The Florida legislature has declared the first half of October as Disability History and Awareness Weeks, today’s West Volusia Beacon notes. Indeed, the legislature is said to be “trying to change the negative image, perception and treatment of people with disabilities.” The article highlights programs for disabled students throughout the county, such as Deltona High School’s Multi-VE program.

VE stands for varying exceptionalities. Multi-VE students’ disabilities and challenges include hearing or language impairments, mental handicaps, emotional and behavioral disorders, multiple physical handicaps and disorders all across the autism spectrum.

Located in Building Z on the 92-acre campus, Deltona High School’s Multi-VE program serves more than 50 students, ages 14 through 21. They attend classes to learn to function independently and to acquire skills to help them gain employment after graduation.

At Deltona High School, “VE” really means “victories everywhere,” because students with disabilities are showing they can be successful in and out of the classroom — that they have abilities!

The classrooms and programs recall those in my son’s school district here in New Jersey—-but we could all use more of the “VE” attitude, wherever we are.

It’s said to be something that parents of children with developmental disabilities experience. An article by Amy Basking and Heather Fawcett coins the terms “Empty Nest Envy,” as noted in today’s Orangeville Banner:

While most parents can look forward to children spreading their own wings, there are some who look to the future with trepidation and uncertainty. Not just for themselves, but more importantly for their adult children who have developmental disabilities. These parents, when their children graduate from high school, suddenly find themselves supporting their adult child full-time.

The reality for these parents can be daunting. In the article, the authors talk about how for one family their 28-year-old son remains with them. Despite thinking that he would be living on his own with supports at this age, the reality is that he will probably remain with them “until one of us dies or we’re in crisis.” This couple has little time alone and never the opportunity to holiday away together.

Another mom, who is 60 with a 30-year-old son with autism, is quoted as saying, “When the kids graduate there is nothing but endless applications for funding. I can’t afford to retire. I have no savings. I’ll retire when I drop dead.”

The just-this-week published Easter Seals Living with Autism study reports that more than 80 percent of adults with autism between the ages of 19 and 30 are still living at home and I do wonder what wil happen for Charlie. Sure I think a lot about, advocate for, how to provide more housing for disabled adults, more jobs, more and more and more: But how to turn needs, advocacy, testimony, research, into realities? Into an actual place for Charlie to live when he’s older, with the supports that he’ll need?

Let’s say, I don’t want to have develop empty next envy. But it may well be inevitable.

My son Charlie is, as I’ve noted here, 11 1/2 years old. He’s been attending middle school since September and it hasn’t been easy, and we’ve started to get the feeling that it’s not going to get easier. Charlie is in a self-contained classroom, located in a large middle school in our school district. There are three other boys—all older than him by a year or two, and all shorter than him—a teacher, and four aides in the room. He starts the day with Adapted Physical Education (APE) around 8.30am) and has speech therapy briefly with a speech therapist most days of the week. An occupational therapist sets up programs on specific skills, like writing and washing his face, that he works on throughout the day. He has a really good teacher and behavior consultants regularly visit the classroom. Charlie’s teacher and I email each other daily, sometimes a couple of times a day.

He does all right generally, but, for the past few weeks, he seems to be having one “incident” per day, in which he grabs at someone or throws himself down on the ground or tries to hit his head. Sometimes it happens because his classroom gets very noisy and, with his increased sensitivity to sound, he just can’t take it at some moments. Other times—as when he threw himself down on the sidewalk while on a walk outside last week—it’s less clear.

Charlie’s academic progress has always been slow and painstaking. He’s now writing both his first and last names and can write most letters of the alphabet (s seems to be particularly challenging), counting money, doing single-digit arithmetic with a calculator. Unlike the other boys in his class, Charlie is not interested in watching videos on a break (they have a TV set and headphones) and is minimally interested in the computer. It has been good that more of his schedule has allowed him to get up from his desk, to work on life skills like cooking and laundry: Charlie, as his teacher noted, likes to be busy and occupied, and to get up from his desk.

Sometimes it just feels like everything is working against him this year, though. After years of bus drivers who always greeted him with a “good morning, Charlie!” and a “smile,” and who clucked in sympathy when he was upset and assured me that “he’ll be okay, we all have our bad days” the bus driver this year has been, well, she doesn’t do any of those things. Added to this is the fact that Charlie’s bus arrives over an hour earlier than it did last year. He’s always had a hard time waking up, but this year it’s been compounded by a much earlier wake up time, and a less than warm atmosphere on the bus.

And middle school itself has been something of a brusque new world, after the coziness of Charlie’s classroom last year. As I’ve noted, the physical layout of Charlie’s room includes a low ceiling and no natural light. There’s over a thousand children at the middle school and discipline appears to be a priority, judging by administrators wielding walky talkies and the constant emphasis that “you could hear a pin drop in these hallways” when classes are in session. There’s no more playground and the main colors seem to be (as they were at my junior high in California) brown and beige.

I noted that Charlie, while the youngest in his classroom, is the tallest and, I’d also say, the most muscular and athletic (the result of all that swimming and 8-plus mile bike rides). So when he gets upset, other people react a lot differently than if he were 4 feet tall and a skinny little boy: Charlie’s the same height as some of the aides (none of whom were the aides he had last year, including one young man who was over 6 feet tall and could still give Charlie a piggy back ride a year ago). And I more than suspect, I think I know—that when Charlie is upset, people don’t see a frantic child, overcome by his anxieties and racing thoughts and unable to express himself. They see a 5′ 4″ pre-adolescent who’s really strong, and they step back, and want to look away.

Jim and I anticipated that middle school and adolescence would not be easy for Charlie. We’ve been talking a lot, talking to friends, talking to Charlie’s teacher; we’ve been asking questions, thinking, reflecting on how easy it is to go places with Charlie, from stores to subways to restaurants, and how much he helps us out, doing more and more small chores around the house. We’ve wondered if he’s not been feeling a kind of loss for his old school and classroom and teachers. After all, every day he walks onto the yellow schoolbus so dutifully and I wonder what he thinks as it takes him to the middle school, a group of low-slung brownish buildings, surrounded by grass and set back from the road.

Previously when Charlie transitioned from primary school to intermediate school (he’s not really “in a grade,” and has always been in special ed classrooms), it was really tough. He floundered and finally all but fell apart in classrooms in another New Jersey town and, just under three years ago, we took him out of school in November of 2005, things got so bad. We’re not at that point now (or not yet) but Jim and I have been worrying; it’s been hard to find ourselves potentially back at square one with Charlie’s education, after disrupting every aspect of our lives to move into our current school district. I’m hopeful that we can get ourselves, just muddle, through, a difficult period. While, at home, Charlie’s not always been without anxiety (sometimes he just seems to need to sit in his room with his favorite things nearby; he tells me “bye Mom”—-sign of typical teenagerism?), things have been generally peaceful, and he’s clearly a bigger boy who can do, who wants to, and who often has to struggle to “do it right.”

Charlie spent much of the weekend sleeping and some of it coughing: I’ve had a bad cold for the whole past week, and Charlie finally caught it. Saturday night—after napping a lot—he couldn’t sleep till 4am (and was beside himself at one point). Sunday he was much more easy-going, eager to get on his bike, and, while sitting on the couch afterwards, telling me the names of the aide last year who gave him the piggybacks. And then, of one of the aides he has this year.

And saying yes when I asked if he wanted to go to school tomorrow.

Housing for disabled adults in New Jersey.

The current economic crisis, and its effect on the housing market.

This post is about both of those topics.

Don’t stop reading—this is an upbeat post, despite the subject matter.

Certainly one wishes that the question of housing for disabled adults weren’t the sort of topic that is accompanied by words like “worries” and “depressing.” But it very much is, right now. In New Jersey, where we live, the waiting list of developmentally disabled adults wishing to move into government-supported community housing has over 8000 people on it. Last week’s report that 28-year-old Tara O’Leary died of starvation after being removed from a group home run by New Jersey’s Department of Developmental Disabilities, and that her death is being investigated, add to the concern, as does the story of 35-year-old Kate Southern in Illawarry, Australia.

Yesterday’s New York Times reports on Our House, a New Jersey nonprofit that creates housing for  developmentally disabled people by buying and renovating single-family homes in suburban communities. With prices falling in the housing market, and fewer people looking to buy, Our House has been able to purchase some new homes at reasonable prices:

On one of the purchases in Berkeley Heights — in a well-established neighborhood of homes valued at $1 million and up — Our House was the only bidder. For $700,000, it scored a five-bedroom ranch with a large yard and a new kitchen.

A four-bedroom house a few blocks away was bought for $525,000; a four-bedroom ranch in West Orange was also purchased, for $425,000. All three houses are now being converted, and will open as group homes early next year.

Further, there’s been changes in New Jersey’s Council on Affordable Housing regulations to ensure that municipalities make housing for the disabled available:

In the past, towns were able to meet their affordable-unit quota by taking part in a regional agreement that permitted the trading of credits between municipalities. The recent changes eliminated this option, explained [George] Vallone, a developer with a company called Hoboken Brownstone, and now each town must meet its own obligations.

Vallone is also the President of Our House’s board, all of whom are volunteers.

Our House was particularly concerned about the needs of disabled adults as they grow older. Another member of the Our House board, Richard V. Olsen, a professor of environmental psychology at the New Jersey Institute of Technology, provided these recommendations for the kind of the house to look for:

“a ranch house on a level lot, since wheelchairs might become a necessity; abundant natural light to accommodate aging eyes; easy flow between the rooms; and wide aisles and door frames.”

All things I’m filing away as we keep moving forward in preparing Charlie, and ourselves, for the future.

Made it through Thanksgiving; did some holiday shopping from the comfort of home (and here’s some gift suggestions); time to get back on the school bus!

• Autism and Schizophrenia: The Same “Disease”?
  According to the latest theory, “an evolutionary tug of war between genes from the father’s sperm and the mother’s egg can, in effect, tip brain development in one of two ways.”
• Girls and Getting a Diagnosis
  Are girls and women sometimes not diagnosed as being on the autism spectrum because they do not have the same symptoms as boys and men do?
• Denis Leary Tries (Tries) to Defend Himself
  Contrary to what he said a few weeks ago, Denis Leary doesn’t seem to be so sorry after all about what he said
• Nicotine Addiction and Autism
  While studying drug abuse and addiction, researchers at the Ohio State University College of Medicine have found a link between nicotine addiction and autism.
• Mandatory Autism Registry in NJ Proposed
  NJ health care professionals will be required to report those diagnosed with autism at any time from the day they were born through their 21st birthday.
• Increased Use of Antipsychotics in Children (and Young Children) Criticized
  More than 389,000 children and teenagers were treated with Risperdal—an atypical antipsychotic—last year. And, 240,000 of them were 12 years old or younger.
• Teacher Suspended For Letting Students Vote Alex Barton Out of Her Class
  Florida teacher Wendy Portillo—who allowed her kindergarten class to vote on whether or not their classmate Alex Barton could remain in class—-has been suspended without pay for a year.
• Off to the IACC
  I attend a meeting of attend a meeting of the Interagency Autism Coordinating Committee, which coordinates efforts concerning autism within the US Department of Health and Human Research.
• A Wish To Be in the Brownies
  In Wisconsin, after one visit to Girl Scout Brownie troop for girls with special needs in Oconomowoc, the troop’s leaders told 8-year-old Magi Klages’ parents not to bring her back.
• Looking For Autism’s Causes At Home
  MARBLES stands for Markers of Autism Risk in Babies—Learning Early Signs and investigates “biological and environmental triggers that children are exposed to prenatally and post-partum.”
• Refrigerator Mothers, Warrior Mothers: One and the Same?
  Is the “warrior mother” not—as proclaimed in the Warrior Mothers book put together by Jenny McCarthy—the opposite of the “refrigerator mother” of the previous generation, but rather her “distorted mirror image”?
• 28-year-old woman’s death under investigation
  The pressing, pressing, pressing need for staff with appropriate training, for facilities, and for much much more was more than made apparent at the IACC—the November 10th death of 28-year-old Tara O’Leary highlights just how pressing these needs are.
• Something Else to Be Thankful For
  I’m thankful everyday to be Charlie’s mother.
• What’s In Your Library?
  What books about autism are in your library?
• Measles Aren’t Going Away, They’re On the Rise
  1049 cases of measles have been reported in England and Wales so far this year, the highest number in 13 years and exceeding the number on 2007, when there were 990 case

I have been thinking more than ever about where Charlie will live as an adult since hearing about the services offered in different states at last Friday’s IACC meeting. The pressing, pressing, pressing need for staff with appropriate training, for facilities, and for much much more was more than made apparent—the November 10th death of 28-year-old Tara O’Leary highlights just how pressing these needs are.

Tara O’Leary had severe developmental disabilities and was a client in a community care residence in Hunterdon County in central New Jersey. Her death is being investigated by both the state Department of Human Services and the Hunterdon County Prosecutor’s Office. According to yesterday’s FOX News, O’Leary had brain deformities, scoliosis, and other severe medical conditions. The residence where O’Leary and two other women lived was funded by the New Jersey’s Department of Human Services’ Division of Developmental Disabilities. On September 11, O’Leary was removed from the home: According to her cousin, Eileen Devlin, medical records said that O’Leary (who was 4′10″) weighed 95 pounds at a doctor’s visit in September 2007. In August 2008, an aunt, Patricia O’Leary, saw her niece, who was “gaunt, with unwashed hair and shoes on the wrong feet.” O’Leary had not had a guardian since the death of her father in 2005 and her aunt asked to be her legal guardian.

Once she was taken from the home, Tara O’Leary lived in an institution for a little over a week before she was taken to Hunterdon Medical Center suffering from dehydration, malnutrition and bedsores and septic shock, Devlin said. She weighed just 48 pounds at check-in.

Devlin said that with a feeding tube, her cousin’s weight rose to more than 70 pounds by November, but her overall medical condition did not improve. She died Nov. 10, days after she, Patricia O’Leary and another cousin became her legal guardians and decided to take her off life support.

The other two women who lived with O’Leary in the house—one of whom had also lost a dangerous amount of weight—have been removed and are now healthy. The woman’s case manager has been suspended.

O’Leary relatives noted that, after the death of her father, they were only able to visit her occasionally and were “never allowed to see her in the home where she was living _ or even to know exactly where it was”—a potential violation of state policy.

As noted in yesterday’s MyCentralJersey.com, the prosecutor’s office is also looking into “the circumstances surrounding the quality of care and death of a disabled adult.” Jennifer Velez, commissioner of the Department of Human Services, made this statement:

“This death is unacceptable on many levels, and we’re doing all we can to scrutinize every aspect and prevent tragedies such as this from occurring again.”

A roundabout sort of statement—so some “aspects” relating to the Tara O’Leary’s care were not being “scrutinized”—-that seems, more than sadly, too evident.

The November 13th Newsweek has an article, More Than Just Quirky, about girls and women with Asperger’s Syndrome: Are girls and women sometimes not diagnosed as being on the autism spectrum because they do not have the same symptoms as boys and men do?

Girls, it’s noted, have more “socially acceptable” obsessions—”horse and books,” perhaps, rather than “vacuum cleaners or oscillating fans”:

“Girls tend to get obsessed with things that are a little less strange,” says Elizabeth Roberts, a neuropsychologist at the Asperger Institute at the New York University Child Study Center. “That makes it harder to distinguish normal from abnormal.” That observation is consistent with a 2007 study of 700 children on the spectrum, which found that girls’ obsessive interests reflected the interests of girls in the general population; the same was not true for boys.

In addition to more socially acceptable obsessions, Roberts says, the Aspie girls she sees are more adept at copying the behaviors, mannerisms and dress codes of those around them, than Aspie boys tend to be. “From my personal experience, they seem to have a greater drive to fit in than boys with Asperger’s do,” she says. “So they spend a lot of time studying other girls and trying to copy them.” When social settings change, this can spell disaster. “As you move from high school to college, or from one group of friends to another, you have a whole new set of rules to learn,” said one Aspie woman who asked not to be named. “Not only do you lose your own identity, but if you end up surrounded by the wrong people—mimicking their behavior without understanding the motivations behind it can lead to big trouble.”

Of course, it’s not just different symptoms that stymie diagnosis—cultural conditioning may also play a role. What looks like pathological social awkwardness in a little boy can seem like mere bashfulness or just good old-fashioned manners in a little girl.

Newsweek also points out that “social mores might also make the disorder more harrowing” for girls, especially as they grow up and are expected to be more ’sympathetic and empathetic than boys.” It’s even noted that “desperation” for some kind of social connections “can make girls with Asperger’s easy prey for sexual predators.”

Over the past few years, it’s occurred to me that more than a few friends and others whom I’ve known—-and women, in particular—are on the autism spectrum. Most of them are undiagnosed; knowing about Asperger’s has helped me to understand why one friend, one instance, used to get so irritated when I started analyzing books and movies (her feeling: just talk about them, no need to “break them down and ask all those questions”). Another related some misunderstandings about what a member of the opposite sex was saying and found herself in a situation that wasn’t so easy to extricate herself from. And, adolescence was the beginning of many difficult years after a childhood that had been comparatively peaceful, especially thanks to parents who were glad to encourage some obsessions and cultivate them.

The Newsweek article opens and closes by referring to a mother, Liane Willey, whose daughter was diagnosed with Aspeger’s. Willey notes that she is “quirky” herself:

Doctors diagnosed her right alongside her daughter. Liane says that diagnosis changed everything for her. “It was like a light bulb went off,” she says. “I was able to seek out the right kind of treatment, and after a lifetime of mimicking others, finally find my own identity.” And early diagnosis has helped her daughter (now a healthy teenager) avoid many of the pitfalls that Liane herself fell prey to.

I’ve got my own set of “quirks” and—following Charlie’s diagnosis, have wondered if I might be somewhere on the spectrum and, while there are many qualities that Charlie and I share, I don’t think I’m autistic (well, that’s what I think). Has having an autistic child made you more aware of your own “quirks” and obsessions, and possibly of an actual diagnosis?

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.

In just about one month, I turn 40. Charlie is 11 1/2—-so when I’m 50, he’ll be 21, and when I’m 65, he’ll be 36, almost as old as I am now.

Where will he be living? (With us?) What will he be doing? (School will be long over.) What opportunities will there be for him, or not?

Yesterday’s Bergen Record describes Debbie Legutko, whose two adults sons—24-year-old Derek and 21-year-old Frank—live with her and her husband. Derek is autistic and holds two part-time jobs. Frank requires intensive medical care and is on a ventilator and oxygen.

The Bergen Record notes that some 8,000 individuals with developmental disabilities are on the waiting list for residential supports and services at New Jersey’s Department of Human Services’ Division of Developmental Disabilities. About half live with their parents and “thousands” have been on the waiting list for year (one person was on the list for 23 years). In 2007, there were 24 new placements.

Kind of goes without saying that we have a lot of work ahead of us, for a project that’s going to be part of the rest of my life and is it worth it.

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…………..