October 2008

Years ago, when we lived in a hateful, awful place (This Old House is falling apart), we started a tradition of handing out candy to the parents who brought their kids around for trick-or-treating. In the hateful, awful place, we lived close enough to the town square (I know, you thought I WAS the town square) that parents would just drop off a carload of kids in the square, and come back a couple hours later. It was that kind of place.

That meant there were sometimes roving bands of 5-year-olds running through the street. That meant we had a LOT of kids who had no idea that they should be nice to the people giving them candy… Before I married Tim, I had a big dog, and actually had to threaten a group of teenagers to get off my porch by opening the door and letting big dog out (half rottweiler, so scary looking). Of course they didn’t know said big dog would simply have tried to lick them to death, but still.

In any case, we started giving out good candy to the parents who actually, you know, actually parented. We gave them Dove dark chocolate. We call it Mom Candy for 2 reasons: 1) usually, it was a mom bringing the kids around, and 2) if the parent was a dad, he usually chose something from the kid-bowl-of-candy, like a Snickers, or Reese’s Cup.

Any adult taking care of kids was eligible for the Mom Candy – grandparents, older siblings, friends, whatever… as long as you were there to take the kid around, you got Mom Candy.

We now live in a smallish neighborhood, full of young families. You NEVER see kids walking around by themselves on Halloween. Often the parents are dressed up too. (I don’t dress up… what can be scarier than the pregnant woman who still might barf on you?!) Parents FORCE their kids to stop at our (completely undecorated and therefore uncool) house – so the parents can score the Mom Candy. We see them out at different times of the year – “Oh, you’re the people with the Mom Candy.”

It’s not the place where everybody knows your name… but they sure know where you live!

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I had intended to write some sort of analysis of the Presidential candidates and their policies relating to autism spectrum disorders, education, and health care. After I wrote some of it, I realized that’s an epic topic somewhere on the order of “How carbon has influenced the evolution of the Earth.”

So, I’m going to point you to the relevant parts of each candidate’s web site and let you make up your own dang minds. :-) I focused the links only on their web sites because 1) so many public political statements spin more than our kids do, and 2) I’m going to assume that their web site statements are considered the official positions of their respective candidates.

If you haven’t voted yet because you don’t live in an early-voting state, or do and just haven’t cast your ballot, MAKE SURE YOU VOTE! NO EXCUSES! I am not a one-issue voter and encourage you not to be either, but I know the issues below are very important to many of our readers.

Regardless of how the whole thing turns out, these policy statements are important to remember for whomever wins the election. We need to keep these issues in front of federal, state, and local governments and make our voices heard when we feel our children are being under-served and shortchanged, particularly when a candidate forgets after they’re elected that they made these promises.

Note: Do not use the comment area to gush about your favorite candidate or flame his opponent. There are a million other places to do that and I don’t feel like dealing with people arguing this week. If you have links to other fact-based information relating to the candidates’ views in these areas or to relevant statements made by the candidates, feel free to post them in the comments, preferably with minimal commentary.

And now, the candidates!

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Wherein I Lose It

by Mary on October 29, 2008

I am working like crazy on a report for work. When I say a report, I actually mean the software behind that nice Excel report that you get – the software that is going to drive me to the insane asylum all by itself. My boss even says “this shows how immature this software is” when today we couldn’t get a number to act like a number. We truly had to “sneak up on it from the other side” to get the software to recognize that the field should be a number. Oh, and that software? We’re upgrading to version 3.0 soon. Can’t wait, since we’ve already found how buggy 3.0 is!

I DREAM about this stupid report. I sit up in the middle of the night with an “ah-ha!” moment. I already have to wake up 3 times per night to pee. I don’t NEED to wake up any more times!

In actual J-man news, I am now persona-non-grata. He has become a definite Daddy’s boy… which, you know, hurts my feelings. I’m all, “I carried you around inside me for 41 1/2 weeks, was in labor for almost 18 hours, and am STILL nursing you, and this is the thanks I get?”

Then, I pull myself back from the ledge of actually being MY MOTHER, and cool down. If the J-man is a Daddy’s boy, it means Mommy gets to eat dinner. You know, eat dinner, and not have to stop eleventy-seven times for something the Little Man wants. It means I don’t have to carry him around the entire time I’m downstairs. It means if I can’t get the J-man to put on clothes, it’s Daddy’s job.

OK, I’ll take that part. But I still miss being the one who makes him smile when he sees me.

On a personal health note, I went to a follow-up visit to the cardiologist yesterday. He was concerned about the pitting edema in my feet/ankles, but we can’t really do anything about it because of the bean. He asked if I was still having shortness of breath and some pain, and I said yes. He asked if I was going to the doctor about it, and I said, “Look, the last time I went to the doctor about this, I ended up in the hospital for 2 days, and it cost me about $1000 out-of-pocket for them to tell me I needed to rest. I can walk into my bedroom and lie down for WAY cheaper than that.” He agreed…

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Just Another Mopey Monday

by Tim on October 27, 2008

Man, everybody was grumpy today. The bottom fell out of the thermometer with no warning. It was cloudy, windy, and generally yuck outside. And it by-god sleeted for a few minutes. It’s North Carolina in October!? Three weeks ago it was like 90 degrees! And I’m sure the autistic kids’ teachers at school would add, “Today was [choice adjective] picture day!”

So, this picture represents the sorts of things we do around here to cheer ourselves up on a gray, nasty, dreary Monday where nobody felt like doing squat. It was worth a good chuckle at least.

First person who sends us flair for having a bad case of the Mondays will get banned. :-)

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Today’s post brought to you by the letters ‘F’ and ‘A’.

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Learning How Not to Say “I’m Sorry.”

by Tim on October 26, 2008

When you’re around many other autistic kids besides your own, a whole array of behaviors don’t faze you, assuming you even notice them at all. If someone’s kid runs around in circles flapping their arms, about all you’ll get from me is a smile. If another kid goes stiff as a board and lies face-down in the mulch yelling and refusing to budge, unless the child is going to harm themselves, I hardly pay it another thought, or I think “yep, mine does that.” If a child bolts for the exits, I just non-chalantly hold out my arm and turn them back around. Our radars are tuned in for any unsafe behaviors, but beyond that, most of us are pretty “whatev” about the whole thing.

There’s a whole shared understanding among parents of autistic children. We’ve been there and done that; there’s no reason for you to explain or apologize or do anything else for that matter.

Recently I was talking to a parent when their child suddenly went into a full-blown, 9.0 on the Richter Scale meltdown. The child started flailing and hitting to the point where injury to self and others was a real possibility. I did what I normally do in that situation – stand ready to help intervene if more hands are needed to prevent those injuries from happening. I’m 225 pounds and 6′ 3″ with enough strength and leverage and a fairly high pain tolerance, along with enough know-how at this point to usually understand how I can help in those situations if needed. Not surprisingly, parents are pretty good about knowing how to de-escalate these situations with their own children, and in this case in a minute or two things were back to relative normalcy.

Still, this particular episode stirred something unusually strong in me, and I had to go sit down with it for a few minutes and figure that out. People who know me well know that I need to sit down and process certain things or else I just carry them around with me forever.

I went through a list of things to see if I could figure out what was different than usual, as typically these situations don’t faze me much. Was I judging them? Never crossed my mind. Discomfort about what the parents of non-autistic kids who saw all this were thinking? Nope. I’ve pretty much stopped caring about that. Feeling the need to jump in and fix it? Yeah, to some degree, but that’s just how I can be sometimes. But I knew this parent knew their child way better than anyone else, so that’s a fleeting thought I wouldn’t have acted on unless there was an imminent, real physical danger there.

Was I glad it wasn’t my child doing it? Oooo, that’s a hard one. That’s one of those issues we parents of autistic children don’t like to talk about. It’s almost a taboo subject. Sentences like “I’m glad my child isn’t a headbanger” will slip out in conversations and it’s common for the speaker to instantly look mortified. It’s also common for the parents they’re talking to – assuming their children aren’t self-injurous – to nod quietly and inwardly agree. It’s just that we can’t imagine what that would be like. J-Man does little more than slap himself on the head sometimes.

It’s not judgment really, but this unfathomable weight that we can feel pressing on us when we try to imagine what it’s like to have a child who repeatedly tries to put his head through a wall. You read about the autistic child who blinded himself because he continuously jabbed his thumbs into his eyes. I hear those stories and simply have no idea what to do with those kinds of unimaginable emotions.

What do you do when you see a parent who would stand in front of a speeding freight train, dig their feet in the ground, and dare the train to hit them in order to protect and save their child, and then see that same parent suffer utter helplessness and desperation at being unable to keep their own child from such wild-eyed, primal-feeling torment? Or worse, be unable to protect their own child from the next horrible injury that comes when their head strikes a stud in the wall this time rather than the empty space in between?

All I want to do is grab that parent and that child in my arms and say, “I’m sorry. I’m so, so sorry.” over and over again until it all goes away. That’s when I figured it out.

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Breaking News – Other Kids Have Names!!

by Tim on October 24, 2008

Yesterday we discovered that those other little things in J-Man’s preschool that move around and do stuff are actually people! Like, children people! And they have names!!

If you’re new to this whole autism thing, you may be saying “Huhwuh?!” And here’s our learning moment du jour – It’s not uncommon for autistic kids to see other kids around them as either not any more noteworthy a part of the environment as chairs and toy cars, or as moving parts of the environment that are very entertaining to watch but not particularly to play with or relate to or anything at a social level (though pushing kids slowly around as if you were rearranging them as chairs is apparently fun sometimes).

At his preschool, they have a little notebook with each kid’s picture in it, and at some points during their day they have to match a photo of a child in their class with the same photo in the notebook. They also try to get the kids who are in some way or another verbal to say some sort of approximation of a particular child’s name when they match up the pictures.

It turns out there’s an “ah-al”, a “kuh-kuh”, and a “co-co” in the class! And to beat all, those are pretty good approximations of their real names! And today he called one of the teachers “Muh-muh”, which is also a great stab at approximating her name! And he doesn’t just do it with the pictures, he’s started using one of the kid’s names with the actual boy himself, and they sorta kinda play together some! And he sometimes comes up and touches him on the arm in what sure looks like an attempt to initiate some social contact! Can I get a whoop whoop! (OK, I’ll stop being a gushing parent who uses out-of-date slang now.)

(OK, I lied – one more.) And we watched him do this with the actual notebook during the parents and teachers group night at the school last night!

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Heavy Work

October 23, 2008

One of the things that is helpful to some autistic kids is doing what is called “heavy work” – essentially, moving heavy things around, pulling loaded wagons, carrying books, etc. This is included in the vestibular/proprioceptive issues that lots of sensory kids have. Heavy work is one of those ways that people who have trouble […]

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The Adventures of Captain Diaper Hat

October 21, 2008

Getting J-Man to in any way cooperate with getting his nighttime pull-up on has been a complete mess lately. We used to just say, “time for your diaper!” and he’d stand up, step in, and off to bed we went. Then for no explicable reason – which is how things normally happen around here – […]

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