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…

We go for a walk…I paraphrase Michael Corleone…

To start,  please, imagine a long string of expletives muttered under my breath as I stomp back home leading a screeching J, and maneuvering a rather large, heavy, and full wheeled trash can.


OK, so here goes the Michael Corleone paraphrasing: Just when I thought we could go out again, I have to pull him back again.

There we were, two happy pedestrians taking the trash on a for-now sunny day, and out of nowhere came the famous “he’s on a shock collar” German Shepherd.  The loud, sharp squeal and the sudden tensing of muscles (even though the dog was about 100 yards away) made me turn, mutter and paraphrase with enough alacrity to belie my chronic joint pain and difficulty in moving.

The change in direction and acceleration had to be achieved while checking for vehicles (those two STOP signs and one speed limit are doing nothing to help matters with the shitty driving around here,) and guiding J towards our garage while soothing his nerves.

We waited a few minutes.  I took this time to text the landlord and tell him what was going on.  He responded to me with the same concern and interest that he responded to all you lovely readers when you texted him on the same subject.  (HUH?  I didn’t text your landlord, crazy middle-aged mother of J who is on The Spectrum…oh…wait…I SEE!!!!  Ha ha ha…I get it…he didn’t reply because we didn’t text him…get it, get it…go on with your soapbox performance for today.)

J had been happy.  Seriously happy!  He was wearing his new Panama hat, the sun was shining, the breeze was warm and lovely.  Suddenly we were back in the garage and he kept shuffling his feet, looking anxiously at the street where the dog had been.

We ventured out once more.  In J’s hand was our gas bill, crumpled.  He ironed it out hurriedly on top of the trash can lid so I wouldn’t be upset.  I told him that didn’t matter.  We just checked for the stamp, that it hadn’t been torn, and I returned it to him so he could put in the mailbox.

We looked around, saw no dogs, and back we went.  Of course, by this point J is just super vigilant.  Any bark from a distance, garage door opening, sudden step makes him look over his shoulder.  We deposit the trash in the dumpster, look before crossing and head to the mail room.

As we go along I remind J that I have his back.  I will do whatever it takes to help him if he’s anxious.  I will wait, or I will walk faster.  I will take out our dreaded iPhone and (with my too-big fingers and thumbs) shoot off an angry text at the parties in charge of the rules being followed.  I will stand between him and dogs, cars, wild horses…you name it.

I feel his arm and shoulder begin to relax, and we stop at the corner to check for traffic.  “Look left.  No cars.  Look right…” His shoulder and arm tense and he grips me…there is not ONE dog…there are now TWO.  What are these people doing?  Lying in wait?  Did the first guy call and say to his buddy “hey, the freaks are out…bring your German Shepherd out, too?”  I take a deep breath, tell J to walk and not look.

He walks.  He tries not to look.  He fails miserably.  We speed up and make it back to our garage (with J frantically hitting the remote’s button so that it starts to open, closes, starts to open again, and I ask him to take a deep breath and relax because we’re on the concrete of our driveway, and that’s a sanctuary.)

J’s heart is racing.  He looks at me as the garage door closes and we finally find ourselves separated from the world of dogs.  I tell him it’s time for Wii, and he nods.  He takes off his Panama hat, and hangs it in the hallway.  He gets his step stool, and he turns on all the necessary equipment while I change my shoes.

By the time The Monkees are halfway through I’m a Believer, J has relaxed.  He smiles at me, says HAPPY, and then I LOVE YOU.  I smile, say HAPPY and I LOVE YOU, TOO.  I add “I have your back, buddy…I will protect you.”  He lets go of the step stool and, still running, hugs me.  We are actually running while hugging, and this makes us both laugh…

It is, in the great scheme of things, a rather fantastic moment.  J laughs heartily as I lip-sync to Huey Lewis and The NewsDo You Believe in Love? (I’m always The News…doing all the eeehoooohs and such…)

As we make lunch I ponder what people think this is like for him.  I know the property manager told me (with much fanfare) that she used to volunteer with kids who have Autism.  I also know that she, too, has let her dog rove around leash-less.  I know she addresses people not picking up after their dogs, but I also know she never tells them that the lease states dogs have to be on leashes. I know, heaven help me, that I come across as an annoying whiner who thinks her kid’s rights override the rights of the other tenants.  I can hear her saying “the lady in unit such-and-such complained that…”  If the issue had been addressed as “the terms of your lease state that…” this wouldn’t be such an issue; because it is “the lady that lives in unit such-and-such” it becomes sour grapes from a hag who gets disability checks for her son.

I decide to let it go.  Well, not really.  I decide that I have documented it, and I will use this when it’s time to break our lease to move away.  Not in a combative manner, but in a “hey, there’s this that I have expressed concerns about, and hasn’t been addressed” manner.

The moment that was bad is gone.  The moment that sucked is over.

It doesn’t mean it wasn’t bad for J, or that it won’t suck when it happens again.


The ear is better, the mood is great…

My stubborn son is feeling much better.  He is happy.  He is taking his antibiotic and enjoying life…  I can’t ask for more, really.

Well, I can.  I can ask all I want, but I’m fine with not getting what I ask for…unless it’s continued health and good balance in our home.  That’s all one wants.

Yesterday was Lego Wednesday, and we completed yet another building for our village.  Dada is talking discretionary deforestation and train track rerouting.  Given the fact that we both have a bird’s eye view of how crammed things are in that smallish space the village occupies, I tend to agree.  That will be this weekend’s rainy day project.

J has been more spontaneously verbal of late.  Not only does he chime in with a THANK YOU without anyone giving him a pointed look after he gets something he wants (be it help, food, a movie, or anything else,) we now get regular I LOVE YOUs when we least expect them.  The first time we were thrown off trying to figure out what he was saying; his enunciation is not the best, of course, and he wasn’t signing when he did it.  We hear PEW-OVE-EW…and scratch our head for five minutes while trying to figure out what he’s asking for before J comes up, hugs us and says PEW-OVE-EW and a lightbulb goes off…I LOVE YOU.  HORRY, obviously, is SORRY.  TEK-EEYORE-BAFF is TAKE YOUR BATH.  What he doesn’t achieve with enunciation he makes up for with volume and intensity.  It’s a little like being in the path of Sam Kinison’s delivery of any line ever…but it’s spontaneous, and it is awesome.

I have good things to tell the doctor tomorrow, but I also have concerns.  The whole thing with not wanting TGG around worries me.  Will J ever want his brother back?  Is it something J needs to fix, or is it something TGG needs to work on?  We make sure that we mention TGG in a positive way, and we do our best to show J how present he is in our everyday lives, but…  J’s just not into it right now, and it feels wrong to force his hand.  We might have to?  Maybe?

I have list of questions.  I will try to address al of them without coming across as a weirdo.  It’s very easy to feel like one is being over-punctilious when trying to find out if the way things are being approached is the best.  As parents of a disabled individual we often need to hear that we’re not screwing up massively, or that we are not as hysterical and silly was we sometimes think.  This makes us come across as more hysterical and sillier than we would like.

We have resumed our walks to the mailbox.  We have to strategize so we don’t run into canines that J might find intimidating, but J is also working very hard at not immediately freaking out when he sees a dog in the distance.  Some days are better than others, but we can’t ask for more than that.  Well, yes, we can ask for the opportunity to someday have a dog of our own, but we’re not pushing that either.  (We just KNOW that J would get along with a kindly, sweet, soothing Golden Retriever named Mott the Hoople if given the chance…but that’s probably just our imagination.)

J had missed wearing his beaten up Panama hat, and he dons it with panache when we’re heading out the door for our walk.  He’s not ready for shorts (I’ve bought new ones to accommodate his newer waistline…hopefully we don’t need to go up another size, but we’re ready if it happens,) or sandals, but he has worn his lighter shoes to go out these past few days.  I am very glad of this as I’ve been stepped on with the snow boots more times than I care to admit over the course of our winter outings.

Our plans to move are reviewed and revised frequently.  We want to make sure that our prospects are positive, and our expectations are not so high that we fall flat on our faces. The focus of our plans is, of course, what is best for J, so we continue to review and revise, and fine tune, and consult…with each other, with the bank, with the job boards, with the universe.  We find, as we move along this process, that our requirements are more modest than we originally estimated.  It is a rather nice feeling.  Daunting still, but nice.

And now, off I go to use some time J allows me while he is on his elliptical (it’s still The Sound of Music) so that I can get some reading done…I think I’m good for thirty-odd pages and a cup of tea.


Fighting the rising tide…and failing

We knew the weight would pile back on once the Risperdal returned to the mix, but it is nonetheless frustrating to see it happen.  We feel like semi-failures.  I say semi because we do all we can, and we know it…

Of course, the other part of the semi is that we wish we could do more.  J exercises every day, eats prudently-ish (I cannot say he is a role model for not eating anything he shouldn’t, but there is not a trace of salt-laden Ramen noodle, glow-in-the-dark-powdered-cheese macaroni, and so on…  He gets veggies every day, he has a limited amount of cheese, and still here come the pounds, forming a suit of armor around him.

We can tell he is hungry.  We can tell part of it is the Risperdal.  We know some of it is the appetite of a 22 year-old male body.  In order to control his weight in the way we wish we could drastic measures would be required: a ridiculously low amount of calories, a tremendously hectic pace of exercise.  It is, sadly, unrealistic.  We are hoping that the warmer days ahead will allow us to take him for walks on top of the exercise he does in our garage.

This, of course, will only go so far to help us keep his weight under control.  We are still on the “J’s wearing an XL instead of a L” portion of our frustration…we want to keep our frustration at that level.  Last evening, as we sat in the Urgent Care waiting for J to be seen (more on that later,) we were pondering whether he needs a whole milligram of the Risperdal, or if we’re just comfortable with that dose.

Did we go from .5 to a full mg because we’re chicken?  Or did he really need it then, but no longer needs it now?  Since we’re seeing the psych on Friday, I will pose this question. Before then we will do much inner monologuing, much discourse…  There is a certain degree of desperation that sets in when your child (regardless of whether he’s built like a  linebacker, or not) is hurting himself.  You want it to stop.  You might make choices at that moment than you wouldn’t in other circumstances.

Why are we thinking this now?  Is it just the weight?  No, not really.

Yesterday J wasn’t feeling well.  He wasn’t feeling well, and he was going out of his way to prove he was fine.  It was his left ear, see…and he is VERY TOUCHY about his ears.  Many years ago he had to go to the ENT to have a piece of earplug removed from each ear.  That didn’t go well.  At the school (never mind who the teacher was, or why he made such a stupid decision…regardless of whether he won Teacher of the Year for the state,) they had broken an earplug in half, and pushed it into J’s ear.  They were wedged in there pretty solidly, and the removal process was not painless, and it certainly did not lack in drama or trauma.

So our son was being stoic, and I knew something was wrong.  We had a wee bit of an argument.  I discovered how strong he really is, and NO, he didn’t hurt me, hit me, push me…he simply stretched his arm out to block my way (I was trying to Proloquo my way into a doctor’s visit) and I COULD NOT MOVE HIM…  There was no violence, no aggression, no anger…just sheer determination a la Gandalf that none shall pass…and none did.

Of course, J realized that he had done something wrong, and he then hugged me (thus proving his strength once more,) and said he was SORRY.

Anyway, long story short: I saw blood when I gently rinsed his ear with hydrogen peroxide.  A quick glance with the otoscope told me that, yes, there was something wrong in there…  He has an ear infection and, once he realized that it wasn’t going to go away just because he wanted it to, J accepted a visit to the doctor.  We did have a bit of an argument.  It was more along the lines of “I want to help” SCREECH “listen to me” SCREECH LOUDER “will you listen to me??” SCREECH AND HOWL “come on, dude…sit here, and look at me” HOWL SCREECH BYEEEEEE until we ended up huffing and puffing in opposite directions to calm down.  There wasn’t, however, any SIB…and the anxiety that TGG (code name Kylo Ren…seems apropos, no?) causes him is being managed positively.

When we both came down from the argh moment we were having, and it was not easy because one party was dealing with worry and urgency while the other was sorting through anxiety and stubbornness, I explained that I wanted to help, and asked if he trusted me.  We called Dada and off we went.  A promise of a trip to the grocery store didn’t hurt, let me tell you…

We are home today, and he is happier than he was yesterday.  I know his ear still bothers him (I don’t know WHY this child has so much wax in his ears, or why this particular ear got infected,) but he knows the antibiotic will help.  That is enough for him.  He insisted on doing his elliptical (to the tune of The Sound of Music, a switch from Fiddler on the Roof…maybe because it’s Passover?  He wants to give Tevye a break?,) and he has been in a nice mood all day.  We worked on vocabulary, and we did some chores.  I’m sure we’ll work on a pending project after lunch…

There you have it: the kid is gaining weight because of the med, the parents feel guilty, I’ve learned not to try to move the immovable wall that is my son…

We’ll see about the med reduction.  Yesterday’s medical semi-crisis was a lot more manageable than I would have expected before we went back to the med.  I am sure that, stubbornness and anxiety notwithstanding, J can manage himself better, but it’s a subject for the doctor to ponder with us…


A healthy dose of good, and a little bit of bad…

J improves a little more every day, but he does have his natural temper still in play.  This part we don’t mind one bit except when it gets on our nerves, but that’s normal.  I’m sure (more than sure…absolutely certain) that we get on J’s nerves, too.  These traits are in play when things like the pizza we ordered is late, or he can’t get Netflix to load after half an hour of trying.  (Explaining service disruptions to this kid can be a very creative process.)

There is still some lingering anxiety, and when it’s on deck we have to work very hard at helping J work his way through it.  We respect his process until he hits himself…well, we still respect the process, but we are vigilant of how far he will take it.  I am pleased to say he has gone back to deep breaths and soft taps on his head.  The band-aids are out in full force, but not getting changed as often as at the peak of his most recent critical period so that’s good.

His labs, however, are starting to take a turn for the “oh, we need to address this.”  I am not a doctor of anything, but I can tell when his levels are pointing to higher blood sugar and slower thyroid activity.  We are, with two days to go to his pre-admission check up with his primary care physician, on alert and loaded with questions.  That he seems to be having digestive issues, and hemorrhoids isn’t helping matters for anyone.  He has made peace with the treatment for those, but it’s not something anyone here approaches with minimal trepidation.

Of course, this is to be expected with a return to the med.  Winter and the return of cold, wet weather isn’t helpful either.    Our workout is limited to what we can do in the garage, and even with the heater on in that space it rarely goes above 60 degrees.  Our body heat helps it get there…the heater takes too long to get it to where we can run and be comfortable for a prolonged period of time.

Running with the Wii is something that J has learned to enjoy.  Some days he wants to run a longer time and distance than others, and it’s mainly because of the cold, and because watching the Mii go all over whatever the Island is called can be a bit boring.  Even I have to admit that I can run while taking stock of the part of the pantry we keep in the garage.  I have actually rearranged shelves because it’s more interesting than watching the TV screen and the same things going by in pretty much the same order.   We’ve given name to some of the random Mii that pop up; there’s suspicious guy with the beanie, prissy lady with the bowl haircut, home-brewer with a secret penchant for origami, candidate to city council who drinks while watching episodes of Sex In the City, maternal type that wishes she had enough kids to fill a van…  Because this started to be sort of creepy (ok…very creepy) I ordered two DVDs with “runs” through beaches, towns, hills…  They arrived on Saturday so we will be using them for today’s run.  Between that and the music with play with J’s old iPod we should be entertained and motivated.  I think Hungry Like the Wolf by Duran Duran would be a good choice for the beachside jungle run, don’t you agree?  I don’t think I’ll go with Vangelis’ music to Chariots of Fire…I’m always tempted to slo-mo my way through that one…

If I seem to be making light of the glitches in J’s labs, please, don’t think it’s because I don’t consider them important.  Quite the contrary.  I have been working on how to work on those.  The whole process can be frustrating because J eats a very healthy diet (well…I’ll be honest: a lot healthier than the average 21 year-old,) and there seem to be side effects that hinder him regardless of what adjustments we make here.  I always say that if he drank beer, smoked, partied, ate pizza 24/7 and played video games while downing Red Bulls he’d probably weigh 70 pounds less than he does.  As it is, my yogurt-eating, vegetable-loving, one-soda-a-day, only-ten-jellybeans-a-day, controlled-portion son is far from slender.  He works out.  He sleeps well.  He doesn’t overeat, he has a vegetable or fruit represented in each meal, limited amounts of cheese and bread and butter…and he is gaining weight.

I know the Risperdal plays a role in all this.  I understand.  I am smart enough to know that, and to accept that, no, Risperdal doesn’t make him accumulate fat, but it does fuck up his metabolism in ways that only a person with a doctorate in Chemistry might be able to explain.  I am at peace with that, but I still proactively think of what I can do to help J.  His health is important to us.  We love him.  We respect him.  We want him to live as full a life as possible.

So there you are…things are mostly good, but naggingly bad in a minuscule way.  We work on it.  We always do.  We hope it will have positive results, but we are realistic.

Tomorrow J turns 22.  We will have for him a small cake (yeah, I KNOW…should he be eating cake????  Yes, he should…it’s his birthday, and he’s not planting  his face in it and making a pig of himself, thank you,) and he’s going to get his hot dog at Five Guys. That’s his birthday treat.  Birthday presents can be difficult, but we are thinking he’s ready for a refresh of his bedroom decor.  You have no idea how much he enjoys seeing his curtains, bedding, furniture refreshed, renewed, changed around.  He likes bold patterns, and light, and color.  He is very comfortable with the fact that he likes masculine stuff with touches of botanical prints, and butterflies covering his fairy lights, and semi-naked women decorating his walls.  He loves his stuffed toys, and he takes pride in making his room a sanctuary that appeals to his taste and idea of comfort.

J is going to be 22; he is closer to knowing, for the most part, what I didn’t know at that age: who he is, what he likes, whether he cares or not about what others think of him.  We think that’s important, and we are pretty proud of how far he’s come in terms of self-knowledge…even if it is riddled with anxiety from time to time, and he still needs us a lot. That’s what we’re here for, isn’t it?  For him?  Yeah…I think so, too.

November’s last gasp…

Rain, rain and more rain.  It was a cuddle up and stay in his room morning for J, but his mood continues to be good.

The only thing I’m struggling with is how tightly he straps his wrist brace on; I tell him there has to be some wiggle room, and he refuses…respectfully.  I understand that compression is a soothing resource for him, but I worry about circulation. Once in a while we find a task that will require both hands and no brace, and we make sure that his hand moves around and blood circulates freely.

One of the happiest aspects of having the med back in his life is that J has returned to the kitchen to help.  Last night he helped sauté mushrooms, bacon, garlic and potatoes…it was lovely.  Not only was he actively involved in making dinner, he was smiling and joyful throughout.  Unless you’ve experienced surly, dissatisfied J you have no idea how wonderful it is to see him pointing at herbs and spices that he wants to sprinkle on what he’s cooking.

It being “baked goods week” in the bedtime story rotation, last night he had The Little Red Caboose read to him.  Dada goes off-book on that one, too.  J laughs and laughs.  We hadn’t heard that a few weeks back when the story was read to him.  He is not a barrel of laughs, mind you; he is not in a perpetual state of “hey, dude…life is AWESOME!”  Our son is not drugged out of having ups and downs.  Our son is now open to not being surly and moody, and grumpy and self-injurious all the time.

Now that Risperdal has entered the picture once more, we are working on J’s nutrition plan.  We know the med will make him gain weight, and we want to work on helping him regulate this as best we can.  Exercise is a big part of this; as long as we can control diet and exercise habits to the degree that his blood pressure stays at a healthy level we will be happy.  Right now his routine alternates between the elliptical machine and the Wii.  For the elliptical machine he gets on and watches a movie.  He’s usually on there for a whole hour unless he’s not really into it.  The movie has to be a musical, of course; yesterday he switched from Mary Poppins (a lifelong favorite) to The Music Man, which he has owned for a while but never really wanted to watch until now.  I have to say that Robert Preston and Shirley Jones seem to have charmed him because he was actually on there for an hour and fifteen minutes, giggling and laughing all the way.

When we do the Wii, we also do weighted balls, and resistance bands.  Mind you, J’s movement is limited, as I’ve mentioned before, but he enjoys the exercise.  We are not training for the Olympics here; we are, however, keeping our bodies moving and socializing at the same time.  Sit-ups, as I mentioned, are tricky because J doesn’t like to be flat on his back, but little by little we are adapting them so he works his abs, and leaves his comfort zone slightly.  I will not force him to do something that is scary to him, or that causes him anxiety, but I will try to soothe him into more effective positions for the intended purpose.

Since gloomier-weather days are upon us, we will be indoors more and more.  This has its downside, and we are hoping that, once we relocate, we will be able to provide J with a house that has an area that allows him to be “outside” while still being “inside.”  We spend a lot of time on Zillow and Trulia looking at houses in our potential new locations.  Thankfully, screened-in porches are not unusual there, and neither are fenced-in backyards where we can grow our garden.

We are, as usual, approaching this like D-Day.  We are studying the job market, the availability of services for J, commute times, accessibility of shopping for basics (Dada jokes that Target, Michael’s and a Five Guys are musts…but we know this is not entirely realistic,) and the affordability of homes in each area.  We have a list of things we want in a home of our own, and granite counters and stainless steel appliances don’t even figure in it.  We wouldn’t want a septic tank, but that’s still a negotiable point; we’d also like a gas connection in the kitchen…I hate glass- and ceramic-top stoves, but will live with an electric stove where I can see the burners and my pots and pans don’t slide as they get hotter.  Those are trivial requirements compared to what we want for J: a bedroom, an area for his daily activities, a nice bathroom with a tub and shower, and a space outside.

We don’t have to look at school districts anymore, but we do need a hospital or urgent care close enough in case of an emergencies.  We don’t have to worry about daycare, but we would like a park, or places where J could go and enjoy some outdoor time when he can see people other than us.  We would LOVE a place where there are opportunities for a day program for him.  If this all means we take a huge pay cut and simplify our life to the most basic things, so be it.  For J’s comfort and ease of adjusting to such a huge change, we would love to find a house that doesn’t need anything major done before we occupy it, or during the first year of us living in it.

Of course, it’ll be March before we make the formal first steps to achieve all this.  J’s dental work comes first, and we need to figure out what the underlying causes for his recent spate of anxiety and SIB are before we commit to uprooting our lives and relocating.  There are, of course, those “ifs” that we must keep in mind.

We end November in a more hopeful note than we had at its beginning, and we enter December with a list of caveats.  We have plans, and we have hopes and aspirations.  Their modesty, compared to what we had before now, makes them no less important than they deserve to be.  It’s all about the little by little, the one foot in front of another, the journey of a thousand miles, and the focus of our lives being where it has to be.

Deep breaths, November.  Inhale…exhale…you will soon expire, and we’ll still be here…breathing…doing our homework.  ALL our homework.


A return to calm seems iffier than expected…

The national mood is far worse than the mood at home.  J is still iffy, but he’s trying very hard to improve.  The country?  Not so much.  And, no, this doesn’t mean people need to “get over” Trump being president-elect…it just means that I disagree with the way this is being handled.  The unpleasant rhetoric hasn’t really stopped (it’s just shifted,) and now there are acts of violence sprouting in places.

I keep asking myself if this is productive.  I keep telling myself that people are THAT upset (it’s not like I’m bouncing through a field of wildflowers singing to the sky either,) but I wonder…does this advance the cause of disagreeing with the process?

Yesterday we walked to the mailbox after J exercised with the elliptical (while watching Meet Me in St. Louis) for an hour.  The small boards I attached to the fridge with magnets seem to be helping him, too.  He focuses on that part of his day with a healthy degree of attention.  On one is I WANT with all the food he gets that day, and on the other is ALL DONE.  In the morning we put up the snacks he’s getting, and as the day goes by he moves them to the other board.  It’s easy to forget sometimes, in spite of the abundance of pin-up girls on his bedroom walls, how visual J is.

The SIB is abating.  There are sudden and unexpected flare-ups, but the intensity seems to be lessening.  It is becoming easier to redirect him, too.  I don’t think we’re out of the woods, but we might be approaching a clearing where things will be clearer and safer for a while until we can move on to the next stage of our progress through whatever this is.

Of course, our worries will never disappear.  If there’s one thing I’ve learned in life it is that we just change what makes us fret, or it gets bigger or smaller, but it never really goes away.  Maybe I’m just not enlightened enough?  I’ve heard people say “I don’t worry,” and I feel compelled to check their pulse…it seems such a foreign concept to us this “not worrying” thing!  I don’t know if they mean “I don’t agonize” or “I don’t let it overwhelm me.”  They just say “oh, I have no worries.”  In my book that is a non-existent utopian neighborhood in the realm of La-La-La-Dee-Da Land…perhaps I’m wrong, and it’s not, but I doubt it.

J, yes, is happier.  His digestion seems to be good, but I do keep a closer eye than I did a couple of weeks ago.  He is starting to accept my knocking on the door and saying I need to check before he flushes with a little less mortification.  He rolls his eyes.  If we can reach a point where he tells me if he’s having trouble this will become easier.  I am hoping that we can achieve that soon.  I understand how difficult this is for him even though he is pretty much used to being child-like in certain aspects.  Mind you, it’s not that J is a child, or that we treat him as such…it’s just that there are things where his independence is still in the early stages, or where -because of his difficulty communicating his needs- I have to intervene as if he is still a child.

J has discovered the joys of an adjustable massage roller we bought him during a shopping trip a couple of weeks ago.  He wasn’t keen on it at first, but he let me try it on his back a few days ago.  He was OK with that first try.  When I tried it on his feet he realized “hey, I like this thing!!!!”  He now asks for it…in the morning, before getting out of bed, he wants his feet and legs massaged; after his shower his back and shoulders get attention, and he will randomly request it during the day for his arms, shoulders and feet.

The variety in exercises we have introduced is helping J be happier.  I know that sounds stupid, but he feels the social interaction more than he does the actual physical benefit of working out.  His form needs work…lots of work, but he smiles and gets into whatever it is we’re doing each day.  Granted, he is still wearing his brace and bandaids while does this (which affects his form somewhat,) but he is varying his routine.  He likes to sit on the balance ball (even though his balance is not stellar…in spite of the attachment to keep him in place,) but there is just no way he will ever be comfortable while flat on his back.  We don’t know WHY he dislikes this, but it is a fact of life around these parts.  You can put J at a 15% angle, but you will never get him to lay down flat.  He will scream and struggle, and I suspect it harks back to when an ENT messed with some earplugs that had become wedged in his ear canal because someone at school had the brilliant idea to cut them in half before putting them in…  When I tell you there was blood coming out of his ears, and I discovered that -small though he was at that time- he could turn into the Incredible Hulk I am not hyperbolizing.

That was the day he discovered The Disney Store…I had to do SOMETHING for him to forgive me, no??????


We keep plugging away at our checklist of options.  We want to help him.  We are on this like hairs on a gorilla.  If anyone has any suggestions, please, feel free to chime in.  I will try everything.  At this point he seems to be cheered by his mother imitating Rip Torn’s Zeus from Hercules when he coos at Baby Hercules…


and he also finds it hilarious when his mother lip-syncs to Mary J. Blige’s Work That or Gwen Stefani’s Hollaback Girl or Rich Girl (featuring Eve.)   The Monkees’ Little Bit Me Little Bit You is another favorite…because I do all the Monkee parts except Davy Jones.

Well…off I go.  Working on less iffy…regardless of how ridiculous things might get around here.