Wednesday, August 21, 2013

Mr F is loud, and now I know at least one person probably wants him dead because of that. (Thinking The Lions)

Mr F is loud.

So is Mr Bunches, but in a different way.  Once, Middle Daughter, having a conversation with Mr Bunches, said "He only has one volume," which isn't true except for 99.9% of the time.  Mr Bunches tends to speak in an excited, happy, and yes loud, voice, which is great because, as I said, he's almost always happy and excited, and there's nothing wrong, ever, with coming in the door and hearing:


even when you start hearing that outside of your house as you head up the sidewalk.

Mr F isn't loud in that way, because Mr F doesn't use our words, except, now, for the word "up," which has become the predominant word in Mr F's vocabulary.  I taught Mr F "up" one day at the swimming pool because after I had been playing "Rocket To The Moon" with Mr Bunches (1. pick him up 2. throw him into a hopefully-empty area of the pool 3. GOTO 1) Mr F wanted to play, too, and he came over and made me grab him by the armpits the way I threw Mr Bunches.

"Rocket To The Moon" being a pretty hard phrase for him -- he has to take "underwear" in three steps ("uh" "der" "wear") -- I told him to say 'up' and when he did, I picked him up and brought him back down (he doesn't like to be thrown. Funny. Who wouldn't like to be thrown?) and he loved it so much that he then said up about 38 consecutive times, which is why I now have the upper body strength of Hercules.

So he learned the word "up" and deciding that it is an effective word, he began to apply it to everyday situations he encountered, such as:

-- Getting me to get him cheesepuffs from the cupboard: "up" he'd say, pushing my hand towards them.

-- Wanting to watch Baby Einstein videos on Youtube.  "up" he'll say, pushing me away from the computer where I was working.

-- Pretty much everything else he wants.

He used "up" so much that I got in the habit of telling him "No, you mean..." and then filling in the word he actually meant.  "No, you mean chocolate."  "No, you mean car ride." That became so automatic that once I said "No, you mean up," at which point I realized that he really did, because he wanted me to pick him up and had said up and I then decided that autopilot isn't really a parental setting I should have.

Other than up, and occasionally words like "Mom" and "Dad" said under duress and while crying and moaning during his haircut last Saturday, Mr F doesn't talk much.  He gets his point across through gestures and a series of sounds that almost are words, like "Ya-do-hey," which he uses a lot and which probably means something terribly significant in his language, but which I don't really understand.  Sometimes I say it back to him: Ya-do-hey, but he doesn't react. I'm probably giving it the wrong accent.

His haircut on Saturday was actually a good example of how society should react to Mr F and his loudness, which was a loudness I never really noticed until about two months ago when I really noticed it.  A bad example of how society should react would be telling me to kill him, but I'll get to that in a second, because I'd rather first focus on some positives.

I didn't really notice that Mr F was loud until about two months ago, when I was taking him for his nightly car ride just before bed.  Mr F loves to go for car rides, and they seem to settle him down and let his brain slow down enough that he can sleep instead of lying in his room crying and hitting his head, something he does often enough that we worry about it incessantly.  Mr F is happy 90% of the time, maybe more, and when he's happy he smiles so hard that it's infectious: Mr F's smile makes me laugh out loud with happiness, even now when I am sitting in my office typing this and wondering how someone could want someone else to die just because they are different, and wondering how many people want Mr F, and maybe Mr Bunches, to die because they are different.

When Mr F is not happy, he is heartbreaking.  He will sometimes cry, for no reason, out of the blue, bursting into loud moaning tears of despair, and at those times his face contorts into a mask of grief that rips you apart if you see it, and it is all the more sad because we have no idea what makes him sad.

He can't tell us.

Or maybe he won't.  He clearly understands us, but he won't, can't, doesn't, talk to us.

And Mr F's habit of tapping things -- spatulas, coat hangers, plastic spoons, Hot Wheels tracks -- against his arm or a table or his forehead, lightly, gets worse when he is sad or mad.  At those times he will rap them, or his hands, against his head hard enough, we worry, to cause actual damage.  I say this because whenever I see him doing it, I put my hands in between his head and the pounding, and it hurts.  He isn't yet seven but he's had my hand aching for days, which is why we don't want him to hit his head when he does that.

Our theory is that Mr F sometimes has trouble stopping thinking -- trouble relaxing and letting his mind go--  and that's why sometimes he stays up all night, crying or talking or hitting his head, and we go in and try to calm him down and settle him and that's why most nights he goes for a ride before bed, the same route every time, up past the airport and the industrial park and then down past his school and then home.  Some nights, he sits quietly.  Other nights, he talks.  Two nights ago, he climbed out of his car seat, which he is rigged into with a seat belt, safety vest, another safety vest, a bungee cord, and, lately, an Aaron Rodgers jersey cinched into all the rest.

That all slows him down a bit, but he can still get out, as he did the other night when he climbed into the front seat before I could pull over, and then hunched down in the leg pit of the car, hiding his head.  I held his hand, driving with one hand and leaning over slightly to keep a grip on his hand, my concern not so much to console him but to keep him from suddenly turning and opening the passenger door, which has no safety locks in the front, which is why I don't like to let Mr F ride up front but I sometimes do.

We finished the ride that way, 2 miles to home, Mr F huddled in the darkness under the dashboard, one hand gripping mine reluctantly.  That night, he was quiet.

But two months ago, he wasn't.  I realize now he never was, but I never noticed, until one night I was trying to listen to an audiobook, and it was a pretty quiet book, and Mr F was in the back, rambling away in his own language, loudly, and talking and talking and going on and on and I kept turning the book up, from 30 to 35 to 40 to 50, and I said to him:

"You're pretty loud tonight, Pumpkin Pie."

(I sometimes call him "Pumpkin Pie.")

He responded with "Ya-do-hey" and I turned down the book and spent the rest of the ride parroting back whatever he said, because I read an article once that said doing that is a good idea because it teaches kids that their words have an effect on people and then maybe they will use words more.  It worked that night: Mr F used words more, a lot more, that night.

It was only that night that I realized that I'd grown accustomed to Mr F's loudness, and Mr F in general, the way you might get used to a freeway near your house or the sound of a train in the distance.  I no longer noticed that Mr F carried spatulas with him wherever he went, and loudly proclaimed whatever it is he's proclaiming when he's talking as we go through Target or the grocery store or the zoo.  He was just Mr F, and I didn't notice him any more than I noticed my own breathing.

But I did notice it, then, and I decided two months ago, that I would start working with Mr F on living in society, trying to teach him some manners, a bit, how to modulate himself.  So when I took him to the office with me one morning, I tried to teach him "inside voice" and how to keep his shoes on, letting him talk as loudly as he wanted in the car but telling him inside that people were working and he should be polite.

He seemed to get it.  We'd be heading down the hall to hand some papers to someone and he'd talk loudly and I'd say, in a quiet voice, "Inside voice, please," and he'd lower it for a sentence or two before rising back up, like he couldn't help it.  Maybe he can, maybe he can't. But he tried, from time to time, and I kept at it, trying to teach him when it's okay to be as loud as the hills and crazy as the sky -- running at the park or walking in the nature trail -- and when he should tone it down a bit.

Which was good, because now I know that at least one person, had she come across Mr F, would have wanted to kill him.

The positive: Saturday, Mr F and I went for haircuts, which he hates.  Many autistic people, I'm told, hate getting their haircut.  I only know Mr F and Mr Bunches, personally, and I know they aren't crazy about it (Mr Bunches) or hate it with a passion bordering on terror (Mr F).  So we try to schedule the haircuts around other people and at times it might be slow and we always go to the same place, where they know us and they suggest times that are good to come.

I called Saturday, at about 2:30, and made an appointment for 5.  The lady on the phone asked for our names and when I told her, she said "Oh, if you wanted to come at 3:40 that would be better," so we did that.

We got there about 10 minutes early so I could have Mr F ease into the idea that he was getting a haircut, and he was loud but calm as we waited.  Then, when it was time for his turn, he got upset and started protesting:

"Ooooooooo, oooooooooooo, oooooooo!" he said, pulling away from me and running back to sit on the waiting bench.

Nobody -- nobody -- in the store reacted, which is good, I think.

(Once, a stylist at that place, when Mr F and Mr Bunches were younger and cried a lot more during haircuts, said "You know, there are places where kids can go to get their haircut," and I chose to interpret that as an attempt at being helpful, rather than an attempt to get us to go somewhere else because she found them annoying, or, perhaps, euthanization-worthy.)

I got my haircut first and during that time, Mr F sat in the corner, waiting and complaining, a bit loudly, sure, but not terribly.  Then, when it was time for his turn, he cried again and protested and eventually had to get his hair cut sitting on my lap, me holding him and holding his head while he cried and trying to distract him from the haircut he was undergoing, which I did in part by getting him to count, and to say the names of the people in his family.

"Let's count," I'd suggest, and his eyes would turn to me in hope that maybe I meant "Let's leave here and go count," but instead I'd say "One," and try to get him to repeat it, through 10, the highest he'll generally count (he still says that nine is mab, which I love) and then going through the names of the people in our family, and through it all, about 10 minutes, the hairdresser was great, simply working efficiently and trying to talk to him, the other stylist occasionally offering to help out, and the other guy in the salon simply talking quietly to his stylist.

I appreciate that.

All the more so now that I know that people out there maybe want Mr F dead because he is different and loud.

Mr F, of course, is different, and loud.  And his difference stands out.  You can't see him for 10 seconds without really realizing that he is different, and loud, and the only way you don't notice it is if you don't notice it anymore because you are so used to it, so when I walk around my neighborhood with Mr on our usual route past the house with the dog and the house with the chalk and across the street, I don't notice him tapping or talking loudly, but maybe people in our neighborhood do and maybe, it only just occurred to me this morning, they want him dead.

This morning, Mr F woke up about 5:45.  He woke up crying, moaning really, in his room, tearfully, and so I got up and went in to see what was the matter.  He was lying on his back on his makeshift bed in the closet where he likes to sleep, crying to himself under his blanket.  He pushed me away, and a few minutes later Sweetie took him downstairs while I went and got ready for work so I could go in early so I could leave early so I could take Mr F and Mr Bunches to the library tonight.

Before I had to leave for work, I ate some toast and watched "Baby Bach" on Youtube with Mr F, and he occasionally cried again, loudly and sadly, and then would laugh and swing and then sit quietly and pensively, and I tried to give him some medicine in case he had a headache, but Mr F won't take medicine anymore, which is a double-whammy for us: Not only do we spend all this time worrying about whether his head hurts from his injury, or his tapping, or whatever, but we have to worry that we can't even give him medicine because he just spits it out, prompting us to actually have a conversation that went like this:

Sweetie:  What if he gets really sick and needs serious medicine?

Me:  We'll have to take him to the doctor for each dose to have them inject it.

Which isn't an exaggeration: Mr F has to be anesthetized just to have his teeth cleaned, which is why he hasn't had his teeth cleaned yet; it will cost us $600, out-of-pocket, to do that, so we put it off this year because money was too tight to even afford Mr F's home therapist, who is no longer covered by insurance for reasons that are too dumb to get into.

While Mr F was swinging and loudly crying or smiling quietly and then starting it all over again, I was reading the news, and while I read the news I came across this actual headline on Huffington Post:

Family Of Boy With Autism Receives Shockingly Offensive Letter

So I read that, because of course I would, and what really is all you need to know is this is the actual letter this family received:

I don't know that there is anything else I can say about that letter, other than reading it makes me tear up with sadness for that family, with their own Mr F, and for our own Mr F and Mr Bunches.

How can you hate a kid?

Let alone one who isn't doing anything other than just living the only life he knows how to live?

Mr F was outside with me on Sunday, as I worked in the yard for a while, and while he was out in the yard with me, I held his hand almost constantly because he will run away at a moment's notice, and I didn't want him running into the road, where people drive at 35 miles per hour past residential houses one of which houses two small children with a lack of impulse control and a similar lack of appreciation for physical danger.  Plus I did want him to learn to help out, a little, with the yard work, do some chores, the way Mr Bunches had helped out by hauling out the broom and by throwing the sticks onto the roof (the same sticks I'd climbed up to throw off the roof, but, hey, he was helping).

During the time that Mr F helped me, I handed him some things to carry and had him help me haul trash and we worked on weeding stuff, and sometimes he sat quietly near me and sometimes he took off running when I (foolishly?) trusted him to sit quietly, and through it all, Mr F talked loudly, but not so loudly that I couldn't hear the radio I had playing, too, and I didn't think anything of it -- the running, the talking, the stick-throwing, because that was just the way they were.


But then, today, I read that article and that letter and I was confronted with the fact -- the fact I almost never confront head-on and like to ignore -- that some people out there think that Mr F and Mr Bunches are retards who don't deserve to play outside.

Mostly, it's easy to ignore that because mostly, people are so nice to us about it.  One day, at the Dollar Store, Mr F and Mr Bunches and I were mulling over whether to get a plastic dinosaur or a Ninja Pirate set (we went with Ninja Pirate) and Mr F was talking loudly, as he does, but I figure the Dollar Store is okay for that, and a woman came around the corner and said "I thought that was him!" and was smiling, and eventually, realizing I had no idea who she was or why she was talking to Mr F, said that she was a special ed aide at the school, one of the women who spends every moment within a foot or two of Mr F while he's at school, something they do so that Mr F can be in a regular classroom with 'regular' kids as much as possible, which is very good for him and I think very good for them, too, and she didn't have to say but I knew she recognized him because he's Mr F and he's loud.

Other kids from his school know him, too: at the Homecoming Parade last year a third-grader asked if I was his dad and said she knew him, too.  Everyone knows Mr F, the loud kid with spatulas and for a while, a helmet, who talks his own language and sometimes gets to ride a tricycle in the hallways, for reasons that are obscure even to me, and, we thought, everyone loves him, because almost everyone we'd ever met, with only rare exceptions, had loved him (and Mr Bunches; I'm not forgetting about him.)

It's rough to wake up and know -- not just know but know, be confronted with -- that not only does everyone NOT love your kid, but some of those people think he's a retard and some of those people think he should be euthanized and have his organs harvested.

The "non retarded" ones, anyway.

Mr F is not a retard.

It shouldn't have to be said, but apparently it does.

And he doesn't deserve to have people want him dead.

That, too, shouldn't have to be said, but apparently it does.

It was something like this -- not as abhorrent, but similar -- that first started me writing openly about Mr F and Mr Bunches' autism, years ago, when the library we boycotted for nearly five years caused a scene when the boys accidentally broke some vases.  We only just started going back to that library, recently, because the other one we went to is closed for renovations and the boys like the library, and they are, at least so far, more tolerant now, especially of Mr F.

It was that incident, and now this, that made me think that people should know they have autism, so they know what that means and how to recognize it and not think that maybe Sweetie and I are just bad parents, and so that maybe people will stop to think, as they drive through a neighborhood, that there might be a kid playing in the yard who can't stop himself from running into the road, or who will realize, as they walk through the Whole Foods market on a Saturday, that maybe that little boy sitting in the cart

Isn't trying to be annoying, he's just trying to live in a world that is very, very difficult for all of us to live in, but about a billion times more difficult if you can't stop noticing details or can't forget things you saw a year ago or five years ago, if every sound is too loud and every color too bright and every new person too new.

Mr F's world is, as best as I can understand, a frightening world where even the tiniest shifts in detail require an enormous amount of effort for him to cope with.  That's why he only eats one kind of cheese puff, why he likes to watch the same shows over and over again, why games must always be played the exact way.  When you take Mr F to a new place and show him new things, it's far harder for him to deal with than we can imagine. Have you ever felt overwhelmed and a bit frightened by a big city or a new place or a new job?  Imagine that, every single second of your life, an onslaught of sensory perceptions so Niagara-like that he cannot staunch the flow and must try to freeze his world in place, exactly, keeping all the chocolate bars always the same, all the french fries always the same, all the music always the same, so that the world can be filtered down to something manageable.

Mr F has to try to exist in our world, which is a nightmare at times, so much so that, I fear, it causes him to burst into tears at just how terrible it is.

But in our world, Mr F is a blip.  If you were outside your house on Sunday afternoon, yeah, you heard him, and you heard my radio playing songs by Blink-182 and you heard lawnmowers and cars and dogs barking and all sorts of things, and then they went away, the radio shut off, the cars driving away, the dogs sleeping, and Mr F? He went inside to swing quietly by himself and, when things get too hard, to beat himself on the head savagely.

Mr F might bother you, the way apparently that boy bothered that awful woman who wrote that note about the other boy with autism, but can he bother someone so much that he should inspire that level of vitriol? To wish him dead? To insult him and his family and suggest they cut him to pieces?

Mr F is a blip, and so, I suspect, is that boy, and that hatred cannot, I believe, be actually inspired by anyone who is simply wandering through our world almost helplessly, someone who is so lost and endangered that he must be physically restrained at almost all times, someone who has such trouble making himself understood that his words are garbled and moaning at times.  Maybe you don't understand that, and maybe sometimes you are annoyed by it.  Maybe sometimes you have to turn up your audiobook before you instead turn it off and talk to him.  Maybe sometimes your haircut, or your Sunday morning isn't so peaceful.

But before you wish that person dead, remember that however much he is bothering you, EVERYTHING is bothering him, a billion times worse than you will ever know.

Then, instead of wishing that little boy would shut up or wishing him dead, go give that boy a hug, maybe, instead.

Sunday, August 18, 2013

Hey, how's Mr Bunches Traveling Salvation Garden doing?

Incredibly well:

You can't see it, but there is a thing growing in there that I thought was a green pepper, but then after looking at the original post, I saw that we didn't actually plant any peppers.  So it is the two plants that have made it through the summer -- the tall one and the one with wide leaves/orange flowers are one of these:

-- Turnips (2)
--  Gourds.
-- Flowers of some kind I think Marigolds maybe?
-- Dill
-- Probably some kind of beans, I forgot.
-- "Italian" spinach

But it's anyone's guess which is which. I thought maybe the tall one was the "italian" spinach, but I'm not sure spinach grows so tall.