Little pitchers and all that…

As we know, the Thursday before ESY started J had to go to Urgent Care because his thumb hurt.  The X-ray indicated there wasn’t a fracture, but there was a sprain of some sort.  The doctor fitted him with a thumb immobilizer that has become J’s best friend and confidant.  Add to this his penchant for wearing band-aids for no good reason other than to remind himself that he’s alive and breathing and you get a pretty alarming picture.

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We’ve had the same bus driver for 80% of the time J’s been attending school here in WV.  By now, four years and multiple bandaids later, she should know that our son has a flair for the dramatic.  This is the kid who will buy bandages EVERY SINGLE TIME we go shopping.  I’ve told Dada to invest in Johnson & Johnson since we’re helping keep the company going strong.

Anyone here have a child in the Spectrum who isn’t comforted by deep pressure?  Compression garments?  Weighted blankets?  Pillows piled on top of his/her body?  Cocooning?  Individuals in the Spectrum feel comforted by these things, and J is no different.  That he takes it to the point of looking like a Civil War walking wounded is an entirely different matter.

If you’ve never seen J and you witness this “look” of his, you’ll wonder what is wrong.  If you ask, I will gladly explain the whole thing to you, especially if you’re uninitiated in the intricacies of Autism.  I will even, if you feel that my explanation is insufficient, invite you to call the proper authorities so they can do an investigation.  I KNOW what it can look like to those who don’t know what J is like.

There’s another little quirk of J’s that poses a problem: echolalia.  J will repeat the very last thing you said, and this can be considered leading the witness.  If you, as an adult who should know he’s in the Spectrum and has trouble communicating, ask “are you hurt?,” you will get HURT as a response.  “Again?”  will get AGAIN.  If you ask him “was it a rampaging elephant?” J will respond with ELEPHANT.  I don’t mind people asking him, showing him pictures, asking him to point as long as they understand that J doesn’t have the complete ability to answer spontaneously 100% of the time, and that you are probably leading him to the answer you want.  That is why, when we go shopping, and he points to a general display of items, I tell him FIND THE ONE YOU WANT.  I step back, and I wait patiently until he gets that he is the one who has to choose.

Asking a question about whether he is hurt again in front of a busload of special needs students who might go home and say “J is hurt again” is not a very good idea.  Some kids will repeat what they hear.  Other kids will embroider and filigree what they hear.  It might not happen, but it also MIGHT happen.  It’s a possibility…

Every single person that works with J is welcome in our home.  We actually make a specific invitation to come and see how J lives, what our set-up and our system is at home, what our expectations are, and how he navigates it all.  We remain in constant contact with staff from school, and we try to make sure they understand what we’re aiming for here.  Whether they take us up on it or not is entirely up to them, but we wouldn’t ask if we didn’t mean “come over and see what we do.”

I love when people are genuinely concerned about my son’s well-being because it tells me they care, and they will tell me if something seems fishy.  I don’t mind people asking me questions, and wanting to make sure that he is being treated properly and respectfully.  What I do mind is when people call out, from inside the bus, asking J if he is HURT AGAIN!!!!???? in front of a busload of impressionable kids who cannot process the situation with the clarity of their neurotypical peers.  None of these kids can ask J “hey, dude…are you ok?  Is something happening at home?” and then -as concerned friends- take it to a grown-up for follow-up.  These kids can only repeat it at home in a way that their parents won’t be able to interpret based on their knowledge of us, and of J.

Discipline doesn’t mean mistreatment, and we don’t take advantage of J’s inability to communicate when we scold him.  We explain why we’re upset, and we do our best to get him to understand when he’s done something inappropriate, dangerous, risky, rude, and so on and so forth.  Our biggest problem, perhaps, is that we work gradually to wean him off the comfort items he cherishes and we respect what they mean to him.  I always let teachers, staff know when he’s really hurt, and how serious it is; I always inform the teacher if he is sick, and what treatment he is undergoing.  I don’t do this because I am afraid of misunderstandings but rather because J cannot explain for himself how he’s feeling or why, and what’s being done to help him.

I am J’s voice, and I will speak for him when I have to, but I will also allow others to question what I say because I have nothing to hide.  Echolalia is a dangerous thing because not everyone understands how to ask questions of a person who resorts to it rather than to spontaneous speech, and J’s privacy should be respected even in cases of extreme concern for his safety.  A neurotypical child questioned about his/her well-being and safety will not always be upfront about the situation, especially when it’s done in a public and potentially (to them) embarrassing manner.  Asking the child/adolescent/adult in a more private setting, establishing an environment of trust and safety will create a better opportunity for sincerity and confidence.

J’s fine.  He’s healthy.  His thumb has healed and we’re working with the timer so he leaves his beloved thumb immobilizer off for short periods of time throughout the day, BUT he does feel his hand needs to be controlled.  I don’t know why…maybe it’s hereditary OCD, or maybe it’s that splash of bipolar disorder that dwells in my mother’s genes as passed down through the generations.  I have to respect what he thinks that brace is doing to protect him from himself…and I will work on alleviating his concerns in any way I can.  If, for the time being, J thinks the brace is necessary, then the brace is necessary.  It may very well be that it goes the way of the boxing gloves, the Rasta hats, the whole milligram, the three-quarters of a milligram, the half of a milligram of med…or maybe, like Slinky, it will stay as part of his everyday needs and supports.

I can live with that.  I accept that it’s the way it is for now and might be for a long, long time…  But ask me, please.  Don’t assume and unwittingly spread that J might be in danger…  Ask me.  That’s what I’m here for…

The soul-crushing process of completing an ABAS…

You think you’re doing so well.  You think you’ve made vast amounts of progress.  You cannot say enough good things about how your child is improving, evolving, advancing…  You have been feeling pretty darned good about yourself and all the work you put in, and let’s not even start on how much praise you’ve been heaping on your little warrior, your trouper, the light of your life…

And then all those zeros start getting circled.  And then you start asking yourself the really difficult questions: how much of what your child does is unprompted?  How much of what your child does is spontaneous?  How much of what your child does is meaningful?  The section on Communication had a whole lot of zeros on it, and then there were the Community Use and Functional Academics sections.  When it comes to Home Living and Self-Care, J is aces…the rest of the time he tiptoes along the line of “hmmm…no, not really!”

Of course, you are given the option to check the Comment section and make a brief note in page 10, but what you really want to do is write a testimonial that says “this doesn’t sum up my son,” and then proceed to explain that he doesn’t laugh at jokes, but that his sense of humor is definitely intact and functional.  You want to write down all the wonderful things he does to document how well he is doing, but you can’t because that’s not the way this works.

After J’s recent psych appointments, his willingness to change the very core of his routine, the reduction in medication over the past year, and his IEP, we were feeling pretty fancy and smug about how well he’s doing.  Let’s face it, J is a rock star.  J is a badass.

Except on paper.  On paper, J is a hot mess.  J is a dithering, blundering mess.  I like the flesh and blood J a whole lot better because he is more real than the on-paper J.  When a questionnaire (assessment…a rose by any other name…) tries to reduce J to an essence of skills, abilities, achievements and hot-button issues that identify him as “in need” (or not) of services.  On-paper J has to fit a typical picture that doesn’t quite match the person that he is in the flesh.

As a parent and caregiver, you feel somewhat crumpled by the realization that your child is a sketch of himself on paper.  J is a stickman version of himself when I fill out these questionnaires, and I end up walking around asking myself (often quite insistently) if I’m imagining all that J can do, and does!, in his everyday life.  I spent a good deal of time this morning going over the questions and trying to, by glaring at them insistently, imbue the circles I’d drawn around the answers with intelligence that -hopefully- will be picked up by the assessor.

I know: fat chance.

J as a series of signs and symptoms, characteristics and markers, inabilities and faults is what they need to measure to determine if he qualifies for certain things.  There is no malice in the process (except when they ponder if we’re exaggerating his lack of prowess to see what we can get for it,) and there is also very little interpersonal warmth involved.  It is not that they do not care on a human level, but they can’t get involved because seeing -day in and day out- waves of humanity with their frailties and needs exposed would cause sufficient damage to provoke early retirement for many.  TGG has learned this; he still needs to withdraw for a while when a patient he’s developed a bond with takes a turn for the worse, or dies.  You see suffering, he says, and you want to fix it, but you can’t always fix it, and so you have to go into “clinical mode” and address the issue from that angle.  You care, but you are aware of the limitations of your abilities and of the patient’s situation.

I do the same thing.  I want to send every vibe about how amazing J is into the pieces of paper that pass my hands and require my attention, but I have to be brutally honest.  No, he doesn’t always spontaneously say hello and goodbye, and I have to remind him to move out of people’s way.  He doesn’t know how to use the phone, and all he does is hand it to me when it rings and I point at it with my chin because my hands are covered in soap from the dishes.  No, J doesn’t leave the house unsupervised, and he wouldn’t know to call and tell us he’s going to be late if he did.  J also doesn’t have a circle of friends, or spontaneously seek people out.  J doesn’t know how much change is correct change, and he doesn’t always remember to look when it’s time to cross the street.  He is neat, helpful, smart, proactive, energetic, focused, amenable…but…

On paper he’s a lot of zeros, a bunch of ones, quite a few twos, and a solid amount of threes that, ultimately, don’t add up to a big number that will impress anyone who’ll say “he’s got a bright future ahead of him.”  He adds up to a lot of “needs” and “requires.”  It’s a lot to chew on, isn’t it?  Wonderful though he is, amazing though he is, impressive though his progress and evolution have been…on paper J’s just not all that, is he?

It’s all part of the process, and it reduces one’s son to an essence that says very little of who he really is, and what you’ve put into getting him to the point where he’s at, but that’s the way it works.  The same sinking feeling one gets when, upon arrival at any university, one stops being a person and becomes a student number is repeated in this case: J is a portrait of his disability, not really everything else that is oh-so-very-J.

I’ll live…I’ll need chocolate, but I’ll live.  🙂

The long weekend made longer…

TGG is away for the weekend.  He left yesterday morning for work, and then drove to the airport in the afternoon to catch an early evening flight to Texas.  We expect him home sometime around 8 PM on Sunday.  J knows TGG is away, but this doesn’t mean he hasn’t asked for him almost constantly since 6 PM last night, right before we took him out to dinner.

Modern conveniences make it possible for TGG to call J iPad from his iPhone, and last night we experienced that moment when J sees his brother, live and in color, in an entirely different location.  To say that it was strange is an understatement.  We had to repeat where TGG is, what he is doing there and when he’ll be back more than several times before J finally petered out.

We petered out shortly after he did.  The day had been long for more reasons than one.  The day before a long weekend is always hectic at work, and J had endured a rather difficult morning on Wednesday so yesterday was a re-focusing day for him.

Wednesday was a day of overstimulation and reaction.  Right off the bat, J had to wait for the bus while a large cement idled in the driveway.  After fifteen minutes of this, the classmate that took to screaming on the way to school proved to be too much for J to bear.

While the meltdown was short-lived, it was a meltdown nonetheless.  I heard through the driver that regularly transports him during the regular school year, and I was ready to acknowledge the situation when J came home.  He seemed relieved to know that I understood what had happened once I recounted the whole cement-truck incident, and explained that a screaming classmate in a small space while the engine roared wasn’t necessarily something I’d react to gracefully.

We tried to prepare for TGG’s trip as much on the casual down-low as we could, but we didn’t exactly hide from J that TGG had plans.  In the morning, as agreed, TGG told J he was going to work, then to the airport, then to Texas, and “I will see you on Sunday.”  Of course, the boy who consistently forgets his colors would forget what TGG said almost immediately.

Our strategy has been simple.  We repeat, repeat, repeat, repeat where TGG is and when he’ll be back.  We’ve put TGG’s photo up on the PECS schedule for Sunday evening, and we are ready to take FaceTime calls from TGG in the evenings so J can see that his brother hasn’t completely disappeared.  Putting a pin on the map showing where TGG is and tying a thread from that pin to the pin that marks where we are has helped also.

Well…

5:30 a.m.

Somewhere under the many layers of my sleeping mind, I think I hear Captain Queeg’s steel ball bearings clicking.  The realization that what I hear in the darkened doorway is Slinky dawns on me…

J:  BROTHER???

US:  He’s in Texas. Back on Sunday. Go to bed.  (Muffled, of course, by pillows, blankets and sleepiness.)

J shuffles back to his room, and we see the light turn off.

5:32 a.m.

J:  BROTHER??? COFFEE???

US:  He’s in Texas; back on Sunday. (A quick round of ‘rock paper scissors lizard Spock.’  I lose.)

ME:  I’ll put a timer for the coffee.  (I stumble over a cat, trip over my own feet, almost walk into the door frame, drag my way to J’s bedroom.)

During the time it takes for the iPad to turn on (which is, by the way, a lot longer than one would hope at such an ungodly hour):

J:  BROTHER??? COFFEE??? BROTHER??? COFFEE???

ME:  We’ll have coffee on Sunday in Texas; your brother yeah yeah yeah…coffee…Texas…brother…Sunday…go back to bed.  ( I could have been more patient, but I forgot my glasses, was only illuminated by the iPad screen, and was trying to do Math to determine how long I should set the timer for…)

As I walk back to my room after closing J’s door:

J:  BROTHER??? COFFEE??? BROTHER??? COFFEE???

ME:  Sunday. Later. Sunday. Later.  

I close our bedroom door behind me, and walk towards the bed.  I realize J WILL open the door.  I turn back and lock it.  I know he can easily undo the lock with his nail, but I hope he will realize this is a “boundary.”  I try to find my spot in bed, but Dada seems to have expanded, and two cats are now curled up on my pillow.  My love for animals is less than I imagined.

We manage to doze off in spite of the increasing amount of light filtering through the curtains, and the state of alertness that comes with having been awakened by J at 5:30 on a morning when we hoped he would sleep in…)

6:25 a.m. (Through our closed bedroom door)

J:  COFFEE??? LATER.

He pauses.

J:  BROTHER??? SUNDAY!!!

He pauses again, and I realize this is most definitely NOT over, but my plan of sleeping until seven is toast.

J:  MOVIES????? MOVIES????? MOVIES?????

ME:  Yes, yes, yes, movies…get your movies…  (As I sit up I realize there is one cat on my ankles, and another on my abdomen.)

Dada has a look on his face that tells me “I’m trying to convince you that I am still asleep.”  I poke him gently on the ribs and say “you wanted children…I only gave them to you!”  He groans and opens one eye, smiling that dazzling smile I’m so madly in love with, and sits up in bed.

6:35 a.m.

I’ve found my glasses, removed the cats from the bed, pried Dada from under the blankets, and move towards the door hoping that I will make it down the stairs without a drop of caffeine in my system.  I open bedroom door and find that J has been patiently, and quietly, standing there waiting for me to come out.

J:  MOVIES???  MOVIES!!!  COFFEE???  COFFEE!!! BROTHER??? SUNDAY!!!! MOVIES??? MOVIES!!!

Swiftly, reassured that his day (and ours) is underway, J bounces down the hallway to his bedroom, dissolving into giggles all the way.

Hey, at least we got the BROTHER SUNDAY part down pat…

 

 

…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.

 

A funny thing happened on the way to gratitude…

Gratitude is a strange feeling.  We say “thank you” a lot, but we don’t always realize what that means or implies.  J is a big fan of THANK YOU, but it often sounds like what he means is F*CK YOU.  With him it can be such an automatic response that the urge to say “yeah, yeah, whatever” is often there, on the tips of our tongues, waiting to tumble out.

I will confess one thing to you: our gratitude is often arrived at in a crash, or expressed through gritted teeth.  This is not because we don’t have what to be grateful for, but rather because -a lot of the time- we end up being grateful for things we might have been dreading, and things we were unprepared for until they happened.

Take, for instance, the Teeth Issues that dominated the first half of 2013.  We are, surprisingly enough, grateful for those, and we really would not have dreamed this gratitude was at all possible.  We are grateful because of several things: a) J’s teeth have been taken care of, b) J actually learned to communicate better in light of this situation, and c) we realized J is a lot more resilient than we thought.  We are grateful that The Kid Who Was Godzilla has learned (somehow, someway) to manage the anxiety that would have turned Teeth Issues into a catastrophe a mere three years ago.

For some strange reason, we are also grateful for J’s recent meltdowns at school.  I know this sounds weird (wrong even,) but the truth is that we have figured out that it’s not the medication that J is having issues with, but rather some sort of -as yet undefined- dissatisfaction with the environment there.  While we are not grateful that we don’t know what causes this behavior, at least we can be grateful that it is not a constant attitude that seeps into everything he does and that reverts us to where we were when we couldn’t even go shopping without incident.  So, let’s say we’re grateful that this is contained to one location so far, and that we can work on solving the mystery of its provenance as diligently as possible.  Our success hinges on so many factors that it’s not even funny, but…we’re grateful that we are no longer entirely paralyzed by the notion of having to figure things out.

We are grateful that TGG seems to be maturing a little more with each passing year.  I say “a little more” because nowadays kids aren’t fully ready for the adult world until they’re much older.  At the age of 22, TGG still hasn’t fully grasped the complexities of adulthood, and -from time to time- he will do something tremendously bone-headed, but we are grateful that he has moved one more step away from his innate stubbornness and generational arrogance.  It might be that he realizes he’s too old to not take advice, or that we’re too old to put up with childish bullshit from a grown-up, but -inch by inch- we’re moving forward on that territory and, eventually, we’ll be firmly planted in Grown-Up Land…or, rather, TGG will be.

We’re grateful for the Keystone Kops-like quality of our guardianship process.  If that hadn’t exploded in our faces when it did, we wouldn’t have been angry enough to get REALLY proactive about the whole thing.  Until we had to actually take over and bypass the attorney, we didn’t know what the heck we were doing, or how to work through the intricacies of the process.

Annoying and overwhelming though it has been this year, we’re grateful for Dada’s job.  At a time when so many people are trying to make ends meet, we’re doing that, but with the certainty that -for now- there’s a steady income to support us.  In the great scheme of things, we have all we need, and we are not facing any desperate want.  There are so many people out there who have nothing, and need so much…we haven’t taken a vacation in years, but we have a roof over our heads, food on the table, medical and dental insurance, and what more can one really ask for???  Love…and that we have in spades…

We’re grateful, even when we think it’s a backhanded blessing that we’re being given.  Do we deserve all that we get from life?  Not all the time, no.  I admit to you, and this is not an easy thing for me to say, that I don’t deserve nearly half of what I get.  I am, you see, a bad daughter and a bad sister, and being as good a mother and wife as I can be doesn’t fix that.  I am suffering from terminal petty selfishness, and there are things I cannot let go of because I am not as good a person as I’d like to be.  That I am, in turn, being deluged with all these wonderful things makes me feel terribly guilty, and I feel even guiltier when I say to myself that I am thankful for all the good (backhanded or no) that comes my way.

This is the thing: we have a severely disabled  young man we are raising; his future is uncertain because, well, all futures are, and the complexity of disability and such plays heavily in this mix; we don’t  own our own house, and the one we live in is, truly and sincerely, a tremendous luxury that we’ve committed to because -selfishly- we want to be more comfortable, and we want J to have his own space; we have debt that isn’t crushing…if I worked outside of our home, which I don’t do because we’ve decided I should be 100% available for J year-round.  We have a ten year-old car that runs beautifully, but has emotional issues; we have a 22 year-old son who’s learning to be a grown-up and sometimes resents us for expecting more from him than he wants to give; we have aging parents that we don’t see as often as we should; we are aging very quickly, and not as gracefully as we’d like to, but we are trying -very hard- to not fall apart in the process.

Sometimes I look at our life, and I ask myself why are we so happy???  We live paycheck to paycheck, have an 18 year-old who needs supervision when he showers and can’t count farther than 30 (on a really good day,) never go anywhere exciting or do anything fantastic.  Our home is decorated in the style I like to refer to as “genteel decay on a broken shoestring,” and we don’t belong to a cool social set.  We play board games, buy the Sunday Edition of the New York Times once a month, and take a whole month to read it, curl up on the couch to read together, consider a 100-dollar pair of shoes an excessive luxury, have disjointed traditions that don’t fit with those of the rest of the world, own more rugby scrum caps than a whole rugby team would need even though NONE of us play rugby, dread the notion of a car repair or a major medical emergency because either would crush us financially, and can never own a dog…and yet we’re disgustingly, profoundly, sincerely, honestly, wholeheartedly happy…

Through gritted teeth, and directly from the deepest corner of our hearts, we are happy…and if that isn’t enough cause to be grateful, then we can add all the little trimmings that go on the side: our kids are funny, smart, interesting, a little weird; we are madly in love with each other; we cook really well; we have our health, even if it squeaks from time to time…  We are grateful.  Grateful.  Grateful.  Grateful…and today we can say it without gritting our teeth, and with the house smelling of turkey that is slowly roasting, and cats that are snoozing in corners, and J that is walking in and out rooms demanding attention and then immediately rejecting it, and TGG pushing gurneys and waiting for 4 o’clock, and my family diaspora that I can never repair, and Dada’s family that we don’t see often enough, and still we manage to live steeped in love and the craziness of our “normal.”

And for all that we are grateful, no “yeah, yeah, whatever” about it.

An excursion of sorts…

This morning J and I made our way to the doctor’s office for his initial check-up with the new primary care physician.  Last night suspicion that today was not quite a holiday arose in J’s mind; I know this because, in spite of having looked at the PECS board all weekend and seeing that innocuous activities had been posted in lieu of the BUS and BACKPACK, J asked -no less than 29 times- if we were making COFFEE in the morning.  While already upstairs, he asked for a book.  After reading the book, he asked about COFFEE, MILK and HOME again.  I reassured him that we would be home, but I had to skip out of the room before he added more nouns to his line of questioning.

When I finally asked him, at exactly 8:10 a.m., to get dressed, J looked at me with an expression that said “I KNEW IT!!!!!!  You’ve TRICKED me!!!!!!!!!”  He gave in; he dressed for our outing and calmly walked to the clubhouse so we could wait for our cab.  The driver, when he saw J’s impressive dimensions, said he had to sit up front.  J realized that this man was not particularly thrilled to have him in his vehicle because the man flinched when J climbed on and the shock absorbers absorbed the shock.  Our son being as perceptive as we all know he is, the rest of the drive to the doctor’s office was peppered with “SAY AAAAAH!” spoken quite clearly while turning his head to the driver.  The man couldn’t lean farther out his window enough…for a moment I thought he’d end up driving with only one leg and one arm inside the cab.

The man wasn’t so much “mean” as horribly uncomfortable with the large, imposing, sweet-faced dude sitting next to him.  That we sat in traffic and he had to hear “SAY AAAAAH!” while watching cars slowly (painfully slowly) trickle past the green light didn’t help matters.  When we got out, J recognized this particular building as the one where he’s been to the dentist, so he wasn’t thrilled about getting out there, but he graciously said THANK YOU to the cab driver.  Me?  I got the stink-eye from the kid.  I had to make sure that I used the entrance farthest from the door to the dental surgery, and that I steered him directly towards the Family Medicine Practice.  Until we passed the portion of hallway shared by the Dental Clinic, the Dental Surgery and the entrance to Family Medicine, J was walking so fast that I thought he’d crash through the one set of doors that was closed rather than use the other set that was open.

The vastness of the waiting room and the complete absence of small children soothed him immediately.  Once we signed in and found a place to sit, he discreetly asked me if we were going to see the DENTIST.  I told him NO, this time we were here for the DOCTOR.  His fingers found the DOCTOR’S OFFICE folder in his Proloquo2Go, and he listed all the things he was going to have done: CHECK BLOOD PRESSURE, CHECK WEIGHT, CHECK TEMPERATURE, CHECK HEIGHT, LISTEN TO HEART, LISTEN TO LUNGS.  I pointed out that he was also getting his flu shot, and he took this in stride.  At least, he must’ve been thinking, the only child wailing and complaining will be me.  The nurses were very helpful and he behaved beautifully.  His blood pressure was better than I expect, but high nonetheless.  His body has to work very hard with all that weight on it, and that was part of the reason we were there today: his weight.

The psychiatrist had suggested we consult his doctor about putting J on Metformin to assist weight-loss.  We spent the past week reading about this, and we reached the same conclusion the doctor reached: if the blood work doesn’t indicate that J is diabetic (which she didn’t seem convinced of) then this particular med won’t do the trick.  We’ll know for sure after his lab work on Saturday morning (because what better time to run out of the house with a child that’s been fasting than a Saturday morning!!!) and the follow-up visit next Wednesday.  J, it seems, is as healthy as we think he is, but his body has the challenge of extra weight foisted upon it by using the Risperdal which, of course, comes into play because of the behavioral issues caused by the anxiety that stems from his Autism.  So J’s only health problem, in a nutshell, is his Autism.  Not bad, I’d say…not bad at all.  That is: it could be SO MUCH worse!!!

Look, I’ll be honest with you: J is “fat.”  J’s carrying around 285 pounds (about 130 kg) on his 5′ 10″ (1.7 meter) frame.  That’s a LOT!  Yes!  But…according to certain calculations (height and wrist circumference) and the fact that J is male, the frame that carries his body is LARGE.  J IS imposing, no doubt about that, but he’s also basically big no matter which angle you look at him from, and the bulk that worries doctors, cab drivers and parents alike is in his abdominal area.  The rest of J is absolutely and completely proportionate.  Yes, his BMI is off the charts, people, but it’s being measured based on height and weight, and the fact that he is male…and a good part of his weight comes from those large, heavy, solid bones of his.

I’m not trying to minimize the issue here.  J needs to lose weight, BUT…

I told the doctor today, and I meant this from the bottom of my heart, J will never have that lanky, lean, long, athletic frame that Michael Phelps has.  Not only has he not worked at being long and lean, he’s also not genetically coded for it.  If J loses weight, even if it’s a significant amount of weight loss achieved, he will still be a Big Guy.  The question here is not to reduce J’s size, but to reduce his health risks and his waistband…that’s not size, people; that’s volume.  J’s frame is meant to hold those big hands, impressive legs, stout body.  Unless there is a chronic medical condition requiring the use of the Metformin, well, it ain’t going to happen.  We held out on medicating him with the Risperdal until he ACTUALLY needed it, not because it benefited US.  We will hold out on medicating his weight…we can find other ways to do this, even if it requires a complete overhaul and re-education about food for an entire household.

We left the doctor’s office in a good mood, buffeted by the strong breezes that made us huddle together as we waited for the cab.  I’d brought with me Mouse Soup, and we stood under a pergola, me reading out loud (much to the amusement of passersby) and J smiling and filling in the parts of the story where I paused.  On the way back, our cab driver was much more comfortable around J.  He asked where we were going and, once we started moving in that direction, J -who sat next to him on the front- tapped him on the shoulder and motioned to the radio.  “You want music???”  The driver fiddled with the knobs and waited until J motioned for him to stop at one particular station.  “You like that one???”  It was a short drive home.  No traffic.  No anxiety.  No “SAY AAAAAH!”  Just HOME, HOME, HOME.  And THANK YOU when J stepped off the cab.

We’ll figure this out…one thing goes wrong, and another is bound to follow, and then another, but…something will go right…here or there or further down…we’ll figure this out.