News pandemic

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Swine flu news is pandemic.

I have finally managed to wean myself from the 24/7 news cycle, turning off TV and staying away from news sites. I am following CDC on twitter, which is useful, not overload.

It's a different matter for 12-year-old Diver. Glued to CNN, he reminds me that this is his first pandemic. I tell him about others; polio in the 50's, swine flu in the '70's. He is disappointed to learn that I was born too late for the polio epidemic and that I did not catch and survive swine flu, because that would have given him immunity.

Now Diver's announced that he's not leaving the house until swine flu is over. Except to go to school, CAP Cadets, or outside to get some fresh air.

So I think we'll be ok.

Worrier Jr.

Diver is worried about swine flu.  Everybody is.  

But not everybody tapes gloves to their sweatshirt.  Searches the internet for "flu suits."  And asks when we're moving to Alaska.  

I've told him the most important thing we can do is wash our hands.  Wash our hands.  Wash our hands.  It's hard enough for neurotypical folks to handle this.  How are our kids with autism going to get through it?

Parenting, Neurotypical and Otherwise

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Week #2 of CAP Cadet program. Diver is on his own, and Anonymom is marking time in a coffee shop. (Well, marking time is what she was doing until she plugged in her headphones and played Dawn Upshaw Sings Rogers and Hart.)

As Diver and I drove from one end of the metro to the other, I was feeling a bit holy about my willingness to drive so far for my child's activity. And I flashed back to my parents' schlepping me (and my three sibs) to ballet and drama and scouts and voice and piano and baton and .....you name it. There wasn't a night when there wasn't driving. I do it once and feel holy. Puh-lease.

Dawn and I are one hour into this (meaning the cadets have drilled and are now re-convening for education). I'll head back to the base in about 40 minutes and arrive as the Cadets are having their closing flag ceremony (Standing at attention! Saluting!) Its a good thing I'm not there watching because I'm laughing just thinking about it.

And that's a good thing. I don't laugh much. My heart is not often light. So maybe the Civil Air Patrol is good for me. Maybe CAP stand for something else: Carefree Autism Parenting.

Civil Air Patrol

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TO: Major J, Civil Air Patrol, Cadet Squad

Diver is looking forward to his first CAP meeting this evening and we look forward to meeting you.  After discussing it with Diver, we wanted to let you know that Diver has some extra challenges. He handles them well, and often they are not apparent. Still, if he had a peanut allergy or diabetes or a hearing loss, we would inform you about that. Diver's challenge is Asperger's Syndrome, a developmental disability which poses some sensory, social and communication challenges. He has learned to compensate; sometimes he'll ask for a moment to think something over; or he'll take break; or he'll ask that something be explained a second time. He's quite bright and creative and we think that he and CAP will be a great fit. If you have any questions, feel free to ask me.

Cordially, Anonymom

TO: Anonymom,

We look forward to meeting you and your family. Diver is most welcome to check things out and if interested we have no problems with him joining up. We see everyone as equal and our officers are patient with everyone. If he is eager to learn and share his interest with us he will acquire a whole new batch of friends. See you tonight!  Maj. J

After considering whether to disclose Diver's ASD to the adult leader of his new CAP Cadet unit, we took a conservative approach. We disclosed the nature of his challenges but steered clear of a label that might disqualify him. The Major's response was heartening, and we set off for the military base with great excitement (Diver) and anxiety (Anonymom).

Soldiers at the gate! MIlitary aircraft! Jeeps! Tanks! Officers in uniform! The meeting started with a call to attention and Diver was in heaven. They drilled, marched, had aerospace training. Diver was praised for his military knowledge and enthusiasm, and was practically guaranteed a place at the service academy of his choice.  From their mouths to God's ears.

They tried to get me to enlist, too, but I'm already in CAP. Concerned Auti-Parents.

Birthday Party

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Yours, mine, our kids'. Birthday parties always make me nervous.

We've been invited across the street to celebrate the 3rd birthday of our neighbor's child. I think. The handwritten note said, "We're celebrating K's birthday Sunday from 4-7. Please stop by."

Does the invite include Diver? In the bad-old days, Diver used to scare these neighbors, who approached me to express their concern for my safety. It's been a couple of years since Diver engaged in the behavior (meltdowns, yelling, throwing things) that scared them. It's 4:00. We're off.

7:45 pm. Diver did great. There was so much for a child with autism to navigate: heat, crowd, noise, strangers, long waits, little kids, nervous mother. He was a perfect gentleman; courteous, helpful, thoughtful, funny. He could have done it without me. And that's the goal, right?

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Plastics, Benjamin, Plastics

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In the 1967 film The Graduate, Dustin Hoffman's Benjamin is advised to go into plastics. Even then, no one advised that plastics go into him. Good thing. Because today's New York Times brings news of a new study linking childhood obesity to phthalates, the chemical used to soften plastics.

The higher the level of phthalates found in a child's blood, the more obese they were.

As I've shared here, Diver is increasingly overweight. Despite a healthy diet. Despite exercise.

Despite his (and our) doing everything right.

No wonder he keeps gaining weight. Just like the autism, it's not his fault. He's just another casualty of the toxic soup in which we live.

Grey Gardens

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Prone in bed in front of my TV, I call out to Diver in his room, "Good Night!"

From his bed in front of his TV, Diver answers back "Good Night"

It's like Grey Gardens.

We're stuck here, Diver and me. Stuck with each other. I can see us growing old and derelict, the two of us, with the house crumbling around us. Not eccentric, because I don't think the Beales of Grey Gardens were eccentric. If you've seen the Maysles' original documentary on this aunt and cousin of Jacqueline Kennedy Onassis; or the musical by the same name; or the upcoming HBO film with Drew Barrymore and Jessica Lange, you'll see that the Beales were human. Co-dependent as any pair of humans living together doing their best. Each with defects and assets. But no more eccentric than anyone else growing old alone in relative poverty.

I can see that happening to us.

No one will make a musical about it. No one will be happy about it, although Diver probably wouldn't mind.

It's not what I envisioned for my life.

Stand guard

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There are days when I feel absolutely unable to be an auti-mom.

Take today. Please.

Already mucking about in the unstructured waters of spring break, I had to break to Diver news that would disappoint him. His special volunteer-gig at the Air Guard Museum was being curtailed. Not eliminated, but curtailed. Last year, we convinced the Director to waive the volunteer's minimum age requirement, and Diver spent whole days with the guys at the Museum. This year, they requested that he work a set two-hour shift at a particular aircraft.

Still a special privilege for any 12-year-old, let alone one with autism. But for Diver, whose heart and AS mind were set on a full day every Saturday, it was crushing. He wept, he wailed, he railed. He broke legos, and yelled at me for not trying harder to change the rules.

Poor, poor self-pitying me broke into tears at his misery and rage, my lousy single-mom birthday, and my inability to be strong and imperturbable. Meanwhile, Diver was searching for loopholes: "Let's say we forgot what time to come. Let's get there when the museum opens and they can't turn us away."

Make a list of my shortcomings and his and I'll be we'll have a complete set.

But I am who I'm stuck with. I gritted my teeth and said, "Diver, I get sad when you're sad. But disappointment is part of life. We have to deal with it. Show them how competent you are and maybe they'll extend your hours. We are not going early. We are abiding by the rules. We'll leave at 11:15"

"Now! 11:00! 11:10! 11:14!"

I am not discussing it.

At the zoo

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"Remember the good times," I whispered to our departing visitor at the airport.

After a lovely couple of days, the last 24 hours were rocky. When we sat down to seder, Diver announced, "This is wrong. I should be at Auntie L's. That's my routine. I always go to seder at Auntie L's. " And there he stayed stuck. Nothing we did was right. Eventually he stormed off to his room, reappearing after our guest had gone to bed. "I hate having guests," he declared.

He seemed better in the morning, and we set out for a day at the zoo. As we approached, he had a major outbreak of autism: "Are all these cars going to the zoo? All these cars are going to the zoo! It will be too crowded! Where will we park? Park here! Park here! Don't talk. Come on. Come on. Walk faster, walk faster! Two adults and one child. I know I don't look like a child but I'm only 12. Bye. Meet you at the Minnesota Trail."

And he was off. He was on high anxiety all day, complaining about our pace, our jokes, our age, muttering "I hate guests." What did our guest think of all this? What does any outsider think of all this? What do I think of all this?

Today is another day; my birthday, as it happens. And I have to pull out my special yardstick, the one custom made for measuring Diver's growth. Mark #1: Diver gave me a birthday gift.

Mark #2: The gift (a Swiffer Wet-Jet) was exactly what I wanted. Mark #3: He paid for it with his own money. Mark #4: Keeping his impulsivity in check, he kept it under his bed until today.

So I got a lot more than a mop.

Break, broke, better

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Despite planning and prep ("How do we help a guest be comfortable? Here are the plans for the week.") the start of spring break was rocky. Diver announced he could not go to the airport to pick up Cousin Bill because, in his words, "I only go to the airport to fly to Camp Kodiak." Even when I explained he did not have to go inside, he said a trip to the airport was all he could do for one day and if he went to the airport, he'd have to spend the day at home.

So much for my plans for airport pickup, lunch at Micky's Diner, and an afternoon at the Minnesota History Center.

I picked up Bill and when we returned to the house, a calm, cordial Diver was sitting on the couch with the dog and cat, both of whom he introduced to Bill. After clever Bill asked Diver his opinion on the new Defense Department Budget, they chatted amiably and Diver showed Bill his room. We went out to lunch, walked along the lake, and visited a historical depot. On the way home, we stopped at HobbyTown where Bill bought a model. They spent a companionable couple of hours building, chatting, enjoying each others company. After which, they biked to Dairy Queen. I followed with the dog and we hung out by the creek.

What a great day; far better than Mickey's and the history center. It's what I have been craving most; loving family that accepts us and even better, enjoys us.

Just the facts

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So Diver and I are driving to the library and outside we see.....

Flashing lights!

Fire trucks!

Police cars!

Ambulances!

Barricades!

While I reroute the car around the barricades into the parking lot of the mall across the street, I try to determine if the library is still open. Diver, meanwhile, is hyperventilating, "Mom, just park! Park!"

"Diver, please calm down, I'm doing my best," I faux-calmly state, as I pull into a parking space.

"Mom, I have autism!" he blurts to my face before jumping out of the car and rushing to check out the action.

Point taken.

And he's doing his best.

Spring Break

Two words that strike fear into the heart of an auti-mom.

We say, "If it ain't broke, don't fix it".  

Spring's not broken.  By this time in the school year, most of our kiddos have a routine down pat. Then blammo -  it is broken.  Call this week "Routine Break", 'cause that's what gets broken, our routine.  The four walls and floor of our existence.

We'll have an out-of-town visitor for three days, and I plan to fill those days with touristy, museum-going activities.  But am I nervous?  You bet.

Jump the Snark

I found this fascinating quote today:

Today's scary headline, "Scientists find 'baffling' link between autism and vinyl floors"Sent me running back in time to my son's room in 1996. Did we have vinyl? When was the Pergo installed? Does it matter now? Did it matter then?Probably not, says Dr. Phillip Landrigan, director of the Children's Environmental Health Center at Mount Sinai School of Medicine. Landrigan has "no doubt that environmental exposures are involved in causation of autism," but he suspects the most significant exposures occur not in childhood, but early in pregnancy, "when the basic architecture of the brain is still being established."Susan Berkson, Jump the Snark, Mar 2009

You should read the whole article.