Our power to control the weather…

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

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

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

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

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

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

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

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

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

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

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

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

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

Did I mention hope?

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

The way we live now…inside and outside of the shell

This is Dada’s last week at his job here in WV, and J is trying to adjust to the new face of our everyday routine.  We worked on that this past Monday (Memorial Day) when Dada was at home.  Instead of treating it like a holiday, we inserted some of J’s regular Monday routine into the mix as well as some fun activities he doesn’t expect to be doing on a weekday.

It sort of worked.  I’m sure that next week will be “interesting” because it’s one thing to pull off a “Dada’s here from work” one day, and it’s harder when it’s a few days in a row without a trip planned.

I have grown used to the horse pills I have to take every night.  I don’t enjoy them, but they have yet to upset my stomach so I’m grateful for that.  Taking that much iron in one fell swoop is something I’d never had to do before, and I’m slowly starting to feel better, but the prospect of attracting the refrigerator magnets is daunting.  It’s nice to not look like death warmed over, but it’s also a revelation to see that not all my physical limitations are the result of galloping anemia.  I am, and this cannot be denied or reversed, definitely getting older, and it shows.  I am, however, also looking forward to having more energy (something the doctor tells me I will work up to as my body restores its iron reserves to a decent level).

J is doing well.  The Risperdal, of course, wreaks havoc on his weight, but that doesn’t stop him from exercising and trying to control the urge to eat us out of house and home.  In recent weeks we have accepted that we need to exchange certain menu items…pasta and pizza on the same day are a no-no, and J now put his pizza on the schedule, put away his pasta (he gets fourteen noodles for a lunch, people, it’s not like he gets an immense amount anyway) and has his yogurt and banana chips for breakfast.  I make him a salad…he eats it with what can be described as resignation, but he eats it.  Today (Pizza Day) is also Fish Day…  Very little impact on his waistline so far, but at least he’s learned to accept that he can’t have it all on the same day.

Now that the weather has improved (although we get rain most days) he is also going for walks.  Once Dada is home until his next job happens we have planned an after-breakfast walk, our mid-morning workout, trips to the pool, and -when weather allows- walks on the track at school.  Lunch will be the biggest meal of the day.  We will do more outside, and we will all get ready for the next stage of our life as a family.

We still don’t know for sure where we’re hanging our hats.  It looked like Atlanta, GA for a while, but the employment market there is extremely tricky.  Lots of jobs, but not a lot of feedback from potential employers.  The state of North Carolina, on the other hand, has surprised us…immediate replies to applications, unexpected calls regarding jobs we didn’t know were out there.  We are actually quite enthused about this prospect; Raleigh is where I lived with the kids (in my sister’s home) after I separated from the children’s father, and that is where Dada came to visit and proposed to me…eighteen years ago.  We’d be coming full circle, and it’s an area that we both find appealing.

With just a few days left for Dada at work, and the prospect of an out-of-state move within the next few weeks we are all getting a little antsy.  I look at the house and see things to pack, throw away, donate.  Dada looks at the house and sees a messy process.  J probably thinks “all my stuff is coming with us, right?”  He has realized that there is a great deal of change in the near future, and it has made his anxiety ebb and flow erratically, but we are working with him to help him cope.

One thing that has thrown him off completely…unexpected, unannounced visitors over the past weekend.  On Friday, as I opened the garage door to air out the space before J got on his elliptical, a truck pulled up and former aides from his school showed up for an impromptu visit.  To be honest, it took me a moment to recognize them…they were so out of context that I had to take a second look.  As they cleaned the classroom (one year later) J’s ceramics assignments and some CDs he had left behind turned up.  Of course, I had to tell J they were here…I couldn’t not let them say hi…it would have probably seemed suspicious to them…  J was thrown by the visitors, and he wanted them (although not in an aggressive or insistent manner) to leave.  I think he worried briefly that he would have to resume his old schedule, and -while it has taken him time and effort to become a man of leisure) to leave.

After they went he was relieved, but he kept going to the door to make sure no one else was showing up.

On Sunday, just as we were getting the last details of dinner ready to go, the doorbell rang.  This time it was a visitor for Dada.  We had run into this person the day before at the bookstore, and he was recognizable to J, but he was also inexplicably here…close to dinnertime.  J was, I must confess, very good about the whole thing.  His main thing was to go back to his schedule board and reiterate that the events, tasks, activities and ideas he had for Monday remained unchanged.  He did this about sixty times…in fifteen minutes.

We eventually found our center.  We eventually sat down to dinner.  And Monday happened in a pleasant way…

We’re getting the hang of it…again.  Another hang of another it…

Once more…snow…

We woke up to a winter wonderland.  Of course, it still is winter, and we keep forgetting this, mostly because we want it to be over.  An 80-degree day in February gave us a false sense of spring, and now we sit here looking at the snow accumulating on everything our eye can spy outside.

J was up very early.  Up and raring to go.  I think he (and I know this is weird) heard the snow and thought it was best to just make sure Dada was going to work anyway.  School was cancelled, but there is Dada, sitting in his office, hoping the road is properly cleared by evening.

J and I have done all the chores already.  We had them done by 8 in the morning.  That isn’t, regardless of how early it seems, a record.  We’ve actually (on other winter mornings) had our chores done by 7:00 or 7:30.  He is now working on a puzzle while listening to music, and I am trying to catch up with everything I’ve put aside because I keep getting distracted by everyday life.

The lip has healed.  It is beautiful.  There will be a small scar that will show it was once a small wound, but it will not mar the beauty of J’s smile.  Interestingly enough, J’s little lip scar is on exactly the same spot where I have one from a cataclysmic fall when I was three years old.  Mine required emergency plastic surgery, and I was very self-conscious about it growing up…J is just now fonder of lip balm than he used to be…he wants that sucker to gleam when you look at it.

Yes, things are busy here.  We are working on our spring cleaning little by little.  We have realized how big this townhouse is, and how ready we are for less.  Is that odd?  Our nest will never be empty, but we do want a smaller one nonetheless.  It’s not just the cleaning and the keeping things in order; we have become less charmed by the idea of more of anything other than time to be together, enjoying the little things that make us feel happy and peaceful.  This is not, of course, a life without problems, but rather a life without added bells and whistles that make the problems more overwhelming.

We also think that J is ready for a change.  He doesn’t really enjoy this weather.  I think the greatest advantage he sees in not having to go to school is that he doesn’t have to brave the slippery surfaces from here to the bus and back.  He also doesn’t mind not having to bundle up in sixty layers on a daily basis.  Going out to appointments or for fun is one thing; the layers are manageable then…but day in and day out it becomes a huge encumbrance, and J really doesn’t miss it.  I can’t say I blame him.

There are, however, little things that we keep discovering about each other, about J, and about ourselves.  J, for example, will always obsess about the weirdest things, but it makes sense to him and, when we put ourselves in his shoes, it makes sense for us, too.  J has come to realize that we, too, obsess over the weirdest things, and he has grown to accept these quirks.  He doesn’t always agree with, or understand, them, but he accepts them.  Negotiation between us has become easier, sort of, because we are more willing to understand the little things.  A hand extends to help me off the floor; more patience is exercised because an obsessive behavior needs to be expended.  Stopping in the middle of putting a Lego together because someone’s eyes are tired becomes easier; pausing to listen to instructions even though we really are in a hurry to be done so we can go back to whatever animated movie we are watching repeatedly becomes less grating.  Waking someone up more gently because a timer has gone off and we realize it’s bedtime but old people have taken a shortcut to that particular daily milestone is a recurring act of kindness.  Accepting a shorter timer because some people are more eager to end the day than others is no longer a Greek tragedy with chorus and all…

If we can translate all this into a way of living that stretches out for the next five to ten years we will feel like it’s an embarrassment of riches.  The moments when our lens refocuses and we are more realistic we get a little down in the mouth.  If this is not easy in our fifties, what will it be like in our sixties?  J is a young man now, but by then he, too, will have crossed another decade threshold, and there will be moments when we won’t be equipped to deal with what he requires from us.

We think about this more and more.  We worry about it.  We don’t agonize, but we do hear the wheels and gears clicking away relentlessly.  And so we plan on things being smaller, more manageable, more apropos to being able for a little while longer…

And it’s snowing, and it’s almost springtime, and time clicks clicks clicks…back to lists and plans, and culling and trimming.  Tomorrow, inevitably, is another day, and we have Legos to build because a Christmas village needs new buildings even when it’s no longer Christmas.  Yes, it grows out, and over, and around…  And while we can we will keep up.  It’s what we do.  It’s our concession to J’s idea of fun.  Pauses and all, it works for the three of us.

Until it no longer does, we will plug away at accommodating each other, at understanding, at adjusting.  Less spaces to clean, and rooms to organize will be nice.  Less disruptions that we are not prepared for will be convenient.  Is it possible?  We’re working on it…


It’s been one week…

(feel free to indulge in the ear worm that is The Barenaked Ladies’ song of the same name. I certainly am…)

since J’s surgery.  He should be, by all accounts, starting to work through the discomfort.  We are sure that this has been overcome, and all he wants right now is to go to the movies and eat a whole bucket of popcorn.  Last night he had very crispy (oven-fried) chicken, and he has no trouble eating his 12 Pringles crisps for afternoon snack.  If J had any pain or discomfort at all, we’d know it.

The blister on his lip is healing.  Lips are difficult things to treat because the tissue is soft and comes into contact with food, drink, and is impossible to bandage to protect from debris.  We clean it frequently, make sure it’s improving (it is,) and do all we can to keep it from getting hurt again.

Sleep pattern is slightly disrupted.  That is: since I don’t sleep much anyway (hello, middle-age…) I can hear J talking to himself, giggling, and basically waiting for morning to start.  It has been starting rather early.  Not just the waking up, but also the going downstairs and getting the day started in earnest.

J has started asking to exercise again.  It is comforting on the one hand, and exhausting on the other.  The cold weather that followed last Friday’s very summer-like day gives me aches and pains that announce my body is not what it used to be.  I accept this, and act accordingly, but J doesn’t always understand why his mother is not particularly excited about running for half an hour.  It must be done, though…it is a necessity.

We are all looking forward to the weather improving on a more consistent basis.  We won’t be growing a garden this year (if we’re considering moving it’s not a practical endeavor,) but we want to be able to open windows, go for walks, be outside.  This townhouse is (too) big, but it’s still not big enough for me to sit through J’s repeated playing of anything performed by Pentatonix.  Yeah, you can write it down and certify it: I might just be the only person in the planet who is absolutely annoyed, irritated, incensed by, and intolerant of Pentatonix.  I can’t stand them.  They hurt my ears.  When played on repeat, they assail my nervous system in ways that had been, until recently, reserved for Mariah Carey and Rick Astley.  Some time around Christmas a well-meaning soul told me “oh, you MUST watch this youtube video of Pentatonix…it will blow you away!”

Aside from questioning the person’s good taste and sanity, I started to wonder why they thought I, of all people, would find this appealing.  And then J realized how much it bothers me, and he plays it so I won’t go into the TV room.  We were putting a Lego together yesterday, and -since he realizes I understand there is no pause in Lego-building-  I would sit through whatever he was listening to…and he chose The Carol of the Bells (a song that I only can stand when The Sweeney Sisters do the Bells Medley on old SNL re-runs.)  The feeling of being trapped in a maze that kept shifting was pretty bad, and I actually told J “dude, you are better than this…seriously…”  He laughed and giggled, and started the song over again…

That’s where we are: J is back to his normal, mischievous, annoying, funny, brilliant self, and I am hoping that getting older doesn’t impair my ability to appreciate this.

And, yes, I cannot stand Pentatonix…even worse after I actually SAW them…  I know, I know, I know…I’m a horrible person.  So sue me…

This cacophonous world we live in…


Welcome to 2017.  Not much has changed since 2016.  Of course, today is Tuesday and that was way back on Saturday.  We cannot expect miracles, especially when people are still recovering from the holidays and stores are already displaying swimsuits and beach towels.  We have barely begun this year, and we’re being dragged all the way to May.  Valentine’s Day displays are bad enough when we are still rejoicing in the fact that the sun is still out at 4:30 PM, an unthinkable thing mere days ago.

I remember like it was yesterday how we all wanted 2016 (a year, to take a cue from Queen Elizabeth II in 1992, which seems to have deserved the moniker of annus horribilis) to be over.  Retailers seem to feel the same way about 2017 if one is to take their rush to sell us summer so early in the year.

I haven’t even weighed myself, and I’m supposed to be motivated to buy swimwear when the temperatures still linger in the 20s more than they do in the 40s.  On Tuesday (second day of the year) we walked into Target, pushed in by gusts of wind that slipped in the most infinitesimal of openings in our garments, and encountered all sorts of striped, floral, solid, metallic, pastel-hued bikinis.  J stopped and stared.  Granted, he might have considered that the lingerie and underwear department had been moved to its deserved prime spot near the door, but he looked more like someone who wonders why he is wearing a heavy down coat, a scarf, a hat, gloves, boots, and lined pants if it’s bathing suit time.  The hearts-and-teddy bears trail that led us through the store was more coherent to him, but still…….

I went outside earlier.  Yes, the sun is out later, and comes up earlier, but it’s still heavy jacket weather in this neck of the woods.  As I type this, a cold wind hums outside, and the cats are vying for the warmest spot they can commandeer on the couch.  I see a tail coming out from under a pillow, another tail is less noticeable under a fuzzy blanket…except when it swings back and forth to announce its presence.  I have salted the driveway, taken something out of the freezer to make soup this evening, and have made sure that the shovels are handy, and there are enough blankets in every room.  The electric kettles have been informed that they will be called to action later; they seem satisfied with this announcement.

J is happy.  He doesn’t mind the weather as long as we don’t have to go out.  He didn’t really enjoy the slippery walks back from the school bus, and he knows that the upside to being at home is he no longer has to do that.  In the mornings we look out the window as he makes his bed, and he can tell at a glance what the weather will be like…he plans accordingly.  On Tuesday he requested a haircut (along with a shave, a trim of his goatee, mustache and nails,) and he wanted it very short.  He is happy with the result, but his head gets cold and we walk into the room to find him sitting like a sheik in his tent…blanket thrown over his head, smiling from ear to ear like one who has all he wants or needs.

The wound in his hand has healed nicely.  The first day was iffy because it’s never easy to get him to understand what I’m trying to do.  Once I get through the part where he doesn’t understand my invasion of his space, and my unwillingness to bend to his desire to be left alone with his bleeding hand, we get somewhere.  It helps that I explain what each item is for, and then he learns where they are stored in the upstairs closet.  By the time his bath rolls around, J is the one to take out all that is needed.  Every transition from one part of the healing process to the next requires another explanation, and so we have moments of resistance followed by moments of “I get this…let’s do it.”

We have started the year on a good note.  We hope to keep working on that.  J’s 22nd birthday is at the end of the month.  We have taken a few steps back, and a few forward, and then we’ve twirled a few times and we’re not sure which way we’re pointing a lot of the time, but we do what we can to improve things.  It is early in the year.  We still have 360 days after this one to determine where we’re going, what we’re doing, and how we’ll set it all in motion.

It’s too soon to think of swimsuits and Valentine’s Day in more than a cursory way.  Yes, time happens rather quickly, and suddenly it’s time for this thing, that thing, the other thing…in the meantime we’re focusing on now.  Now with the snow.  Now with the extreme cold temperatures.  Now with the soup and the blankets.

In the wise words of John Lennon: Life is what happens to you while you’re busy making other plans…   We plan ahead, but we savor now.  J’s a NOW kind of guy.  LATER can be too abstract for him.  He needs timers.  He needs cues.  We have learned to live that way, and we can tell that the willy-nilly cues of retail don’t cut the mustard for him.  There isn’t a timer long enough to soothe the anxiety these things he sees and cannot yet relate to NOW.  So we are his timer.  We are his NOW.  We let life happen as it comes while still anticipating (because our minds are wired and conditioned that way) the future.  This  makes sense to J, and it makes to us.

The swimsuits can wait until the snow melts and the world, once more, tilts in that direction.


A quiet-ish day…

It rained all night.  Copiously.  It has been raining on and off since this morning.  Autumn is rolling in its colors, its weather, and its need for soup and blankets.  Very soon J will be happy cuddling up to me on the couch while we watch movies…  For now, he just wants to hang out in his TV room without our interference.

What was blatant SIB a few days ago has turned into more subtle stimming.  The edge of anxiety that seemed to characterize these episodes has dulled; there is mild head shaking (Dada has witnessed it, too) and mild hitting, and the bandaids are still there and it makes him happy to see that we’re well-stocked in that department.

This morning he spent an hour putting together Green and Red envelopes, and this project filled him with purpose and happiness.  The Green envelopes have a total of thirteen bandaids in them, and the Red have eleven.  All in all, this morning J packed 218 bandaids. While I waited patiently for him to be done, he packed his envelopes with zen-like calm.  He was soothed by the thought of soothing things being available to him…

The hand that was sans bandaids for hours on end up until recently now spends more time covered than not.  Sometimes it even looks as if J is trying to communicate telepathically with the rogue hand that wants to hit him.  He looks at it intently, and he holds it gingerly.  I don’t think he is in pain, but I do think his hand “bothers” him.  At first glance you’d think it’s physical pain because of the way he holds it (almost as if it will fall apart if he doesn’t carry it gingerly,) but then you realize that he is favoring that hand because of something else that we cannot understand.  He is quite capable of opening and closing it; he uses it to hold things, to grab things, to carry things, to touch things…but he treats it with near-deference.

We continue to offer options for activities.  We continue to try to engage him.  We repeat how all sorts of feelings (even the “nasty ones” no one wants to admit they have) are acceptable and we’re here to help.  He still says he’s HAPPY, and we hope that he will start realizing that we really do mean it when we say we love him and want to help.  How convinced he is of this remains to be seen.  If there’s one thing we’ve learned over time it’s that J’s mind is a lot more difficult to decipher than we ever imagined.  We work on all these things, and we hope that we will be successful to one or another degree.

The progress we seem to have made is that the bandaids are brought to us with a peppy hop and a giggle.  It’s more of a Broadway musical “I want these” than a Kylo Ren “I want these…and I hate that I want them and that you are the ones providing them.”  The fact that the Kylo Ren quality of his requests for help has diminished greatly is of comfort to us.

We head into the weekend with DefCon boards on HAPPY.  We are fully stocked with bandaids.  We now know how to say FRUSTRATED, EXCITED and CONTENT in ASL.  We are now more accepting of the deep breaths we are asked to take before we sally forth into whatever fray is developing.  We put aside everything to focus on the moment itself…  This is all becoming easier and easier to predict…we can feel the need to take a step back coming on, and we adjust before we engage.

J knows we’re trying.  We can tell.  We are sure.  J is trying too, but perhaps is not as well-equipped as we are to succeed in the shorter term.  Our goal is to improve his coping skills before the weather turns colder and starts interfering with our ability to leave the house on a regular basis.  Boredom can cause so much anxiety for J, and cabin fever (that lovely sensation I hadn’t experienced except during hurricanes) is an enemy of our peace and balance.  So we’re working on making sure that we add variety to the mix, that we let him set his pace, and that he knows whatever he is feeling is legitimate, and will be valued and addressed with respect.

And we have bandaids.  Lots and lots of bandaids.


We go on a family vacation…

Spoiler alert: we survive.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


The vagaries of winter…

For J’s birthday the weather was lovely.  We were out there with no jackets or sweaters.  It was like spring, but perhaps sweeter because it was in January.

Cut to the past two days and the next three or four…it’s cold, people.  It has snowed, but not so much that we’re stuck.  Just enough to make a mess of roads, to freeze over, and to cancel school…

J is being philosophical about it.  Being stuck on the bus for hours a few weeks ago had an effect on him, and he doesn’t really like walking on icy roads so he knows there’s a reason for being stuck indoors.

He had fun on his birthday.  He went to watch Kung Fu Panda 3, and he had steak for dinner.  We made cupcakes, and had ice cream.  We even gave him a sip of wine.  Were it not because we are fiercely protective of his privacy I would show you his reaction.  He is NOT a fan of wine.  He immediately requested a second bite of his cupcake and said BLECH with perfect pronunciation and enunciation.  It could not be mistaken for anything other than BLECH.  Perhaps, someday, he’ll make peace with beer, or perhaps he’ll stick to soda…

Very little has changed about J since turning 21.  Well, perhaps he’s added a few more pin-up girls to his walls, but that’s about it.  I think we have altered our mindset more than he has, but I expect that’s normal.  He doesn’t fully comprehend that he is an adult, and we do.  Life, we know, slowly changes and there’s not much you can do about it…other than watch and adjust.

The next adjustment we’re facing, and it’s a big one, is TGG moving out, and helping J with this transition.  J is sort-of getting used to TGG’s absences, but seeing his room completely stripped of his belongings might cause him anxiety.  We don’t really know yet, but we’re preparing for some iffy situations in the coming weeks.

The first thing we’re going to do is repurpose the room where TGG is currently sleeping so it can be more of a hangout room for all of us.  We are going to have J help us choose what we’re putting in there, and -hopefully- this will help him adjust.  If it doesn’t, well, we’ll go back to the drawing board.

The way things are right now, we’re looking ahead to mid-May and the big changes in our family life.    We are planning a short vacation with just J, and the search for a hotel with adjoining rooms in our prospective destinations is an important aspect of the planning.  We are no longer restricted by the school calendar, and we can move freely to see the fall colors in areas far from home, or spending a major holiday elsewhere…  In a way, this is all surreal to us.  We can’t believe we have reached this point.

You always hear how life is about change, and often wonder how that is possible if your life seems so stationary.  One moment, suddenly, brings the realization that things have been shifting in a nearly imperceptible manner all along, and you are left wondering where the time went, and what you did with it.  I admit to sometimes looking around and seeing tangible proof that my/our time hasn’t been wasted.  Other times I’m left scratching my head.

I know, in my heart of hearts, that we’ve been “doing” things, and have “accomplishments.”  I don’t know how these rate in other people’s standards for “doing” and “accomplishment,” but I’m confident we’ve managed to evolve over time.  In what ways?, you ask.  Darned if I can list them.  We’ve moved, at best, at a glacial pace 9/10 of the time.  That we’re not competing with other parents to figure out whose kid is more advanced soothes my anxiety.  People have long since realized that they win hands down, and they’ve let go of the competition.

At a certain point in life, I suppose, the race to “be the best parent” is replaced with “be the best grandparent.”  Since we’ve entered that fray in a rather unexpected way, and the make-up of our extended family is not particularly traditional, we’re no even in the race.  We love our grandson.  We think he’s awesome.  We will encourage and support him.  We are there for him.  We are not going to let anyone put pressure on this disparate group of people who are involved in this child’s life to prove that he’s “good enough” at anything.  Our main concern is that he establishes a good relationship with his uncle J; this is proving tricky, of course.  J is HUGE compared to Little B, and Little B is still too young to understand that they share many interests.  That understanding will come in time, but when you look like a little mite compared to your uncle, well, the time might be a little longer than the rest of us would like.

J is, as we all know, a gentle giant.  He is Ferdinand the Bull.  He is Lambert the Sheepish Lion.  He is a sweet cupcake with a jam center.  He is kindness personified, and he is very gentle and quiet around his nephew.  Little B hasn’t yet figured out that, in this particular equation, he is most definitely the Alpha, but I’m sure that, as he approaches the Terrible Twos, he will notice that Uncle J is basically a human jungle gym with an excellent selection of toys, books and movies.

Life, as I said, keeps going whether we’re ready for it, or not.  The alternative, of course, is not to be alive.  And we actually enjoy the mess we live in, even if at times we don’t quite notice that things have altered over time, or if we notice that they haven’t.  That the kids are adults means we’re adults…amplified, and slowly shriveling.  We can deal with that, I suppose.  It does, as I said, beat the alternative…

And it snows again, and it’s cold again…winter can’t make up its mind, and ain’t that always the way.


The last school birthday party…

At 5 a.m. Dada found J sitting on his bed while looking out the window.  He was wide awake.  He was monitoring the snow situation.  We had a lot of snow last week, and J was home from Wednesday in the afternoon to 8:30 on Wednesday when school finally started after a two-hour delay.

We got a lot of snow.  Not as much as other places, but enough to impair movement around town, work and school schedules, and causing a lot of family togetherness.  TGG was stuck in a hotel across the street from work.  We would’ve missed him more if we hadn’t lost the habit of having him at home.  The first night, as it started to snow profusely, J asked, but by the morning he was totally cool with his brother’s absence.

The storm, of course, threw a bit of a monkey wrench in our plans for organizing all party-related matters over the weekend.  We did manage to go to the psych on Thursday, and J doesn’t have to return until September.  We did all the important administrative stuff, but the party planning didn’t really take off until the snow cleared, and we could make it to the store.

I spent all of yesterday cooking, and in the evening we picked up cakes, and finished packing everything.  J realized last evening that the cakes were for his class, and immediately was excited by this prospect.  When he heard the word IEP mentioned, he looked at me in surprise, and I had to explain that we would be tele-conferencing it and I wouldn’t be going to the school for the party.  The relief he felt knowing that I wasn’t going to be there to act like a mom was obvious.

He went to bed happy, and he was -as I mentioned at the beginning- obviously paying attention to the weather.  He didn’t fret when he left for school without cakes because he didn’t really notice.  I had packed the food in a basket with a nice cover.  When TGG showed up with the cakes, J’s teacher said “look!  These are for you!  What do you think about that????”  J, looked from teacher to brother to cakes and back to brother, and said a resounding BYE!  I explained to TGG, when he texted me about it, that this is obviously a sign that he’s now less cool than he was, but not quite as uncool as WE are.

On Sunday J will be 21…officially.  We still have to take him to get a new ID (one that indicates his elevated status as a person who can buy alcohol and cigarettes,) and we have to prepare for this final transition into “I’m no longer a student.”  His teacher says he has “senioritis,” and has been by turns totally cavalier about his responsibilities, playing around with his schedule, and totally devoted to whatever task is at hand.  I can related to that…I remember thirty-something years ago when I, too, felt the pull of “this is my last year in high school…woo hoo!” and then “oh, NO!  This is my last year in high school!!!” alternately.

The celebration at home, of course, will be different.  He will have presents, and a nice dinner, and dessert.  It will, however, lack the social aspect that has made today’s party at school so special.  J’s social life, sadly, is slowly inching towards dwindling until we find programs and activities he can attend regularly.  As you know, those don’t exactly grow on trees.

The teacher sent pictures of the kids singing Happy Birthday to J…with J leading them in song.  He was even singing Happy Birthday to himself while everyone else was eating cake.  That, my friends, is definitely my boy!


It is now nearly 10 P.M., and J has been happy as a lark in spring since he got home.  He has not been particularly hungry, but that is -in my humble opinion- quite understandable.  He did, after all, have cake and tacos and rice and beans, and soda.

When Dada came home, J decided that he wanted to go out, and this was a pretty good idea.  The air was cold, but we needed an outing since spending all weekend indoors.  It was nice walking around and not feeling like we needed to buy ice melt, or water because of upcoming weather.  J walked around ahead of us.  He didn’t even really turn to make sure we were there; he knows we are, and he’s confident that he can move without getting into trouble.  At one point, even though we had no eye contact, he was comfortable with this, and I felt equal parts concerned and relieved.

We went to the grocery store and walked around for a while, and had the good fortune to not find a crowd.  The last time we’d been (pre-storm,) the place had been wall-to-wall with people.  J noticed our bagger; she was a lovely girl with dreadlocks, and she was very enthusiastic and had a nice smile.  J, of course, looked at her as surreptitiously as a person with very little filter can manage.  I could tell he was looking at the ceiling so he could look out of the corner of his eye.  It was, to me, endearing, and the girl may have noticed, but she also noticed that J is not your typical creepy dude who is out trawling for chicks a the grocery store.

As we were leaving the store, J leaned into me.  He was smiling.  The look on his face said “this has been a really good day,” and I giggled a little before jabbing me with his elbow and softly emitting a Tigger roar…  It was about the girl, I knew.  It was because he is a guy who knows that there are things he is interested in, but that they’re not really in the realm of his possibilities.  It was because we understand, and because he knows we understand.

The last little boy in our little world is officially not a little boy anymore.  He needs us.  He counts on us.  He will always (as all youngest children are to their parents) be our baby, but there’s something different there, and J knows it…   And he’s cool with it.  And we’re cool with it…




Of calamitous weather and surprising turns of events…

If you have ever heard thunder when it’s snowing, you know what I mean when I say “oh, crap!”  Such was my reaction on Tuesday afternoon when, as I emptied our mailbox, a clap of thunder surprised me.  I had walked in very light snow from our doorway to the corner where I was going to wait for J.  I looked at my cell phone, determined I had time to spare, and went to the mailbox.

I ran out of there.  I told the property manager to go home, and go home ASAP.  She, who trusts me, did so just as the rumbling got louder, closer and the visibility got less and less…  The sudden-onset blizzard had announced itself, and made a grand entrance.

I texted TGG, Dada and J’s teacher: stay where you are.  This is going to be bad.

This was at shortly after two-thirty P.M.  As I hugged the wall that flanks the townhouse complex driveway, I kept telling myself that J’s bus would arrive “any second now…”

The usual group of parents started gathering as the snow continued to fall in what seemed to be a relentless onslaught.  The road started getting slicker, and shovels and ice melt appeared.  Cars started inching down the road towards our driveway, and no sign of the bus yet.  People kept arriving and clustering in groups, commenting on the suddenness of it all.

The doppler radar had announced this.  The snow was supposed to be enough for the school district to switch Wednesday’s early-release to a 2-hour delay, and yet here we were…waiting for buses that were not coming.

And then, when the usual time of arrival had come and gone, we got word through one cell-phone armed parent: the buses were stranded down the road due to an accident.  I texted TGG at work: DO NOT LEAVE!  ROADS DANGEROUS.  WAIT FOR MORE INFO.

A motorist got stuck in a ditch trying to drive away from us.  A group of the shovelers ran to help.  I got a call from Dada: where is he?  I said “to wit?  He’s stuck in the bus somewhere down the road.”

Someone said “the buses will be here in half an hour.  We need more salt.”  I handed my keys to a guy I’d never met and told him to help himself from our garage.  He came back in ten minutes with a bucketful.  Another call: it’ll be an hour.  By then it was already four P.M….a full hour and a half since I’d heard that first clap of thunder had elapsed.

I ran home to change my socks and shoes, and to check for messages from the bus.  Pam, our trusty aide, had called to say they were safe, but that they were firmly stuck in place due to two accidents on the road bookending their route.  I called her back.  J, she told me, was happy; he had moments when he felt a little antsy, but they had crackers, water and the kids were singing and trying to make each other laugh.  I told her I’d be waiting on the corner when they got here.  She said, wistfully, maybe another half hour.

They rolled up to the corner at 7 P.M.  All in all, the kids had been sitting in the bus for four and a half hours, and they had been stuck less than a mile from our driveway, but impeded by vehicles that had been stranded, two accidents and a very steep and icy hill.  As J stepped off the bus, I was standing there with my lantern, my shovel, and such a great feeling of relief that we would soon be warm and safe at home.

We traversed the icy, slippery road and made it home to doff our coats, scarves, gloves, hats, and bags, and to use the bathroom.  J had, Pam told me, had a banana, crackers, water.  The people who lived near where they were stranded had come out to offer food, blankets, and their restrooms.  The kids had been worried, but they’d kept it together.  As soon as we got home, J made a beeline to the bathroom, and I called Dada and TGG to tell them, once more, that the reports about road conditions were grim and to stay where they were.

They didn’t listen.

Dada took two hours to get less than 1000 feet from his office, and then he turned back to the warmth and safety of his workplace.  TGG, who had taken refuge at a fast food place that was closing at around ten, made his way to Dada’s office and there they sat, drinking coffee and checking the weather and road conditions.  They finally got word that an alternate route was more open, and -leaving TGG’s car behind- made their way home.  They arrived at nearly midnight.

The schools were still on a 2-hour delay when we crawled into bed, and classes didn’t get cancelled until 6:20 the next morning.  The superintendent (the Mr. Potter of Morgantown from what I heard from other parents) referred to the whole situation as “at least we didn’t say “see ya” and leave the kids behind.” Some students, mind you, didn’t make it home until midnight.

I have heard the argument that “parents should have gone to get their kids from school if they were worried.”  To that I’ve answered that in loco parentis applies, and the school has to work with what they know about the weather, and the city is responsible for monitoring potential hazards on the roads BEFORE bad weather hits.  It’s not like they didn’t know it was going to snow.

All in all, the situation has made me be thankful for all those Shackleton books I’ve read over the years.  It’s also made me not want to watch The Revenant.  I’ve also come to understand that we have, indeed, come a long way with J: on the one-month anniversary of his med being completely taken away, J sat gracefully, calmly and patiently for four and a half hours while stuck in traffic.

If that isn’t an awesome thing to discover, I don’t know what is.  He was calm and happy, and glad to be home.  And when I told him that he wasn’t going to school the next day, even though classes hadn’t been yet cancelled, he took it with a smile that indicated relief and the desire to just chill after his long wait at the bottom of the hill.

I have to say this is a surprisingly wonderful discovery: J can function without the Risperdal under rather extreme conditions.  I am grateful, happy, encouraged…and looking for a place where we can live without the ONE road in and out that might get horribly stuck in bad weather.  Not that there will be school buses next winter, but…lesson learned……..