Oh, Monday…why’d you have to be early???

The weekend flew by in a flash.  I have snippets (here and there, flashing through my mind) of Friday, Saturday and Sunday…but Monday arrived with a loud clang and boom, and pushed the enjoyable hours of what we call leisure to a corner.  I have been dragging them out, reminding myself that -yes- we had a fantastic weekend, and J was very happy…

How could J not be happy when he has his new rocking chair?  Yesterday morning, when it was warm and sunny, he sat on the deck and rocked as he looked at our view of the hills.  The smile on his face was well-worth what the rocking chair cost.  After a bit of rearranging, the spot for his chair has been determined, and we know how big the side-table for his things needs to be.

The adjustment in medication seems to have finally leveled off, and J is back to being his usual self.  Well, he IS repetitive, and can be like a dog with a bone when he’s so inclined, but that -in my humble opinion- falls under “his usual self.”  A big test comes tomorrow; his teacher will be out for the day, and he will have a sub.  In order to prepare him for this, we have a picture of the sub, and we’re going to remind him of her presence there tomorrow throughout the evening rituals.

The weather still throws us off here and there.  A warm, sunny day is often followed by days that are drizzly and windy, but the seeds we put in J’s little greenhouses are making progress, and green is a prominent color in those little plastic containers that once held just seed-starting pellets.  While still on the iffy side of Spring, we are quickly recovering from Winter, and making ready the lighter, brighter things of this season and the not-far-away Summer.  Easter is less than two weeks away, and judging by the abundance of foam ‘chickens’ and colorful ‘eggs’ J’s been putting together, it won’t arrive a moment too soon.

Our calendars are marked for the next few signs of warmer weather.  Farmers Market will start its every-Saturday schedule on the 3rd of May; the upcoming appointments with the psych and the nutritionist are part of our Summer Schedule.  Dada has the week of July 21st off, and we’re planning that already…

Our biggest projects in the upcoming weekends are quite simple: readying the back yard for outdoor living over the summer months.  J is heavily involved in this because part of the purpose is to get him out there, tending to the garden, taking in some fresh air, and basically not letting him confine himself to the TV room.  The rocking chair is one significant element in this, and, judging by J’s reaction, he will thoroughly enjoy the patio this year.

We also have on queue a project involving an old table someone gave us.  For some inexplicable reason, this lovely table was painted with a matte acrylic pain, and it is solid wood so we’re going to have J work on stripping the paint off, prepping the wood for staining, and then staining the table.  We figure this can be done over the course of three weekends, maybe more depending on the weather.

While at the book sale a couple of weekends ago, I found two books on silk screening techniques.  Many years ago, Dada learned silk screening, and a few summers ago, TGG participated in a hands-on class.  Since I am always asking them to take some project over that they can do with J, I made the executive decision for them: silk screening is IT!  Regardless of the results, I am keeping my hands off of this particular project.  (I have plenty of shower curtain liners for the floor, the walls, the ceiling, and to make haz-mat-like suits for the men if need be…)

Summer, in other words, is shaping up nicely.  The only thing that we are currently worrying about is getting J new shorts for summer.  On Saturday morning, J got into, buttoned, but wasn’t yet completely comfortable in his size 40 pants.  J’s pants waist used to be 44 (I think that’s 112 cm, but I can’t swear it on a stack of bibles,) and now -when he wears these- he needs a belt to keep them up.  We noticed that he also needs a belt for his 42s (which are about 106 cm.)  His “aspirational” pants were the 40s (101 cm) and now he can button and zip them, but I don’t think they fit comfortably enough yet.  He’s on his way, though; perhaps by the time he goes back to school in the fall (about five months from today) he will need size thirty-eights.  We’re not holding our breath, but we are hopeful.

Every afternoon, J dons his exercise clothes and heads to the gym with TGG.  They are gone for an hour, and J uses the cycle machine and the treadmill.  He sweats.  J usually only sweats when it’s very hot and humid out, and now it’s an every day occurrence.  Little by little, he is getting slimmer.  TGG, who is more aware and more purpose-driven in the exercise department, has shed a bit of weight that has interfering with his clothing, his energy level, and his mood.  The two of them now look like two definitely-slimmer versions of themselves.

It’s not yet five months since we changed J’s diet, and yet I feel like we’ve accomplished something very important.  I don’t mean so much the weight he’s lost, but rather the habits he has changed.  The fact that J has managed to learn how to eat, now exercises, and can exercise better judgment when it comes to food and snacks.  Last night, for example, he requested a yogurt instead of chips for his final snack of the day.

If we add to all these things that J now doesn’t need his Risperdal crushed, but actually has learned to swallow pills (a feat that we are quite impressed with considering the years of gagging and choking that preceded it,) and that he is on half the medication he was on this time last year…well…not bad, not bad at all…

 

 

 

 

…I found the arrow…a little more mangled than I’d wanted, but still unbroke.

We arrive at Thursday.  We’re a little the worse for wear, but we’re in one piece.  J is doing well.  He is still repeating things ad nauseam, but the anxiety is slowly abating, and he is happier and has more energy.

Yesterday, after a day of anxiety (for me,) and excellent work (for him…I was too scattered to clean house, people) J came home in a wonderful mood.  His teacher reported another FANTASTIC day, and J emerged from the bus with a wide smile and happy disposition.  This continued throughout, and at 5:15 PM, without anyone suggesting or prompting, he came upstairs asking if it was time to run.  When we turned to look at the clock and nodded YES, he ran up the stairs to look for TGG, and off they went to the treadmill and the stepper and all that other good stuff.

The sight of J voluntarily bouncing up the stairs in search of his sweats and sneakers, and egging TGG on to take him to the gym…it’s just heartwarming.  The same kid who used to sit on his beanbag, or in bed, or on the sofa, like The Caterpillar does as he talks to Alice, now WANTS to go to the gym.  He’s more motivated to go to the gym than I am…

I think that we’re, once more, working our way through this med reduction in a positive way.  The difficulties of Tuesday have become clearer after talking to some of the people who interact with him.  The consensus has been “when he’s having a difficult moment, he needs to be taken to a place where he has space, and you cannot TOUCH HIM!”  Words of wisdom from the bus driver and his bus aide.  Yes, yes, yes…like a small child having a meltdown, J will not respond well to attempts at hugging or restraining him.  Space is needed, and there’s a BIP in place for that.

I understand that teachers, aides and staff feel affection for J, and I appreciate that they care about him, but I also know in my bones that -in those moments- J needs a firm response from the grown-ups surrounding him.  I love my son with all my heart and soul, but I cannot turn to mush just because he “seems” to need coddling; J’s realization of self-control comes from what we show him, and we can guide him to proper behavior without judgment.

All you need is love.  (Wah wah wah wah WAH!)  That’s true.  If there is love in your actions, something about them will have a better effect than if you’re acting out of habit.  Any task worth doing is worth doing well, a spoonful of sugar, and all that good stuff…yes, yes.  However, you cannot feed a moment of self-injurious behavior and anger with a “there, there, there.”  I feel the “there, there, there,” but it wouldn’t be helpful to J if I succumb to it; I save the “there, there, there” for when he realizes how sorry he is that he’s behaved like an ass, and he needs consolation.  The love is there, and so is the compassion, but there is also a lesson that I need to convey and I do.

I’ve learned, over time, to not get angry at J (at least not outwardly.)  I tell him that what he has done isn’t the best way to respond, for his sake and for other people’s sake.  At home we always say “we don’t negotiate with emotional terrorists.”  At school, because the world has become a place where a lawsuit has become the only expression of taking umbrage, there are tenterhooks that activate immediately among staff.  These tenterhooks, sadly, operate at the same time and in support of the layer of eggshells they’re already walking on.

Is that what we have done to this world with our sensitivity?  I know I complain and air out my grievances about certain things here, but I also think that I simply expect ANSWERS not just REACTIONS.  I have an emotional response to things that happen at school, but I turn the dial to RATIONAL, or -at least- I try to…I want to know WHAT we can DO to help J and staff.  This, from what I’ve heard, makes me an intractable hard-ass who is demanding and difficult to work with, but when I sit down for IEP meetings, we end up with very reasonable goals that I don’t expect the school to achieve alone…we are rolling up our sleeves and trying to support the system in its efforts for J.

The problem is, and I am wearing my chain mail and armor for this one, that we all think our kids are special and deserve the best, but we don’t fully realize that EVERY SINGLE KID is special, and that every other parent feels about their kid in the same way we do.  The esprit de corps that should exist among those of us who face a similar (lifelong) challenge with our children flies out the door when it comes to “what my kid needs.”  I ask if J is okay…after asking if everyone else is OK.  If J has done harm to himself, I will deal with that, but an important part of my mission in life where J is concerned is that he doesn’t ever believe hurting another person because HE is frustrated is an acceptable thing.

The urge to hug a person who is in pain, angry or frustrated is great.  There are moments when, if I could pick him up and hold him like I used to when he was little, I’d have J on my lap while I coo consolation at him.  When he is calm, happy, relaxed, there is a tremendous amount of cuddling and hugging and encouraging that goes on, but when he’s had a rough moment and needs his space to level off, I have to give him that, and a spoonful of disapproval with a bowlful of advice.

We’re cresting the hill…I’m sure there’s a nice, panoramic, softly winding road ahead, and some of it will be downhill, but hopefully gently, gradually.  I understand the need for plummeting (leaps of faith require the risk of plummeting, right?,) but I’m pretty sure we’ve found the right pass among the rocks on this part of the terrain.  If I could talk to the rest of the hikers (the ones in the team that doesn’t camp with us,) I’d remind them that love is awesome and appreciated, but that love sometimes has to mark territory and say “enough.”  There is, for J at least, solace in being told “there’s another way, and it’s available to you, but you have to be willing to put in the effort.”

And now, to Friday…

World Autism Awareness Day in the Tribe of The Clueless…

I have nothing against blue lightbulbs, blue shirts, blue pins, and the rah-rah feeling that comes attached to this date.  I don’t mind that it extends throughout the month of April, and we get barraged with articles stating the obvious: Autism is all around, affects many -not just the individuals on the Spectrum-, and it can have a tremendous impact on any family’s well-being and sanity.  (Ok, the sanity part was my contribution…I don’t think it literally says anything about that in any of the things I’ve watched, read or heard.)  Beautiful, miraculous things can come from autistic individuals, yes…

Repetitive behavior, echolalia, obsessive-compulsiveness, tantrums, inappropriate laughter and crying, non-verbal communication, difficulty in potty-training, temporary regression, varying degrees of developmental delays and mental retardation, lack of coordination, seizures, mental health issues, and so forth can also be part of the Autism Package (the Deluxe version, the Lexus of Autism, the whatever.0, the Beyonce-on-world-tour.)

We light up our front and back porch with blue lightbulbs throughout April; we dress in blue on April 2nd.  The other 364 (or 365, if it’s a leap year) days we spend living the Autism.  Whether people notice and wonder, feel compelled to dig deeper, or simply accept the label and assume the rest is entirely up to them.  Awareness is well and good, but can only lead somewhere if you actually put some effort behind what you’ve just been reminded exists.

For example, I am aware that poverty and hunger exist the world over.  This would be enough, I guess, if all we are aiming for is “awareness.”  We contribute to the local soup kitchen, donate cans for every drive we have access to, and know well-enough not to waste food or take for granted what is available to us when others suffer from want.  By the same token, you can be “aware” that Autism exists, that it afflicts many by altering the way they process everything that surrounds them, and how their families live and worry about the future, but if all you’re going to do is wear a blue ribbon and post some trite shit on your Facebook wall or your Twitter feed…what did you REALLY do?

I am all for Autism Awareness.  We need it.  Believe me, when we’re walking around and we notice certain facial expressions, reactions, we tell ourselves “have they never seen a family with an autistic individual out and about on a weekend?”  My guess is that every single person out there HAS encountered a family with an autistic individual while on an outing, but because we can all be SO different, we can also be SO obvious or SO unnoticeable.

Awareness is all well and good, but…how about understanding?  If people shoot for anything today, let it not just be “oh, Autism is real, and it doesn’t present with clear-cut signs that are the same in everyone;” shoot for “hey, living with this, for yourself, for your entire family, for the people who spend the day with you at school, for your physician, dentist, medical personnel, is not as easy as it might seem.  It’s also not as horrible as you might fear as you weigh in the balance whether to vaccinate your kid, or not.  It’s not the end of the world, but it seems -some days more than others- like an alternate universe.”

Over the years we’ve encountered all sorts of people.  We’ve met the ones who think Autism is a camouflage term for “our child’s a brat and we let him get away with everything.”  We’ve met the ones who think if we curb wheat and corn products, J will be “cured.”  We’ve met those who think prayer will show us the way (mind you, we pray…most of the time it’s under our breaths while struggling with a difficult situation, or hoping for clarity and a full-night’s sleep.)  There are also those who think J can recite the phone book, play a quartet (all four instruments, of course, at once,) and paint canvases that will make us millionaires.  There are those who think if they speak louder and enunciate better, J’s brain will light up and he will suddenly comprehend EVERYTHING.  There are those who think we LIKE the attention of having an autistic individual.  There are those who think they KNOW why J is autistic (pssst, it’s the vaccines…OMG, I TOLD you!  Yes, they say he was like totally normal and then MMR-time and POOF!  He was gone…speaking in tongues.)  There are those who think the school and the system do all the work, and we just sit here leeching off whatever resources are available.

And there are those who ask.  And there are those who valiantly sally forth into our territory and our lives, and realize that we’re the same as everyone else, but with a little more…mayhem?  chaos?  stress of a different ilk? thrown in.  There are those who, in the middle of experiencing this, realize that we are funny, and we love each other, and we know have to enjoy things because sometimes the opportunity is brief…

I stayed in bed a little longer this morning to relax because, quite honestly, the whole med transition thing has been nosing into my sleep.  I relaxed by reading Erma Bombeck’s At Wit’s End.  Somewhere around page 64, Erma wrote about finding her own identity; mind you, this is not a deep, philosophical, life-altering piece of writing…at least not in the traditional sense of what is considered deep, philosophical, or life-altering.  After much musing, Erma runs into correspondence addressed to her in her own name; she finds books dedicated “to Erma.”  She realizes that she’s Girl Scout Cookie captain.  She basically comes to the understanding that, well, under all the other layers of who she is, she is herself.

This is our identity: we are the imperfect, but loving, family of a young man who is autistic, and we walk around in the general population trying to adjust our situation to the general situation; we live in a contained space where we cannot simply remain because J needs to experience everything he can in order to properly adjust to a world not designed for him.  We are, in the process of rubbing elbows with other people and their environment, awkward, skittish, confused, joyous, exasperated, clumsy, observant, repetitive, uncomfortable, discomfiting, annoying, annoyed, and -above all- doing our gosh-darned best…

We know that the world knows Autism is there.  We appreciate the blue, and the bulbs, and the 60 Minutes-features on the subject.

Our concern is that tomorrow, and the day after, and the week after, and the year after, Autism will be here, and we WILL be dealing with it all the other days of the year whether the general population is aware of it, or not.  The same goes for every cause…cancer of every organ or system you can imagine, disabilities and handicaps of every ilk, hunger, devastation, poverty, endangered species, illiteracy, don’t stop being an everyday reality when their Awareness Day or Awareness Month is over.

We are, all of US on this planet, more than just the ribbons we choose to represent us.  A little curiosity about someone else’s shoes, and the terrain they trod, goes a long, long, long way…you can put the ribbons on the shoes, if you’d like, but understanding the walking conditions is even better.

 

The arrow ricochets…

Oh, Anxiety!  Old friend!  Where have you been?????  Oh, Hyper-focus!  Long time no see!!!!  And, lest we forget: Hello, Darkness…J’s old friend…seems like you’re lurking somewhere in there, too.

You guess right.  The med-reduction gamble is, so it seems, a bit of a bust.

J had, and I quote, a FANTASTIC day at school yesterday.  He came home in a good mood, chattering away and continued that way for a couple of hours.  As he put away his snack-time things, I noticed a small nick on his right thumb.  When I say it is small I mean you can barely tell it’s there; had it not been because it seemed a little pink around the edges, I wouldn’t even have noticed it.  I had him wash his hands, and we put a dot-sized band-aid on it.

TGG says (this morning…he should have said something last night) that J wasn’t as enthusiastic about exercising as he had been the past few days.  Dinner was a relaxed, enjoyable affair…

And then Anxiety set in, and J required the kitchen put to rights immediately.  He was quiet after dinner, had his med, pepped up some, and then went into hyper-focusing on trivial (to us) things.  That nick on his thumb became, to J, a bullseye; he rubbed his hand, made sure the bandage stayed on, protested when it appeared to be loose.  We got him engaged in putting together a brand-new puzzle, and we sang along to That’s What Friends Are For from The Jungle Book as we did this.  J found this entertaining, and was very happy and giggly until it was time for his shower.

Throughout the evening we’d had multiple rounds of his Bus Song, and of SCHOOL, LUNCHBOX, BACKPACK, WORKBOOK with his Proloquo, but he was calm throughout.  I can understand his wondering about whether there will be school or not because he doesn’t really understand the concept of weather interfering with these things, but we’ve made a very strong showing of how there is no snow to interrupt the school calendar now, and of telling him that his boots can now go back into the “Winter Clothes” crate.  The anxiety, low-key though it was, was present.

By bedtime we’re on a constant chorus of YELLOW BUS, SCHOOL, COFFEE, and I was pretty much preparing myself for a phone call today.  Mind you, I wasn’t being pessimistic, but I could tell that J wasn’t his usual peppy self.  There was something of the melancholy poet in his demeanor, and he kept worrying about that nick with its (now bigger) band-aid.

I slept fitfully.  I kept waking up wondering if J was sleeping well.  I can’t say I saw light in the hallway, but I did wonder…

He was up early today, and -speaking in an uncharacteristically soft tone- came to our room to ask COFFEE?  YELLOW BUS?  I greeted him with a very prompt and calm good morning, and he continued to speak very softly.  He was happy when he was getting ready for school, and Dada reporter a very happy J hopping on the bus to school…

An hour and a half later the story had changed.

During Art class, J’s teacher told me, something (undefined, undetermined, unidentified as of yet) set him off and he launched a bout of SIB, and -if the third-party reports are to be believed- he got aggressive towards others.  Because this information was exchanged during a rather rushed call, I could not be sure that he DID try to smack anyone other than himself until I had a chance to speak to the teacher with less stress.

Once back in his own classroom, J was quiet and left to his own devices by the aides.  His teacher, however, intervened and said “we have to stick to the BIP.”  As we spoke on the phone, J started crying; not the loud, wailing cry of one who knows he’s in trouble and is gunning for sympathy.  His teacher said “he is looking down at his lap, wiping his eyes, and you can tell he’s upset.”  THAT, my friends, is J’s way of showing regret.  THAT, my friends, we can work with…

I explained that we do deep-breathing to help him relax when he’s overwhelmed, and that this might be a good thing to try at school, especially when one has to have a difficult conversation with J.  In my book, any conversation that requires helping J understand that his feelings are totally normal, that he can -with a bit of effort- manage them, and that he’s not as alone as his Autism would suggestively whisper in his ear is a conversation that needs deep breathing.

The thing is this (and I realized the other day that I say “the thing is this” quite a bit…so there is more than “the thing” that “is”,) J is in need of an anchor.  J is in need of stability that will remind him that the boat is moved by the ocean, and he moves with the boat that moves with the ocean, but that he is still himself.  Coddling, yes, is wonderful, and -like every other man I’ve ever known (my apologies to any males who would think this too bold a statement…I’m talking about the men I KNOW rather than men in general,) J worries about not being as in control of things as he’d like.

There are concepts that are rather overworked in this world; there are so many people who are called “genius,” so many “heroes,” so much “courage” that people forget what these things mean.  J is brave; J is very brave.  J is brave within the limited framework of what his courage is being tested on, but he also needs a great deal of support because -from time to time- the framework expands, and new things are encompassed by it.

Today is going to be rough because I have to a deep-breathing conversation with J.  He DID head-butt someone, and -even though it happened because the BIP wasn’t followed and he was still “in the zone” when they tried to console him- it isn’t right.  We have put a call to the doctor and we will discuss with him what to do next.  In the meantime, I’ve spent quite a bit of time researching the possible effects of reducing Risperdal, and today’s episode illustrates a few of those.  I’ve also studied my notes from June of last year when we had the first reduction, and this is a more intense, more marked difference in behavior than then, but close enough to not send me into a panic…yet.

The situation is as I’ve described it to you, and I’m working on how to address all of J’s needs when he gets home this afternoon.  I am working on every angle that might present itself, and I’m hoping that we can ride this transition in med dosage well…but I’m ready to acquiesce if that’s what has to be done for J’s sake.  Setbacks are not unusual to us…ricocheting arrows are another story…well, no…not really…in this house even soap bubbles have a tendency to bounce repeatedly and cause chaos…

We’ll live.