“I can’t believe,” said Jill last night, ”that in a month the kids will go off to school in the morning, and then-”

Yes? Raunchy day-long fun like we used to have?

“-I won’t have the house to myself,” she said.

At 11:44 a.m. last Wednesday, my phone rang and my boss asked me to a conference room. In there I found him in front of a yellow legal pad scribbled with numbers, and next to him a woman I did not know.

“Jeff,” he said, ”do you know ——? From HR?” The next 20 minutes constituted a scene staged across the country, in near-record numbers, every working day. Last day at my job, and my last day still working to receive insurance benefits, is 5/22. Benefits and several and such will continue for a while. Then unemployment and COBRA — with its attendant lessened pinch from the Stimulus plan — will continue.

Alex’s autism will continue longer. I actually dread being home for months alone with Jill during the day (ha ha — sort of) more than I dread the extra time I might have to spend caring for Alex. In fact, a few extra hours during the week with the boys would be welcome before they become teenagers and hate me.

“You’re very calm about this,” my former (also recently laid off) boss said to me on the phone this morning, “and that worries me.”

Me too. I’m usually jubilant when I leave a job. Now I just have this low humming dread. Alex has no immediate medical needs; we’re even trying to get him off Topomax. Years of freelance writing and marketing books have also conditioned me to stuff envelopes against the enormous odds, but the odds these days of getting a full-time job seem beyond enormous.

Why not jubilant? The last time I hit the employment silk, in January of 1998, there was no Alex. Now there is. This crisis has at last trickled down to me, a low-paid publishing professional, and I have no doubt it’ll continue through 2009 to trickle down to the agencies that provide Alex’s services. Not to mention that it’s good to have insurance and a steady income when your child is autistic. It just quiets the hum.

A Google search for “parents,” “laid off” and “autism” turned up little, but you can check into autism meet-up groups for your city at http://autism.meetup.com/cities/us/. I bet you won’t be in a group long before you run into another member who’s been canned.

Image: bestrecessionever.com

“We fear for Alex as he grows up and maybe comes to depend too heavily on a system that was built when there was a lot more money around. Is there a reason to suppose that a money shortage is going to abate just because Alex is closer to 21 years old than he used to be?”

I wrote this in my second book. For a long time, I thought I was the only one thinking this way. Then I ran across the recent piece by Linda Davis, who in addition to being the author of Charles Addams: A Cartoonist’s Life, is president of the nonprofit SAGE Crossing Foundation, which was formed to create a farmstead for autistic adults. David and her husband wrote what should become a classic piece to every parent who fears for their growing special-needs child.

“What coming social expenditure will cost more than a third of this year’s budget for the Department of Health and Human Services and be larger than the entire current budget of the Energy Department?” the authors posed. “Answer: The bill for the tide of autistic children entering adulthood over the next 15 years, an estimated $27 billion annually.”

Image: artnet.com

Read this thing (available on site, among others, at http://www.concordmonitor.com/apps/pbcs.dll/article?AID=/20090407/OPINION/904070328). Among the points: the number of autistic children expected to need extensive adult services by 2023 is roughly equal to the population of Minneapolis; most of these cognitively impaired citizens don’t vote, can’t live alone, or can’t work in public places; and, perhaps most critical, “the wrecking ball swinging at all levels of social services” may alter what we assumed was the standard care in their future.

I grew up thinking that if you’re sick or impaired, someone will take care of you. For years, not being sick or impaired, I assumed it’d be the government (my parents loved FDR). After Alex, I assumed it’d be one of the agencies in the sub-strata of support that seems to have mushroomed below the federal level.

A few years ago, though, I began wondering deeply and often what budget will be left unaxed to help Alex the young adult. I live in a city, and as I passed the doorways and the park benches, not looking at the men living there, I began to wonder more.

“I understand that no one wants to look at a child and imagine the clunky, in-your-face adult he or she will become,” Davis writes, wondering “who will love or at least protect (her 22-year-old son) when he ends up in a group home run by an underpaid, overworked staff.”

Jill tells me, when I mention my fears for Alex’s fate, that she’s the one person on earth - Alex’s mother - to whom I can’t voice this wonder. And I can’t, and then I feel lousy when I do. But somebody should start wondering, and soon.

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.

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

You could call 2008 a year of autism legislation, with bills proposed and (in Arizona, Connecticut, Florida, Louisiana, Pennsylvania, South Carolina and Texas) passed for insurance coverage for children with autism (of varying ages; for instance, Texas’ House Bill 1919 calls for coverage for autistic children between two and six; efforts are being made to pass House Bill 451, to require certain insurance plans coverage to autistic individuals up to age 18). Via the National Council of State Legislatures, you can access the NCSL Autism Legislation Database, which provides information about legislation in different states. Autism Bulletin also has a map of autism legislation, and here are various posts I’ve written on legislation concerning autism and disabilities. Military families are lobbying to get treatment for their autistic children under the extended care arm of the federal healthcare program TRICARE, as noted in today’s US News and World Report.

But what besides health insurance for autism treatment (which tends to be for Applied Behavior Analysis, or ABA), would you like to see in autism legislation?

This week, the Autistic Self-Advocacy Network has been invited to give input to the Office of President-elect Obama at two meetings relating to disability policy. The first meeting will focus specifically on autism policy issues and the second on health care policy from the disability perspective. ASAN and other disability organizations will be present, and you can email ASAN’s president, Ari Ne’eman, with your concerns and ideas.

Over at Change.org’s Ideas for Change for America page, the top-ranked idea in the education category is about the “Autism Reform Act of 2009.” This proposed Act was posted by Michael Robinson of Wahiawa, HI and from its first sentence, suggests an air of more than emergency:

As a country we have watched Autism Spectrum Disorders grow in a devastating number. Over the last decade it has spiraled so quickly out of control that:

with the 12 points of the “Autism Reform Act” following. Lisa Jo Rudy has offered commentary on this act over at About.com and I’m borrowing her format, quoting the text of the Act and including my comments in italics:

1.) There must not just be one person but an ENTIRE U.S. OFFICE OF COMPLIANCE for Educating Children with Autism. Why “compliance” in particular for this office? Where has (has it?) such an office ever been mentioned before?

2.) The use of Time Out Rooms, Corporal punishments, Restraints, and the high amount of Abuse must be monitored with severe penalties to states and fines or conviction of those that break such a REFORM Law. Ok, but I’d suggest that the use of these—certainly corporal punishment and restraints—should not be allowed at all. There are certainly too many cases of abuse, physical and otherwise, that get reported involving autistic persons and much more needs to be done to promote and train staff in other practices.

3.) School Districts/States must each have an ” Office of Autism Education Compliance or be subject to loss of Federal Funding. Again, “compliance” needs to be explained. And what is meant by “autism education”?

4.) Due Process Hearing Officers must NOT be employees of the state and shall be employed by the Federal Government ONLY. Lisa expressed some puzzlement at this. I’m also wondering at the emphasis in this Act on who is employed by whom and, again, on compliance.

5.) Insurance companies MUST provide the Early Interventions such as ABA Discreet [sic] Trial at no cost to parents. As noted above, while early intervention is needed, autistic children often need therapies and services for many more years. Further, ABA/Discrete Trial Teaching is only one type of teaching for autistic individuals and others also need to be considered, according to each individual’s needs.

6.) Protection and Advocacy MUST be funded properly to allow parents that need help get it without any more then a 15 day waiting period. Certainly parents with a just-diagnosed child or with a child having many difficulties at school need their concerns addressed as quickly as possible. Who would such “protection” and “advocacy” come from?

7.) Grants for research, education, and non profit organizations for those with Autism Spectrum Disorders must be made in the amount of 5 billion dollars.Why this particular figure of mondy and what kinds of grants are being called for here>

8.) Relief for parents who have paid out of pocket to educate their children must be made swiftly with 100% reimbursement. Who is this reimubursement to come from and on what grounds? Only for educational services? How much of this “relief” will be compensated? (And there may be some concerns in the wake of stories such as this.)

9.) Behavior Intervention Plans must accompany all Individual Education Plans.My son’s IEPs have always included such Behavior Intervention Plans (BIP)—-parents have the right to ask for such in a child’s IEP, and to make sure that the BIP is created under IDEA regulations.

10.) Insurance companies must make available all resources for children and adults with Autism Spectrum Disorders including but not limited to any items deemed necessary by the physician for the treatment of metal toxicities and any other theraputic [sic]orders their physician may order. Interesting to find mention of “metal toxicities” and of biomedical/alternative medicine theories about autism in the Act. Is there an intent to try to have such treatments (which are not supported by the scientific evidence) covered by insurance?

11.) The Autism Reform Act shall consider all Autism Spectrum Disorders including Aspergers. Ok; the possible revisions to the DSM might also be taken into account.

12.) This Reform Act must be ‘open’ for additions as needed and create a 12 parent panel to propose such additions.Definitely seems essential to keep this Act as “live” and “in process” as possible—-why as panel of 12 parents? Who would choose these parents? What about teachers, scientists, and others?

What you think about the “Autism Reform Act”—–again, what do you think legislation about autism should include?

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.

As in, school closures and budget cuts to programs for autistic children.

In Brooklyn, a nationally recognized program for speech and language delayed children, The Little Room, will either be moved from its location in the Brooklyn Heights Montessori School or closed, according to the December 13th New York Times. The Little Room, which has been in operation since 1970, is “one of the most popular and best regarded [preschools for special education students], not just for those enrolled but for dozens of other families who receive evaluations and support services at the school.” Among the factors being cited as reasons for moving or closing The Little Room are the costs incurred from maintaining a small class size (The Little Room’s classes are capped at nine students) and the teacher’s salaries, which are comparable to those of the other teachers at Brooklyn Heights Montessori School.

In South Carolina, budgetary concerns are threatening a program to provide early autism treatment, as noted by yesterday’s Greenville Online:

State Sen. David Thomas said the state Department of Disabilities and Special Needs [DDSN] appears to be “raiding” special programs funded with specific appropriations to protect the core agency from mandated budget cuts, a move he said is a “form of theft” that raises “serious legality questions.”

DDSN officials state otherwise; Thomas says a new audit shows that $9 million of $10.5 million appropriated for the autism program has gone unused or been diverted by DDSN.

A school closing and funding for services promised and then disappearing: We’ve been through both of these experiences, and I’d think that many families have, and that we’ll be hearing more stories. What if your child’s in a public school program with a 1:1 student to teacher ratio and there’s a hiring freeze, and then more people keep moving into the school district because of its reputation for special education?

School boards and state officials need to hear that autistic children need these programs and services, and that there needs to be transparency about how decisions are made, and how funds are allocated. Parents  put in huge efforts to get these programs in place, and our kids make even huger efforts to learn and do what’s asked of them: Closures and cuts shouldn’t just be made without keeping those who they’re going to affect aware and informed, and not in the dark.

In the midst of talk of diagnosis and disability rights, of treatments and of what’s an appropriate education for an autistic student, we took a hands-free cold walk last weekend to see the Christmas tree at Rockefeller Plaza, and passed a wall of snowflakes too.

• Age of Diagnosis and the Apparent Increase in Autism
  A study in the December Archives of Pediatrics and General Medicine examines autism prevalence trends over time in Denmark and states that “the apparent increase in autism in recent years is in part attributable to a decrease over time in the age at diagnosis.
• Recovery Distracts
  How the notion of “recovery from autism” colors—not for the better— parents’ decisions about “treatments” and “therapies” for autism, and also on the popular perception of what autism is.
• Dangerous Ideas About Autism
  From Icad: “Suggesting that parenting a child with a disability is so challenging or stressful that killing these children is somehow understandable or excusable adds to the probability that other parents will kill their children, because sick minds struggling with the impulse to kill can be assisted to go over the edge by social endorsements, which help them to rationalize murder.”
• Overglut of Gluten-free?
  If everyone’s going gluten-free, is a “special diet” really a treatment for autism?
• Human Clinical Trials Underway for Fragile X Drug
  Experimental drugs that are said to “correct” symptoms of Fragile X, Rett Syndrome, and tuberous sclerosis complex are now in early-stage human trials, the MIT Technology Review reports.
• The Daily Commute (Your Child’s)
  How far does your child—or do you—travel to school?
• Letter to OSU President Gordon Gee
  A letter by Melanie Yergeau, a 2nd-year Ph.D. student in English, in response to remarks by President Gee including the statement that “‘It [autism] should not exist.’”
• Older, and Trying to Be Wiser, and Better at Hemming Pants
  I turn 40 and find myself wearing hand-me-ups from a not-yet-adolescent boy
• The Private-Public Dance: What’s Appropriate?
  What’s an “appropriate” education for an autistic child?
• Who’s On the Board?
  No one with autism when it comes to Autism Speaks.
• Arrested: The Charge? Bad Behavior
  Children with autism and other disabilities, and more of them, are “actually getting arrested for having tantrums at school,” Minnesota’s WCCO reports.

Washington’s first private school specifically for autistic children, Wintros Academy, closed its doors last Friday, according to yesterday’s Whidbey News Time Reporter:

Founders of the academy say local school districts are partly to blame after months of failed talks with special education departments. It’s a problem a spokesperson with the state Office of the Superintendent of Public Instruction (OSPI) called “common.”

In order for Wintros to receive state funding, it first needed sponsorship by a school district to be certified as a non-public agency, instead of a private school. But no Whidbey school district would sign on.

“A district would need to extend their liability to the school, which is where problems can start,” Doug Gill of OSPI said.

Wintros Academy has only been in operation since September 2nd of this year. A June 18th Whidbey News Time article described how the school was conceived of in 2005 by Brandi Matros and Charity Winkler, both mothers of autistic children.

Yesterday’s article quotes local special education administrators as claiming that there was no need to send autistic children to an out-of-district private school placement like Wintros Academy:

“We’re saying that we can provide an appropriate education, so we don’t need to pay for anyone to do anything differently,” [Gail Cleveland, Special Education director for the Oak Harbor School District] said.

But a number of parents must have felt that the school district was not providing such an “appropriate education.” A number of “children from North and South Whidbey were soon pulled from the school districts and enrolled in the new program.” This led to more instructors having to be hired at Wintros Academy, and to Winkler going to the special education departments. According to Winkler, “she was never given a candid answer as to why Wintros was denied help from the public school districts.”

Certainly if a public school district is able to provide an “appropriate” education, then parents would send their children to the public school’s programs and accept the placements offered. Certainly there’s been more than a few times over the past couple of years when the school district said their placement was “appropriate” for Charlie, and Jim and I preferred to disagree. It’s been precisely because of disputes over what we thought, versus what the school district though, was “appropriate” for Charlie that we at one point (in November of 2005) took Charlie out of his school classroom until a placement that we thought was appropriate was found (it was a private placement), and that, a few months later, we moved so that Charlie could attend the autism program in a different school district.

A recent article on School Matters on KnoxNews illustrates the nature of such disputes which, I think it can fairly be said, are endemic and no doubt will stay that way, or at least until there’s consensus about what’s appropriate, and what’s not.