Icy days and visits to the psychologist get me down…

This one, I must point out, was a chirpy one.  He’s obviously been in practice long enough to have witnessed the progression of Autism from “it’s the mother’s fault” to the iffy slippery slope where you don’t quite know what the parent is going to blame the kid’s condition on…and then came the Sheldon Cooper comment.  “You watch The Big Bang Theory, don’t you?”  He said this as he placed my neatly stacked, clearly indexed, conscientious sample of documentation regarding J’s “journey” as an autistic individual.  It may not be the mother’s fault, but clearly there’s something punctilious about this middle-aged woman who sits before him explaining the map.

“I have to say these are the neatest files I have ever been given by a parent.”  And elegantly frantic scribbling on his notepad.  “Usually I get a notebook handed to me, and a get whatever you need from there.”  Nervous titter from me, and a clumsy apology: I thought it would expedite things?  “You even gave me a nice index.”  Mentally I am cursing colorfully and in more than one language.  “Well, it was a reminder for myself…I wanted to make sure that I had included everything your form letter requested.”  I hate it when they hmm…

We spoke briefly, in spurts and jolts, of the change J experienced overnight when he was 22 months old.  We discussed his development.  He asked me about my other children.  I explained that TGG and J developed at very different speeds, and he hmm-ed again.  “What do you mean by different?”  Well, I said: TGG was super-fast about everything…turning over the Sunday we brought him home from the hospital…J waited six months.  J didn’t walk until well after his first birthday, and TGG was escaping his playpen when he was six months old…  They were just different babies, and everyone thought I was just comparing them because I liked TGG better.”

Mental cursing goes into overdrive as the doctor’s eyebrow twitches almost imperceptibly and he scribbles some more.  “But you don’t subscribe to the theory that it is a detachment between mother and child that causes Autism, do you?”  Well, no, I said…J was breastfed for four years because I realized he was not making eye contact, not responding to his name, and so on and so forth, but everyone thought I was exaggerating.  At this point a voice inside my head is screaming SHUT…UP!!!!!  (I think it’s Doc Martin, but I cannot be sure because I am aware that the doctor is looking at me.)

imagesAt this point, without me intending for it to happen, I answer a question about something by mentioning my mother.  The comment makes the doctor put two-and-two together, and it is clear that I am Leonard Hofstadter…

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and Penny going up the stairs while talking to Leonard’s mom all rolled into one extremely organized, ridiculously neurotic bundle.

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During this encounter, J and Dada have been in another room and J has been assessed for things like signing his name, answering simple questions.  Dada, wise man that he is, has remained silent for the duration of his interaction with another adult.  I, moronic middle-aged woman that I am, have been all too voluble.  First I was Sheldon, then I was Leonard, then I am Penny and Leonard’s mother is all over the place, pecking at me…  In the words of my long-ago ancestors: oy vey.

When J and Dada walk into the office where I’ve been sitting (and sweating) I am overjoyed.  I try to keep it in check.  J asks for his water and cookies, and sits quietly to eat and drink while the doctor’s eyes dart from one of us to the other two.  A few more questions followed by a few more answers that probably come across as prevarications on my part, and I’m handed yet another clipboard with yet another assessment that I am to fill out before we are free to go.

While sitting in the waiting room completing my assignment I revisit all my blunders since we arrived.  “I’m sorry,” I tell the receptionist, ” could I have some paper towels?  We seem to have made a small lagoon with the snow we dragged in with our shoes.”  I then recall that I got down on my knees to dry the floor and the soles of J’s boots; the lady that was sitting with her three boys just a few chairs away looked at me as if I’d just fallen from Pluto (after its demotion from planet-hood, of course.)  I concentrate on answering the assessment sheets (I’ve done this before…I got this!!!!) and then I add up the scores…  J sits at a solid “he’s autistic!” and yet I feel like we somehow are meant to bring in a more “damaged” item of a human being.  Why is that?  Why is it that when a personable young man who pretty much minds his manners and follows instructions walks in, I feel like an idiot?

On paper you get a disaster, and in person you see someone who navigates quite nicely.  When I see J on paper I want to let my shoulders droop in despair, and when we go to be assessed in person I feel like I’ve lied on every form I’ve filled out.  Somewhere in my subconscious I am sitting (all of 8 years old) with a band-aid on one knee, a scrape on my elbow, chewed-on fingernails, too-short lopsided bangs cut by my aunt in one of her “let’s just take a little…bit…more…off!  Oh…,” and I want to make sure that the doctors know it’s not the 8 year-old who’s raised this child and addressed his “issues.”  The fifty year-old also wants to scream that she’s not as uptight and anal retentive as her folder seems to illustrate.  “I really meant to come in and throw the papers in the air and make you dance for them,” I feel like saying.

On the way home I am quiet.  Dada asks what’s up while J repeats TARGET TARGET TARGET from the back seat.  “Oh, I can just picture what that psychiatrist is going to write in his report,” I sigh. “Ah, you mean: this young man is perfectly normal and his mother needs several sessions with me because she made an index and has mommy issues?,” Dada says with a smile.  “What????,” I jump in my seat.  “It’s what you’re thinking…and, heaven help us, we’re none of us “normal,” he releases the steering wheel briefly to do rabbit ears, and then resumes his position as the capable driver.  “Were you going for normal?  Why are you always going for normal?  Normal, someone has told me REPEATEDLY over the years, is relative.  It’s also no relative of ours…”  That makes me laugh…I’m being quoted to myself, and I suddenly feel like I make sense.

J keeps saying TARGET TARGET TARGET TARGET over the voice of the navigation system.  I think she (we call her Amy Farah Fowler) is about to say “yes, yes, we’re going to Target…put a sock in it!!!”  Dada says “he sounds like a missile launching system.  Why didn’t he do that at the doctor’s office???”  I sigh: “manners…we tamed the manners of the socially-inept…go figure!”

 

 

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Baby, it’s (very, very, very, VERY) cold outside

Our car is being driven around with a thin sheet of ice that doesn’t seem to decrease at all even when the engine is running.  J is no longer dreading Kierkegaard’s call, and just assumes that if the phone rings at around six it must mean that the school is closed the next day.  We got caught in a blinding snow squall yesterday, and were happy to make it home in -more or less- a straight line.  Winter isn’t ready to let go, and if you haven’t seen the video of Niagara Falls you probably don’t know what the ado is all about…

In a nutshell: it’s cold.  It’s so cold that the cats that had been dashing around in fits of cabin-fever propelled hysterics have now parked themselves (like so many lumps) under the bedspreads of whatever room is being warmed (ha!) by the sun at any given time.  J’s appointment for his evaluation tomorrow promises to be like something out of a Russian novel, only without sleighs, women stepping in the path of trains, countless characters whose names are easy to confuse and the image of people riding some conveyance while wrapped in furs.  Ok, not furs…we don’t have furs, but there will definitely be some sort of blanket in the car, just in case.

It isn’t easy to find new and exciting things with which to occupy our time while Dada and TGG are at work, but J and I have managed.  The chores take up about an hour of our time because we are doing them very…very…very conscientiously, but we also have started cross-training with letters.  That is: I write the grocery list, and J transcribes it first in his Proloquo2Go and then with his rubber stamps.  It takes a (long) while, but between fingerspelling, saying the letters, finding them on the keyboard, and then using the rubber stamps, we are definitely making some progress.

P1100740 P1100743 P1100745 P1100747

Of course, I have to explain that J goes out of his way to match the color of the ink with the color of the line that frames the letter on the wooden handle for each stamp.  He also has trouble spacing his letters properly and either jams them all together, or leaves way too much space between them.  If you could take a look at my fingers when we are done, you might notice that I have quite a bit of ink on them because I try to create some sort of barrier for him.  Some times it works better than others…

A list of nineteen items took us about an hour and ten minutes, but it was time well spent.  J had fun.  He likes that the Proloquo tells him the letters, and then calls out the word for him.  While we were preparing lunch, he organized all his materials and pinned the list to the fridge with a magnet.  When Dada came home he asked about “the manifesto I see on the fridge.”  I told him it’s our grocery list.  Slightly alarmed he asked “THREE PAGES!!!!?????” and then he realized, by the colorful lettering, it was all J’s doing.  That changed the tone to “THREE PAGES!!!!” because he knew I’d managed to stave off boredom and ennui for a good while.

It should be a fairly decent indication of how the weather has been that we are actually down to one very closely dispensed load of laundry.  J has also organized some things to such a level of precision that his next step will probably be to disorganize them so he can start from scratch all over again.  I intend to buy another set of white cubes for the dining area this weekend IF we can get out of the house for some actual non-essentials shopping.  I have been meaning to reorganize the cookbooks, and this would be a good project to engage J in if the weather (as is predicted right now) is not apropos for going to school early next week.

The thought that spring is a mere 28 days away doesn’t seem like much consolation when you look out the window and see the remnants of a plant that died in November solidly encased in ice.  Not only do I have to deal with the fact that I killed the plant (I don’t want to talk about the circumstances,) but also that I didn’t give it a proper send-off to the great beyond, and now I am supposed to look at its carcass looking back at me with frozen accusation in its beady little eyes…  I will pause for a moment to say Yes, I’m being melodramatic, and yes, I know plants don’t have eyes, but it’s cold and we’ve been in here for a few days and when you watch as much Midsomer Murders, Rosemary & Thyme, and so on and so forth as we do, well, it gets to you.  And you can recommend other viewing material, but I tried HGTV and became dissatisfied with the feng shui in our home, and I tried Food Network and was in a state of perpetual unjustified hunger.

So there you have it…28 days, and a whole lot of winter between then and now…

Wish us luck for the trek and the appointment.  Tomorrow is going to be another cold, cold day….

 

 

I would’ve been a great strategist, but diplomacy is not my forte…

Even as a child I had the knack for saying what I was thinking.  Over time, I confess, I developed a filter; somewhere in my brain a traffic light was installed, and I started paying attention to its cues to STOP!, proceed with caution and GO!!!!!!!!!!!!!  Notice, please, that STOP! only warrants one exclamation point while GO is embellished with many…when I stop it’s sudden, and when I go it tends to be barreling through.

J’s appointment for an independent evaluation from a psychiatrist to determine his eligibility for the I/DD waiver is on Friday.  I spent the bulk of Sunday gathering paperwork and organizing things so that I turn in everything they requested in a way that is easy to understand.  In other words, I went into full-on “order by date, checklist, cross-reference” mode.  Like completing the ABAS a few days ago, this process was sobering…maybe even a little soul-crushing.  As I was reading all the paperwork, I started thinking “what a grim picture this painted when J was only five,” and then I started chuckling because so many expectations have been blown out of the water in the past fifteen years.  A lot of “is not likely to ever” have been turned into moot points.

Out of a rock wall of maybes, not-likelies, hard-to-ascertains we have carved out a niche of huzzah!  Our normal is not your normal, and it only somewhat approximates that general standard of normal that the world wants us to believe is the same for the majority.  Our normal isn’t, when compared to the basic readers featuring Dick and Jane, anywhere near “normal,” but it’s the norm, the average, the way things are on a regular basis nonetheless.

In an e-mail I referred to someone’s “normal routine.”  That the someone has a special set of circumstances that would preclude the general concept of “normal” to be in place is something I need to point out.  When you are incapacitated to a certain degree, the Dick and Jane notion of normal won’t exactly apply, will it?  People go up and down the stairs on their own two feet, right?  “Normal” people do it that way, is the thought that is immediately attached to this, even when when it’s not expressed out loud.  So many people have the concept and definition of normal etched in their minds and they cannot veer, even slightly, from it.  Normal: dogs bark; rain falls (down…although that’s not necessary to specify because, by definition, things fall in that general direction;) people go up and down stairs on their own two feet.  In reality: there are breeds of dog that don’t bark; some howl, and there is the Basenji…it yodels.  Rain falls; its movement is downwards…and if rain ever falls up that wouldn’t just not be the norm, it would be downright unnatural.  People move up and down stairwells in many different ways; even before the advent of the elevator, people who were incapable of propelling themselves with their own feet and legs were carried upstairs.  Normal is the way something is done on a regular basis based on particular circumstances, and I know that’s probably a rather broad or lax definition, but I know enough to know that this is a fair assessment.

The reply to my e-mail regarding a “normal routine” was replied to with what I know (because I know the person oh-so-well) was a too-clever-by-half attitude: “normal?  Ok, I’ll say nothing…”

The little traffic light in my brain flashed red, then yellow, then both, then I stepped on the gas and told myself GO!!!!!!!!!!!!!  I didn’t so much proceed with caution as I worded my response with more diplomacy than I was inclined to exercise: for every situation there is a “normal” even if it doesn’t subscribe to the “norm” you recognize.  Case in point: we have a “normal” here that works for us, even if it doesn’t work for others.  I get the feeling that my response was/is/will be pointless because the backtracking that might/could follow is par for the course; I hear a “oh, I didn’t mean…” coming on.  There always is one.

The thing is this: you can’t say the snarky thing and expect me not to call you on it, and then (as I type the response pops up and it’s more of a “yeah, I understand it’s all relative”) pretend like you didn’t mean the snark.  The family circle I belong to is composed of a population in our fifties (some farther in than others) and sixties, and our children (or the upcoming wave of alphas) is in their early-thirties and twenties; we even have grandchildren, for crying out loud.  We cannot pretend like we don’t -by now- understand the concept of normalcy based on circumstances.  My oldest brother had a catastrophic thing happen to him, and his life’s entire framework has been altered by it; no one would dare not call his situation “not normal” because his intellect is unchanged.  But the moment a person is somewhat impaired in a cognitive way, “normal” flies out the window; you can’t lead a “normal” life if you can’t reason through it like the next person.

A lot of the things I’ve read about J in the paperwork accumulated through twenty years of being his parent tells me, in glossed-over terms, that he’s not “normal.”  That’s the way we define things and people in this world, and there are those who say “let’s call a spade a spade…that’s not normal,” and refer to “ordinary” and “extraordinary” as euphemisms.  I have witnessed eye-rolling when I’ve used the expression “neuro-typical.”  People argue with me that there is no such thing, and that the Autism community has come up with it to alleviate some of the stigma.  What “neuro-typical” implies is that there is an implied exclusive legitimacy in how the non-autistic experience the world, and -like “normal”- it means to somewhat reduce the validity of other people’s experiences.

That sounds horrible, doesn’t it?  Yet, in my experience, it feels true.  (Notice, please, that I use the word “feels”…it’s something that I personally believe, and that doesn’t mean it’s correct.)  When someone sets expectations, standards, or issues questions and opinions about normalcy they are basing this on their own experience, and they are assuming that this is THE correct experience, expectation, standard, opinion, parameter.  In that sense, no, J will never be “normal” and I don’t think he has ever been expected to be by anyone who evaluated him, but -gosh darn it!- we’ve yet to see rain fall UP around these parts…sideways, yes, BUT the wind was blowing quite fiercely…

Good thing I’ve never wanted to join the diplomatic corps, huh?

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.  🙂

An “a” in any other other other font…

J has the rudimentary makings of a forger.  He will not succeed at it, but he has what it takes to -with careful training and dedication- become a master at copying people’s handwriting exactly.  I know because, in my younger years, I wrote many an excuse in my mother’s handwriting and got away with it…  No worries, I quit while I was ahead.  Actually, I quit when I realized that I was in danger of having missed Phys Ed under the guise of having my period one time too many.

Today we had a snow day and J and I dedicated quite a bit of time to our garage/pantry/gym/that area of the house that cars never go into.  During his (final) IEP on Monday we discussed one of my big undertakings this year: putting J in control of the inventory.  Yes, ladies and gentlemen, I am willing to risk an excess of cans of chopped tomatoes so that J can learn how to manage our pantry and all its secrets.

First, however, we had to deal with the freezer that will be delivered some time tomorrow to replace the one that is about to gasp its last gasp.  We discovered a few weeks ago that the light that indicates the power is on had switched from solid to a quick blink; on Saturday we had noticed the blink had slowed down, and by Tuesday it seemed more like a very wan, half-assed blink.  We keep going in there, thanking it for its loyal service and begging it to hold on ’til Friday.  On the plus-side: it’s so cold that I can easily store things in the coolers we keep on the balcony and nothing will be compromised.  I don’t want to do that, though…

So J and I braved the garage that I’ve been cringing at since sometime in late December.  The first thing we did was reorganize the shelves.  Then I took out a big sketchpad so that J could write down the items we need from the store.  You may wonder why the big sketchpad.  Even if you’re not wondering I’ll explain: J is known for his expansive block letters…a large sketchpad is the next best thing to a wide, tall wall…

The other (not irrelevant) reason is that J copies the names of the items directly from the label.  While I make sure that he doesn’t write down the brand, J will copy the name EXACTLY as it appears on the label.  Whatever font is on there, regardless of how ornate, J will replicate.  It doesn’t look like the one on the label, but it is as close to a reasonable facsimile as you can get without actually reproducing it.  A label with “cooking oil” printed in Arial font, will be reproduced in Arial font.  If you have words written in American Typewriter, J will copy them as such.  Cursive gets a similar treatment.  Curlicues, tails, serifs…they all get in there.  If he wants to make sure that you buy the brand he likes, he will copy the logo.  A list of twelve items took twelve pages.

Spacing is not his forte, either.  We work hard on learning margins, but J has a tendency to get creative.  Much like young children who have yet learned to estimate how much space they need, J will start too far into the line, do really well, and then -upon realizing that he has six letters to go- he will then do the equivalent of hitting the brakes and letting every upcoming letter look like it’s about to crash into a brick wall.  They do, in fact, look somewhat horrified.  The other effect he manages is the “turn tail and run away” effect; the letters look like they’ve realized they’re about to go over the edge of the sheet of paper, and they try to avoid it.  Anthropomorphizing letters much?  You bet I am!

The work that would take a Third- or Fourth grade student a matter of moments (or that I could complete in a flash) becomes a rather convoluted process.  J writes what we need, and then we write it all over again.  I write it in neat block letters, and he has to copy it with margins and lines I’ve drawn to accommodate his inner graffiti artist.  Then we take that list, and we type things out in the Proloquo2Go.  First he copies them by looking at the letters as I read them, and then he attempts to type it while I dictate the letters one by one.  By the time we are done, J has earned his cookie snack, and I’m ready to not find any more things we need.

While this had been an activity we engaged in to reinforce writing skills, it is about to become a cornerstone of J’s at-home routine.  His ability to work in groups for prolonged periods of time continues to be minimal.  This presents a problem in the “employability” department.  Even in the most independent of jobs, J would have to spend significant amounts of time working with others, and he really has very little patience for group work.  If he’s in the mood, of course, he will be the most gregarious person you’ve ever met, but if he’s not…well, he closes up like a clam and that’s that.  No amount of friendly cajoling, kind persuasion, outright insistence will move him to participate.  We need to be ready for the time when he gets turned away from more and more opportunities because of his inclination to isolationism.

It’s not that he’s not gregarious, but the fact that he is so method-guided, and so strict with how he does things (Sheldon Cooper anyone????) leads him to easily get frustrated when he has to deal with other people’s schedules, quirks, and so on and so forth.  We need, then, to work around the limitations and exploit the assets he has.  We will devise a process for maintaining our pantry and household goods inventory together, and we will work towards J being able to manage it independently with monthly administrative “meetings” to make sure we don’t have more corn than is needed to feed a small army.

It’s all in the early stages.  And we have to work on identifying, communicating and organizing first.  We’ll get there, though…I know J, and he will fall in love with the notion of being the master of the garage.

Some (rehashed) thoughts on vaccines…

And there is a measles epidemic.  Well…that’s not particularly surprising, is it?  My children are past the age when the immunization protocol is part of the annual pilgrimage to the doctor’s office, but I remember those days when -with a wail and heartfelt tears- we would bravely face the needle, and then parade home with a lollipop and the vague memory of what had just happened.  They might have experienced some mild soreness, and they might have been fussy until the next morning, but they had just been anointed with a shield against childhood illnesses.

I didn’t really stop to think about whether vaccines had had a triggering effect for J’s Autism until I kept being assailed by people asking me if I thought that’s what had caused it.  Upon serious, thoughtful consideration, I am thoroughly convinced that one thing had nothing to do with the other, and that J’s Autism is what it is: a neurodevelopmental disorder that, quite possibly, has traveled down the family trees and had gone completely ignored due to the mildness of its presentation in previous generations.  Both families contributing genetically to the cocktail that is J have their sampling of “very quirky, isolated, obstinately set in their ways” individuals.  One generation’s Weird Uncle Louie is this generation’s J, with sprinkles…

To anyone who asks I always say “vaccinate, vaccinate, vaccinate.”  The moms that meet at Starbucks before the “mommy and me” and discuss how they want their kids to be gluten-free, and their food to be organic, and their education Montessori but WOW!!!!…vaccinate.  The moms that sit at their computers going back and forth between studies and articles and essays by this or that celebrity who has experienced the strife of bringing their child back from the brink…vaccinate.  The moms and dads who read about how violent an intervention vaccines are to a baby’s body…vaccinate.  When your kid is wrapped up in the effects of a measles epidemic, covered in welts from head to toe, and receiving no more treatment than “we have to let it run its course, and bedrest” you don’t get to choose if what they eat at the hospital is gluten-free…

I don’t recommend Autism to anyone if a choice is available.  I want everyone’s children to be healthy, happy, to blossom, but I don’t particularly enjoy that children with Autism have turned into “the thing we must fear.”

Is the experience of raising a child in the Spectrum enjoyable?  Well, all I can say to that is that when you don’t have a choice, you do the best you can.  I don’t look at the could’ve-beens as often as you’d think.  I don’t wistfully sigh and ponder of all the vacations we have missed out on, or the milestones that have been relocated to spots further down the road, or moved to a place that can only be reached through an alternate, bumpy, unpaved, uphill (both ways) road.  In this household we are not conformists, but we are definitely accepting of the circumstances…and then we rebel against them with all we’ve got.

You can argue that we are already in it, and that’s a fine place from which to issue an opinion.  I’ve heard it said that we “enjoy” the attention this brings us.  (An aside: I’d LOVE to know what attention.  Certainly not of people chomping at the bit to come help us!  Certainly not from people jumping up and down, arms waving frantically, to participate in J’s life with a balls-to-the-wall, pedal-to-the-metal attitude.)  I don’t know about other parents of individuals in the Spectrum, but we have yet to be issued glittered, bedazzled sashes that read “AUTISM!!!!” on them.  If they were mailed to us, we never got them.

Not that long ago, I was “schooled” by a commenter in Facebook on how vaccines are bad, bad, bad and they can cause all sorts of injuries and even death.  I say I was schooled because this person made it sound like I wouldn’t ever have read anything on the subject.  Obviously, if my “child” is in the Spectrum, it must be because I am misinformed about vaccines.  Namely, it is my own ignorance that brought this curse upon the house of Us…  The good thing about Facebook is that people can’t really see you roll your eyes (which I did as I read the twisted logic this person applied in their argument,) or flip them off (which I actually refrained from doing because my ten year-old self had to run off to play with J and his nifty bumper-shot board.)

I will now say something that, I think, is necessary for me to get out of my chest: when anti-vaxxers rant about how vaccines can cause Autism, they are reducing my son to a cautionary tale.  That, my friends, is a shitty thing to do.  The truth is that the anti-vaxx movement isn’t about anything other than a fear of the unknown.  All the childhood diseases, the world thinks, have been said, done, and we’re on this side of them, aren’t we?  We’re safe and sound, and we know they’re not THAT bad, right????  I’ve said it before, and I will repeat it…walk around an old cemetery, and locate the sculptures of little angels…count the names on the headstone under it.

Measles isn’t just a nuisance illness.  Autism isn’t just a nuisance either.  There is a tremendous load of work attached to raising an individual in the Spectrum, yes…yes, yes…oh, indeed, yes…  There is a vast source of frustration, disappointment, exhaustion, confusion, going back to the drawing board.  We spend a lot of time trying to figure things out.  We spend a lot of time wondering what we can do differently to get a better result.  We will be doing this for the rest of our lives…and J’s.  A long, long life, we hope.  A long, happy, fruitful life…

Autism isn’t catching.  It isn’t the end of the world either.  It will take you to the edge, to the brink, to a rope dangling down the side of the precipice, but it isn’t the end of the world.  Measles, maybe, won’t be the end of the world either, but…you can’t really prevent Autism.  There is no known cure or form of prevention; there are interventions that get reinvented all the time, and you go along with them.

Measles can spread.  Measles can kill.  Measles is more of a choice if you’ve decided to not vaccinate.

 

http://www.newsweek.com/look-anti-vaxxers-monstrously-bad-measles-math-304078

 

Adolescence comes to an end…

At the stroke of midnight, our teenager turned into a twenty year-old.  Two digits…different meaning.  Don’t think he doesn’t realize this.

To our early morning “happy birthday” J replied with his beaming smile and the word BIRTHDAY. He told everyone we saw that today was his birthday.  Of course, this was because we bought him cupcakes (and the girl at the shop was very pretty and he wanted to get a Happy Birthday from her,) and because he made his annual birthday pilgrimage to Five Guys (where, of course, he had to inform everyone that his was not just any ordinary dinner.)  TGG took him to the movies, and in the transition from our car (we’d been cupcake shopping and to the library with him) to TGG’s extended arm there was the announcement that this was a birthday treat.  BIRTHDAY! J announced to passing cars as he and TGG walked to the theater.

When the movie was over, the kids joined us at the car dealership where we were, finally, looking at a new car.  We didn’t abandon our beloved Sophia (yes, we name cars) lightly, but we did need to consider (after twelve years and 93K miles) a car with 4-wheel drive for the ups, downs, curves and snow of our current hometown.  J told everyone in the dealership that it was his birthday.  Everyone made sure he got congratulated.  J thinks the new car is his…well, we DID buy it on his birthday.  (This car, by the way, is named The Honourable Miss Phryne Fisher…look her up.)

So we had dinner at his favorite place, he got to watch Paddington the Bear in his big screen debut, we sang happy birthday (quite joyfully, I’d like to point out,) opened presents (with a stack of coins to feed his new Panda Bear coin bank that say ni hao and bye bye while taking whatever coin you put on the tray, five new t-shirts (XL so they have room to shrink) depicting everything from the Twelfth Doctor to Darkwing Duck (the one with Duck Tales on it elicited a woohoo like in the theme song,) and a chocolate chocolate chip cupcake with sprinkles and a small scoop of ice cream were consumed dutifully as if to say: I’m twenty, and I’ve played nice with the parental units.  May I go now????

In hindsight, we were all exactly like that when we turned that age.  We can’t complain.

So today, officially, I have no teenager who is autistic.  I just have some dude with a goatee, an appreciation for classic pin-up girls and Disney Princesses, and far less “issues” than he had at fifteen living in our home.  It feels good.  It feels…right.

When I started writing this, we were a mess of boxing gloves, hats, medication, Slinky (ok, we still have a wee bit of the last three things, but those boxing gloves went bye bye, baby,) and I think we’ve moved forward quiet a bit.  We still need to laugh.  We still need to shake our heads and ponder at the absurdity that is our everyday life.  We made it (safely, in one somewhat mangled piece) past adolescence.  I am impressed with us.  Maybe I shouldn’t be because it’s probably a sign of lack of faith in our own abilities, but I am impressed, and surprised that we are here…today…like this…P1100714

That’s all I have to say today…may peace, patience, quiet successes follow you everywhere.