This summer is off to an odd start. Usually there are no more than a few days between the end of school and the start of Alex’s summer school. (Last two years, he went to day camp, and that started almost immediately after school: no lag.) This year there is a solid week off between the two.

Photo courtesy of crabchick (flickr.com)

Ordinarily I’d be harried and a bit peeved: I’d be running after Alex and Ned while Jeff slaved away at his job. But this year everything’s been turned upside down. Jeff is at home; I’m at work (at least this week). And while I’ve left in the mornings saying cheerily, “Have a good day!” and coming home to a meal I didn’t shop for or cook (which is nice), I miss my boys. I miss long trips to Ikea and Target (two ways we burn a lot of hours) or the zoo or the aquarium. I miss meal-planning. I even miss grocery-shopping.

On the other hand it’s been a nice break from autism. Alex has been asserting himself more than usual this week, and I haven’t had to cope. And on the other hand… I miss my boys. All three of them.

An item in the inbox has made me think of Alex’s future worklife: CareerAdvice, “Succeeding at Work With Autism.”

Citing such luminaries as Temple Grandin, the piece discusses how the workworld needs to prepare for an influx of autistic adults as those “1 in every 150″ mature, and what skills the autistic possess to handle a job. “Jobs requiring specific, concrete tasks such as library cataloging, equipment or graphic design, data gathering and mathematical modeling are well-suited to autistics,” reads the piece. “They do less well in positions requiring complex social skills, such as management. And jobs that depend on multi-tasking, such as being a restaurant hostess or receptionist who must simultaneously answer phones and type, are also poorly suited to autistics.”

Image: sxc.hu

Library cataloging? Definitely, as long as you teach Alex not to take the dust jackets off the books first. Equipment or graphic design? Not for him in my opinion, but that’s due more to his inate abilities and talents than due to autism. Data gathering and mathematical modeling? Maybe the first; I’m not sure what the second is, so I guess I’m not suited to it, either.

Surely there will be somebody who just needs something put in order? Or done over and over? Hell, I’ve had more jobs like that than I can remember.

I can’t imagine Alex, who’s almost 11, holding a job (or voting, or driving a car). He has answered phones, though he’s better at hanging them up in the proper cradle. I wonder if he’ll ever make a reservation, let alone take one. I certainly can’t imagine him managing anyone, unless his job was to direct staffers to Elmo DVDs or bags of pretzels.

This isn’t to say he’ll never do them. But like so much of being the parent of an autistic child and like so much of what I have to continuously fight, it is to say I can’t now imagine him doing them.

It is a Sunday (though I’ve kind of lost track of time, being away from home in California) and Jim and I are off from work, and Charlie from school. So we’re not having our usual rush and worry to get home in time to meet the schoolbus (though Charlie seeming to have more away from home holiday anxiety than ever before has meant there’s been plenty to keep us occupied). As Kajuana Ezell, whose 17-year-old son is autistic and who works as a senior administrative assistant for Prudential Financial, Inc., in Hartford, says about being the working mother of a special needs child:

“We want a career just like everyone……It’s just that our 100 percent may not be the standard 8 to 5. Companies that can’t give the flexibility, or allow us career opportunities, companies that aren’t open to change, we can’t work there.”

Today’s Boston Globe notes that some companies—-who’ve started to cover more services and therapies for those with disabilities—have been offering financial planning and parenting forums (via websites and conference calls, as well as live seminars) about special needs children.

Lost talent is one risk for inflexible companies. In nearly a quarter of families caring for children with special needs, one or both parents wind up reducing their work hours or quitting their jobs, according to government surveys.

One challenge employers face in responding is the spectrum of different conditions in the special needs community, from fragile health to behavioral disorders. As is often the case in the work-life arena, one size does not fit all. That’s why assessing employee needs regularly, and tailoring supports accordingly, is crucial.

I have to second Ezell’s point that about working 100 percent, just not in that “standard 8 to 5.” Parents of special needs kids talk about having to be “on” 24/7, and that can mean that we know how to be really flexible about getting things done, 24/7, too.

Yesterday I wrote about 16-year-old Collin Driscoll’s Hire the Brain business—–in Maryland, 22-year-old Andrew Pegg of Frostburg owns Andilla Designs & Graphics, which personalizes gifts and adversing products. As noted in today’s Cumberland Times-News, Pegg, who is autistic, “has not spoken a single word since he was 2 years old.” He was recently awarded the Personal Achievement Award from the Maryland Division of Rehabilitation Services and the Maryland Rehabilitation Association. Pegg receives assistance from his family, counselor, and Derrick Swandol, a job coach from Spectrum, a local non-profit agency.

I know it’s a long road ahead to figuring out a job for Charlie and supporting him in it. Hearing about Hire the Brain and Andilla Designs & Graphics reminds me that, there’s more possibilities out there than might be thought.

An article in the December Pediatrics examines the health care experiences of families with autistic children in the US. Researchers looked at a nationally representative 2005-06 survey of nearly 40,000 children with special health care needs; the children’s needs were “physical and mental,” and required medical care that was more than usual, yesterday’s Associated Press (via AZ Central) reports. 2,088 children of those children had autism.

The article is entitled A National Profile of the Health Care Experiences and Family Impact of Autism Spectrum Disorder Among Children in the United States, 2005–2006, by Michael D. Kogan, Bonnie B. Strickland, Stephen J. Blumberg, Gopal K. Singh, James M. Perrin, Peter C. van Dyck. The Associated Press notes that

Compared with parents whose youngsters have chronic health care needs but not autism, those with autistic children are three times more likely to have to quit their jobs or reduce work hours to care for their kids. They pay more for their kids’ health needs, spend more time providing or arranging for that care, and are more likely to have money difficulties, the study found.

Jacquie Mace, the mother of a 12-year-old autistic son, Austin, is quoted as saying that she spends “‘easily $15,000 to $20,000 out of pocket’” for her son; she’s still “working to pay off a $7,000 bill” for dental work for Austin, who required sedation and hospitalization as he is not able to sit in the dentist’s chair.

The topic of the “financial strain” on families to take care of an autistic child or relative is frequently noted, and perhaps even more in a time of economic uncertainty. A 2006 book, Understanding Autism: From Basic Neuroscience to Treatment by Michael Ganz, Adjunct Assistant Professor of Society, Human Development, and Health at the Harvard School of Public Health, estimated that it costs $32 million to take care of an autistic person over the course of her or his lifetime; some $29,000 plus for “direct medical costs, such as physician and outpatient services, prescription medication, and behavioral therapies” for an autistic person per year; some $38,000 to $43,000 for “direct non-medical costs, such as special education, camps, and child care” per year.

Those are big, and scary numbers. We’ve certainly spent a lot on Charlie’s education and medical needs. The dentist who Charlie’s grown familiar with is not covered by our insurance plan. When Charlie was younger, he did a lot of in-home ABA, verbal behavior, and speech therapy and we’ve always paid babysitters extra. And then there’s the lawyer, and more, and the reality that the jobs that Charlie will work at when he’s older are most likely not going to be high-paying.

And yet: If Charlie had not been autistic, I suspect there’d still have been plenty of “costs,” from childcare to camp to college to who knows what. According to 2007 USDA figures on Expeditures on Children by Families, families spend almost $300,000 from when a child is born to when he or she turns 17.

Talk about costs, while inevitable, can veer into talking about the “burden” of taking care of a disabled child, of a child who has “extra” needs and who may need care and support for much longer than a child who’s not disabled. While we’ve had our full share of difficult moments in trying to do our best by Charlie, taking care of him’s no burden. Sure we’ve had to give some things up, but the gains continue to outweigh any losses. We’ve gained much much more than we’ve ever spent, in dollars or in energy, in being Charlie’s parents—-life with Charlie is, simply, priceless.

McDonalds. Burger King.

They’re the competition.

Not against Guardians of Healthy (and Happy) Meals.

They’re competition for staff—for workers—for disabled adults who need support in their living, work, and other arrangements.

And, if you cook burgers and fill drinks at a fast-food restaurant, you don’t need the sort of training—which can be extensive—that can be called for in assisting some disabled adults.

Emily Homer of VOCA of Maryland D.C. made this point at last week’s IACC meeting and it sobered the atmosphere in the room up. She noted that, if Americans won’t take these kinds of jobs for those wages, it’s likely that people will turn to immigrants to fill the positions—-and I thought about how at least half of the bus drivers that Charlie has had are (usually women) from Latin America, Pakistan, or Russia; about how both my 104-year-old grandmother and my in-laws have live-in workers who are from other countries. (My grandmother only speaks Cantonese and someone who can speak her dialect is essential; my in-laws, and the rotation of nurses who live full-time with them, have had more of an adjustment to make.)

Teaching, spending time with Charlie, sitting through unhappy moments, running really fast down a hill on a cold November afternoon together, standing beside him to practice using a calculator: How to spread the word that doing these are worth it, and then some?

Six deep-sea divers have been enlisted by the city of New York to repair a valve at the bottom of a 700-foot shaft in Dutchess County, yesterday New York Times reports. The shaft is located in the Rondout-West Branch tunnel, which is 45 miles long, 13.5 feet wide, up to 1,200 feet below ground” and which brings half of the water supply to New York city from reservoirs in the Catskill Mountains. For more than a month, the six divers have to live

in a sealed 24-foot tubular pressurized tank complete with showers, a television and a Nerf basketball hoop, breathing air that is 97.5 percent helium and 2.5 percent oxygen, so their high-pitched squeals are all but unintelligible. They leave the tank only to transfer to a diving bell that is lowered 70 stories into the earth, where they work 12-hour shifts, with each man taking a four-hour turn hacking away at concrete to expose the valve.

And more about how the divers work:

Three divers at a time climb into the steel bell, an orb that is lowered down the shaft for 20 minutes to reach the pumping equipment in the tunnel. The bell is tethered to a bundle of cables carrying air, communication lines, electricity and water. Each diver works for four hours and rests underwater for eight before returning to the tank at the surface, where 32 more employees of Global Diving and Salvage, the Seattle company running the project, pass meals, clothes and books through an air lock.

In the saturation control room, Patrick Boyd, a life-support technician, monitors the divers’ air on a panel of screens, one of which reads 2.26 percent, for the amount of oxygen. While underwater, divers often get more oxygen in their mixture to keep them alert. John Lapeyrouse, a dive supervisor who is one of the few who can understand the helium-riddled voices, one of the side effects of what is called “saturation diving,” talked to Mr. McAfee as he worked the other day.

Apparently, the divers can ” request whatever food they like, including steak and fresh salads” but because “the air pressure in the tank dulls the taste buds,” they have to add a lot of “Tabasco, salsa and jalapenos.” And when their work is done, they must “remain in the tank for a week to gradually wean themselves off helium.” Says Robert Onesti, who’s running the project for Global Diving.

“It’s not for everybody. It’s heavy construction work, and it’s deep.”

You can say that again: I’ve come to love swimming thanks to Charlie, but dislike going underwater. Charlie, on the other hand, seems to thrive on being in deep water and, indeed, being under it. Often when we swim at the YMCA pool, he positions himself just where the water is almost over his head, and crouches down under and then propels himself out, and then ducks down under, jumps up out—-repeat, repeat, repeat.

Before he goes to sleep, Charlie always wraps his feet and legs tightly in at least two fleece blankets: Deep pressure seems not merely comforting, but essential, to his system. I’ve said it before, but I don’t know what he, or we, might have done in the past before the invention of polarfleece. And I’ve given up getting potentially scratchy sweaters for Charlie and shirts with stiff cuffs and collars: If he needs to wear those when he’s older for special occasions, he and we can deal.

Who knows but Charlie might, indeed, like scuba diving (I wouldn’t be the one going under with him, that’s for sure)—being under so much water— living underwater for a couple of weeks in a pressurized chamber might (who knows, again) appeal to him.

There’s something out there that any of us, with our diverse talents, can do, even if you have to go to the bottom of the ocean to find it.

If you weren’t able to listen in to yesterday’s meeting of the IACC meeting, this is a brief summary:

In the morning, the committee members reviewed the draft of the Strategic Plan and “wordsmithed” various additions and revisions suggested by various members of the IACC. These revisions included:

• the use of “may” or “can” in regard to describing the effects of Early Intervention
• mention of “comorbid” and “co-occurring” (medical) conditions
• a lengthy discussion about vaccines and about what science and evidence there is to refute or support a link (it was decided to include the statement “the weight of the available evidence does not support a link between autism and vaccines”—more details about this are below)

Much more of the draft of the Strategic Plan remains to be reviewed and there was talk about the committee reconvening in December to finish reviewing the revisions.

Paula Durbin-Westby of the Autistic Self-Advocacy Network (ASAN) gave a well-received presentation on the need for ethics in autism research. There’s a need for research on the strengths of autistic individuals, she said, and on the positive aspects of difference, and it’s necessary that autistic individuals be fully represented on the IACC.

In the afternoon, there were detailed presentations on Medicare and Medicaid and on waivers (prompting the Chair of the IACC to note that these systems are as or even more complex that various topics in biochemistry); on the pressing need to focus on adult issues (will the employment rate for autistic persons be better in the future?, Dr. Cathy Pratt asked); on the waivers and other programs in Pennsylvania’s Bureau of Autism Services; and on the Autism Spectrum Disorder Pilot Program in Connecticut.

Pamela Beck spoke about her 24-year-old son Brandon Beck and the self-direction model. The Executive Directors of two agencies providing services and supports for adults in California (Dr. Jeffrey L. Strully of Jay Nolan Community Services) and in Maryland (Ms. Emily Homer of VOCA of Maryland D.C.) described the realities and successes of their programs, and of the intense need for staff: What are traits of staff who are really good at supporting people?

After comments from six members of the public, the meeting was adjourned.

There’s more to note—-will end for now with a quote from Lee Grossman, President and CEO of the Autism Society of America:

“”it’s what we hear the community is asking the most for—lifespan services.”"

As I note regularly here, finding the right school and teachers for Charlie, and making sure the education he’s receiving is appropriate, challenging, tailored to his needs, are our constant concern. ABC News visits the Community School in Decatur, Georgia; the school was the subject of a recent article in the New York Times magazine. The school doesn’t seem quite suited to what Charlie might need, but the focus on educating older—adolescent, teenaged—autistic students really interests me. Sometimes it seems the last time that most of us felt sort of confident that we had an idea about the right sort of educational setting and programming for Charlie was when he was preschool age—–elementary and now middle school remain territory for which there’s only a very rough map.

Learning about a career event in New Jersey that was attended by autistic students and other disabled students turns my mind to even more concerns. The event was held at Novartis Pharmaceuticals Corp. in East Hanover in honor of national Disability Mentoring Day. There were 17 other national sponsors present and 50 New Jersey companies at the event, which was overseen by the American Association of People with Disabilities (AAPD) and, within New Jersey, by Allies, Inc., which advocates for people with disabilities and their families.

Yeah, more to think about—-more new terrain to step into, after I take a really deep breath.

What a week—–I guess that is kind of an understatement. There was a new, and frustratingly improbable theory of autism causation: Rain. The Times Online reminds us that, as has often been said, a correlation does not mean you’ve got a cause and notes that there’s indeed doubt as to “whether the paper deserved to be published and reported.” The line of reasoning followed by the paper’s author, Michael Waldman of the Johnson School at Cornell University is that living in a wetter climate leads children to stay inside more, and to be exposed to less sunlight and so produce less Vitamin D, and to spend more time on indoor activities such as watching TV—and to become autisitic.

Theorizing that TV might cause autism was the topic of an earlier paper by Prof. Waldman that relied as much on correlations and associations. I wrote to Prof. Waldman about his TV-autism theory back in October of 2006. The TV theory made especially little sense in our household because we don’t have a TV and, when we did, Charlie was not one to watch it, beyond certain favorite videos. Indeed, Charlie’s preferred activity is to be outside, pacing or roaming, preferably on a day with a clear blue sky and lots of sunshine. He is, though, pretty tolerant of rain and when it’s not too heavy—misting—-he doesn’t seem to care at all. This is obviously a correlation, but I’d say he’s more focused and calmed and at ease for being outside (mist or rain).

Anyways, as we have no TV, we weren’t able to sit in front of it to watch the results of the US Presidential election pour in (I did not mean that as a pun) on Tuesday night. Jim went to the gym and watched TV there and I flitted around between every major news website I could think of; Charlie was sound asleep, after a good day at school, a log walk (in misty conditions), and a potentially disappointing visit to the grocery store because they’d lost their power and almost all refrigerated and frozen items had had to be tossed, and Charlie was unable to find the usual items (vegetarian egg rolls and mini carrots, among others) that he favors.

You know what happened in the election, and then before you know it there’s been a brouhaha about the suggestion that Robert F. Kennedy, Jr., might be considered to head the EPA—-seems not a week can go by without a certain theory of autism causation pushing its way into the public discussion (and onto this blog). Turning to the topic I prefer to devote my energies to (despite what may seem to be the case), it seems that Colin Powell has been mentioned as a possible education secretary.

On which note—-it’s the annual convention for the New Jersey Education Association and Charlie (a student in NJ’s public schools for most of the past 7 years) has had Thursday and Friday off (hence a much appreciated grandparents visit). And while preoccupied with everything previously noted in this post, guiding Charlie (who made his Monday lunch after school on Wednesday) through a smoother, or reasonably smooth, long weekend has been the main business around here. He’s spent a fair amount of time shopping for new pants (this growth spurt thing just won’t let off), hanging with my parents and using an old computer. I took him for a long swim on Thursday night, Jim did a 12-mile biker ride, and we all went out for Spanish food afterwards.

Correlation between all that and a quite peaceful easy-feeling boy?

If you choose to see it that way…………..