I like the phone

I didn't realize there was a person on the other end until I watched the video.

Yet another kid picture post

I got so bored at a recent school fundraiser at which DW and I were in charge of arranging bowls and mugs that I spelled out the honoree's last name (Greco) with coffee cups.

A loves the penny arcade at the mall.

T is over his fear of the zoo train. Maybe we'll get him to ride it next time we go.

I'm still decompressing from T's recent move crisis. He was moved from his mini-group home "pod" onto a regular dormitory with no advance notice to us. I was furious and immediately went into lawyer mode. It took a couple of weeks to get everybody together and straighten out everything. T's behavior warranted a move, based on the information I got after the fact, but it would have been easier on him had we been able to go up there and help transition him from one place to another. T still sees A on a regular basis, and the direct care workers on the dorm are being trained in Applied Behavior Analysis techniques for working with T (somthing that will help other kids who are not yet in the Autism Center program). Hopefully T's behavior will improve enough that he can move from the dorm into a group home when a new one opens up.

ABA in One Week?

This CNN article gives a pretty decent basic explanation of applied behavioral analysis, which is the most widely used autism intervention methodology. Based on my personal experience, I really have to wonder whether this ABA therapist was able to turn around this girl's behavior in a one week intervention. I vividly remember the day it took five adults to restrain both of my boys during in-home training, and A. still managed to bite a chunk of flesh from the psychiatrist. Moreover, most experts I've read speak in terms of years.

Rough Birthday

T's 12th birthday was last week. He surprised us by singing all four lines of "Happy Birthday" to us. He picked up a copy of Kung Fu Panda during his last visit home, so we got him a panda cake. It was a hit.

We played games at Chuck E Cheese, as well as the usual beanie crane in the WalMart foyer. T was as interested in the mechanical dancing mouse as he was in the games, but he was terrified of the faux rodent when I took him up to it.

T's obsessive compulsive behaviors have increased sharply, and his ability to self-regulate has decreased proportionately. The newest obsession is La Quinta hotels, based on an ad on the back of Rand McNally. He loves the logo of the Sun, and he demands "Sun, please" whenever we pass a La Quinta. Alas, there is a new LQ close to the house and, worse, next to WalMart. The LQ thing has combined with his ongoing obsessions with elevators, airplanes, and McDonald's French fries. T's tantrums when his obsessions were not indulged were pretty bad, and it was deeply saddening to observe. I'm really not sure exactly how to address these issues--I'm not crazy about upping his meds, and I don't know that a nazi behaviorist crackdown would have much effect--not to mention that I'm constitutionally incapable of such a thing.

Arrested for Aspergers? WTF?

An 8-year-old girl in Coeur d'Alene, Idaho, with Asperger's Syndrome was arrested and taken to juvie after acting out when her teachers would not allow her to wear a cow costume to a party. Yes, they jailed a kid over an effing cow costume! If I were her dad, I would go and bite those teachers myself.

Yes, let's beat up disabled children, shall we?

Who is this Michael Savage idiot, anyway? Other than someone I'd like to smack upside the head, I mean. What a douche!

Blinding me with science

Researchers at Harvard have discovered six genes they believe are related to autism causation. However, they noted that pretty much each family with autistic genes has its own unique etiology. Evidently, these genes are responsible for the activation of synapses in the brain in the first few years of life; in autistic kids the activation switches never turn on. The good news is that the medical profession is getting better at formulating medications that flip genetic switches. Also, the result appears to validate applied behavior analysis programs and their intense, repetitive training, which may help develop synapses. My sons' ABA training is hard work for them, but they enjoy learning, and the ABA appears to have improved their intellectual capabilities as well as their overall behavior.

The Baptism Scene, 2008

Raising Money

Our St. Mary's Parents Group had a very successful fundraiser yesterday. We sold bowls painted by our children. Prominent chef John Folse kindly brought some members of his restaurant staff up from Baton Rouge and prepared gumbo to be eaten from the bowls. Actually, we gave folks plastic bowls to eat from after thinking through the hygeinics of the situation. Also, several businesses and individuals donated some very nice auction items; DW purchased a beautiful little necklace donated by a nun from Bangladesh.

I spent about two hours on Saturday afternoon rooting through almost all of the bowls, trying to find the three of our kids' eight that weren't in our reserved stack. I was able to find them by going through all of the unsigned bowls and examining the painting styles very closely. Once I assured myself beyond a reasonable doubt, I put three of the unsigned bowls in our stack. Because I became rather familiar with the bowls, DW and I were put in charge of distributing them.

Here I am in a white shirt and a green apron. Moving right along . . .

Of Baptisms and Beaches

I had a moment of panic a few days ago when I was told that T. is scheduled to take first communion on Mothers' Day, something that evidently is a tradition in the U.S. Catholic Church. As a lapsed non-Catholic Christian, this is a tradition I previously knew nothing about, and, no, my panic had nothing to do with anti-papism. We agreed to his Catholic religious education generally when we enrolled him at St. Mary's, and to his more active participation in the ceremonies a few months ago when we discovered that he actually enjoys the formal aspects of the Catholic service. I pointed out then that he hasn't been baptised, and that this might need to be remedied. I thought that maybe someone had forgotten or assumed that some church or other had baptised T. at birth, so I pointed it out again and asked whether we could arrange something. Such a panic is not unreasonable in a New Orleans area resident; in New Orleans, you are presumed Catholic until proven otherwise. However, T's baptism will occur on Mothers' Day also. On reflection, I told myself, "duh. Well, of course. They don't recognize any other church's baptisms, and they have it on record that our family is LDS. And with Benedict reiterating the stance that all other Christian faiths are heresies, they sure as shootin' ain't gonna have no heretic takin' no communion." So soon we will have three faith/spiritual traditions in our little family, with A. left to suggest whether he will follow any particular tradition. Seeing as how he has bit people during mass and has refused to kneel when we've attended the service there, I still regard him as a small-"p" protestant.

A.'s mother is very happy to know that I let him play on only the cleanest parts of the beach.

Louisiana's Tom Sawyer

A modern-day warrior
Mean mean stride,
Todays Tom Sawyer
Mean mean pride.

Though his mind is not for rent,
Dont put him down as arrogant.
His reserve, a quiet defense,
Riding out the days events.
The river

And what you say about his company
Is what you say about society.
Catch the mist, catch the myth
Catch the mystery, catch the drift.

The world is, the world is,
Love and life are deep,
Maybe as his eyes are wide.

Todays Tom Sawyer,
He gets high on you,
And the space he invades
He gets by on you.

No, his mind is not for rent
To any God or government.
Always hopeful, yet discontent,
He knows changes arent permanent,
But change is.

And what you say about his company
Is what you say about society.
Catch the witness, catch the wit,
Catch the spirit, catch the spit.

The world is, the world is,
Love and life are deep,
Maybe as his skies are wide.

Exit the warrior,
Todays Tom Sawyer,
He gets high on you,
And the energy you trade,
He gets right on to the friction of the day.

--Rush, Tom Sawyer

Once again, my youngest son is showing his own sense of style. I don't know how he came across this hat, but it looks pretty damn good on him. At first, I thought about the Indiana Jones movies, but then Rush's old song about today's Tom Sawyer came to mind, and it seemed to fit his personality much better, except for the notion that he might accept change as a permanent phenomonon--that doesn't fit at all.



T. had a difficult weekend at home. His obsession with elevators and airplanes led to a major behavioral meltdown at a shopping mall in Metairie, LA. Surprisingly, he was very happy when we went straight home after we dragged him kicking and screaming from the mall, and he didn't ask for elevators or airplanes again. Later, we went to the Mississippi Gulf Coast. T. insisted on going to the beach adjacent to the Pass Christian yacht club and shrimp boat harbor. We used to go to that strip of beach because it had a bathroom pavilion and a McDonald's across the street. Both the pavilion and the McDonald's were destroyed by Hurricane Katrina, and neither has been rebuilt. On Friday, for the first time ever, T. insisted that he was going to walk along the harbor's concrete seawall. Unfortunately, the seawall too was damaged by Katrina, and I thought it unsafe for him to walk on it. Also, building contractors were on-site yesterday, rebuilding structures that were flattened by the storm. Again, he had to be dragged back to the car kicking and screaming.

I felt terrible for T. over the weekend. He is rapidly entering puberty, so his hormones are wreaking all kinds of havok. The OCD component of his autism seems to have intensified. Moreover, he seems to be wanting to drop his obsessions in favor of other activities, but can't quite seem to do so. Fortunately, it will be warm enough to put up our backyard swimming pool before his next visit home.



T. is learning to write his name again. When he was 4 or 5, he was able to write his name and write some numbers. We got very excited and bought an easel that I set up on a Friday afternoon. He woke up on Saturday morning and had completely lost his ability to write anything. T. has a seizure disorder--one that is so mild the best course of treatment is to just watch it instead of medicating--and we suspect that he had a seizure that Friday night several years ago. Around one-third of children with autism also have epilepsy; I really don't know how the two are connected. T. is just starting to regain his writing skills. In this photo, he has drawn an elevator with a stick figure of himself riding on it. I almost cried when I saw him writing his letters.

Of Bowls and Behaviors

I visited the Autism Center at St. Mary's the other day. Each of my boys has his own training room, where he recieves 1:1 ABA training per day. Both of them are doing well with their current objectives.

The St. Mary's Parents Group is holding a fundraiser in April, the Greco Bowl, honoring the late Bishop Charles Greco. This is our first attempt at this kind of fundraiser, but it has great potential. The kids are painting bowls, which a regionally renowned chef (John Folse, who has a show on PBS) will fill with gumbo. The diner then keeps the bowl. We're probably going to reserve all of our kids' bowls and give out a few as gifts.

A. has a minor case of sinusitis this weekend, but he had a great time playing in the warm water of the hotel swimming pool.

T. had an up-and-down weekend at home. We're working through a period of obsessive/compulsive behavior that can be painful to observe. As God is my witness, I had no idea that Clearview Mall has two key-operated freight elevators with the doors permanently opened (what, were teenagers having sex in there or something?). Also, the other elevator we had been riding stopped on us. Not good. Not good at all. However, there was a stiff wind coming off the gulf, and T. was able to play in a nice little surf, albeit while wearing a long sleeved boatsman's shirt. That was fun. This morning, T. was extra clever. He saw some unfolded swimsuits on the couch, so he found a suitcase and packed it with the swimsuits. If he could get that suitcase into the car, it would mean we would have to check into the hotel to go swimming. Not bad reasoning, and it took some planning.

Christmas 2007--can we have a do-over?

anticipation
blue! orange! elevators!
christmas day meltdown

father's heart breaking
brotherly compassion lives
brave little trooper

Christmas didn't go well for my little family this year. Everything was closed, including the McDonald's that's always been open before on Christmas day. T's entire local ritual is based on going to retail establishments either to shop or ride elevators, and he couldn't handle not being able to have the rituals that he anticipates and needs. A was a good sport about it all.

We never really had Christmas traditions when I was a kid. Every year, we'd drive from Oklahoma to Baton Rouge, where we stayed at my grandmother's house. We shuttled around the area to various relatives' homes, and spent a great deal of time with a set of relatives whom, quite honestly, I viewed as my inferiors--I mean, my mother made us wear shoes, for heaven's sake. Christmas day opened with us ripping open our packages, then waiting for the various and sundry relatives to arrive. The group was always very loud, and there were so many people there that chaos was the norm. The adults would watch meaningless football games on television with the volume turned up all the way, and the table talk was about scintillating topics like planning for retirement and how black people had a secret plan to take over the Deep South. The same pattern continued, only at our house, after my dad died and we moved to Baton Rouge. I would usually retreat to my bedroom with a book once the noise began to numb my brain.

DW's family is certainly not perfect, but they have relatively elaborate Christmas traditions. The children in the extended family perform a nativity skit, and presents aren't opened until pretty much everybody gets there. I did think it a bit odd that presents were passed out one at a time, to be opened in front of everyone, but it gave me a fabulous opening when DW's brother-in-law got so fascinated by his new electric drill that he didn't hear his name called on the next round. "Stop playing with your tool and get over there," I muttered to DW, who shouted my words out loud.

I think it would be neat to give my kids more memorable Christmases than I had, and DW would like to give the kids the kinds of Christmases she remembers. However, our reality is such that we have to adapt to our circumstances and do the best we can. The kids had some fun this time around, and they did like the merchandise Santa brought them, so it wasn't all bad--but my heart is still broken.

Child of God

"Cheese!"

Well, T's purchase of a King David action figure a couple of weeks ago may not have been an isolated incident. He is showing an interest in some of the formal aspects of the Sunday mass, and he may be trained to play a part in that. Yesterday, we bought him Moses, Samson, and Jonah action figures as Christmas presents to go along with David. Jesus was sold-out (by some WalMart Judas, I suppose). Whether his interest in religion progresses further is something on which we'll wait and see. In any event, it appears that something in that realm is connecting with T on some level. I suppose that if God can manifest Himself to folks like Moses, Joseph Smith, and St. Teresa of Avila, He can manifest Himself to a kid like T in a way that T can understand.

Shiznit, dogg! A be da gangsta!

This past weekend, A wore a ballcap promoting my undergraduate university, whose football team will be playing for the collegiate national championship in a couple of weeks. I put the cap on him bill-forward, but he soon changed it to bill-backward, then sideward, like a gangsta rapper.

Lions and Tigers and Endogenic Retroviruses, oh my!

A few months back, I read an article in a scientific journal using statistics from genetic studies to propose a theory that autism in some children--particularly in families with more than one child with autism--may be caused by genetic mutations that enter the germ line (sperm and egg) and that are passed from generation to generation. Thanks to Gentle Reader Ros, Ph.D., for helping me interpret that article. The article suggested that those endogenetic mutations most likely were passed down through the female parent, something that my non-scientific brain wondered about. After all, my wife has five sisters, none of whom have children with autism--and we're talking about women who have between two and four kids.

Yesterday, I read a fascinating article in the New Yorker about the field of paleovirology, or the study of ancient retroviruses. Because retroviruses encode themselves into the DNA of their hosts, they are the only viruses that theoretically could enter the germ line and be passed down intergenerationally. It turns out that numerous retroviruses became endogenic over the years, and that harmless fragments of those retroviruses are in our DNA. It also turns out that a retrovirus may have been responsible for the development of the placenta, which allows mammals to have live births instead of hatching from eggs.

Molecular biologists have been able to piece together some of these ancient retroviruses and reconstruct them (somehow in a socially responsible way that allows them to reproduce only once) for use in research to assist in finding cures for modern retroviral infections. For instance, millions of years ago, other primates became infected with a retrovirus called PtERV, while humans did not become infected. We have a gene called TRIM5a, which produecs a protein that destroys PtERV. Other primates also have TRIM5a, but it works differently in them. In the Rhesus monkey, TRIM5a destroys HIV. Reserachers took the human gene and modified it to work like the monkey gene. What they discovered was that the gene can destroy PtERV or HIV, but never both. So, theoretically, if a medication can be formulated that will work the monkey gene, while not messing up the human one, there may be an effective cure for HIV diseases. It's a well-written article, as any scientific writing must be for me to make heads or tails of it.

The New Yorker article got me thinking about the article I read earlier about autism and its possible endogenetic causes. Could it be that there are dormant genetic mutations carried by both the female and the male of the species, that, when combined after X number of generations of mutation, create a sort of genetic perfect storm? I have no idea. This mad scientist stuff sure is interesting.

ETA--Senator Clinton is pledging to spend $700 million annually towards autism research and suppot services if she is elected president. I'm not endorsing; I'm just saying. Hopefully the other presidential candidates will make similar commitments.

Boy, elevated

My boys continue to amaze and fascinate me. T was obsessive/compulsive about elevators this weekend, so much so that he fell into a stagnant, stinky, black drainage canal trying to get to a building that has one. The most astonishing thing about this is that he was headed in exactly the right direction, without ever having been in that particular neighborhood before. It all started at a local park, when T ostensibly decided he to walk around on the nature trail. He and I ended up meandering around an unfamiliar part of town. It took a while for me to figure out what was going on. T's sense of geography is scarily accurate. He was heading straight for a hospital he knows has several elevators, though it was quite far ahead. The building is not visible from that neighborhood.

As for the drainage canal, I thought I had spotted a way to the nearby main thoroughfare, but the way was blocked by the canal. As I looked up and down the canal for a way to cross, T took off down the narrow bank. He was in tennis shoes; I was in Birkenstocks, so my footing was most unsure, and my balance isn't the greatest to begin with. T's balance is almost as good as his sense of geography, but he misjudged his footing and slid down into the knee-deep sludge. I pulled him out no worse for wear, but very wet and stinking badly. I saw a utility pipe going across the canal, parallel to, and about two feet away from, a telephone pole laid across the waterway. I sat on the pole and slid my butt across, holding T's hand as he walked across on the pipe. We came out very close to the LDS Bishop's Storehouse, which he is absolutely convinced contains an elevator. I've not been in the building, but I suspect that what looks like a second story is a food warehouse area accessed with ladders and/or lifts instead of elevators. I had to utilize a "crisis prevention" walk (read "manhandle") to get T back to the park, about a mile away. We got in plenty of elevator play at our usual stops, and I took T to the beach, which he enjoyed as much as A did last week.

It seemed that T's autism/OCD is coinciding with some pretty typical boy behavior. I wasn't one to risk dumping myself into the ooze just to get something I wanted when I was that age, much less not caring about it, but plenty of boys are more like T. Also, T won't let me give him hugs and kisses anymore--it seems to embarass him--while he remains openly affectionate towards DW. This afternoon, we brought T back to Alexandria and checked into the hotel where we have our "swimming pool" visits with our kids. After some swimming and elevator play, T pointed at me, put his face close to mine, and said, "nissyu." He repeated that phrase several times to both DW and me over the next few minutes, and it didn't dawn on me until later that he was saying "miss you," as in "okay, I'm ready to go back to school now." T is a very brave, rapidly maturing little man these days.

ETA--Another thing I've noticed recently is T's ability to window-shop for toys whilst playing with other ones. He'll fiddle with this or that toy at the store, then, on the next trip there, make a beeline for another, nearby toy in which he showed no interest whatsoever. Yesterday, he chose to purchase a Bible action figure of King David, I suppose demonstrating that his Catholic religious education is taking hold. I told him that his mommy would be very pleased with his selection. This David is a bit of a blabbermouth--he tends to speak for a few minutes at a stretch when you push the button on his back. Also, DW was pleased with the selection, particularly upon noticing that this plastic David did not blame Bathsheba for David's most notorious act of adultery and treachery--unlike the evidently self-hating women of the Logan, Utah, 24th LDS Ward gospel doctrine class, and unlike the self-hating woman in the New Orleans 1st LDS Ward, whose insistence that Bathsheba was to blame annoyed DW so much that she went into labor with A within hours of leading a doctrinal discussion of the David/Bathsheba incident. I think it would be hilarious to have a Soto Zen Buddha action figure. You push the button on his back, and he says absolutely nothing, emphasizing the wordless transmission of the dharma.

T had me draw this in the car yesterday, one of about 50 pictures of McDonald's I drew this week. Wouldn't it be nice if all of our obsessions and desires came with rainbows and sunshine?

Birthday Boy

At the beach, Waveland, Mississippi.

A had a fabulous ninth birthday weekend. He even blew out the candle on his cake for the very first time, after DW pulled out a bubble wand to suggest how hard he needed to blow. I decided to let A walk into WalMart on his own, instead of placing him in a cart as soon as I park the car. He took the opportunity to explore his fascination with the cart "garage" in the foyer. He enjoyed the long strips of clear plastic at the end of that area, and he took me there repeatedly. Once he got inside and ran into the store that way, the interior part of the cart garage had no appeal. Inside the store, he still likes riding in the cart.

DW and I are seeing a huge overall improvement in A's development recently. He is much more aware of his environment than he used to be. He chooses videos to watch, and kinda, sorta knows how to work the VCR. He increasingly is taking the initiative to do things for himself instead of having other people do them for him--though he actually started doing that a few years ago when he started teaching himself to swim. Most important, he is communicating his needs and wants much better than before, sometimes in creative ways. When he wants the driver to turn right or left, for instance, he reaches up and pulls on the front seat passenger seat belt if nobody is in that seat. When I took him to the mall the other day, I wasn't sure whether he wanted to be there. I extended my arm into the back seat. He slapped the palm of my hand, which sometimes can mean "I want" (which he has been taught to indicate by clapping with his arms in front of his chest), then pushed my hand towards the steering wheel. Off to WalMart we went.

We tried a new thing with T yesterday when we dropped off A. It's very difficult to take T around town without us having free access to a swimming pool or an elevator. The boys' new living accommodations make it possible for us to visit them on-campus, something we've never tried before. We arranged with the autism center to have a play-date with T, knowing he would not be happy when he didn't ride away in the car. We got him a big kids' meal from Burger King and brought in some notebooks and pencils. We spent about 20 minutes there, and he didn't get upset until we said "bye-bye." The autism center's residential director was in the room to help him work through things. I felt like crap about disappointing T's expectations--it was like a razor blade cutting into my soul--but this is the only way I can see visiting him on the occasions when we take A back from a home visit. Moreover, we want to be able to attend some of the family functions on-campus, something we have been unable to do. We did an after-action review in the car on the drive home, so we know how we will tweak our next on-campus visit. We'll have T home for a few days early next week, so I'm getting ready for some elevator riding.

I am very proud of my boys, and I can't find the words to describe how much I love and cherish them. They are far more courageous than I ever had to be as a child. They also have come quite a ways in their development, and they love to learn. Absent a cure, they will always be severely developmentally disabled, and will require 24/7 supervision. However, that doesn't mean that they can't learn, grow, and have experiences that will help them be happy and achieve their full potential. As I've said before, all parents want the same basic things for their children--happiness, safety, long-term security, education, self-esteem, self-confidence, feeling loved, etc.; parents like us just have to redefine how those are measured and achieved with our childrens' limitations in mind.

Courage and Hope

I'm reminded frequently that my kids are extremely courageous. We had a nice visit with both of them in Alexandria, LA, this past weekend. T. got to ride the elevator at the local hotel, and both kids had a great time in the hotel's outdoor swimming pool. As we drove T. past the local hospital, where he is obsessive/compulsive about wanting to go play with the multi-storied elevators therein, we could hear him talking to himself--"okay, be quiet; okay, be quiet." He maintained his self-control, and we made it around the corner and down the street to WalMart without incident. It took guts for him to keep it together as we drove past that hospital.

Is it really almost Halloween? Well, how could I not know this, seeing how WalMart and Target have had their Halloween stuff out since late August.

We visited the newly refurbished St. Mary's miniature golf course on Sunday afternoon. The course was recently redone by the parents' group, and since we're parents, we accepted an invitation to walk over and have a look at it. We also visited a new group home for young adult men; it is nicer than our house inside. The improvements and additions up there give me hope for the future.

Doing it himself

My youngest son is realizing that he can do some of his favorite things for himself, like blowing bubbles and running the vacuum (though he already has taught himself to swim). This is huge, and a source of great parental pride. Of course, someone else has to push the vacuum while he looks at the light on the front of it. Also, he is going through a phase during which there is a place for everything, and everything must be in its place. He apparently noticed that a particular item was placed slightly differently in our two local WalMarts, and I think he wanted me to move it at one of the stores. Because he's nonverbal, I'm not absolutely sure about this, but a trip back to the other WalMart seemed to support my theory. The item in question is a fixed display, so I couldn't move it for him even if I had wanted to. However, I noticed that another store we frequent actually moved its sales circular rack to the spot where A. had me move it several few months ago. I guess he was right about where the thing belongs.