep pinning pictures of buckets with tree branches on Pinterest, the branches have been distributed in what (we hope) is a somewhat decorative and attractive arrangement on the front porch.  The chunks of the trunk that we cut off will be displayed (as a cautionary tale and a reminder of this particular “someday it will be absolutely hilarious” incident) in the Diogenes Club.


I’d say in our old age we’ll look back on this and laugh, but we’re close enough to our old age to not find it especially funny.  The neighbors, we’re pretty sure, now think we’re the oddest, weirdest, most mentally-deranged people on the street.  I dread to think what went through the mind of anyone walking their dog yesterday between the hours of 11:15 and 13:15 (what we refer to as Critical Emotional Mass here).  I’m pretty sure it came across like a cross of scenes from Who’s Afraid of Virginia Woolf? and Mommie Dearest.

Unknown-1  EIDB

Like all debacles, it isn’t really funny until, well, you start finding it ridiculous, funny, something that is so very in tune with the goings-on in our household that it should be par for the course.

I’m sure the full humor of it all will hit us next year when it’s time to do the whole Christmas tree thing all over again.  We’ll remember the drunken tree, the insistence on J’s part of repeating the word CHRISTMAS in any way available to him, the yelling, the water, the towels, the dog trying to disavow any knowledge of us, and the months-long scurrying past our house of people walking their dogs and expecting some Christmas-related accouterment to fly out a door followed by a middle-aged woman (still in her pajamas, for crying out loud) screaming that she hates everyone, Christmas, and that she’s running for the hills.

Where did the early-morning water puddle that started it all come from?  We don’t know.  Was there water under the tree base when we threw (not took…threw!) the tree outside? NO.  Not a drop!  The floor under where the tree stood didn’t get wet until the tree tipped over and spilled what was in the base (pretty sure it was 600 gallons of water…though it may have been less than a quart…)

Lesson learned?  Yes, Virginia, you CAN overwater a Christmas tree.  Freshness ain’t all it’s cracked up to be…

Ho, ho, ho…





A one-man cult following…

It is inevitable.  Whenever J goes out shopping and there is a video department at the store, he goes looking for the same movies.  We recently did an inventory of all the movies in his binders, and his pattern is pretty consistent.  He loves Alice in Wonderland, A Bug’s Life, The Brave Little Toaster, The Great Mouse Detective

No sooner do any of these get the smallest scratch that J goes and replaces them.  He doesn’t jettison the scratched one.  He keeps it much like Beth March does old dolls in Little Women.  The movie is scratched, split, cracked, slightly bruised…it doesn’t matter.  J puts it where it used to be stored before its accident, misfortune, illness, infirmity, and gets a new one to use in its place.

This, I have to wholeheartedly admit, is one of his most irritating habits.  We don’t get it.  We know it’s part of how his brain works, but it irritates us nonetheless.  We play along.  We replace the movie.  From time to time we make a concerted effort to persuade him to toss out the broken, split, bruised, scratched, marred one.  From time to time, very rarely…once in the bluest of blue moons, he plays along and says goodbye to an old, infirm friend.

We’ve gone through this with everything: Beauty and the Beast, A Charlie Brown Christmas, We’re Back! A Dinosaur Story, every single Toy Story movie, every single The Land Before Time movie (especially The Great Valley Adventure because he loves The Roches’ songs), and so on and so forth.

However, from among these, there is one movie that is especially singled out for replacement even when replacement is unnecessary…

Lord Jesus help us, we buy FernGully: The Last Rain Forest every single time we find it at the store.

It has become, by now, a running joke in our little household that Ray Liotta’s voice can be heard whispering “if you stock it, he will buy it!!!!”  We are single-handedly feeding the vicious cycle that is a store’s inventory: go through the list, mark what you have and what has sold, and if that ONE COPY of that ONE MOVIE sold, restock it.

We have considered when going shopping at stores that stock this DVD, sending a search party ahead to locate the ONE COPY and somehow hide it.  Our recon missions might, however, seem suspicious to Loss Prevention and we might end up getting pulled into a back office to explain away our particular situation.  The thought of this is not particularly enjoyable: you see, sir, our son…well, he’s I’d guess you would call it obsessed????  He ALWAYS buys FernGully and if you look at your recent inventory lists you will see that it gets consistently restocked even though it’s not one of the most popular movies made in 1991…that honor would go to Aladdin…which he also buys as frequently as he can…if you’d like to come to our house and look at his embarrassment of riches when it comes to movies you would understand that we were not trying to ABSCOND with FernGully, but rather were attempting to NOT have to BUY it AGAIN????

There are things that are hard to explain, and this particular obsession is one of them.  Why FernGully?  At $4.99 a pop (on average) it’s not a huge expense, but at maybe 15 copies by now, it’s a ludicrous one.  All the other movies cost more, and we try to explain to him that he doesn’t need another copy.  There are some movies that create a true crisis when they do crack, split, get bruised, won’t play properly because they are scuffed…  Those movies we have backups for, and we are unrepentant about this.

The list of classics that cannot possibly be out of circulation because they cause him deep distress are Melody Time, Make Mine Music, The Three Caballeros, Saludos, Amigos!, Ichabod and Mr. Toad, Fun and Fancy Free and anything that has Johnny Appleseed in it…  Those I have a secret stash of, and I am not ashamed to admit it.  A few weeks ago his Walt Disney’s Timeless Tales Volume 2 wouldn’t play and I, while J looked over my shoulder and breathed anxiously into my ear, had to search high and low on Amazon until I found it…used…for about $25.  Dear reader, I bought it…I would do it again, too.

If you could have witnessed the look of relief and peace that took over J’s expression when the package arrived, and how happy he was when he sat down to watch The Country Cousin over and over again for the next couple of hours, you would understand why I cave…  These are, we figure, his friends and companions, and while he has a vast selection of movies, there are some of those where his nearest, dearest, most trusted and most soothing friends and companions can be found.

The real world is ready and available to J, and he partakes of its joys and activities as often as he is comfortable.  Last Saturday, for example, he went to lunch with us at his favorite French restaurant here in town.  We went early and left walking in the direction opposite to the Christmas tree lighting event taking place at the shopping mall.  We knew J wanted an outing, and we knew the tree lighting thing would be too much.  J was very happy and enjoyed his meal greatly, and then he was ready to come home.

J likes going to the Mexican bakery so on the way home we stopped there.  The parking lot was full of vehicles, and J decided he didn’t want to get out.  I could have said “you MADE us come here”, but instead I said, “wait with Dada, and I’ll be right back.”  I came back to the car with a bottle of Mexican Coca-Cola and his favorite bread to last him throughout the week.  He was happy, and he was ready to come home.

We adjust.  We tweak.  We accept.  We move forward.

Every time we go to the store and buy FernGully (or The Brave Little Toaster) the cashier says “I used to LOVE this movie when I was younger!!!  I had it on VHS and I watched it so much it broke!!!”  I am always tempted to say “you should buy it on DVD!  Tell your nearest and dearest!  Tweet to your friends and contemporaries!  We BEG you!!!”  I never do.  We’ve got a one-man cult following going.  Why mess with a good thing?

Once in a while, a very small royalty check arrives at the offices of whatever representatives the players in this movie have.  They look at the meager amount that its made for -or maybe they just wait until it reaches a certain number before they hand it out to them…who knows?- and they ask themselves “FernGully?  Who could possibly be buying this movie????”

Call it our (teeny-tiny, extremely) little gift to them.  A little pixy dust in royalties.  We just hope they never think “you know, this thing is SELLING!  Maybe we should do a fan convention or something of the sort?”  There J would stand…alone in a crowd that suddenly remembered they love this movie and don’t own it.  He’d be overwhelmed by them, and we’d have to leave while they surge forward to shake the hands of Samantha Mathis, Christian Slater, Cheech AND Chong, Tone Loc, Tim Curry and representatives from the estate of the late, great Robin Williams…

Of all the movies in the world, J’s hyperfocused on FernGully.

Go figure!




That was a lull…a prolonged lull…wasn’t it????

Happy November (I’m even late for that) and may everything be well in your neck of the woods, valley, copse, thicket, hedgerow, desert, tundra…

We are well.  J is well.  J is an adult with Autism, and he has moments when this hits home for him and for us, but we’re all doing well.

We have grown accustomed to our new surroundings, and we have jettisoned all sorts of things that don’t really bring positivity into our lives.  By this I don’t mean specific people or things, but rather general clusters of influence: Facebook groups that elevated our blood pressure unnecessarily (I’m looking at you, neighborhood Facebook page!), activities that brought no real pleasure and felt more like social obligations, the unwilling and reluctant interactions we were not really enjoying with certain businesses, food, events.

We have become pleasantly self-contained in a non-noxious way.  We are cultivating each other and ourselves.  Does that sound reasonable?

What I mean is that even in his most non-verbal mood, J is actually feeling that we listen to, and take him into consideration.  J no longer thinks we will try to hoodwink him into doing something he’s not in the mood to do, and this has made him more accommodating.  “You did this for me…please, let’s do this that you want to do…”  We have realized that the no-more-than-two-hours window of opportunity for outings works best, and he loves that we take that into account.  We also have realized that Autism aside, J is very much a homebody and loves his creature comforts.

We have accepted that there will be times when J will be done with a movie at the theater before the movie is done.  The last time we got irritated about this we ruined our own afternoon.  J had come down from his anxiety, and we were still fuming…then we took a step back and realized “if he’s cool, why are we doing our best to rile him up again by being pissed off?”

I think they call that wisdom.  I’m not entirely sure that we’ve become wiser, but we’ve become more accepting.  We didn’t think this was possible.  For a while there we thought we were pretty damn good about that, and then we realized that we aren’t.  We were getting upset about things because the accepted convention is that we SHOULD be upset when we’re really not…if J is happy, without the more tyrannical aspects of his happiness manifesting themselves in too outward a manner, we should be (and, surprise!!!, are) happy.

Maybe it’s not wisdom.  It’s quite likely that what we have reached is old age.  Or maybe not Old Age, but rather Older Age…we spend a lot of time quoting that t-shirt that reads “I find myself to be exorbitantly superannuated for this feculence.”  The feculence was fighting things that are not worth fighting against.  This is not to say that we have given up on our kid or the work we have to do with him, but we are understanding things a lot better.

Take, for example, his recent rejection of the treadmill.  He doesn’t want to use it.  He’s done with it for now.  I know it’s “for now” because he hasn’t expected it to be removed, and he hasn’t stopped exercising.  He has just changed the way he does it.  The weather has turned kinder (and there are not as many flying things out there) so he now enjoys walking up and down the driveway and across the street at a brisk clip until we complete 20 laps.  He does this carrying a weighted ball.  He also stretches; he does lifts and bends that improve his coordination.  I’ve ordered him a weight bench to help him with his fear of being leaned back.  It will also, with the program I’ve designed, help his core muscles.

At first, I was upset about his unwillingness to stick to the treadmill.  I worried about him getting fat.  I worried about him being stubborn.  I worried about being scolded by the doctor.  His weight has remained steady.  His clothes fit well (and he’s down a whole size).  He is doing his best with the body he has, and within his particular current preference for movement and effort.  He’s not slacking.  He’s changed course for the time being.

I sometimes travel into that alternate reality that we abandoned when J was diagnosed.  Alternate-reality J, at this same age, would be completely out of reach.  Would we know what he eats?  No.  Would we know what he drinks?  No.  Would we know what he’s doing or where he is?  No.  Would he be willing to listen to advice and take guidance?  Probably no.  Real-world J, because things are as they are, has all these things he’s expected to adhere to, and he is quite gracious about it…

J has learned to accept the dog, and he’s getting closer to letting her do what she’s supposed to do for him.  She positively adores him, and she is extremely obedient when he’s around.  She only hears “the boy is coming” and she sits quietly in her corner, regardless of how unruly she has been previous to that moment.  She respects his space, and she accepts his reluctance.  She is also full of hope that someday her feelings will no longer be unrequited.

That is where things stand at this moment.  We have a new granddaughter and we hope the kids will move closer to us sooner rather than later.  We are comfortable in our home and our skins and our bodies and our minds.  J is comfortable and happy, and he tries really hard to stay that way.  On bad days he only expects understanding, and he repays with efforts to meet us halfway.

Life is good…even during the lull…the prolonged lull…



In recent weeks we have heard a lot about banning straws and saving the environment.  We have also engaged, at times more animatedly than would seem necessary, in the discussion of how this would affect individuals with disabilities.  I’ve heard the comment “well, figure it out!” more frequently than I would have liked.

We have had two outings recently when straws were neither provided nor offered.  We’ve had to figure it out.  J is not a fan of the feeling of glass on his teeth, and he’s had to make do (with more grace than I would have imagined) with drinking from a glass without spilling or dribbling too much.

I am as fond of the environment as the next person, but I fail to see (and, please, don’t come back at me with the whole landfill thing because that’s NOT what I’m referring to here) how eradicating the plastic straw will save the planet for humanity.  Don’t we have bigger battles to pick?  Why this little one?

Let me explain: a lot of cities across the U.S. have recycling programs.  Others don’t.  Not only that, but there are cities where people who do want to recycle have to drive to parking lots and other designated areas to take their recycling.  In some cities, certain aspects of the recycling program have been shut down because “it’s too costly” so there might be plastic, cardboard and paper recycling, but no glass, for example.

Also, the majority of fast food businesses seldom see their plastic lids and cardboard or plastic cups return to recycling bins located in the shops.  More often than not they end up in the customers’ vehicles and, from there, end up in the trash.

Recycling programs don’t accept foam, plastic hangers (which are ten for less than two dollars at most stores), pizza boxes, etc.  Those things end up in the trash, too.

Why focus on, of all things, the straw?  Because it’s easy, I suppose.

Well, for some people it’s not that easy to do without a straw.

Go ahead.  I’ll let you sit there and fume about how now you can purchase reusable metal straws (how comfortable that must be when a cold or hot drink goes through it) or heavy-duty reusable plastic straws (those, for the most part, don’t bend).  You can also argue how I should not hesitate to carry these things with me when I take J out.

Take a moment.  Go through your logic.


Let’s see if my arguments make any sense:

  1. How many things do I already have to strategize before taking J on an outing?  And my son, mind you, is fully mobile.  We don’t have to contend with wheelchairs, assistive equipment (the iPad doesn’t count), oxygen tanks, etc.
  2. In light of the fact that the ADA often is earmarked by many as a drain on resources, an imposition on businesses and agencies, do we really think disabled people need one more worry about accessibility?
  3. Will we now need to buy special pouches to carry our special straws?  Someone suggested, “just throw it in your purse.”  If you saw the inside of the average purse you would realize it’s not the best place to throw a straw.  Between the twenty other things I carry (cell phone, sunglasses, keys, wallet, pouch with eyedrops, kleenex, etc. J might need, sewing kit, pen, checkbook, charger cables (because you can’t have just the one), and so on and so forth) you’d say to yourself “that straw will never be found again, and it probably won’t be sanitary if she finds it.”  (Oh, and the person that suggested maybe you can get a “certification” to justify using a straw can bite me!)
  4. The same person suggested that I give it to J to carry.  Yes, I could do that, but…where is he going to put it.  Oh, yeah…a backpack.  Sorry, his brand of Autism-logic says that backpacks are only for school.  “Get him some other kind of bag!”  So then, when he gets tired or frustrated, I will have MY bag, HIS bag, and the bags we take so we don’t use the plastic bags stores provide.  “Well, J is an adult…tell him to act like one!”  Ah, alas…if I could I would…but…between the Autism and the Mental Retardation it can be a little iffy some days.
  5. “Maybe if you guys didn’t eat out so much…I mean: it’s just a straw, right?”  No.  It’s not JUST a straw.  Going out to eat a meal at a restaurant is, for many individuals who are handicapped, disabled, or both is a huge step forward.  It IS about accessibility.  It IS about social integration.  It IS about the rights of people with disabilities (and their caregivers) to lead as “normal” a life as they can within a certain framework of complications.
  6. How about the elderly?  Don’t THEY get a straw either?  What if grandma can only sip her wine through a straw?  Should she, too, carry her own straw with her?  “Well, if a person has needs that complicate their outings to that degree…maybe they shouldn’t go out?  Why do we all need to suffer the consequences of a dying environment just because some people need straws?”  How about because we’re all in this together?

I don’t think I’m more special or deserve more consideration than the average person.  I don’t think J is more special or deserves more consideration than the average person.  I don’t think what makes this a matter deserving attention or consideration is because some people are more special than others.

We are picking the wrong battles.  We have been for a long time.  We worry more about straws than we do about people.  “But it’s about the environment!!!”  No, not necessarily…  If this was about the environment, there would be a great deal more pushback against the current US administration’s changes to environmental protection policies.  We live in a society that would much rather target drinking straws than the gutting of endangered species’ protections, climate monitoring, clean energy…  Need I go on?

So, please, when it comes to saving the environment, don’t raise the issue of straws with me.  While my son has to graciously accept that he can’t use a straw because the environment is getting screwed up by straws in landfills, there are bigger, more important battles we could be picking to protect this world we live in; we could, for one, start being more empathetic of those differences that distinguish us from each other in a very basic level.  You know: the crap we can’t really change…the color of our skin, where we were born, our gender (There are more things in heaven and Earth, Horatio, Than are dreamt of in your philosophy…look it up…it’s Shakespeare), the faith we get from our culture and upbringing, our intellectual ability…

As the parents of individuals with disabilities and/or handicaps, as the caregivers of parents who have become increasingly frail due to old age or illness, as normal human beings who might find themselves in the not-so-extraordinary situation of life throwing lemons your way and having to “figure it out”…we need to pick bigger battles than straws.  If it’s about feeling like we’ve “done something” the numbers might add up, but there are better things to expend our collective energy battling…

Of babies and puppies, of life, love, disappointment and hope eternal…

“Life’ wrote a friend of mine, ‘is a public performance on the violin, in which you must learn the instrument as you go along.”
― E.M. Forster, A Room with a View

I had babies once.  They’re men now.  Not even J can be categorized as a kid anymore.  He’s an adult.  Looks like an adult and, from time to time, acts more like an adult than many people expect.  This is a good thing, but -of course- it’s not consistent.

TGG is an adult, and he has responsibilities.  He will be adding another living breathing one to the roster come October.  As we tell anyone who will listen (and, mostly, they don’t) every baby is a shot in the dark.  You don’t know what you’re getting, and even if you get something that looks, sounds, feels and acts familiar, the baby will grow into whatever he/she is meant to be, not what you, in your parental naivete, are expecting or hoping.

I started out with two boys.  They were, for all intents and purposes, easy babies.  Then they grew up a little and started changing, evolving, developing into the people they are with their quirks, nuances, etc.  It happens to all of us, and we have to -from time to time- step back and realize that our kids really do NOT belong to us.

We also have to remind ourselves that, for the most part, we have NO clue what we’re doing.  We develop a pattern, a routine, a general strategy…and we go from there.  If it works consistently we should consider ourselves lucky…blessed.  If we have to do constant readjustments, well, we start feeling a little like failures, stupid even.  That is where the old saying of “the best-laid plans of mice and men…” comes from; back home we say “man proposes and God decides.”

The same, by the way, applies to the ownership of a pet.  Dogs have minds of their own; they are not as difficult to figure out as cats, but they give you a run for your money nonetheless.  Take, for instance, our dear Luna…

Nearly four months into her tenure as the family dog, Luna has proven to be a conundrum.  She is smart, but not.  She is sweet, but not.  She is malleable, but not.  She is, in spite of her adorable puppy persona, very much a dog with a distinct attitude and personality that has very little to do with the precious ball of fur we brought into the house.

J is starting to get used to her, and she has figured a lot of things about him.  Her tail still wags enthusiastically when she sees or hears him, but now she knows to sit quietly and not startle him.

J has his routine, and Luna has hers.  She has come to understand that J’s territory is his, and that she has to earn his trust and he’s a tough customer.  Luna understands the gates that separate our room from the general area where J circulates during the late-night and early morning hours, and she respects that separation.  She wags her tail enthusiastically whenever she sees J, but she knows to not yelp or bark because it can make him jump a bit.  She is learning, of course, that things take time with J.

One of Luna’s favorite morning activities (after spending a solid half hour barking hysterically at the neighborhood cats as they promenade around the backyard) is to pull her mattress, pillow and blanket (don’t ask…we don’t understand how she took possession of all these items) from her cage.  This is a thing, you see, that happens like clockwork.  After her breakfast, her trip outside to do her business, her interaction with the cats (who are not daunted by her vocalizing like Maria Callas), Luna goes to her cage and drags everything out so she can park it, depending on her mood, in the front room where the books are, or in the dining area.  Once in a while, mostly on Sundays, she will drag her things to the sitting room where Dada and I read the paper.  While all this happens, J is not downstairs.  He is usually either still in bed or has gone back up to his TV room after having breakfast.  All this hinges on whether he has lingered in bed, or he has started his day at a time that won’t make me call him “Lazy Bones J”.

Now that you know this about Luna and J, I will tell you how I know that -given time and trust- Luna will be J’s best friend in the whole universe.  On Saturday morning, as per her usual, Luna had finished the preamble to her favorite activity and was starting (with a good deal of energy and enthusiasm) to drag things out of her cage.  As she was pulling out her fuzzy blanket (again, don’t ask) we heard J open his bedroom door and move down the hallway.  This sequence of sounds could mean he’s going to the bathroom or preparing to head downstairs.  The next sound is when we know, and this time we heard the top step.

That was all it took.  Luna released her fuzzy blanket, took a step back and turned left towards the kitchen door.  As soon as J had reached the landing before the last few steps, Luna was pawing the door so I would let her out.  No asking.  No dragging.  No persuading.  No word or signal from me.  Luna KNEW.

J came downstairs, saw her outside, smiled, organized his snack box, served his breakfast, and headed back upstairs.  I went to the door, called Luna and, without missing a beat or asking for a treat, she went back to pulling things out of her cage.  Just like that…like “ok, dude’s coming…break time.  Dude’s gone…back to work.”

This is not to say that once in a while she doesn’t take a wrong step.  There are two pairs of shoes that have suffered at her hands…jaws.  She is, after all, still a puppy (in spite of the rather long legs and heavy body) and she is learning.  We move forward, and give her the shoes she ruins with the caveat that she can not ruin any more pairs…she has honored this rule so far.

We (I) thought for a while that the dog had been a stupid, stupid idea.  It wasn’t a brilliant one, but it wasn’t a complete disaster.  The presence of this creature has reminded me that there are things I can no longer do without a shred of regret.  That my health has had recent ups-and-downs is something that disappoints me, but such is the nature of being a living creature.  My body, middle-aged and progressively so, is giving me grief and I have to deal with the implications of this.  One assumes if one has lived on a certain timeline, that by the fifth grandchild it’s ok to be sort-of falling apart.  Well…there is the chunk of disappointment that I contend in on a daily basis…

So…on the home front we have a baby on the way, a dog that is figuring out her reluctant master, older parents who have to shift their glasses more often than they used to in order to see clearly.  The world in general, of course, is doing that thing it does where it alarms us from time to time, and we have to stop and think “how did it get like this?  Is it going to get worse?  Is it going to get better???”

You may be asking yourself “what’s with the quote at the beginning of this rambling thing you’ve written, lady?”  Ah…that!  Well…that just means I’m (you’re, we’re, they’re) in the unenviable position of having to figure it out as I (you, we, they) go along.  Pablo Casals (my favorite cellist, now long-gone but living on in glorious recordings I often indulge in just to make myself ridiculously giddy with happiness) is reported to have responded (aged 95) that he still practiced six hours a day “…because I think I’m making progress.”  

Ergo, my dear friends, let’s all assume that, in spite of all of our slips, slides, shifts, stumbles, we are all making progress, and let’s keep at it.  We will, in small increments most of the time, figure out the pauses, thrusts, leaps and full stops of life.  As long as we’re alive, we have the chance to know something new and ask more questions.

J does it.  Luna does it.  Why should I stop, then?  Nah…I, too, think I’m making progress in spite of any appearances to the contrary.




After a long break, and some ups and downs…

It is now June.  We’ve done a lot, and have had a lot done to us, in the past few weeks…

The children visited in early May and J was enchanted by his little niece.  She is a little over a year old, and she is a charmer.  She also happens to think that her Unc is Shrek so that is both cool and almost completely accurate (because J is very handsome and not green).

In late May we had a medical emergency (mine) that involved a rushed trip to the doctor and a quicker conveyance to the actual hospital.  I’ve obviously recovered, but there are things that need to be addressed still.

Dada has a permanent job (and health benefits!!!!) and this is a cause for great rejoicing. He is closer to home (although traffic can still get pretty sticky), and -as was the case on the day of the medical emergency) he can be here with less stress and strain.

J’s med had to be shifted again.  The Risperdal is gone, baby, GONE!  The Prozac has inched-up ever so slightly.  For someone his size, he is still taking very little Prozac, and the effect is positive, but we are still in the tweaking stage.  We’ve had our ups and downs (which seem to be alleviated when we talk to the psych…WHY is it that things sound less daunting when one says them out loud in the psych’s office?), but we seem to be ticking along quite nicely.

J has lost weight.  He’s lost about fifteen of the extra pounds he was carrying on him, and it shows.  I have to go into his closet and take out the oversized pants that now fall off as he walks…  He still enjoys his treadmill time, but he chooses “break days” when he’d rather not do it, and I don’t force him.  The humidity here helps him sweat a lot more so whatever time he spends walking around outside is only a fraction of how much he sweats when he’s on the treadmill in the garage.

In other developments, a few days ago I was miffed with J because he was in “pilot fish” mode and wouldn’t stop following me around…all too closely.  So I told him he had to bathe himself and I’d stay in the hallway.  He was initially hesitant, but now -I’m very happy to report- J is basically taking his bath with me spotting him rather than me bathing him.  This is a huge thing for both of us.  He still needs help shaving, but we’re working on that, too, and clipping his nails, but giving himself a bath is something with which he is comfortable and at which he is adept.

The situation with the dog is slowly improving.  J has yet to fully warm up to her, but he is more trusting of the control we have over her.  The dog is still a puppy (not yet six months old) and is full of energy and enthusiasm that often cloud her ability to be totally cool when she sees J.  That’s the thing: she LOVES J, and she wants to -above everyone else- play with this human being who is the last bastion of resistance to her overwhelmingly cute puppy charm.

Like any living creature who thrives on affection and attention, the pup wants it most from he who doesn’t yet give her any.  Now that she’s bigger she seems sturdier to him, but she still has all those teeth (and that desire to chew-lick on people) and that 0-to-100 MPH tendency that makes J think “oh, no…here she comes!!!!”  In spite of this, and we REALLY are working on it, we are making progress…the dog is learning to sit when J walks into the room, and her efforts to control the desire to steamroll over him with her love are admirable even if the sound of her tail smacking the floor repeatedly at high speed is quite loud…

We tick along nicely…or as nicely as two middle-aged people, a 23-year-old adult with a developmental disability and an enthusiastic and still-awkward puppy can tick.  We are learning each others’ rhythms, and we are figuring out each others’ quirks.  The dog sleeps all night.  J sleeps all night.  Dada sleeps all night.  I know this because I don’t sleep all night.  There’s always one more detail, one more hurdle, one more snag, but we figure it out.  We think that once the puppy is spayed she will chill a bit…or maybe not.  We think once J realizes that he is (as with his nieces and nephews) significantly taller and more imposing than the puppy, he will understand he has more control than she does.  We work on these things…we worry and we work.

The medical emergency (a thing we have long feared and dreaded) taught us something amazing: we have lovely neighbors who actually care about us.  (Yes, we antisocial people have lovely neighbors and the feeling of affection and familiarity is mutual…go figure!). We also learned that J will react coolly in the face of seeing his mother in the hospital on a gurney with IVs and such stuck to her body.  We learned that FaceTime is awesome because it will give J a sense of normalcy while one of us (namely ME) is not there for the very first time EVER at bedtime…

We also learned that we need to be even more prepared for the possibility of catastrophe striking.  The medical emergency was a medical emergency because it was, as emergencies tend to be, unexpected.  We were unprepared and still managed to be graceful about it…nothing like walking into the ER and being asked “are you alone?” only to answer “yes” and see a look of contempt from the intake person until you add “…and no…I am alone right now because my husband is trying to make sure our disabled adult son is ready to deal with coming to be with me.”  From thinking “here’s this woman about to faint and she has no one” to thinking “well, this is more complex than I imagined and I should be a little more helpful emotionally” it was one short, quick step.  By the time, hours later, that J and Dada came to see me, everyone who was taking care of me was a lot more prepared to help my family too.

So that’s it…that’s where we are.  I hope you are all well, and that I haven’t missed too much.  If I have, I apologize.  It’s been Life around here…you know…like in your homes…

Off I go…to tick along nicely…