Things small and familiar were the gifts that Charlie most liked: A pale blue Mugen Pop Pop, a new copy of a DVD he already has (and that’s gotten so scratched up and smudged that it skips and gets stuck), a case for his Leapster (which we should have gotten a while ago, as Charlie’s dropped his a couple of times). We’d be happy to get him some more elaborate gifts, and have over the years. Iused to spend quite a bit of time choosing toys and then even more time teaching Charlie to play with them (some of the toys are still in closets in our house and in my parents’, shiny and wrapped in plastic to protect them from the dust).

Charlie pretty much seems to lack consumer consciousness. He likes what he likes.

And so, while experiencing the sort of quavering feeling many (most…) of us have been as more words like “dismal” and “downturn” are used along with “economic crisis” and “home sales” and “mortgages” and “banks”—-what will this mean for Charlie’s public school program? he’s quite a ways from looking for a job but won’t it be even harder to find employment for a disabled worker in a challenging economic climate”?—-we’ve also felt that there’s not going to be some totally drastic change in our everyday way of life.

Ever since Charlie was diagnosed, we’ve scrambled to pay for the things he needs, and managed. Corners have been cut (and will be) ,and we’re both feeling very fortunate to have full-time employment. With Charlie’s needs, we’ve long known that some things are just out of the question, and we always have an eye on his future. While we very much hope and intend that Charlie will be able to have a job, it’s highly likely that it’ll be far from high-paying. Certainly, Jim and I are both hoping we can work as long as we can.

Caryn Sullivan writes about a generation of kids accustomed to having more now having to adjust to having less. It’s “stuff” —-electronic iStuff and the like—-that she’s referring to, while she also notes that one of her children, who’s autistic and living a “cloistered lifestyle at a remote, old-fashioned school,” gave her a list of 24 items that he’d like. As Sullivan writes in yesterday’s St. Paul Pioneer Press, she’s readying herself to “try to explain the financial facts of life without bursting his bubble this [Christmas] morning.”

I’d like to know how this went. Having been living with what people think is less, but I’ve learned is more —a son who’s disabled, who’s autistic—I think it’s possible to keep managing on less and little, and still come out feeling like you’ve got much, much more than you’d have ever bargained for.

Discussion continues about autism legislation, and is going to continue here in the US under a new administration. One piece of federal autism legislation that has been passed here is the 2006 Combating Autism Act (CAA), under which the Interagency Autism Coordinating Committee (IACC) was charged to create a Strategic Plan for research in autism spectrum disorders. (Regarding how the CAA was voted on and passed, and on its unfortunate name, go here.)

Over the past year-plus, the IACC has been developing a draft of the Strategic Plan. This draft was reviewed at the IACC’s November 21st meeting and, as review of the plan was not completed, the IACC met again on December 12th to continue review of the draft Strategic Plan and, per the agenda, to discuss cost estimates.

The IACC will be meeting next on January 14th (and go here for how to listen in virtually, via the web or conference call). This meeting will be to continue the review of the draft Strategic Plan, and to make budget recommendations and finalize the plan.  There’s a report about the December 12th meeting on the Autism Speaks website which notes that 38 research initiatives were approved, and that the budget for these will exceed the amounts authorized by the CAA in a certain period of years. The IACC Strategic Plan recommends that more than $1 billion be spent on research objectives.

I was able to listen to some but not to all of the December 12th meeting. Autism Speaks lists 10 of the 38 research objectives, which include (with my commentary on some initiatives and some emphases in italics)

Develop at least one new diagnostic instrument (briefer, less time intensive); [Interesting I think, recalling the two-day-plus process---ordeal---of having Charlie evaluated by a diagnostic team in Minneapolis; might something get missed, though, if the process is hurried up too much?]

Validate a panel of biomarkers that separately, or in combination of behavioral measures, accurately identify, one or more subtypes of children at risk for developing ASD; [At the November 21st and December 12th meetings, some members of the IACC brought up the need for such "biomarkers" repeatedly, as well as the notion of "subtypes" of children who be "at risk" or susceptible to being diagnosed with autism.]

Establish an international network of brain and other tissue acquisition sites with standardized protocols;

Complete a large-scale, multi-disciplinary, collaborative project that longitudinally and comprehensively examines how the biological, clinical and developmental profiles of children, youths and adults with ASD change over time compared to typically developing individuals by 2020;

Coordinate and implement the inclusion of approximately 20,000 subjects for genome-wide association studies, as well as a sample of 1,200 sequencing studies to examine more than 50 candidate genes by 2011;

Study the effect of vaccines, vaccine components and multiple vaccine administration in autism causation and severity through a variety of approaches including cell and animal studies and understand whether and how certain subpopulations in humans may be more susceptible to adverse effects of vaccines; [Again, the mention of "subtypes" of individuals with certain susceptibilities, such as the so-to-speak "subpopulation of mitochondrial autism."]

Determine design and feasibility of addressing different health outcomes in vaccinated, unvaccinated and alternatively-vaccinated groups; [Yes, another mention of vaccines; this study being the long-called for study of various "health outcomes" in vaccinated vs. unvaccinated, and not "alternatively-vaccinated groups"---those vaccinated under an "alternate schedule"?]

Conduct a multi-site study of the subsequent pregnancies of 1000 women with a child with ASD to assess the impact of environmental factors by 2014; [Sounds like the UC Davis M.I.N.D. Institute MARBLES study.]

Standardize and validate at least 20 robust model systems (cellular and/or animal) that replicate features of ASD and will allow identification of specific molecular targets or neural circuits amenable to existing or new interventions; [But are "features of ASD" as seen in an animal (such as a mouse) model equivalent to features of ASD in human?]

Test the efficacy of 11 evidence-based services for people with ASD in community settings by 2015.[Would like to know about the what and where of these.]

And if the full $1 billion worth of research initiatives are not funded, what studies might be the first to be tabled…………….

On today’s Good Morning America, a story of giving and compassion—-something we could use more of, and not just at this time of year: When layoffs were announced at the Governor’s School of the Arts and Humanities in Greenville, S.C., Ralph Hanahan—a state employee for 20 years—voluntarily asked to “take the hit,” so his fellow worker, Mike Camp, could keep his job. Camp has four children aged 6 to 10, the youngest of whom has “severe autism”:

The Camps already have dealt with the great stress brought on by the treatment and therapy for Aaron’s condition and, at times, their medicals bill are too much to bear.

“Ralph [Hanahan] definitely had a soft spot in his heart for Aaron,” Lorrie Camp said.

Her husband said, “He honored that by putting himself in my place and taking the layoff that should’ve been mine.”

Hanrahan, who is currently looking for a job, collects $326 in unemployment. Camp’s mother, Martha Pool, wrote to GMA to tell them about Hanrahan as the family’s “‘Christmas angel.’”

Over the years, it’s happened more than once, and most unexpectedly, that someone has helped us through a tough spot, has been there to help Charlie when we were feeling pretty alone, and (yes, call me a sentimental optimist) I still think there are more Ralph Hanahans out there than we might think.

h/t to Bonnie

Plans to construct a new 27,000 school for autistic children in Milford, Connecticut, have been put on hold after Planning and Zoning Board members questioned the design and material of the proposed school, today’s New Haven Register reports:

PZB Chairwoman Jean Cervin said the board specifically did not like the “rectangular box” appearance of the proposed school, and the metal roof. She also said the playscape is proposed for the front yard, and some members felt it was too close to the road, and should be placed at the rear of the site.

Cervin said PZB members do not object to the proposed 30,000-square-foot school, which includes a gymnasium.

“They do a very necessary piece of education for autistic children,” Cervin said.

Suzanne Letso, co-founder and chief executive officer of the Connecticut Center for Child Development, is concerned about the proposed changes increasing the price of building the school. Currently, the school has 45 students in one building and rents additional space for seven students from a church. Fundraising for the new school has been going on for seven years.

Notably, what’s missing from the discussion is what sort of design and classroom environment would be best for autistic students, but since when has that ever been the priority…….

An Arizona man, Raymond G. Parenteau, was arrested on Wednesday on the charges of allegedly defrauding the Prescott Unified School District of almost $20,000, today’s Daily Courier reports. Parenteau had contracted with the school district for $55 an hour to homeschool his 12-year-old autistic son; he is alleged to have hired a certified special education instructor to work with his son for $25 an hour, and to have kept $30 for himself:

During a nine-month period starting in January 2007, Parenteau allegedly charged the school district $36,258. He paid the special education assistant only $16,262 of the money he received from PUSD. Parenteau also allegedly billed the school district for hours not used for teaching his son and created false invoices.

Says Parenteau, who has also advocated on behalf of several parents of autistic children during the past few months:

“The charges are unfounded. I will end up vindicated………This gets PUSD what it wanted. I am not allowed to help other students. As a condition of my release on bail, I have to stay away from PUSD.”

Parenteau was charged with felony fraudulent schemes and forgery, and is currently out on bail.

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.

After a couple of years, Charlie is learning the different values of coins and how to count money. A couple of teachers have tried to teach him this over the years and with all manner of methods, from matching to having him “buy” things for a “price” written on a card. The concept seemed to elude him and the fact that we were as likely, if not more likely, to use an ATM card or a credit to pay for something, hardly served to reinforce the concept of what you do with those shiny round metal discs. (Though I should note, Jim always has loose change in his pockets, some of which inevitably ends up on a chair, a table, the rug, the crevices in the car, and there’ve been more than a few times when I’ve eyed a single copper penny placed exactingly along the floorboards: A sign of Charlie and his sense of order.)

When he started middle school, Charlie’s new teacher told us that she had her own method and she was eager to try to teach Charlie. And about two weeks ago, she wrote 53¢ on a piece of paper, and set out some coins, which Charlie proceeded to count out, starting with the dimes and then the three pennies.

I was p-r-e-t-t-y ecstatic.

And then, a few days later, his teacher had some puzzling news: She’d been told to discontinue teaching how to count coins and money, as (so she was told), “everything was going to be ATM cards so there was no need to bother teaching money.”

I have to tell you, I got a sinking feeling in my stomach. I understand that it’s not necessary to teach Charlie to tie a shoe (provided they don’t stop making those Merrell-type slip-on shoes, which are also favored by another member of our household). While we keep working on Charlie’s writing his letters and numbers, if typing is the better way for him to set down words, so be it. And for sure, I rarely have cash on me; so much easier to run my ATM card through the machine at the cashier and not fish for exact change. But it seems not only worthwhile, but essential, to teach Charlie about coins and bills and their values, and about how so many coins and dollars is equivalent to, for example, two jars of pickles and a package of watermelon. Money’s more than just a lines of numbers that increase or decrease.

Charlie has been learning to add single-digit numbers on a calculator and there’s the thought that he might someday learn to keep a ledger and track his expenses. We found him a big-key calculator at Target (for 99¢) and this afternoon he punched in 8 and 2, 2 and 1, 3 and 2 and wrote down the numbers with me guiding his hand—something he couldn’t do a year ago.

Whatever the teacher hears about teaching money, we’ll keep working on it at home, and in stores, to buy train tickets, at vending machines—-out wherever in the world.

Yesterday’s Wisconsin State Journal reports on changes in how the budget for severely developmentally disabled adults in Dane County is allocated, and how these affect individuals and the services they receive:

…….as more clients enter the system, the dollars are being spread thinner, with $76.5 million spent in 2007, the last year for which complete spending is available. On average, each adult client was allotted $49,196 in 2007 for housing, care, job assistance and other needs. Adjusted for inflation, the amount is down nearly $7,000 from seven years earlier.

Less purchasing power means less staff care for each person and even, as parents such as Kathy Karklus, of Madison, fear, a greater risk of injury for the vulnerable population.

Karklus’ son Ryan, 28, suffers from severe seizures and must be sedated and confined to a wheelchair. With the county’s proposed 3 percent average cut for existing clients next year, Ryan could receive fewer dollars, which means Madison Area Rehabilitation Centers receives less money for keeping him as a client.

That cuts into the rehab center’s budget and over time has meant fewer staff members, frozen salaries and reduced hours of care for clients.

It’s noted that Dane County was an “innovator in creating a community-based approach” in the 1970s and 1980s, when developmentally disabled individuals were moved out of institutions. This approach emphasized people living in group homes rather than in institutions and working with a caregiver alone, rather than in teams. However, this very approach has proved to be more expensive and “the county has promoted ‘efficiencies’ to save money, resulting in more situations where four or five people may live together in a duplex.” As the Wisconsin State Journal notes, it is financial needs and an emphasis on tight budgets that are now driving the program, rather than “a philosophical approach, emphasizing individual choice and human dignity.”

I think I know which approach I would prefer for my son: How to make it a practical reality?

I’ve a couple of ideas for posts about topics like prenatal genetic testing, vaccines and more about vaccines, gestation and future health problems and the like but since it’s getting later in the evening (out here on the East Coast) I’m just going to reference an article from no less august a body than the Style section of last Sunday’s New York Times and specifically an article on how the economic crisis is affecting teens whose parents have never been able to say, no, you don’t need more Abercrombie. Given the near-constant talk about the “cost” of raising a special needs and specifically an autistic child, I just wanted to note that Charlie’s never been one for having anything that’s “the latest,” whether it’s clothing, electronics, tsotchkes to hang on his backpack, a particular style of sneaker. He’s easy-going about whatever he wears (not that my mom doesn’t make sure he’s well-attired) and honestly asks for little—ok, some Vietnamese spring rolls and a swim in the ocean but the former is good cheap eats and the latter, well, believe it or not, if you know where to go the ocean is still, indeed, free.

And watching Charlie swim in it beats all the razzle-dazzle fireworks of any gizmo peddled at the mall.

It’s a too familiar story to too many of us: Growing numbers of children diagnosed on the autism spectrum and school districts straining, and groaning, under the need (the onus) to provide appropriate services and educational placements, aides and speech therapists who know how to teach an autistic child and not only run articulation drills, and to educate students with widely varying needs and levels of skills. Inadequate funding for special ed and all the more so as districts facing rising costs and no change in state funding, so that districts have to seek support locally from taxpayers.

Does this sound like something that happened in your school district, and is even happening now?

Yesterday’s Flathead Beacon (Montana) notes that

In Montana, statistics from the state’s Office of Public Instruction show the number of autistic students has swelled from 212 in the 2001-2002 school year to 442 last year – a 52 percent increase in just seven years. The number of autistic students jumped 9 percent between 2006 and 2007 alone.

“Our increase follows the national trend; it’s our fastest growing need,” OPI Superintendent Linda McCulloch said. “I’ve requested funding this year for five autism specialists – one specialist for each mental health region in the state – to assist with needs for the schools.”

The Montana Quality Education Coalition and other education groups have filed a lawsuit against the state and say that the state has failed to come up with a formula for adequate special ed funding.

And due to recent current events in the US, increases in funding for education seem unlikely—one suspects that the same stories will be heard numerous times over.