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…

Free with membership…

COFFEE???

It’s 5 a.m. on a Friday and the lights in the hallway have been turned on and off several times already.  Our eyes are still closed, but through the thin skin of our eyelids we can sense the change in lighting.  Note to self, I think in the blinking darkness of our bedroom, J might have a future career in theater…as the guy who dims the lights to let people know the play is about to start.

Dada and I are nudging each other.  We both know the other is awake and pretending to be asleep, and short of a Rock, Paper, Scissors, Lizard, Spock match, the way to decide who gets up is by saying “well, YOU have to shower for work, don’t you?”  Grumbling, Dada makes his way to the bathroom.  J, hearing the water run, comes to the door and tries to switch on the ceiling light.  His mother, however, was not born yesterday nor the day before (more like 17,645 days before,) has finally learned the lesson of turning off the light switch ON THE FAN so that she is not jarred out of sleep by the suddenly bright light flooding the room.  Eyes closed, I curl up once more and pretend to be fast asleep.

CLICK!!!!  He turns on my bedside lamp instead, and I yelp as I sit up, startled by his deviousness.  From the bathroom I hear a giggle.

COFFEE???!!!

Hey, J!  Good morning.  What’s up?

GOOD MORNING!  GOOD MORNING!  GOOD MORNING!  COFFEE???

Why don’t you go get your snack?

GOOD MORNING!  GOOD MORNING!  COFFEE???  COFFEE???

You have to wait, J.  Dada’s taking his shower and he’ll be down in a minute.

The bed shifts as J rises and walks to the bathroom door, opening it to make sure I am telling the truth.

HEY!!!!

GOOD MORNING!!!  GOOD MORNING!!!  COFFEE???

Close that door, please!  Dada is not so much annoyed as trying to get rid of the draft of cooler air that is seeping in from the box fan we’ve set to circulate air around the top floor.

J closes the door and marches back to my side, sitting on the bed heavily.

COFFEE???  GOOD MORNING!!!  GOOD MORNING!!!

Hey, yes.  I know.  Good morning, Boo.  I’ll be right up, I promise.  Why are you up so early???

GOOD MORNING!!!  COFFEE???

It’s Friday.

TODAY IS FRIDAY!!!  GOOD MORNING!!!

Why don’t you go get your snack?

SNACK!  GOOD MORNING!  COFFEE???

I hear the shower shut off and Dada laughing at the exchange taking place between J and I.  As I get up, J laughs merrily and bounces down the steps to  the kitchen.  I am grumbling as I look for my glasses, and Dada says “GOOD MORNING!!!  COFFEE???” as he heads out the door.  J has disappeared down the stairs and Dada follows him.  I try to find my bearings.  I look at the clock.  It’s only 5:20.  I am up at 5:20.  Oh, Lord, what am I doing up at 5:20???

Dada shuffles up the stairs.  He looks more alert, but I’m sure he is just as blurry-eyed as I am.  COFFEE???  No, we tell J; you have to sort and pack your snacks first while we make you breakfast.  J sets to his task, adding sorting the dishes left in the rack the night before to his occupation.  In no time the kitchen is pristine, and J is sitting down to eat.

We have asked him to slow down, and we’ve insisted that he stretch out his activities so that it’s precisely 6 a.m. when we get upstairs to get him ready for school.  The way it works around here is Dada is up first, takes a shower and quietly goes downstairs to “get in the zone” for the day.  He sits there, watching the news with the volume turned down, trying to organize his thoughts and aligning his mind before rousing J.  At 5:40 J crawls out of bed…arguing and complaining and grumbling.  This, at least, is the general rule.  I get up when J is having his breakfast, and get things lined up to get him ready for school.  They leave the house at 6:20, after J grinds coffee, gets the French press ready, sets the table for our breakfast and starts the water.  I walk them to the door, kiss J and wish him a happy day.

Somehow, in spite of the fact that J was up at around 4:30 and we staved off the invasion until 5, we managed to fall into our routine successfully.  This is a good thing.  Finding the groove and falling in it so that the rest of the day sort of follows is great.  A household in which Autism dwells dreads the skipping needle of an old record player playing through the routine that brings calm to everyone.

When Dada got back from dropping J off, we sat to our coffee.  It was six thirty-five by then, and we looked at each with the expressions of seasoned pros who have witnessed enthusiastic anxiety about going to school on a Friday as the school year is quickly winding down.  We smile at each other knowing that membership in this club of ours is not exclusive; out there, in either the early dawn hours or the dead of night, there are other parents whose membership cards are newer, and who are getting tested by circumstances unforeseen brought on by their own autistic child, teenager, adult.

Free with membership?  Coffee, disruption of sleep and meals, tantrums, repetition, routine, echolalia, gray hair, quirky behavior, nervousness, stress.  There are those who will tell you that these free things don’t make membership appealing at all, and we agree.  Given the choice, who would WANT this???  But the membership, though, is that kid.  The kid who will jar you out of sleep, repeat all you say until he/she figures out how to bring out the words needed for their own thoughts; the kid that will make you think you’re the worst, unluckiest parent in the world during a really, really bad moment until you realize that we all feel this way, and we are all wrong…it’s not us, and it’s not the kid…it’s whatever doesn’t work in the typical way and that makes communication so overwhelming.

As we take the first bite of our English muffins, Super Nanny starts.  Within five minutes of watching, we realize our situation is not really that bad.  We don’t need the outside intervention of someone to teach us how to parent a neuro-typical brood; we are simply dealing with forces of nature that are cloaked in camouflage.

We’re doing OK.  We just  need some more rest.

That, however, costs extra…

Oh, well…

A voice is a human gift unless…

Hello, Denial and Numbness!  You serve a purpose when you arrive…you make us think we don’t have a problem and that we don’t really care what said non-existent problem is doing to us.  You also stand in the way of any purposeful effort to fix the problem.  No worries.  You will eventually morph into Frustration and Helplessness.  There are no practical travel guides for any of these territories; no one really mentions “oh, by the way, that lovely trip you’re going on will include earthquakes, tornadoes, flooding and a nice bout of dysentery.”

That’s what it felt like when J started having his nuclear meltdowns.  A Griswold Family Vacation would have been preferable.

People, well-meaning yet clueless, asked if we were ok.  When someone asks this, they usually formulate it as a rhetorical question, quickly followed by a kind (and rhetorical) offer of help.  “If you ever need a break…”  A break?  Please, explain, I wanted to say.  You think if I take a break you, with your kindness and inexperience, will be able to handle what I handle every day?

Were we ok?  There was no simple answer.  We were healthy.  We had a roof over our heads.  We were employed.  We were “keeping it together.”  Other than that, well, things were pretty screwed up.  Our son was suffering.  We were completely clueless about how to help him.

The Behavioral Assessment Specialist asked us to keep a log of what preceded each meltdown.  Ah…where to start?  You know how people say “if I don’t know what I’m looking for, how will I know I found it?”  THAT is how we felt.  We started noting every single thing that surrounded us, and it started driving us nuts.  We walked around listening intently, sniffing the air, touching things, even trying to determine if the air felt heavier than usual.  We observed our son like the subject of a wildlife documentary, waiting for him to start acting as if he was about to act up.  We were trying to predict when The Big One would sink California into the ocean.

This state of alertness was emotionally exhausting for everyone involved.

Every parent of an autistic child will tell you that there is something about their kid that is a greater source of frustration than anything else.  We know that things would be so much better if it wasn’t for [insert sign or symptom here].  Yeah, we all have one of THOSE things.  It drives us NUTS!

Don’t get me wrong: when you have an autistic kid you get pretty skilled at counting blessings.  Every achievement (regardless of how absurdly banal the rest of the world might deem it to be) is a big deal!  It gives us hope.  It fortifies our faith and propels every subsequent effort.  When you have an autistic individual in your household you live with a lot of exclamation points…people think we drink too much coffee.

Non-verbal.  This doesn’t mean “quiet”…this just means that, of all the things that could possibly go awry with your kid, he/she does not speak.  It’s not that they are mute, it is just that their speech is not significant, it lacks purpose.  Echolalia…there’s a word for you!  “Hi, honey!” you say.  “Hi, honey!” the child repeats in the same tone.  “How was your day?” you ask.  “How was your day?” they ask back.  There is no exchange of information.  In our case, our son is non-verbal; also, when he repeats what we say, it’s not even properly enunciated.  Words come out in pretty much the same way Peppermint Patty and Charlie Brown hear them when their teacher speaks.  So “Hi, honey!” is returned to us as “Ah ohnee!”

Yes, J uses PECS.  Yes, J uses sign language.  (We’re working on the whole iPad thing, but have you looked at the economy lately?)  The availability of these resources falls a little short in some areas.  Have you ever tried to throw a tantrum with PECS?  When a person his size (he’s a teenager…not a delicately sized one) tries to express his anger with what signs he knows, it can come across as threatening…

The definition of voice is sound produced in the larynx and uttered through the mouth as speech or song.  Noise, on the other hand, is defined as sound that is loud, unpleasant or causes disturbance.  Harvey Fierstein has said  “…the average voice is like 70 percent tone and 30 percent noise. My voice is 95 percent noise.”  J’s ability to use his voice was seriously impaired…that’s when he came up with “The Grunt.”

The Grunt is a sound I can try to describe and replicate.  It’s primeval; imagine a wounded caveman in pain.  Multiply by ten.  Imagine a wounded animal.  What does that animal sound like?

Before you are horrified by the comparison with a wounded animal or caveman, please, consider that I am being frank, and that stripping things down to the bone lets you understand, layer by layer, what it is you’re facing and have to address.  The Grunt is a sound that, in its rawest form, expresses emotional pain so deep that it can elicit tears from any member of our immediate family.  In the middle of the night, The Grunt makes you feel anxiety and urgency similar to those that arise when someone yells “earthquake!” or “fire!”

The Grunt became part of the everyday soundtrack of our lives.  It was frequently accompanied by a raw scream…deep in tone, grating, widely open-mouthed.  They were the harbingers of a meltdown; they escalated and intensified with the anger and frustration, and we didn’t know what was causing them.