Our power to control the weather…

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

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

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

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

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

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

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

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

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

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

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

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

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

Did I mention hope?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

An unexpected turn of events…

It might be nothing, or it might be something.  We won’t know for a couple of days yet, but we are -as the fact that I am mentioning it might hint to all of you- keeping in mind that we might have one more thing to work on…

J had his physical yesterday, and a short appointment became a longer, more complicated one.  His blood pressure was high-enough that it warranted double-checking (the first time was done by a student doing her practice.)  We ended up what was a rather anxiety-riddled (for J) encounter with the doctor with an EKG and a chest X-ray.

The purpose of the whole appointment was to clear him for surgery later this month, and now we wait for the specialists to determine if we need to scrap that idea, or if we need to dig deeper, or if this was just a misreading, or what.

One of the things that warranted extra attention might/might not be an effect of the long-term use of the Risperdal, and since J had used it for five solid years (albeit at a low dose) and spent some time off it before it was restarted, that could be part of the issue.  The other issue seems to be unrelated to the med, and might require a more direct evaluation by a specialist.

The next 36 hours will not be easy to twiddle our thumbs through, wouldn’t you agree?  Why is it that you can hear if Beyonce is pregnant and see proof of it all over the world in ten seconds flat, but waiting for a specialist to review your son’s EKG takes about two days?  Ah…because the first is not something that has anything to do with your child’s health, your peace of mind, the state of the modern world, social justice, or anything important.  What matters takes longer, ages you, robs you of sleep, and makes you go back to peeking in on the kid even though he is an adult who should no longer require that much attention.

But, of course, what I see every time I log on to my computer is Beyonce with a veil, flowers, whatever, and no e-mail from the doctor.  When the phone rings it’s the same pre-recorded message from Andre (calling from six or seven different area codes, naturally) asking me to donate to a fake (I checked) charity organization.  I still run to the phone in case it’s the doctor, and -being a middle-aged woman who hasn’t really got used to her bifocals- I don’t really look at the Caller ID, or wait for Robot Ernestine to tell me that number that’s calling.  (That’s a reference to a Lily Tomlin character…


I know you’re not as old as I am, but feel compelled to use these little things to keep my brain from getting too serious…)

Maybe his blood pressure was up because he was anxious about the appointment.  But the EKG noticed something that shouldn’t work the way it does.  Of course, a primary care physician has to consult with a cardiologist, and then we go from there.  His labs indicate that his red blood cell count is higher than it should be, and that has nothing to do with the pill he takes, but a hematologist has to review the results and then we go from there.  So we are on deck to depart in different directions, but we don’t yet have a ticket…how’s that?

It took a while to get him to give in to all the poking and prodding.  I had to negotiate, be firm, persuade, cajole, beg, and be firm again.  In the end we got it all done, but Dada came to join us at the doctor’s office in case things got testy.  Once we were done with the medical aspect of our excursion, I treated J to shopping for his birthday.

We have more train tracks than space, people.  And, if I am good at reading my son’s body language, we need more.  This might require disassembling and reassembling the whole village.  It might also involve moving furniture.  Considering that the cold weather has returned and we’re not likely to go anywhere for the next couple of days, this is a productive activity to be engaged in, and if Dada helps J with the new Lego cabin-in-the-woods, we will have yet another building for our little community.

These are the thoughts, concerns, preoccupations, tasks, ideas that presently engage our attention.  J is mildly moody today because he got, to top all other injustices heaped on him yesterday, his flu shot.  His arm, obviously, will not be tennis- (or laundry-, or help-mother-with-chores-) ready until tomorrow, but it’s a small price to pay.  I know he’s recovering still from how overwhelmed he was yesterday, and am giving him space.

Yes, I still go in there and -while lip-syncing to Zero to Hero from Hercules– I check in on him.  Yes, I still go squeeze him and hug him, and give him fish kisses that he mock-rejects until he starts giggling and asking for more.  Yes, I have the phone next to me…and my reading glasses perched precariously on the tip of my nose to read the screen if I have time.

I am well-aware that there are far worse things parents have to confront when it comes to their children’s health.  I don’t think our particular situation is extraordinary or worthy of more attention and empathy.  I know this might pass, or not.  I do know with certainty that, should it not be “nothing,” we will deal with it…

It’s the waiting, see?  It’s the not-knowing.  It’s the same thing I used to tell the kids: when you’re scared of something, find out its name…if it doesn’t have one, give it one.  Things are less scary when you know what they are…when you can call them by a name, and say ‘well, screw you…so-and-so…’  The first time TGG watched M. Night Shyamalan’s  Signs he was tremendously scared…until he saw the monster.  It was a tangible thing then, and -let’s face it- kinda silly-looking.  He still wanted us to make sure it wasn’t hiding in the bushes outside his bedroom window in our first-floor apartment in Anaheim, but he didn’t feel as overwhelmed as he did when he didn’t know what it looked like.  He was no longer uncertain of its appearance…he knew what he needed to look for to see if it really was there.

And that’s all we want.  We want to know.  Because when you know, well, it is not that you don’t worry, but you know WHAT you are worried about, and WHAT can be done to address it…and isn’t that more productive?



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.

No holes in the walls…

J went back for a follow-up visit with the psych on Friday.  This was the new psych.  His previous doctor (who had been treating him for nearly six years) has shifted his practice to serve an underserved population in a remote part of the state, and we were reassigned to a psych who has a specialized practice more geared towards J’s needs.

We were hesitant.  Change is never worry-free.  J asked for his regular doctor several times, and I did my best to help him understand that we were seeing a new doctor in the same office.  It wasn’t the most stress-free ride in a taxi we’ve ever taken.

In the end we were fine.  J was mildly confused at first, and then it dawned on him that we were seeing someone new.  By the end of the appointment, he was leaning back contentedly on his chair, sighing happily and smiling from ear to ear.

We explained to the doctor that J’s obsessions are still there, only less so; we said that we think the med is working, but we have our son rather than some medicated puppet in our hands.  We told her we are glad that we can now negotiate, talk, soothe, reason better than we were able to do way back in early November.

We know she read his file.  She had to so that she would understand the needs of this young man she was meeting for the second time (the first having been a cursory introduction during our last visit to his previous doctor,) and that she knows where we’re coming from.  These visits are as much for J as they are for us.  We often find ourselves a little lost at sea, and we need to know how best to navigate.

The band-aids were discussed: we’re back to after-bath and before-bed bandaids.  The fact that J is sometimes totally into hanging out with us, and sometimes not was discussed also.  The fact that we get tired and frustrated figured into our discussion.  The fact that we can get scared and want to help J as much as we can was also mentioned.  We explained that there are certain limitations as to what is out there, on offer, for him.  We explained that we try to fill the gaps as best we can.

She asked about the SIB, and we were honest.  It’s there.  It’s not entirely gone.  It’s much, much, MUCH more controlled than it was.  We have come to understand and accept that there is a compulsion for it, but that J is doing his best to be kind to himself.  We only see an escalation in proportion to the level of frustration he is feeling.  He accepts that we have to make sure he’s OK, and that he has not hurt himself.  He accepts that we are working to help and not just to hinder.

“Do you have any holes in the walls?”  No.  “Is hitting his head all he does?”  Yes.  She explained that we are very fortunate; J is under control, and he trusts us.  She told us that she has seen, in all her years of practice, people whose physiognomy is changed by the damage they cause through SIB.  She said that we are doing great.  She said that the effort we put in and the work we do shows.

The med, of course, will stay as is for the time being, but we expected that.  We know that J was a certain way, then he progressed, then he had a setback, and now he’s back to making progress.  That doesn’t mean we’re going to have the same J we had before we started slipping back.  This is not the same person…he is, but he isn’t.  Something changes every time we have to readjust.  Experience changes us without nullifying our basic self.

We will move J forward.  We are starting to see more and more of the positive effects of the med, and only the pesky gain weight on the bad side.  But it’s something we can deal with, and work through.  We’ve done it before, and we’ll do it again.

A little over a week to J’s 22nd birthday.  Another milestone.  Another bend in the road.  Another opportunity for growth, maturity…a little madness.

We have no holes in the walls.  J hits his head, but no longer to cause himself pain, and no longer to the point of agony.  He has a pattern.  It is not as fraught with violence as it was.  There is not an undercurrent of anger and frustration that he cannot explain.  He gently taps his head, sometimes it’s actually a caress, and then feels satisfied that he has completed a cycle that, for some reason that eludes us, soothes him.

We stay vigilant.  We stay proactive.  We want to help.  We want to provide him with all the love and support that he needs or wants.

We are doing well.  Sometimes it’s important to hear it from someone else, and we all heard it on Friday.  When you usually get daily feedback from each other, it’s hard to believe that it’s not just encouragement of the “please, don’t give up, or I’ll feel like I have to give up, too!!!” sort.  Sometimes it’s easy to say “we are drowning here!  What are we doing?  Doesn’t it seem like we’re getting nowhere????” because, as parents of an individual with ASD, it’s easy to feel we are isolated, that there is very little understanding of what’s at stake.

We were driving back from the Friday post-appointment outing and our Hamilton CD was playing.  As Leslie Odom, Jr. sang The Room Where It Happens Dada said “you realize that no one wants to be in the room where it happens, right?” as he cast a glance over his shoulder at a broadly smiling J.  Mmmmhmmm, I replied.  It is a testament to our sense of humor that we then immediately launched into a vigorous sing-along to the song.  We often wonder if Lin-Manuel Miranda knows we are singing this about our inextricable position in our son’s life.  People know this is our life, but they really don’t know what that entails.

No one else was in
The room where it happened
The room where it happened
The room where it happened
No one really knows how the game is played
The art of the trade
How the sausage gets made
We just assume that it happens
But no one else is in
The room where it happens

By the time that we got to the end, we were buoyed, energized, ready for anything…

It’s good to hear that we’re not drowning…we’re actually swimming.  Exhausting it is, but it is still swimming.  J is getting better…that’s all that matters…  Or, as the song ends, CLICK-BOOM!


It’s here! It’s here! The First Day of Christmas!!!!




Ridiculously fun Christmas village…check!

Christmas music…check!

Presents wrapped…check!

Twelve Days Countdown Calendar…check!

Snowflakes the size of small hamsters…yeah…check…

Small hamsters…

I kid you not…

But on to other subjects.

It’s the First Day of Christmas!!!!  We are READY for gift-giving, and J is totally into it…FINALLY!

We went to his psych appointment yesterday, and his meltdowns are basically “normal” and “an offshoot” of all the other emotional, psychological stuff that he deals with on a daily basis.  Physically he’s healthy (all things considered, of course…we have to track the effect of the med on his metabolism, of course,) and we have seen a marked improvement in how he handles himself, and how he communicates with us.

I am happy to report that SIB is down to a minimum, and this seems more like a daily dosage requirement J has imposed on himself.  It’s more of an obsessive behavior he must complete than a behavior he engages in to cause harm.  Some days he hits softly, and others he just touches his hand to his head in a very specific pattern.  Gone is the viciousness.

His personality, happily, is intact.  He can still be annoyed by us, and he can still annoy us. He laughs when he thinks something is funny, and he rolls his eyes when he is tired of our attempts to engage him if he’s not in the mood for them.  He insists on things he wants, but he negotiates without doing any violence to himself.  He can be redirected.  He can be consoled if he’s inclined to be consoled, and entertained if he’s inclined to be entertained. We have had our concerns, of course, because having J on a med is not our favorite thing to do, and we always ponder at the deeper meaning of his behavior.  We have wondered how far we can push certain situations before he loses his patience with everything and reverts to angry, incessant SIB.

Many of our fears were laid quietly to rest yesterday.  It was, to put it mildly, a bit of a hectic morning.  It was, to be kind, the kind of morning that perhaps would’ve possibly thrown J for a loop a mere two or three weeks ago.  It was the kind of morning that, when you look back on it, you have to laugh because there is a strong undercurrent of absurdity that can only be interpreted as “meant to be” for the purpose of “testing the waters.”

J’s appointment with the psych was at 8 a.m.  We got there early.  We simply dashed out the door in an effort to miss the traffic generated by the second wave of school buses that pass through the entire area we were to drive in to get to the hospital.  In the process, we basically got J dressed and, without further ado, hopped into the car…leaving the iPad behind.   We got to the doctor with no delay at all, but…the doctor was stuck in traffic, and what was supposed to be an 8 a.m. appointment didn’t start until 8:30.  We had given J his med, but we hadn’t had time for breakfast.  After the doctor, we stopped for a quick bite, and then headed to notarize the end-of-year guardian report to the court.  We got to the UPS Store and, lo and behold, my ID (my new ID which I had renewed in April of this current year) seemed to be “expired.”  I nearly had a heart attack.  I have bought wine with that ID.  I voted with that ID.  I notarized another document with that ID.  Did I have the wrong ID?  Had I accidentally shredded the new one?  Impossible!  How could I vote not six weeks ago with an expired ID????  We dashed home.  Searched everywhere.  No ID anywhere.  I called the DMV office and explained; the kind customer service rep looked at the file online and said “oh, wow…we made a mistake.”  Yep…my new ID was issued with the same date that the old ID had.  She knew this because she could see, and I then confirmed, that my organ donor date was in April of this year.

Off to the DMV office, and -thankfully- no line.  Of course, you realize that this is all completely out of the flight plan we had shared with J the previous night.  “First we’re going to the doctor, then we’ll grab coffee, then we’ll do some paperwork, drop it off, then we’ll go to Target, the grocery store, and the crafts store…”  This had turned closer to “first we’ll go to the doctor, wait a while, grab breakfast AND coffee, do some paperwork, run back home, run to a government agency, do some paperwork…”  Once we got into the car I told Dada “I am picking my battles, dude…let’s notarize these papers, and do something for this happy, patient young man who has accepted all the upheaval without nary a complaint.”  We went back to the UPS Store, notarized the papers, and set them aside for filing today.

J, who had been calm and accepting all through this mad dash to and fro, smiled broadly when I told him “we are going to Target!”  I took J to Target while Dada went to get the few groceries we needed, and then I went to the crafts store while J and Dada listened to music in the car.  When we got home, we put our purchases and paperwork away, and made J’s lunch.  While food was cooking, I went upstairs and changed his bandaids.  By the time he came downstairs, J was happy and relaxed, and you couldn’t really tell we’d been running around all morning with gloomy weather and unexpected alterations to our trip’s design.

The rest of the day went by calmly, happily…we relaxed and did small fun stuff…like adding train tracks to J’s Christmas village, and including some animals we hadn’t found when we first started setting it up.

The morning proved to us that we have broken through the fog, and J is now more in tune with the person he was before his anxiety overrode all other systems.  We can talk to him; we can communicate; we can listen better because there is more to listen to…it is no longer just growling, grunting and screaming that give us cues.  We now see path to working our way to the happier, more relaxed version of the same stubborn child we know and love.  He is happier; he is glad of the little Christmas tree we put together with florists’ foam, branches cut from the bottom of the bigger tree, and little lights…it is in the corner of his bedroom.  He was happily gazing at it last night…and he looked and seemed more like J…

Let the festivities, scaled back as they are, commence…


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.