A new record!

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Diver is keen on getting into the Guiness Book of World Records. While he's not yet world class, today he achieved a personal best, wearing the same pants five days in a row. Straight. Not on in the morning and off at night. On, around the clock, five days in a row. He is, at long last, soaking in the tub. The pants are on the floor, where they will remain until someone in a haz-mat suit removes them.

On the bathroom wall hangs a fidget made of plastic suction cups, an attempt at the longest-a-suction-cup-ever-stuck-to-the-wall record. These are not Diver's first attempts to get into the Guiness book. There was the world's biggest rubber band ball, the world's longest rubber band chain, and longest a kid has ever gone without a bath record. Why do our AS kids yearn to be in the Guiness book?

Diver has tried so many things to get into the book that he claims he's #1 in the most failed attempts. I hate to tell him he's not there yet.

Read this

Diver announced that there is a new kid in his social skills group, "And he really needs Lindamood Bell."

Diver would know.  Until he went to Lindamood Bell last year, he was reading at a 2nd grade level.  Within 10 weeks, he was reading at a 7th grade level.  So he knows what it is to struggle with reading.

Diver had blurted out his comment to me.  Did he do it to the new kid?

"Diver," I gulped, "Did you tell him he needed Lindamood Bell?"

No.

The social skills training is working. 

Jump the Snark

You tell'em, sister:

Asperger's Syndrome does not make someone a murderer. So a big fat razzberry to Twin Cities attorney Alan Margoles who claims his client Michael John Anderson committed murder because he has Asperger's. People with Asperger's are characterized by many traits, including, as the Star Tribune relates, "clumsiness and eccentric speech and behavior". But murder? That's not in the DSM.Susan Berkson, Jump the Snark, Mar 2009

You should read the whole article.

The party's over

The pity party, that is.  Nothing like a reality check to change your perspective.  I got mine today at a hospital.  I have a chronic illness that is under control with careful medication and management.  Not everyone is so lucky.  At the hospital today for my quarterly round of tests, I saw many people much worse off.  Many people in wheelchairs, on oxygen, and worse.  And sitting across from me in the waiting room was a mom whose child had some developmental disability, far more profoundly affected than my own.  So a slap on the left cheek, a slap on the right cheek, and my pity party is over.  

Pity Party

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*Warning*Warning*

Anonymom is feeling very sorry for herself; I'm-all-alone-everybody-else-has-family-and-friends-nobody-likes-me-sorry for herself. Things will never get better. I will only get older, fatter, lonelier, sicker, poorer.

The party started this morning when I walked to synagogue where a Bat Mitzvah was in progress. The sanctuary was full of the Bat Mitzvah's family and friends. I began thinking, Who will come to Diver's Bar Mitzvah? How will I pay for a lunch? Or a dinner? Or a party? I lasted for about an hour, during which I envied everyone else in the sanctuary; she's got a husband, she's thin, they're rich, her kid doesn't have autism, her parents are still alive, their family gets along, she's healthy, their kid is mainstreamed, she has a job, they never reciprocated the dinner invitation. At which point, I schlepped home, took to my bed and wept; well, squeezed out a tear. We can always have a Bar Mitzvah Pity Party. Don't need friends or family for that.

Executive Function

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Executive function. Sounds like a cocktail event for senior management. We auti-moms know better; not because our kids have it. Because our kids don't. Executive function is planning, organizing, strategizing and following through with a plan. So we guide our kids with verbal cues and explicit instructions and prompt, prompt, prompt.

After being home with a cold for three days, Diver felt well enough to go outside today. He stank from his three days in bed, so I sad, "Bathe, and then you can go outside and play." I went off to Target and returned to find him outside, rosy-cheeked, digging in the snow. "I even took a bath, Mom!" he reported cheerfully. In the bathroom, I saw towels on the floor, but no clothes. "Diver", I asked, when he came in, "you said you bathed, but where's your dirty clothes?" "I'm wearing them. You didn't say to put on clean clothes."

True. I didn't. I assumed he would put on clean clothes, but his literal mind heard the "Bathe" instruction; nothing less, nothing more. Clean boy, dirty clothes. And now I have the cold.

,

A Different Yardstick

1. Mark on the yardstick:

For a kid who loves pyrotechnics, Diver has always been nervous about the flame on the stove. So yesterday, when he informed me that I had left the teakettle burning on the stove and that he had handled it single-handedly, I was delighted.  "I turned off the stove, got a potholder, cooled off the kettle in the sink, opened the window, and Mom, don't leave the house with the kettle on," said the kid who freaks out when a watched pot boils.  

2.  Mark on the yardstick:

When your son's therapist sees him in an LD (learning disorder, i.e. ADD, ADHD, LD-NOS, dyslexic) setting instead of an ASD setting.  And that happened today.  "Anonymom, Diver has come so far and really outpaced the other kids in his program.  Typically the LD school doesn't take ASD kids, but Diver is in great shape."

Happy yardstick.

Another day, another treatment

A friend saw this story on the BBC News website and thought I should see it.
** Oxygen therapy benefit in autism **
Oxygen treatment given under pressurised atmospheric conditions may improve symptoms in some children with autism, US researchers say.
< http://news.bbc.co.uk/go/em/fr/-/2/hi/health/7940149.stm >
We used to get such nudges all the time. Friends, family, neighbors, strangers would say, "Autism, huh? Have you tried...?" (fill in the blank)

• chiropractic
• acupuncture
• music therapy
• floor time
• chelation
• PT
• OT
• CBT
• nutrition
• ABA
• social skills groups
• hypnosis
• Please tell me what else you've been urged to try
  

There are so many therapies to try. And there is simply not enough time or money to try them all. You feel you'd go to the ends of the earth for your child. And you do. But you live in the real world with its real demands; time, money, job, insurance, other children, your health, your marriage, your sanity.

Some things work for some people. But there is no template for how to treat our kids. Everybody cobbles together something that works. For now. And switches it around next year.

The friend who sent this article is one of the few who has always been there for Diver and me. So I went to the BBC News website and read the article. That much I can do.

Remembering the bad old days

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Diver's not-so-sweet Sunday spilled over into Monday. Couldn't get out of bed, wanted to stay home from school, had to be humored and managed to get out the door. After school, he went immediately to bed, skipping his social skills group, barking at every attempt to stay in his normal Monday routine. Moody, irritable, angry, depressed. It reminded me of the bad old days, of which there were many; years of them. Flareups, meltdowns, furniture throwing, tears on both our parts. He's come so far and the last nine months have been so different that I'd forgotten what it used to be like. I remember now.

Thank god, he got a good night's sleep. He woke up refreshed and happy, had a great day at school while I crossed my fingers and prayed, and came home in sync with the world. Maybe the time change threw him. Who knows? I'm just glad to have my boy back.

Not-so-sweet Sunday

We hate Sundays, both of us. For me, Sunday brings home my very solitary life. It's family day; people do things with their families, and Diver and I have only each other. No partner. No siblings. No extended family. No Sunday dinner with the folks. For Diver, its the lack of routine that's most painful. Monday-Friday we've got a good thing going now. Saturday we can generally find an activity of interest. Saturday night Diver is with his Dad. Then comes Sunday, when we have nowhere to go and nothing to do. I've tried to build in some routine for Diver with a religious school class and a session with his trainer at the Y, but it's not working. Our lives are just empty.

Swiss cheese development

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I was going to post about my boy who told me he'd figured out how to crack light speed; the same boy who asked me how to spell "club." That's my boy. Cracking theoretical physics and failing first grade spelling.

In a flurry of information-seeking after Diver was diagnosed, I remember reading that kids with Asperger's were characterized as having "Swiss cheese" development, full of holes. It's certainly true of Diver, who illuminated his light speed theory with a detailed explanation in which the only word I understood was "velocity". The same boy, searching for a particular Google earth image, today asked, "How do you spell 'Google'?"

Go figure. The spelling I'll let go. The light speed theory I'll transcribe, in case it advances theoretical physics.

Give a little

Teachers ask.  You choose.  Students with autism learn.  You can help.  

Donor's Choice will link you to a list of autism teachers with some basic requests for their classrooms; manipulatives, clay, confetti glue, balance balls.  Diver is in an interdistrict ASD program with the resources to meet his needs (sensory, motor, communication), but not every kid with autism is so lucky.   So give a little.  You can help, a lot. 

On the spectrum

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Thursday at bedtime, Diver, irritable and squirmy, had retreated to his basement swing, where he furiously rocked while nuking bad guys on his xbox. "Mom," he demanded, " Aren't you going to come here and ask about stuff?"

Ok.

"Every day at school something goes wrong. Someone melts down. Someone spazzes out. I'm tired of it. "

Rock, nuke, rock, nuke.

"Do you know what it's like to go on a field trip, like to the zoo, and if one guy in your class can't handle it, you all have to go back to school?"

Rock, nuke, rock, nuke.

"I cope with it. I cope, but I'm tired of it. Frick is mean. Frack is weird. Fred is in another world. I don't have any peers. And Miss ABC, the teaching assistant, isn't too sharp."

Rock, nuke. Nuke, rock.

What happens now? Diver had six years of failure in the mainstream while we struggled to get him tested, struggled to get him diagnosed and struggled to get him services; six years that culminated in dropping out of sixth grade and hiring an attorney to take on the school district. Which culminated in the interdistrict ASD (autism spectrum disorder) placement where he has happily spent the last six months. The routine and structure have been powerful healers for him, turning him into a happy, stable, composed kid. So much of what the school district called his pathologies (anxiety disorder, mood disorder, depression) disappeared when he was finally in this appropriate setting. So now when Diver, who has Asperger's, looks around at his classmates on the spectrum......he sees kids who are not peers.
What happens now? I don't think he's ready to be in the mainstream. To lose the supports and stucture that have made him successful would be a disaster.