You can talk to me…in fact, you SHOULD…

I wouldn’t call the past few weeks uninteresting, but they haven’t been worth writing about at length.  J is doing well, and the weather is improving; we have had sunny, warm days, and we have had days when we wonder if winter will ever take its leave of us.

The only items of note are a small kerfuffle that resulted from asking how J hurt his hand late on a Friday afternoon.  The kid came up to me, after we’d arrived at home from the school bus drop-off, and handed me Neosporin and a band-aid.  His hand was mildly swollen, looked bruised, and had two areas that looked like a puncture and a popped blister.  Since J couldn’t explain, I sent a text message with a picture of his hand.  It was all very straight-forward: did you see this?  Do you know how it might have happened?

I went directly to the teacher because J wears his gloves on the bus (it was still cold) and the bus driver and aide (obviously enough to me) would not know.  Since there was swelling and I wasn’t sure if it had been a friction burn or a bug bite, we took J to the Urgent Care where they told us “it looks like trauma, but just in case it’s a burn or a bug bite, let’s give him an antibiotic.”  I informed the teacher of this, and then I said “you know, he used to hit his head, and bite his hand.  Perhaps, when no one is looking, he did one of those.”

Fast-forward to mid-morning Tuesday when the bus driver calls me to ask “if we’re OK.”  Yeah, sure…why????  Well, she tells me, an aide at the school told her that “J’s hand didn’t get hurt here so it had to have happened on the bus!”  She explained that he had been perfectly fine, in fact rather jolly, on Friday and that she hadn’t noticed anything on his hand.  I told her that I didn’t expect she would have because he was wearing his gloves, and I didn’t notice anything until he came downstairs armed with his own version of first-aid assistance.  I explained that I didn’t feel compelled to call her because of this, and I’d simply asked so I could better inform Urgent Care.

The person who started the gossip ball rolling was the usual suspect.  She always does this.  It upset me enough that I asked the teacher why this was made into an accusatory question when, in fact, all I had a desire to know was if anyone had seen how it happened.  She had asked an aide who must’ve told everyone else, and the person who usually goes for the gossip factor decided to take action.  “I didn’t ask the bus driver because of the gloves,” I wrote ” and because if I ask the bus driver if anything happened at school I’m the one who’s engaging in gossip.”  I explained that I don’t appreciate that type of behavior.  If an aide thinks I’m accusing, please, direct them to me and I will clarify.  “Wouldn’t you guys want to know where an injury J has comes from if he shows up at school with a blister, a bruise, what looks like a bug bite, and swelling?  And what if I took umbrage at this???”

The teacher understood what I meant, and I appreciate the position she’s in and how she cannot control certain people.  I was sorry I snapped at her, but I don’t like having my communication with others tainted because someone feels defensive about a question that should be absolutely acceptable.  If your child comes home and is hurt, sick, etc. you should be able to ask “hey, did something happen?” without people assuming that you’re saying it’s their fault.  I always ask “how was your day?,” and very seldom do I get an answer because J is J and that’s part of what his everyday life is all about.  It’s not going to stop me from asking because it’s my job.

I make a habit of letting the teacher know if there has been some major disruption to J’s routine that might affect the way he behaves in class: if he didn’t sleep, if he was not feeling well, if there was no power, if he was anxious.  I do this because I know I serve a population of one and I can dedicate myself body and soul to comforting him throughout the time that he is with me, and that she serves a much larger population and doesn’t have the ability to go one-on-one every single time it’s needed.  It’s a courtesy I extend; if you know the child (in this case the grown-up) is having a rough time for X or Y reason, you are more alert to the possibility of a meltdown, a tantrum, a crying fit, etc.  When J is wearing a bandage or is taking medication, I explain why.  I’m not covering my ass, but I want to make sure that they know “something” is up…

So late last week I got to send a message explaining why J might be upset.  As I was brushing his hair early Friday morning, J suddenly yelped and started bleeding…profusely.  Of course, a very controlled panic ensued and I called TGG to come help.  Dada was away on a business trip and TGG was in charge of dropping J off at the bus.  “Scalps bleed a lot more than one expects,” he said as he struggled to find things in the First-Aid Closet.  I took over the acquisition of supplies while TGG checked J’s scalp and soothed his baby brother’s nerves.

We cleaned the area up, and TGG mentioned that the night before he’d notice thick scales on that area of J’s scalp.  Because at that particular moment Dada had called because he was having trouble with the airline for his return ticket, we all got distracted and he forgot to mention it.  I said I’d noticed small red patches in the back of J’s head, camouflaged by his hair.  We checked the rest of his scalp and found very small areas of white scaling and what felt like thin ridges when we palpated.

J’s styling products were hydrogen peroxide and Neosporin, and I explained to the teacher what had happened.  After googling profusely, and calling my cousin the doctor, we reached the conclusion that J very likely has psoriasis…oh, joy!  You wouldn’t believe how many papers are out there about the Autism-Psoriasis link…

Until the doctor sees him, we’re shampooing with the appropriate product.  I let the teacher know because J was bound to be upset about the Chips Ahoy-sized patch of drying blood on his scalp.  It’s what one does…share information without prejudice or fear.

What’s a little plateau among friends????

“Begin at the beginning,” the King said, very gravely, “and go on till you come to the end: then stop.”
― Lewis Carroll, Alice in Wonderland

It arrived in the mail last Saturday, and we read it (as we usually do) with a bit of tongue-in-cheek solemnity.  The psychologist who evaluated J on a very, very cold Friday two weeks ago sent his report regarding his condition.  Newsflash!  J is autistic.  He also exhibits a moderate level of mental retardation.

Stop the presses.  I need to take a deep breath before I let that sink in…again.

Sarcasm doesn’t help, I know, but it does bring levity to the inevitably thick feeling that always comes attached to the constant confirmation of what one knows.  In a nutshell, J is a (take out your salt shakers, please) very well-mannered, self-aware, pleasant young man who is autistic.  His score would have been higher if we didn’t collectively work as hard as we do to improve his skills; I don’t regret the efforts we’ve put into making his life (and everyone else’s around him) a little easier, even if it might impact what services he can receive as he gets older.

I’ve filed the report with all the others.  I read it, yes, quite thoroughly, and I noted what was different (even if slightly) from previous ones.  Every report indicates that J has reached a plateau, and every plateau that is recorded is different from the ones before.  In my humble opinion, J simply takes breaks before climbing a little higher, stepping a little farther ahead.  I am not intimidated by plateaus as much as I am intimidated by professionals’ certainty of a plateau being the end of the road.

Our satellite navigation thing always says “recalculating.”  I am not daunted by recalculations.  A little annoyed by the time it takes to achieve a new “flight pattern,” but not daunted at all.  I grew up in the days of foldable maps you got from the AAA or the garage down the street.  As a matter of fact, I was raised in a society where directions are far from technical, and people don’t seem to get lost…we simply find a different way of “getting there.”  Back home we often give directions by saying “take the second road on the left after you get to where the old oil drums are on the right side of the road…not the ones painted blue…it’s the ones painted yellow.  When you take that second road you’re going to see a tree.  My cousin’s car hit that tree about five years ago on a night when it was raining and the tree is gouged but it still flowers every summer.  A few feet farther down the road past that tree, there’s a driveway…don’t go into that one…you have to keep going…going…going…and there’s a dip in the road and it forks almost immediately…stay on the right…you’ll see a fence…”  It’s not recalculating so much as narrating your way through a maze as you go along.  The system has worked so far because J is so much more than the sum of his parts…

The report comments on J’s outfit and his facial hair.  This was funny, but it was also meaningful. J has a very distinctive style that he feels very proud of, and he chooses his clothes, and he has a say in how his hair is groomed.  The psych, by the way, didn’t notice J covers his ears because J has improved vastly in this area…to the point where he didn’t give the impression that he has any sensory issues other than touching things to determine their texture.  The whole “he’s got hypersensitive hearing and he covers his ears to regulate” flew over the entire staff’s heads because J behaved like the type of person that doesn’t do that around strangers.  I wonder what would have happened if he’d still been attached to his four boxing gloves…

All in all, the results of the test were to be expected.  When the scores were compared, J’s teacher and I answered in pretty much the same way.  Our scores for J were exactly one point apart, and -after discussing it briefly once the report had arrived- we reached the conclusion that that one point counts for very little.  She sees his social side more than I do because he has peers he interacts with over there, and I see the self-help side more than she does because I have only ONE person to deal with whereas she has a classroom full of them.  J is consistent, and he is by far more advanced than the last evaluation he was subjected to indicated at the time.

Every assessor assesses progress, and then assesses that it cannot possibly continue.  They see Super Mario Bros. when they should be looking at Donkey Kong.  Once in a while a barrel comes out of nowhere (usually from the hands of a gorilla that is trying to waylay us,) but we keep trying…even when the game gets reset.  Once in a while, we put down the controller and forget that we’re playing.  Once in a while we start over from scratch.  Once in a while we forget we have a console to play with, and we return to the basics.

So we’ve hit another plateau!  So it’ll keep happening over and over and over again.  So this is the story of our lives, and we have the same diagnosis we’ve had a million times over.  The prognosis is the same, and yet from a different angle.  We can’t explain the many plateaus to every diagnostician because we will be looked at like we’re imagining things.

The thing is this: we do a lot of pedaling through mud, but the mud splatters and gets moved, even if we don’t move forward.  We use up a lot of energy; we get tired; we get frustrated; we wonder why we’re doing it; we throw our hands up in the air and say “what the heck are we doing???”

We’re not stopping.  Muddy bike, gorillas with barrels, diagnosticians who see only one picture instead of the album…  The reason J looks like he’s not as badly off as he should be is because we don’t stop.  The reason J keeps hitting plateaus is because we don’t stop.  We move sideways when up and forward isn’t possible.

We’re not stopping…