You know that show on A&E called Hoarders?? I watch every episode. I don’t know why, they’re all pretty much the same…people with too much shit. Sometimes they have actual shit, sometimes just stuff, and sometimes live animals. And NONE of them want to get rid of their shit. They fight the whole process.
Yeah yeah, I know it’s sad. I know they are people with problems that need help. But it sure makes me feel better about my messy house.
Hey, don’t judge!
A long time ago, I realized the futility of comparing my child to other children. During the “dark period” of diagnostic uncertainty, I did a lot of that. It is not beneficial or helpful in any way. But despite that, sometimes we find ourselves in situations where the comparison is right in your face, and you can’t avoid it.
That happened today, at the natural history museum. It was a really pleasant day, and I was thinking about how smooth it was going, compared to outings of the past. And then, we encountered the boy. I named him Eggbert.
Here’s a picture of Eggbert:
Ok, it's not really Eggbert, but I swear he looked just like this.
We were at the exhibit with all the dinosaur skeletons. Eggbert couldn’t have been older than 6. His dad, Mr. Eggbert, was wearing a shirt that said “Dinosaur Pete.” He didn’t work at the museum, so apparently he was just really into dinosaurs.
And then Eggbert spoke. “That dinosaur has a long neck, but the one with the longest neck is the mamenchisaurus, which is from China.”
Seriously??!
And then my little angel is in front of me, saying “Mommy, can we ride the elevator now?”
“And that one is a chasmosaurus…”
“MOMMY!! I REALLY want to ride the elevator! Can we ride the elevator NOW!”
“The pleurocoelus is from the early cretaceous.” Show off.
“MOMMY, THE ELEVATOR!” Yes, okay, that is, after all, why we trekked to the natural history museum…to ride the elevator.
Yes, Eggbert was one of those freakishly smart, super-genious kids. I’m happy for him, seriously. But riddle me this, Eggbert. While the little super-genious might be brilliant enough to engineer an actual Jurassic Park, what’s he going to do when the velociraptors have his ass surrounded? Pee his pants, that’s what. That’s when my little Tasmanian devil child will come in handy, because he will open up a can of whoop ass on those fuckers.
So even when comparison is unavoidable, I can still see all the positive attributes of my little cave-boy.
Here is an article from Disability Scoop, which ran yesterday. This is the kind of thing that makes me sick to my stomach.
A class action lawsuit filed Wednesday claims three Texas residents with intellectual disabilities have been institutionalized for a combined 130-plus years without any review of their placements and they may not be alone.
The lawsuit filed on behalf of 4,200 residents of Texas institutions identifies three plaintiffs by their initials who were placed at state facilities during their childhood or teenage years and never left.
Today the three have spent between 32 and 60 years each in state care, according to Advocacy, Inc., a nonprofit disability rights group that brought the case.
None of the three have ever had an impartial judicial review to determine if they continue to need an institutional level of care, according to the lawsuit. Yet, professionals hired by the state have indicated that each of the three could be cared for in less restrictive environments.
“An entire class of citizens is being confined by the state of Texas, with no opportunity to challenge the need for continued institutionalization, despite changes in ability, commitment criteria and increased community services,” said Beth Mitchell, senior managing attorney at Advocacy Inc.
The lawsuit names Texas Gov. Rick Perry and a handful of other state officials as defendants.
So then I went to the Advocacy, Inc. site, and read some of their success stories. There I found the following:
In 1934, 16-year-old Opal had a brief psychotic episode and was committed to the Austin State Hospital. The shame and stigma of Opal’s mental illness and staff’s discouragement of visitation caused her family to drift away from her. Opal did not hear from her family again until 1985, when her nephew — whom she had never met — learned of her at a family reunion and decided to find her. He began a long battle to remove Opal from institutions, where she had been living for more than 50 years. With help from Advocacy Inc., Opal got out of state institutions and won a $505,000 verdict against the Texas Department of Mental Health and Mental Retardation for negligently subjecting her to “institutionalization syndrome.” Opal died on March 15, 2005, after spending several happy years in the community, reconnecting with old friends and family members.
So if you’re ever considering moving to Texas….
Scene: The waiting room of a physician group practice for children.
Enter: Rico Suave, played by 5-year-old Connor, with Mother and Father Suave in tow.
Young Rico occupies himself on the floor of the waiting room, playing with toys. Casually, he glances around the waiting room, spotting a cute, slightly older young girl, seated in a chair. Rico gets up, and slowly saunters around the waiting room. He pauses at a chair, where he spies a pink toy pony. With the quickest slight-of-hand, he picks it up. He pauses at the young girl’s chair.
Rico: “Hi. Look, it’s a pony” (he sets it on the arm of her chair).
Jezebel, 7-years-old (played by anonymous girl): “Cool. It’s not mine though.”
Rico: “It’s okay, you can have it.”
Rico nonchalantly seats himself in the chair next to Jezebel. He glances sideways, noticing she is looking at a magazine. He leans forward and picks up a magazine from the table, opening it. There’s a picture of a daisy on the cover.
Rico: “Look, it’s about daisies.”
Jezebel: “Cool.”
As Rico ponders his next move, a man enters the waiting room, calling for Rico. It was the doctor, trying to keep things on schedule.
Rico’s game is abruptly, and sadly, derailed by the doctor. Damn you, doctor, DAMN YOU to HELL!
Scene.
I'll be back for you, Jezebel.
I don’t really make New Year’s “resolutions.” I might set some casual goals, or maybe even make some suggestions to myself, but a resolution is serious business, and I am not capable of handling that kind of demand. So, one of my “suggestions” this year was to spend more time working on this blog.
Reason #1: It’s a good way to avoid laundry and housework.
Reason#2: If I don’t write some stuff and spiff it up a little, the three people that read it will start to think I’m a total douche (you already think that, don’t you?).
I switched to a different template. What do you think?
I lost all the crap in the sidebar when I made the switch, so then I had to go looking for it and put it back. I don’t know anything about programming and languages and CSS and stuff, so I’m more than just a newbie. A simpleton. Yes, that’s it, a simpleton. But I found the stuff and put it back, even though it looks a little disheveled.
So while I was jacking around with the set-up, I am looking at these little links under each post. One is called Reddit. I wonder, “what the hell is a reddit?” I poked around over on that site for an hour, and I’m still not sure what a reddit is. It’s some kind of massive conglomeration of news, where you can submit links and pretty much anything and people vote on them. It’s sort of overwhelming because, it appears, you can submit a picture of your butt and people will vote on it. So even though I made myself an account over there, I’m not sure I have the stamina to spend much time wading through the massive collection of extraneous information.
That’s about as far as I’ve gotten. I should probably think about writing something so one of you can submit it to reddit, and it can compete with butt pictures and news about Oprah’s new half-sister.
We are all sleep deprived at my house.
It's Alien Playtime!
I’m not one to focus on the alphabet my kid has, as much as I focus on what works or doesn’t work. But really, the Asperger’s is so mild compared to the ADHD. The ADHD is like a demon possession, or a Sigourney Weaver alien, that lives in your chest. It doesn’t even rip your chest open and jump out, which would be the honorable thing to do. It just lives inside and controls your body, and fucks things up for everyone in its vicinity.
Connor’s chest alien had him up at 2am. This is according to our housemate, Auntie, who reports that she found him bopping around the living room at that time. She sent him packing back to bed.
His visits to our room started at 3am. He flailed around in our bed until 3:45, and then went back to his room. To be honest, we’re not sure where he went, exactly, but we told him to go back to his room (parenting skills deteriorate in direct proportion to the number of hours of sleep lost).
Then he had to potty.
So basically, he never went back to sleep after 2am. This morning I told him that it has to stop, he must get more sleep…we ALL must get more sleep. He says, “but I don’t want to sleep, I want to PLAY.” I tried explaining that 5-year-olds need more sleep than six hours, but this made no impact. I then told him that our brains don’t work as well when we don’t get enough sleep, hence the big blowout surrounding the definition of “before” that we had yesterday.
As much as I hate the fact that my child has to take medication, I think it’s time for a med change. The lack of proper sleep decreases his ability to focus even more, increases his behaviors, and turns me into a total irrational lunatic.
Maybe I need the meds.
Having a child in school makes me realize that I’m a total dumbass. I’ve been humbled, and no longer consider myself reasonably intelligent.
How, exactly, do you explain the concept of “before” to someone without using the word in the explanation? For example, in explaining what number comes before 7, I tell him “it’s what comes in front of 7. He doesn’t get it. So I say, it’s what comes at the beginning. He says 1. So I say, “no, it’s the number BEFORE the 7.” I’m concerned he won’t make it to first grade.
After dinner he was having some chocolate pudding, and he asks me, “do you want a piece of pudding?” Sweet, but it doesn’t give the impression of superior intelligence. So then I try to explain why pudding isn’t in pieces, but other things are. I also failed miserably at that explanation.
All the hours of children’s programming has not taught me anything. I’m going to start
Elmo stinks at teaching parents.
sending hate mail to that little shit, Elmo.
Yesterday Drew began working with Connor on his tone of speech. We are supposed to ignore Connor when he yells or whines, and respond to him when he uses an appropriate voice. This is much harder than one would think, because I never realized that he whines SO MUCH.
And then I started thinking, “do I whine?” I decided I would make a conscious effort to speak in a tone that is devoid of emotion hence, no whining, no sarcasm, no ironic observations. This is killing me, and I find that if I’m not busy pointing out life’s little absurdities, tinged with a soft hue of sarcasm, then I have very little to say.
Now when I speak, I sound like a robot.
I’m dating myself, but I keep thinking back to that robot from the old TV show, Lost in Space.
Instead of the robot voice saying “Danger Will Robinson,” imagine it saying, “Good morning, what would you like for breakfast?” Or, “Wow, that is an interesting purple velvet pantsuit you have chosen for your attire today” (said to a coworker with an interesting flair for fashion).
It’s just weird. But since we want Connor to learn what “appropriate” speech sounds like, I guess I should actually model that kind of speech. If Connor would just learn to be sarcastic and witty, instead of whiney, this would not be a problem. The sacrifices we make as mothers……
During one of the “trials” yesterday, Connor ended up so mad that he was lying on the floor, crying and yelling, because he was being ignored. If I have to keep this up much longer, I think I will join him on the floor.
Let's use a grownup voice.
Come on, just try them!
2011 brings us good news that makes me super excited. We are one of six families that the UT (University of Texas, Austin) Autism Project will be working with. It’s a great opportunity, and I’m optimistic that we will see some positive results at the end of this six-month endeavor.
One of the grad students will be spending several hours a week in our home, working with Connor using ABA therapy. While this really impacts our weekly schedule, it is so worth it to make the accommodations for this to happen. In fact, we’ve already seen positive results.
Drew has been to our home twice to begin working with Connor. Connor thinks he comes over just to play with him, which is just fine with me. This past weekend, after playing for a while, Connor came to ask for a snack.
“It’s almost dinnertime, if you want a snack, you can have either applesauce or yogurt,” I tell him.
“How about cottage cheese?”
“No, applesauce or yogurt.”
“Ok, yogurt. Do you want some yogurt too, Drew? Wait, we have grapes.” I was surprised he even thought to offer his “friend” a snack, let alone mention the grapes, since he has always refused to eat them.
Drew said he’d prefer grapes, so Connor brought a yogurt for himself, and the bowl of grapes. Drew started throwing grapes in the air, and catching them in his mouth.
“Ohhhh, that’s cool,” says Connor. “I want to try that.” So Connor starts throwing grapes up, and trying to catch them. It didn’t go well, but in the process he managed to gobble down about twenty grapes.
I buy grapes all the time.
I eat grapes a lot, too. But every time I’ve offered some to Connor, he says, “No, I don’t like those.”
“But you’ve never had one,” I tell him.
“Well I could have one, but I won’t like it, so I don’t want one.”
Alrighty then.
Somehow, it never occurred to me to throw them in the air to eat them.
And just like that, we added a new food to Connor’s very limited menu. Food has been a challenge since the very beginning, since we began the transition to solids from baby food. We’ve never been able to figure out if it was a texture issue, or what, exactly. We just know that expanding his menu has been a pain-staking process, and the hard-ass approach doesn’t work.
As parents, we have been creative in ways I never imagined. But I just can’t believe that it never occurred to me to throw grapes in the air.
So now I’m wondering, what kind of fun thing can I do with salad to entice him?
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