A tree! A tree! A Christmas tree!!!!

We have, earlier than usual, acquired the annual Christmas tree.

Actually, Dada was the one who went to get it yesterday while J and I changed sheets, aired out rooms, and worked through a difference of opinions on whether he was ready to eat cheese (after his recent bout with illness), or not…

The tree came as a surprise.  Dada had sent a message letting me know that he’d bought it, and as soon as I heard the garage door open I sent J downstairs to “help Dada”.  The joy in his face was something we had not seen -in a Christmas-related scenario- in quite a while.

J has always been a Christmas person.  He likes the decorations, the ornaments, the lights, the Twelve Days of gift-giving, the music…  He had, however, lost his yen for participating in the tree-decorating routine.  He wanted the tree decorated, but he didn’t want to be in the thick of it as it happened…

Yesterday afternoon he couldn’t wait to get the lights on the tree.  Last night he wanted to rush through dinner to decorate the tree.  We thought he was going to leave the room, and were pleasantly surprised when not only he didn’t leave (thus delegating the tree-trimming to us oldsters) but stayed and started grabbing ornaments and placing them where he thought they’d look best.

This was all done with a smile, giggles, and Christmas music playing in the background.  It wasn’t done in a hurry, and he even stopped to pose for photos, and wore a Santa’s hat while sifting through the boxes.

Of course, my friends, we hadn’t MEANT to decorate the tree last night.  We had brought it into the house so that it would be here ahead of the bad weather they’ve predicted for our usual tree-buying excursion day.  That J became enthusiastic about the whole thing was a happy development.

Later in the evening, as we relaxed after cleaning the kitchen and taking our showers, J emerged from his TV room once more and went downstairs.  Dada followed him to make sure all was well, and found our son with a canister of tinsel in his hand.  On the tree went the tinsel, with more smiles, lights, music to punctuate the process…

Twelve Days is just around the corner, and the recent chaos has prevented me from being fully ready for it, but J is ready.  J is happy to be home, feeling better, and having his Christmas tree in the house…

It feels good……..

Another Twelve Days come and gone…

We treated Christmas Day as we do any other Sunday.  Of course, I admit this was not intentional.  It’s not that we “missed” Christmas, but J had an early morning meltdown and we decided to turn the dial down and do Sunday as Sunday is usually done.  After about an hour of pure, unadulterated, overwhelming strife, J calmed down and we threw a little Christmas in here, and then a little Christmas in there until we had a nice Christmas dinner that passed for Sunday dinner.

Yesterday we braved the “Boxing Day crowds” that amounted to two people ahead of us at Target, and three at the arts and crafts store.  The line behind us at each store was non-existent.  All the chaos witnessed in other necks of other woods was absolutely absent at the time we left the house, and J was happy and he came home to relax.

The Christmas morning meltdown is easy to understand.  Dada had been home since Wednesday evening, a mini-vacation, and J was confused.  On Thursday morning we went for a medical appointment (mine,) and then for a very small bit of shopping at the grocery store.  On Friday we went to the movies.  We watched Rogue One.  J leaned back on his chair, munched on his popcorn, and smiled contentedly.  He just enjoyed the notion of being at the movies.  On Saturday we went out for a bit, and then TGG came with his family.

This was the first thing to throw J off.  He didn’t leave his room, but TGG went in with the kids, and that was out of J’s comfort zone.  We had a quiet Christmas Eve with our Twelfth Day presents, and then we went to bed.

Christmas morning didn’t have chiming bells.  It had a growl overheard through the baby monitor.  Then we heard the thumping.  We did our best to defuse the situation, but meltdowns have to run their course, and this one took a while.  By noon we had sort of evened our keels, and the rest of the day seemed better.

Today Dada went back to work, and J and I started putting away the Christmas tree ornaments, the lights, and the Rudolph the Red-Nosed Reindeer and Charlie Brown Christmas accoutrements.  The Christmas tree forest, the village, the train tracks (which have grown and grown) remain.  The rest is slowly being reeled in to make way for the New Year, and to make way for the Three Kings’ Day tradition.

I’m sure this portion of the year will be a bit of a slippery slope.  The holidays overwhelm just about everyone.  They also depress a lot of people.  We are doing our best to help J cope with the anxiety he might be feeling.  We understand that, irrational as it may be, he has trouble seeing TGG with a family of his own, and we can try to help him understand, but that doesn’t mean he will be able to maneuver through the emotions with ease.  The best we can do is try.  The best we can hope for is increasing degrees of success.

So we work on helping him, and helping ourselves in the process.  Now that the actual Christmas holiday is over, we can start taking things back to the daily routine that soothes him, and make adjustments from there.  He was happy today gathering up the tree lights and putting them away in the new storage box we bought.  The little tree (ok…the branches cut off from this one) in his room will go away today, too.  He might want to keep the lights, and we’re fine with that.  Light seems to be a soothing thing for J…especially when he can control it.

J was happy with his presents.  He tried taking some of ours, but we managed to prevent him from achieving his purpose.  He enjoyed helping in the kitchen.  He had fun with the tree and the lights.  He liked (LOVED!) decorating a gingerbread house.  He stole some of the candy, but that was to be expected.  All in all, aside from being overwhelmed at a certain point, he did great, and he had fun.

But we learn something new every year.  We figure something out with each passing holiday season, each run-of-the-mill month and day.  We are in a perpetual state of learning what we need to improve or change.  Yesterday, little clearance-shopper that I am, I found a little paper mache cabinet that has 25 drawers…and I will decorate it, and in each little drawer I will put an activity of each day leading up to Christmas next year.  I will mark the days when Dada will be home.  I will put little things that J can enjoy…a movie to watch, a craft to make, a task to complete to get us ready for Christmas.  You’ll see…I’ve figured out that some of the randomness of the season upsets him, and I will work on giving him a whole set of anchors to choose from.  That’s my goal, anyway.

We have plans for 2017.  We are hopeful that they will come to fruition, and that J will benefit from them.  For the moment, this last gasp of 2016, we try to organize our little household to advantage for all.  We try to slip into the usual routine so our boy can have his center…  That his center (and ours) is slightly off-center is fine.  The important part is that there is a center…regardless of where it is.  That’s goal.  That’s the aim.  That’s the all-important purpose of this game we play day after day.

We survived Twelve Days…a little bruised, a little humbled, but we survived.  Our little ragtag band of desperadoes has pulled off another holiday, and is getting ready for the next, and the one after.  It’s all we can do.  It’s all anyone can do.

And off I go to more chores supervised by (who am I kidding, right?  HE is the boss) J.



Last Day of Autumn…

Winter does not officially begin until tomorrow.  All this cold weather has been a tease, a come hither look from Mother Nature.  My bones and joints don’t appreciate it, but there it is…unless we move to a tropical climate, this is now the story of my life.

The first seven days of Christmas have been a success.  We have enjoyed the quiet pace, the relaxed mood, the adding tracks to the set-up in the Christmas village inside the tent…and trees…and assorted Lego concoctions that give interest and texture to the whole shebang.  J is happy.  Every time I bring another thing to put in there, he cranes his neck and, from the safe perch of his couch, gives instructions on what to do next.  Passenger cars have been added to the train, a rather large tree sits in the middle with lights rising up from the base and getting lost in the “sky.”  Five minutes sitting on the floor looking at all we have put in there are guaranteed to make you happy…

On Thursday, the 22nd, we will make the pilgrimage to the movies.  Our schedule for the week is thrown off because of Christmas Eve and Christmas Day.  J gets his Saturday and Sunday outings on Thursday and Friday.  We adjust to make his life more balanced, and hope that this is enough.

We think what we’re doing is working.  The meltdowns and SIB have dissolved into near-nothingness.  If he’s upset or anxious, the reason for his mood is easier to determine.  It is also easier to correct.  At five a.m. I hear him get up, go to the bathroom, and then stop at the hallway closet to get fresh bandaids.  He changes them himself.  No muss, no fuss.  J is, once more, in a place where he can exert some control, and this makes everyone happier…

Our fine-tuning of his diet is sort of working.  You don’t gain weight in one day, and you don’t lose it in one day either.  We are running, on average, about 2 miles with the Wii, and we are doing calisthenics that are helping improve J’s balance.  Still can’t get him to lay flat and not complain, but I respect this difficulty and work around it.  Some of his workout looks like those public television workouts for elderly people who have mobility issues, but a mom’s gotta do what a mom’s gotta do.  It is better to do a bit than to not do anything at all.  That’s the idea I’m latching on to, anyway.

Today I am hoping to do some baking.  I say hoping because I keep putting it off.  My hands, see, are not what they used to be.  The doctor has chosen fibromyalgia as my malady, but we are not sure that this is correct.  The idea of lupus was thrown out the window because I am no longer a woman of child-bearing age.  We wonder why not one doctor has X-rayed my hands to see if, perhaps, there’s some sort of arthritic thing going on.  Of course, no matter what I say -and I say plenty- no specialist that has dedicated years and hundreds of thousands of dollars to getting trained to be eagle-eyed for such things will acquiesce when a person with merely a M.A. in Liberal Arts says “are you sure there’s nothing wrong my hands????”  I work around the quirks, but it’s not easy: I can no longer make hollandaise sauce (because the hands “go” in mid-stir and so does the sauce. I can no longer embroider, color, sketch, or play the piano.

OK, I never could play the piano, but if I had been able to, I would not be able to do it any longer.

So my “hope” that I will get to make some baked good is in the incipient stages. I am waiting for the time when my hands are at their best…and this, fingers crossed, will coincide with J’s desire to make biscotti.  We’ll see.

The only thing troubling J right now is his tummy.  He is not sick, but he is not digesting well.  Yesterday I had to explain the concept of “constipation” to him; this is something I’ve done before but didn’t seem to click at the time.  I think now he’s getting it.  He has stated he is uncomfortable, and has accepted the remedies I’m offering.  I’ve explained he has to be patient because, sadly, these things don’t work immediately.  I explained that cheese doesn’t help, and he was not particularly amused by this information.  I explained that water helps…he understands this, and is making sure he drinks enough.  In the meantime, we wait, and he tells me (which is better than being angry and yelling, or hitting himself) if he is going to the bathroom.  I told him that, because he’s having trouble, I will follow closely, and wait to hear if he needs my help.  We are both mortified, but we are willing to work together to solve his issue.

I was thinking about the weirdness of our home life as I sat in the hallway this morning.  I was pondering why people who haven’t seen J in over fifteen years cannot fast-forward that last image they remember and accept the one I describe for them, or the one they see in pictures.  When I say “I cannot talk right now, J is in the bath” they imagine a child of four, sitting hip deep in bubbles.  No one thinks of the adult with hair all over his body, hands the size of holiday hams, deep voice and imposing physique.  I am not bathing a child, I tell them…I am bathing an adult.  It doesn’t quite sink in for the most part.

Of course, this is small potatoes compared to the bigger problems of the whole of mankind.  This problem, in fact, we can manage better because the anxiety and SIB are under better control than they used to be…

And so we move on to Actual Official Winter, and roll gently (over a bumpy road) to 2017…


Another tradition goes bust…

Twelve Days is eight days away.  Wrapping packages has been tricky this year because I no longer have the luxury of time alone to do it.  Yesterday I encouraged Dada (who has been known to wrap things at the last minute) to spend an hour wrapping.  It took him two. Same amount of packages as every other year, but it is an established fact that Dada will never qualify for the World Origami Championship Tournament.

This morning, in a flurry of activity and tape, I wrapped Dada’s presents.  I didn’t want to risk J’s because he was in and out of his room, and if he’d walked in we would have had an international incident.  Because Twelve Days presents are sometimes “combos” it takes me a while longer to put them together than just simply grab one and wrap…plus they all have to be stashed in a certain order, and placed in a way that he will be able to see them when he goes in to organize my closet (an activity he engages in surreptitiously and without malice or intent to spy on presents,) or to hide some item he doesn’t want me to find (the recesses of my closet…he thinks I don’t look there ever.)  J likes to open the door, turn on the light and look at the wrapped presents.  He doesn’t open them.  He doesn’t touch them.  He sees the label on the shelf that indicates where his presents are located (I forget, people, which shelf I’m supposed to be looking in when I’m in a hurry,) and he smiles.  If there is one person I know wouldn’t want to ruin Christmas, it is J…he might pat his Xmas stocking, but he doesn’t peek in it either.

As far as gift-wrapping is concerned, I might have to call our sitter and have her give me an hour to wrap and stash J’s packages because we are usually occupied in other tasks during the day.  I am sure a twenty dollar investment is well worth it if I can get this done, and J can start sitting in front of the closet smiling at his upcoming gifts.

On Friday J and I spruced up our Christmas wreath.  Namely, we put fresh battery-operated lights on it. This is the Franken-wreath.  It is a twig-wreath that we’ve had for about ten years.  On it sits a smaller wreath made of felt hearts stuffed with batting that we made seventeen years ago.  The previous string of lights had petered out after five or six years of being on there.  J had chosen a rather large bow at the crafts store, and we added it to the existing arrangement.  Antoni Gaudí would probably approve…but you never know.  On Saturday we put together the garlands and lights and bows J chose for outside.  I can say without a hint of modesty that ours is possibly the tackiest Christmas display in the neighborhood.  People have gone with fake “natural” garlands, with red lights, with simple strings of lights.  J went all Vegas Showgirl in the 60s.  The only thing missing out there is a healthy layer of frosted blue eyeshadow.  A gold and white garland is wrapped around the railing, a white garland is on the top portion of the railing, and there is a red and green wire garland (holly leaves and such) strung along the white one.  The lights, my friends, are jewel-toned.  Each post has a small wreath made of the same red and green wire garland (he simply didn’t unroll them,) and a big red bow.  The Good Taste Police will soon be coming to knock on our door.  As if this wasn’t enough, J has two more strings of jewel-toned lights that will be strung on the ceiling of our porch…  It is safe to say that there is not even the slightest possibility that we will win “best Christmas display,” but J had fun choosing his bits and pieces.

Yesterday we started putting together the Christmas Tree Forest and Village in his tent.  It is looking quite nice.  Crowded, but nice.  Thomas the Tank Engine and his track still need to go in there, as do the plushes for Rudolph the Red-Nosed Reindeer (Clarice and Rudolph lost their antlers on the very first night they came into our home many, many, many Christmases ago,) and the A Charlie Brown Christmas figurines.  Crowded might be an understatement when we’re done, but J is very happy that we’re doing this.

The one thing we have not wanted this year -to the point of yelling, and then banishing it to the garage and into a plastic crate- is good ol’ reliable Inflatable Santa Snoopy.  We cannot remember exactly what Christmas brought Snoopy into our home, but it had always been a hit with J, and he insisted on having it either in the TV room, or in his bedroom.  Inflatable Santa Snoopy was to J’s Christmas like a banana is to a banana split: take it out and there’s no Christmas…  The soothing rattling of its little inflating mechanism was part of the soundtrack of the season.  It is no more.  He didn’t want it inflated.  He didn’t want it in his room.  He didn’t want it in the house.  He didn’t want it where it could be seen.

Since that staple of Christmas-dom has been rejected (quite vocally,) we are hoping that no objections will be made to buying a Christmas tree.  So far we’ve seen no enthusiasm for them when we go to the grocery store or drive past the Christmas tree lots around town.  Since cold weather is settling in later in the week, we are hoping to get our tree by Thursday.  I have a doctor’s appointment, and Dada will be taking J to find a tree while I’m getting checked out.  I am going to have J help me bring the boxes of ornaments down to the sitting room, and maybe that will be a good indication of how close we are to Tree Time.

Yes, things are definitely changing.  We are starting to understand that J has evolved, matured, regressed, moved on, changed, transmogrified…and we are starting to accept it with more ease, with less of a painful pang.  On Saturday he had a bit of a meltdown when we got back from our shopping, but by evening I’d figured out what it was about: we ran into our former property manager.  J used to see her just about every day.  We’d stop at the office on the way home from the bus; we’d go in to visit with her when we checked the mail, or we’d go for a short walk just to say hi.  She used to visit us.  She was a presence.  And then she found a better job that was healthier and happier for her, and we hadn’t physically seen her since March.  There she was, suddenly, in the movie section at Target, and J was happy to see her, and said hello, and did his whole outing…and then came home and had a massive meltdown.  It didn’t click for me until later in the evening that J must’ve suddenly been reminded of yet another constant that had altered for him this year: his brother, his nephew, his teacher, his classmates, his school, his bus driver and bus aide, and our friend, the property manager.  I felt like a dunce because I had been frustrated with his meltdown, and I should’ve put two and two together.

That’s where we are on Monday.  Santa Snoopy is a no-go, and mother is promising herself to not be as clueless.

Seems like a fairly balanced start to the new week, but it’s early days yet…….


Hello, December…go easy on us.

It is a cold, dreary morning.  The cats are curled up and a stiff breeze is blowing outside.  The world looks, for the most part, gray and brown, and there are signs that it might rain later.  The most cheerful sight from outside that greets my eyes is our rosebush.  The fairy lights we have on a sensor are on (it is that gloomy out there,) and there is one rose about to open.  Yes, I know…I probably should have trimmed the rosebush weeks ago, but I saw buds and it felt wrong to have at it with clippers.  And now we have roses…

J was up early this morning.  Once more he went to the closet and took out the bandaids he needed.  Once more I got up and checked on him, and he was glad to have help with what he was doing.  I have a theory about his being up before six a.m. today: since he was lazy yesterday morning and all he got for breakfast was his yogurt, today he wanted to make sure he was up early and got eggs, ham and toast.  My son, the strategist!

Today, whether he is in the mood for it, or not, we are walking to the mailbox.  It is rent day, and we will bundle up, arm ourselves with an umbrella, and head to the office to drop off our checks.  I will time this to not coincide with every dog’s walk around the neighborhood.  My rant seems to have worked: I see dogs on leashes, AND people glaring at me, when I go outside.  I can deal with the glaring as long as the dogs are as they should be.

With December finally here, we are breaking out the Christmas lights and other decor.  Brian Setzer has given us the green light.  That is: J has been listening to The Brian Setzer’s Orchestra Boogie Woogie Christmas since late last night.  During dinner he wanted to watch some Frosty the Snowman sequel on Netflix (it was horrid…but he thought it was funny.  No, we don’t know if he was being ironic…hard to tell with J.)   If that isn’t an indication of Christmas-readiness, I don’t know what is…

J loves inventory time.  He loves looking at all the lights, extension cords, garlands, bows, etc.  He won’t put anything up TODAY, but he will make sure we have all we need.  This takes some negotiation; J is of the opinion that there are never enough strings of lights, and I am of the opinion that less is more.  If you could see his bedroom you would understand what I mean: fairy lights go around the perimeter of the ceiling and some trail down the wall to frame Marilyn Monroe, and his headboard has two different strings of battery-operated lights.  If you add to that the lava lamp and the plasma globe I’d say he’s pretty much covered for lights.  That will not stop him from trying to buy and install more.  They soothe him, I think.  If it’s soothing, I’ll say yes…but there has to be a limit to the amount of lights per square foot.

Since it’s getting dark earlier, dinner has been moved up to pretty much within an hour of Dada getting home.  That leaves us with plenty of time to do other things.  After dinner, J likes to hang out for a bit and we clean the kitchen and maybe watch a show on Hulu or Netflix.  Yes, we watched Gilmore Girls.  Yes, we were deflated by it.  Yes, we all hate Rory Gilmore now, and think Emily is the only character who has actually evolved.  We watched The Crown (John Lithgow needs every award they can give him for his Churchill portrayal, and I apologize for all the horrible things I predicted about Matt Smith as Prince Philip; Clare Foy is awesome…,) and The Musketeers (oh, Athos…what have they done to you, Athos?  They need to apologize to Dumas…you were doing GREAT, and then you turned into someone’s teenage dream…ugh…)  We have managed all 18 series of Midsomer Murders, have revisited Inspector George Gently, cried over Call the Midwife, loved Miranda, Derek, Detectorists, Vicious and The Mindy Project.  We are watching Speechless (which manages to reflect some of our reality back at us, but we really don’t know why Minnie Driver always looks flawless, is well dressed and has such awesome hair, and how do they afford all those clothes…and where do they STORE THEM????)

After the post-dinner break, depending on J’s mood and willingness, we do a puzzle, a craft, or just hang out until he’s sick of us.  Tonight, sick of us or not, we are working on his Christmas tree forest.  Last year we added two trees, and this year we’re ambitiously aiming for three more.  These are papier-mâché trees that we cover with scrapbook paper we have clipped into fringes, and we layer the different patterns until we get to the top.  A lot of paper is involved.  A lot of glue is involved.  A shower is needed by the end, but J loves his trees, and criticizing our handiwork.  It’s a win-win situation.  We found some cardboard houses we can put together by folding, and we’re adding those to the forest.  All those battery-operated strings of lights that he has asked for and that have yet to find a home will be used in this project.  And it’s all going (wait for it!) inside his tent…yes…he has a tent next to the ball-pit.  The tent is mainly for ME to sit in if he wants me in the room but not looking at him…it’s becoming the location for the forest.

With the First Day of Christmas less than two weeks away, we are in for a lot of fun after-dinner-break activities.

NOTE: If you are new to reading this blog, please, be advised that Twelve Days in this household is not following the traditional Twelve Days of Christmas calendar.  We are fully aware (sticklers that we are about facts) that the First Day of Christmas is December 25th, but many years ago we decided to alleviate the horrible anxiety Christmas morning caused our beloved son by dispensing one gift a day for twelve days (starting on the 13th,) and leaving Christmas morning for more relaxed, less overwhelming explorations of the contents of Christmas stockings.  That is: Christmas morning is for “stucking stoffers.”  You read that right.  Stucking.  Stoffers.  Yet another family tradition…this one dictated by a tired bilingual Autism mom who had not consumed enough caffeine to properly pronounce words in her second language.  Consider yourself up-to-speed in a family quirk which is an offshoot of Autism.  Autism: making life complicated today, tomorrow and always.  

Well, after-breakfast break is over.  We have a rent-check to deliver, a wreath to dig out, lights to count, ornaments to yea or nay, and an argument over how to load the dishwasher to get through before our workout and lunchtime.  These things won’t get done without our willing/unwilling cooperation.  I am sure we’re all ready for Buddy the Elf while doing dishes and folding laundry.

Let the “Season” begin…officially.  Not that dragged-by-the-hair, forced-down-our-craws Christmas that assaults us whenever we step into a store, or brave turning on the computer or TV.  (HOW many Black Fridays and Cyber-Mondays can one society have without becoming redundant????)  We are ready for the Christmas with the unbelievable blooming of roses when it’s freezing outside.  Yeah, that’s happening.  How badass is that?  December, I tell you, i something to behold!


On the Ninth Day of Christmas, all is quiet and happy all over the place…

Things are going well.  The med is gone, baby, gone, and we’re definitely hanging in there.  Four and a half pounds lighter, and still hanging in there.  A little obsessed with the band-aids, but hanging in there.

Is J a little antsier?  No, not really.  He’s a little more prone to boredom, but he’s also a little more enthused about helping.  He waited patiently for the time when we actually could leave for the theater to watch Star Wars The Force Awakens, and this even though we were supposed to go the (we discovered suddenly) sold-out 10 a.m. show…he also patiently waited when he realized that the 1:50 show was sold out, too.  He was ok with coming home, putting groceries and purchases away, and eating lunch before actually heading out to the theater with a rather long, drawn-out stop at Barnes & Noble.

All this sans Risperdal…

If you had told me J wouldvpatiently wait through reversal of plans after reversal of plans…  Yes, he’s picked at his chin a bit more than usual, but he LISTENS when I tell him we have to wait a little longer.

On the  “not-quite-good” news front, the psoriasis made a comeback, and this time it was next to J’s goatee.  We thought, initially, that it was razor burn, but as soon as we recognized the characteristics, we applied the lotion his doctor prescribed and the patch disappeared in short order.

Of course, I have to point out that first I had to FIND the lotion.  J, seeing a prescription label, assumed this was something one drinks and, based on experience, assumed it would taste like crap and hid it.  He hid it along with my wrist stabilizers (which I’ve been needing and wanting,) and several other items that -to him- are not “friendly.”  Once I explained that the prescription was for that patch on his chin, he allowed me to take it out of the box, and put it in his bathroom.

We are negotiating a lot more.  Today, for example, we negotiated chocolate chips for every task he completed while we baked biscotti.  I’ve never had a more avid helper, or one who can bounce so easily from dark chocolate and semi-sweet chocolate chips with such alacrity.  He was disappointed when I told him we were done with the baking for today, and accepted his chocolate chip-less fate with aplomb.

By now, as you may know, we are deep into the Twelve Days.  It is, as I type this, the aftermath of the Ninth Day of Christmas, and this year J has actually sung the song with us…if he doesn’t raise his voice, I can see he’s enunciating rather nicely, but we -sadly- drown him out.  He’s not thrilled about Miss Zelda’s eager participation in the ritual, but he tolerates it as long as the cat sits next to Dada and doesn’t attempt to approach J’s present.  The fact that we now have a cat that, regardless of where she is in the house, hears The Twelve Days of Christmas and runs to arrive in time for gift-giving is yet another sign that this is not a run-of-the-mill household.  If she has not left the room for any transaction in another area of the house, she is calmly sitting under the tree, waiting for us to join her…

The weather has been kind…sort of.  When it’s cold, it’s very cold.  The rest of the time it’s basically gloomy or rainy, or it rains.  Winter begins now, I remind myself, and January will make up for all that we’ve missed so far.  I get the feeling that snow days (or harsh weather days) will abound.  In my efforts to over-prepare, I might have had a hand in the persistence of warm weather, and I think I (and everyone else) will pay for it in the coming weeks.

But J is happy.  J is calm.  J is handling himself beautifully, and I cannot help but be hopeful about everything else.  I will not go out and buy a lottery ticket anytime soon, but I will definitely savor this uptick in goodness that comes from the med being gone and J exercising his most mature self in the process.

I can’t ask for more.  Well, I could, but that would be the same as being ridiculously greedy, and we want to spread around the good stuff to those who need it…

We are happy being happy with the happiness we have…we hope some of it comes everyone else’s way too…



Crashing and burning our way through the Twelve Days…

The med is gone.  Callooh callay, o frabjous day!  Like gone gone.  Like we don’t miss it gone.  Like aside from one small outburst related to not getting his snack, getting rushed into the bus, and not having his Christmas presents to bring home right then and there, J has been nothing more than slightly antsy…

But, boy, have his Twelve Days sucked so far.  It will start getting better tonight, but I simply had to not give him the really cool stuff when he might be super antsy and super ready to growl…  He likes his new slippers from L.L. Bean, but -then again- who wouldn’t love those?  And he’s accepted that he now has TWO flat caps he can wear, and one of them is green.  The other stuff he hasn’t found particularly exciting has been hidden in the TV room…or put, face down, on the bench in his bedroom.

Tonight it gets better because it’s a bag full of cool t-shirts, and J LOVES cool t-shirts.  Tomorrow night the movie extravaganza begins, and I will become a very popular girl until the Twelfth Day is done and over with…

I admit that I’ve tried not to make the transition TOO easy because then we wouldn’t really know if J is OK, or if he’s just so complacent about his circumstances that there’s no need to act out.  I don’t want to create an environment in which J doesn’t have cause to be irked, but rather teach J that when one is irked, one works through it.

So far, so good.

Today, first day of Christmas break, J actually woke up early, but hung out in his room until nearly 8 a.m.  If that doesn’t have a hint of Christmas miracle in it, I don’t know what does.  TGG had him help with chores (yet another Christmas miracle-like occurrence, people…TGG is being nice and helpful,) and then we worked on a paper garland before sitting down to lunch.

The mood has been good.  He isn’t a barrel of laughs 24/7, but he is happy and easily redirected when he’s starting to look bored or annoyed.  The house has been cleaned, and J has been supervising just enough to prove that his personality is unchanged by the absence of the Risperdal.

Perhaps Dada was right when he said “but he’s taking so little of it!”  Perhaps we managed to taper off the med in the wisest way possible, and we made the right choices at the right times…

The truth -the whole truth, and nothing but the truth- is that J still has “issues,” and that will never really change.  J is autistic; J has moderate mental retardation; J is non-verbal.  J will always have challenges and problems that might seem insurmountable from time to time.  The truth -the whole truth, and nothing but the truth- is that we are still wearing enough band-aids to make it look like there is something REALLY wrong with our hand, and there have been moments when J’s skin has become so dry that we’ve had to apply ointments to restore his skin to its normal state.  The truth -the whole truth, and nothing but the truth- is that we will always have something to address, something to do, something to tackle…and that’s fine.

The Risperdal was a step in a longer, more winding road.  We had issues, major ones, to contend with at the time when the Risperdal came on the scene, but those issues are (for the most part) resolved.  Will there be another actor entering the stage to perform a crucial role for a time?  That’s always a possibility.  No one can guarantee that the current state of balance and calm that J is experiencing will be permanent.  Regression happens, and it doesn’t just come in the shape of forgetting how to complete a task unassisted.  Sometimes regression comes as slipping back into harmful behavior that cannot easily be redirected.

You will, I hope, forgive me for having a tangent-prone mind.  I have often found myself reciting (in my mind, of course) Robert Frost’s Stopping by Woods on a Snowy Evening when in the midst of some autism-related conundrum.  I know…one has nothing to do with the other, but I did tell you just now that my mind is “tangent-prone.”  The poem goes (and forgive me for foisting it on you):

Whose woods these are I think I know.
His house is in the village though;
He will not see me stopping here
To watch his woods fill up with snow.

My little horse must think it queer
To stop without a farmhouse near
Between the woods and frozen lake
The darkest evening of the year.

He gives his harness bells a shake
To ask if there is some mistake.
The only other sound’s the sweep
Of easy wind and downy flake.

The woods are lovely, dark and deep,
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.

I guess it’s just the whole thing about promises to keep that pulls me in, or maybe it’s just the cadence of the lines floating in my mind.  Somehow, I’ve often found myself facing a tantrum, a meltdown, a crying fit, an obstinate bout of grunting while Robert Frost bounces around in my brain.

OK.  My thoughts don’t always lean towards the loftier sentiments of Robert Frost.  I have, on occasion, confronted a conundrum while reciting The Grand Old Duke of York to myself; I have also asked the other people in the room to join in for a hearty rendering of Witch Doctor, and this strategy tends to confuse and delight J into calming down…only he knows why this is effective.

So, there you are, we are hanging in there quite successfully, and the Twelve Days of Christmas are about to improve for all of us.  The temperatures are nothing like autumn, and certainly nowhere near an approximation of winter, but we are undeterred…

‘Tis Christmastime…

and we have miles to go before we sleep…



Day Three of the Big Chill…

Beware warm January trends that require no jacket, and give you the impression that this winter will be a piece of cake.  Fruit cake…heavy, dense, impossible to digest, best used as a doorstop fruitcake is what you’ll probably get.  I speak from experience…

I don’t know how many times I overheard Dada saying “how about that?!  Not a flake of snow all December!  It’s been downright warm compared to last winter!”  If there is one thing I’ve learned over years of being with this man is that he SHOULD NOT be allowed to talk about the weather.  Every single time he comments on how it’s too warm, too dry, unusual for the time of year, BOOM!  We get a triple-dose of whatever should be expected, and the weather forecast turns into an exercise in grotesque hyperbole.

On Tuesday morning we got Kierkegaard’s call and school was delayed for two hours, and then canceled.  Tuesday evening we got the call delaying school for two hours, and at six-thirty a.m. yesterday it was canceled.  Last night we got a THREE hour delay.  We all exchanged looks and said “that’s a closing waiting to happen.”  This morning, with the wind howling and the forecast calling for subzero temps, we looked at the map our local weather guy puts up with color-coded closings and delays.  Amid a sea of red, indicating school districts that closed their operations for the day, two or three yellow areas indicated hold-outs clinging to their 2-hour delays.  We couldn’t help but wonder if superintendents sit watching the screen to see who will be next to cave, and who will be the last superintendent standing.  Do they give out awards at the end of the school year?  Judging by the stubbornness that leads to a three-hour delay on a morning when the temperatures are expected to hit -20 with the wind chill, one would suspect this is a “thing” among school district heads.

J is taking the whole thing in stride.  I think last year we experienced enough school closures to teach him that this is par for the course where we live.  He asks for his Bus Song, but he can tell when we’re singing half-heartedly, and we observes who’s calling on the phone’s Caller ID, and our movements around the schedule board.  With a sigh of acceptance, J moves to gather laundry, take out puzzles, and line up chores we can do…if that’s not maturity, I don’t know what it is.

And, speaking of maturity, tomorrow is going to the psychiatrist day and we’re talking about reducing J’s med one more time.  I think we’re ready.  We will have, of course, a few days of rough-patch behavior, but we don’t expect (fingers crossed, knocking on not-compressed but ACTUAL wood, doing the sign of the cross, muttering a fervent prayer and wishing on a star) any difficulties aside from the usual “why is my body chemistry slightly off????”  I’ve read the notes of our previous forays into reducing the Risperdal, and I’m confident that we’ll do well…

(Let those not be famous last words, please…)

The truth is that J is maturing, and that it’s a joy to witness this.  It’s also true that I am grateful that J is becoming more and more his own person; as I age, a little of the pressure is taken off me and he takes control of more of the things he wants and needs.  At the same time, some of the feelings of “I could be doing more” return.  I think every parent experiences these feelings, and I think parents of autistic individuals know these feelings all too well.  I know J likes being by himself; it’s easy for him to find entertainment, and he relishes being so self-contained.  We all do our best to encourage him to spend time with us.  I know that J is ready for “togetherness time” when he shows up offering his DVD of Daddy Long Legs, and TGG has encouraged him to do the same with Danny Kaye’s Hans Christian Andersen.

A few mornings ago, TGG saw a bit of Hans Christian Andersen on TV while he had his breakfast before going to work, and I told him that I’d bought it for J for Twelve Days.  TGG, of course, acted as if it would be a supreme chore to sit through the whole movie, and dragged his feet when J took it out to play.  An hour later I walked into the TV room to find the boys cuddled under an electric blanket and happily watching the movie.  I brought a bowl of popcorn and they looked like the two little boys who used to watch Toy Story together so many years ago…and then J kicked me out of the room because, well, I’m mom, and mom isn’t allowed to interfere during “togetherness time” between the brothers…

For Twelve Days, TGG got J a Five Guys gift card, and J was over the moon with joy at being able to eat there (because he loves the food and the music they play,) and because TGG explained that they’d be using the card together.  On the Sunday after Christmas, J climbed the stairs to TGG’s room and announced that they were going to lunch.  This made us all laugh because it was totally spontaneous.  The following Saturday the same thing happened.  TGG says that not only is J well-known among the employees, but he also has a favorite spot from which to watch the food being prepared.  Once they have their order, J chooses a table and they eat and hang out together.  It’s nice to know they enjoy each other’s company, but can function individually the rest of the time.

In other news, we’re considering the possibility of traveling with J to Puerto Rico.  I have to visit my parents, and this requires going by plane.  J hasn’t been on a plane since 1999.  The world (and security measures) have altered a great deal since then.  The eternal quandary of how J will deal with a situation that is run-of-the-mill for others is always in play, but…we’ll see…

Before any of that, of course, we reduce the med…again.  We will brave the cold, the mild anxiety of being in the doctor’s office, and we’ll see what happens next…

Stay tuned…


The bumpy road to Christmas…

I will confess that I am completely un-Christmas-y this year.  I can’t really explain why, but it’s true.  Suffice it to say that when we brought our tree home on Thursday evening we discovered that the base had a crack (that hadn’t been noticeable before we started pouring copious amounts of water,) and more time was spent sopping water up from the carpeting than wondering when we’d have time to decorate.  The tree’s trimming got done at 4:30 PM today, and we did First Day presents at six…

Yes, my friends, it is THAT kind of Christmas.  The Christmas we’re not yet ready for, and the Christmas we’re trying to grab by the ankles and get pulled up to the sky by…

Last night I almost was into it, and then something happened that threw me off.  Something on top of the ten other things that have been dragging me down.  Let me start with the first week of December and work from there.  TGG calls me one morning from work, and this is unusual because he calls at lunchtime unless something has happened that isn’t particularly good.  Well, this call is to tell me that he has had a significant amount of money (ok, significant in OUR world…I’m sure to other people it isn’t that much) put on hold in his checking account, and that the bank has informed him that it’s due to a debt of OURS.  Long story short: a state where we lived for only half the year ten years ago claims we never filed taxes for those six months and decided, all this time later, to get their money by hook or crook.  I went into our files and there is the copy of the tax return, signed by Dada and myself, with copies of the W-2s and everything else.  Further exploration demonstrated that every other tax return we filed that year went through without a problem, but it seems that that particular tax return and check either didn’t make it out of the P.O. where we dropped it off (in the midst of the near-to-midnight April 15th rush,) or never got processed.

If I told you that I spent over seven-and-a-half hours either “on hold” or trying to get someone to talk to me about this, would you believe me???  Well, I spent more than that amount of time.  And I barely got any information because, well, I am not the taxpayer.  Yes, ladies and gentlemen, the state revenue agency I was trying to deal with refused to give me any information because I am not my husband.  This prompted a back and forth of “hey, I’m the one who can call because of the time difference, and I’m the one who is holding the checkbook in her hand to pay this thing,” and a lot of “I’m sorry, ma’am, but we’re not authorized.”  At the height of my annoyance I informed them that I was going to pay the amount that was on hold in the checking account, and not a single penny more…and that the check we’d originally mailed to them was for a higher amount…so there!

Dealing with the bank was ever so slightly easier, but still a lot of time on the phone waiting to figure out how to undo the whole “hold” thing.  Hopefully I can finish resolving this matter on Monday.

The other issue that has proven massively frustrating is dealing with the child support enforcement agency.  TGG had saved enough money to make sure that he would be able to pay whatever the court determined he owed his son once child support was calculated.  Once they told him the amount, he sent an official check from our bank for the full amount…and then the trouble began.  Because the attorney for the other party recommended to his client that TGG’s wages be garnished instead of allowing for direct pay, TGG’s employer garnished his wages in excess of what would count for the current month’s payment, and informed TGG that since he was over 12 weeks in arrears…  As you can imagine, TGG has learned first-hand the lesson of how frustrating it is to deal with government agencies.  To make matters worse, the same girl who said she wanted nothing from him has described TGG as a “deadbeat” online and he was told she called to ask if the money was in yet.  In less than a month since the hearing, TGG has seen more insistent activity from a child support agency than I’ve seen in the fifteen years since I got a divorce and my ex-husband started paying inconsistently what he owed his children.  Today we finally got a letter that states they will be deducting the payments for each month from TGG’s paycheck, but…the employer listed is incorrect.  Go figure!  That means yet another call…

In the midst of all this, J has been happy and relaxed in spite of the fact that he sees his brother’s belongings slowly being packed away and stored in the garage in anticipation of the move.  The anxiety of where TGG is only arises in the evenings if TGG goes out.  The other night we returned from our shopping trip and J immediately asked where TGG was, and we explained he’d gone to The Nutcracker, and would be home before midnight, but that soon TGG will be sleeping in his new home.  J knows this, but he is not yet ready to accept it; we foresee some anxiety, but we’re ready to deal with whatever comes.

I am, as you can imagine, trying to handle all the ups and downs of our daily life with as much dignity as I can, and last night I whisked my husband away to a nice little restaurant to have a glass of wine and a simple dinner ahead of our weekly grocery shopping trip at the big box store.  My ankle was hurting (it later swelled up like a Macy’s Thanksgiving Day Parade balloon,) but we were both in a good mood and enjoying the evening in spite of the cold.

And then I saw her and I recognized her…

I try not to think of TGG’s baby.  It’s not that I am heartless, but I do respect his mother’s choices in regards to how she wants to raise him.  If she doesn’t want anything to do with TGG, it is understandable that any interaction between them could affect this young child, and I am not one to force the issue because I believe that a mother’s happiness and well-being -in the long run- are good for the child.  If she changes her mind later on, I will be fine with that, too.  It’s not like these kids were in love, planning a future, sharing hopes and dreams and aspirations.  We never even met her, and it was all so brief and…in keeping with the current hook-up culture?…well, it wasn’t much of anything…

I worry about the baby.  I want him to be well.  I want him to be properly taken care of, and happy, and safe.  I want him to flourish and blossom, and I want his mother to be as happy as she can be.  I really, truly do…but I try not to agonize about this because it does eat away at me if I let it.

And last night we saw her.  It took me a moment to put together this girl with the one I saw on the picture they sent with the paternity test results, but it was her.  The baby wasn’t there.  She was with her dad.  Her dad, in fact, had a rather pleasant exchange with me and I wished him a merry Christmas.  I’m pretty sure he didn’t know who I was at the time.  When I reached the register, Dada -who had been looking for something I asked for- came up to me and said nothing, but I think he’d seen her already.  He had been at the courthouse with TGG, and had a brief glance at her when she rushed into the courtroom.  I saw her over his shoulder as she stopped in front of our register and asked her father about something.  He looked at me, and he sort of smiled.  I don’t know if she had said “hey, Dad, look at those people…that is TGG’s dad…,” or if he simply was being friendly, but then and there my heart skipped a beat and my blood started swirling around my brain.

They walked away, and I said nothing.  I didn’t think she’d be open to me coming up and saying “are you so-and-so?  I’m TGG’s mother.”  I let her walk away.  Dada, who realized I’d recognized her, asked me if I was ok, and I had to say “no.”  All the way home I thought about how this girl has my grandchild with her, and how I really, really, really hope they’re happy, and well.  At her age I didn’t yet have children; I had a college education, an incipient marriage, a job, a future ahead of me.  I thought, at the time, I had someone I’d be with forever, and I had children based on the notion that I was about to form a family that would be permanent.

Nearly 27 years later, my life has taken different turns, and I have learned a lot about the inconstancy of our plans, the futility of our promises to ourselves and to others.  I’ve learned that reality is stronger than we are, and that we have to work very hard at overcoming the things that go wrong, and we still might screw things up if we miscalculate one move.  I wonder where she’ll be twenty-seven years from now, and where my grandchild will be…

We didn’t tell TGG we’d seen her.  I don’t think he needs to know that I briefly struggled with running after this girl and asking “why?  Why couldn’t you just opt for a more civilized approach?  Why am I so willing to respect what you want when I know we’ll all regret it later?”  He’s having a hard time with this, and the only things his son will ever really know about him is that he pays child support, and whatever this young lady tells him.

Yes…this Christmas is definitely bumpy, and I’m struggling with getting into the spirit.

The Christmas Tree has left the building…

Christmas was a chore this year…  It wasn’t horrible, but it wasn’t the easiest Christmas ever either.  J is desperate to go back to school, and until he saw BACKPACK and BUS on his board for next week, he was pretty annoying.  When I say that I mean that he was up at 5 in the morning calling out for COFFEE when we were all just ready to keep sleeping for another hour and a half.  No sooner did I put BACKPACK and BUS on the board last night than we got to sleep in until 8:30 today…  Call it a belated Christmas miracle…we’re taking it as such…

Of course, it helped that last night J got to have some serious hang-out time with TGG.  They went to see Frozen.  They got to eat popcorn.  They went to Five Guys (where J is recognized, for crying out loud, and his order is anticipated because, well, he orders the same thing every single time.)  By the time they got home, the surly kid who hates being at home was chirping happily and we (the mean grown-ups who make his life oh-so-tedious) were pleased to see the results of a little brother-bonding, AND “mom-and-dad alone time.”  It was a win-win situation all around.  No complaints here.

The reason for Christmas being a chore was, mainly, the early start to J’s vacation time.  Dada and I had planned a day off together to relax before the onslaught of togetherness and that didn’t happen, so we were basically thrown into vacation mode without that brief respite we’d hoped for, and J was not particularly pleased with this development either.  We have baked, crafted, hung-out, read stories, and so forth even more than we would want, and J is ready for Thursday and the start of the school’s second semester.

On the plus side: yogurt continues to be a daily thing; J actually sat down and had a celebratory lunch with two people he knows, but who aren’t “family” without so much as a whimper, and Katy Perry continues to be a Prime Mover in his exercise routine.  Today I bought him a pair of “aspirational pants;” that is a smaller size in a style he likes so we can work on wearing those without discomfort over the next few months.    Another interesting development?  J (he who thinks we’re annoying) has missed our company enough to sit down and watch (not necessarily in this order) Bill Murray’s Scrooged, Errol Flynn’s Captain Blood and Alastair Sim’s Scrooge…all these while asking to have the same blanket I have thrown over my shoulders shrouding him and actually paying attention to the movie rather than interrupting our viewing of it…  When I say this is a first, I am not hyperbolizing.  When I say we’ve been warmed to the cockles of our heart by this, I’m not kidding at all.

Yes, Christmas was a chore.  It has to be when hot-flashes and Autism are ruling the roost.  But Christmas also brought some unexpected pleasures: J sitting with us to watch movies in the dining area (where WE usually sit,) or in his TV room (where he usually doesn’t let us linger unless a glue gun and felt are involved); J socializing with acquaintances in a way that denotes an approximation of social niceties previously unheard of from him; J enjoying (yes, yes, yes) movies that we’ve bought him on a whim because, hey, who knows what he might think of them…and now we often find him watching Singin’ in the Rain with the same enthusiasm he used to reserve for things like The Muppet Movie.

I am ready for Thursday.  J is ready for Thursday, too.  This has been one long, climatologically-challenged Christmas break (we had temperatures in the high 60s last weekend,) and we’ve been too close for comfort most of the time (because with disrupted plans comes anxiety which, in turn, breeds OCD that leads, inevitably, to irritation and contempt,) but we’ve managed quite nicely…in spite of the odds.

I’ll tell you the best parts of it: J loves Gene Kelly, and beet chips, and yogurt, and cheeses other than Cheddar, and working on his dry-erase workbooks without us looking over his shoulder, and Nutella, and making cakes from scratch and using a mixer that is not powered by electricity, and he now kisses Ms. Zelda even though he still wants her out of his TV room, and he wants Dada to read The Little Red Caboose, but I get to read Miss Spider’s Tea Party, and we’re sure he’ll love Gentlemen Prefer Blondes when he gets it for Three Kings’ Day, and he argues about the late afternoon family session of exercising in the garage, and Spring Break is only a few months away, but it doesn’t matter because…because…

It all works out in the end.

It really does.

The holidays ARE a chore.  And we open our gifts and laugh at the odd choices, and discover we’ve grown this year, and we’ve learned more about ourselves…and it’s almost a new year with no dentist visits, tantrums, upheaval, disruption, frustration in it…yet…

And it’s been a good and bad and ugly and good and surprising and fun and miserable holiday season, but we’ve spent it together, and J has figured out that if we say “hey, J, get dressed…we’re going in the car!!!” he can say “WHYYYYYYYY????” in a whiny tone and we’ll laugh and tell TGG about it later.  And “OH MAN!” is J’s favorite new expression, and he says it in different ways depending on what he’s trying to convey…joy, annoyance, frustration, boredom, surprise…  And the Twelve Days were fun, but J wasn’t getting all he wanted, and we’ve got some pretty funny photos of him reacting to everyone else getting cool stuff that -to his mind- trumped whatever he was getting…


Christmas was a chore…a fun one…a memorable one…and the year isn’t quite over yet…is it???