Often through Alex’s seven years of formal education, I’ve had to learn why he does what he does in school. A few years ago, I was unsettled by the amount of coloring homework he brought home. How was coloring ever going to help him get a job, especially since he could rarely stay within the lines?

Image: sxc.hu

Then we went to a parent-teacher conference and I chatted with his OT. “When Alex does his coloring,” she said, “make him do it standing up, with the paper held against a wall. This strengthens his arm for writing.” I’d never thought of that. Were we correct in how we were teaching him how to write during homework? Well, no. We used markers at home, and his teacher called them “cheating, because they make the stroke evenly for you.” We should also have let Alex use only short pencils, she said, about the length of those you’re issued on miniature-golf courses, because they also prevented him from holding the pencil too far up.

One of Alex’s recent IEPs contained, at my insistence, teaching him to use a fork and teaching him to blow his nose. The fork’s a work in progress, but somebody sure taught him in the last few years how to use a Kleenex, and his number of respiratory infections has since plummeted.

The Alex in school, even special-needs fifth grade, is not the Alex at home. Once upon a time he would only cling to us when we visited his classrooms, and cried when we left. Then he went through a period of eying us askance when he found us there, then studiously ignoring us. Now he comes up and takes our hand but only for a moment, then heads off to his morning’s work the way anyone might if their parents popped into their office unannounced. This I find encouraging.

Jill and I were in a typically over-shopped Manhattan grocery store the other day. The shelves were disordered, and while Jill picked out her cans of chicken broth I straightened one part of a shelf, and a thought stuck me of Alex flawlessly sorting shapes and colors from about age 2.

Too bad he can’t pick the right stocks instead, I said to a friend then.

Maybe he can do that, too, she replied.

The thought came to me of Alex today, arranging toy animals by height and color on our living room rug. “You know,” I said to Jill in the grocery store, as I placed the green beans back where they rightfully belonged, “I have no doubt Alex could stock shelves some day.”

Alex can do much more, we’re coming to think, but we’ll find out what that is only as our education continues.

Learn more about IEPs at http://www.wrightslaw.com/advoc/articles/iep_guidance.html and http://specialed.about.com/od/iep/Individual_Education_Plan.htm. And Google “SEPTA” and find out about local special-education PTAs nationwide.

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

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.

Today Easter Seals is unveiling the results of its Living with Autism Study. The study was done in cooperation with the Autism Society of America. 1,652 parents of children who have autism and 917 parents of typically developing children were surveyed about daily life, relationships, independence, education, housing, employment, finances and healthcare. The results are summarized on the Easter Seals blog:

The Easter Seals Living with Autism Study results reveal parents raising children with autism are very concerned about the future independence of their children. In fact, they’re far more concerned than parents of typically developing children — nearly 80 percent say they’re extremely or very concerned about their children’s independence as an adult, compared to only 32 percent of other parents. This is especially true when it comes to their financial independence, quality of life, social and inter-personal cconnections, and employment and housing opportunities — and with good reason.

Autism is a growing public health crisis, and families are desperate for solutions and resources. Easter Seals and others in the autism community are doing their best, but current systems, structures and resources to help people with autism and their families do not adequately meet the growing need, especially for adults with autism.

Today’s Chicago Tribune provides more details:

The study by Easter Seals found that more than 80 percent of adults with autism between the ages of 19 and 30 are still living at home. Only one-fifth of children 16 and over with autism are employed, compared to 75 percent of people that age without developmental disabilities.

And children with autism under the age of 18 are far less likely than typical children to take advantage of some of the basic tools of modern society, like cell phones, bank accounts and credit cards.

We’ve got to start thinking and doing right now to address these more than pressing concerns: There has to be housing and trained staff and jobs, if autistic adults who need such services are going to have access to them. And we have not only to teach autistic children about using cell phones and ATM cards and managing their bank balance, we have to think that they can and will learn these things.

I really think that a first step is, indeed, believing and knowing that autistic children can learn all those things and that if they’re not, we need to trying different ways of teaching, and learning how they can best learn. Too often I’ve seen my son not learning something (after weeks, months, and years) and every time it’s been because the same old teaching methods were being used, and Charlie was making the mistakes and minimal progress.

Yes, we’ve got a lot of work to do, and what if we start by thinking, it’s not just that a child is not “getting something,” but we’re not “getting” how we can change ourselves and teach them in ways that best suit their ways of learning?

This is the last week of classes at the college where I teach; after finals, spring semester does not start till mid-January. It’ll be good not to have to rush around so much and to work more around home, and, certainly, not to have to hurry home on the highway to meet Charlie’s schoolbus.

It does occur to me that, if I didn’t work, I could spare us a certain amount of anxiety: What to do when Charlie is sick? What to do if there’s an early morning meeting to attend or one in the later afternoon? What I do at work—-teaching Latin and ancient Greek and some administrative and advising duties—has little (obvious) relevance to what Charlie is learning and to what he needs.

Some years ago, I thought seriously about becoming an autism teacher, so I’d be able to devote myself full-time to what Charlie needed. As it’s turned out, I’ve stayed with the Latin and Greek. In an article in today’s Buffalo News about working mothers of special needs children, Julie Barrett O’Neill—the executive direcor of Buffalo Niagara Riverkeeper and the mother of three children, one of whom has Down Sydnrome—-says:

“I am really grateful for having children, because it puts all of my [Riverkeeper] work into perspective –what we’re really working to change, and who we’re really serving. Because the work we do takes so long, we’re really working for our children more than ourselves.”

It also keeps her from being a workaholic, she said. “Sometimes when you love your job it can consume your entire life. This helps me have a better balance.”

Laura Marshak, the author of Married With Special-Needs Children: A Couples’ Guide to Keeping Connected and a psychology professor in Pennsylvania, is quoted as saying that O”Neill’s “easy balance” is unusual. Certainly it hasn’t been easy to find a “balance” in taking care of Charlie and doing my job; Jim does a lot, from getting Charlie ready to meet the morning schoolbus to setting up his own schedule with Charlie’s and my needs in mind. My own hours a lot more flexible than in a 9 to 5 job (as are Jim’s) and, thanks to email and the internet in general, I can still get some work done while at home. (And blog, too, but that’s not “work.”)

And, over the years, my own efforts to teach the not-exactly-easy subjects of Latin and ancient Greek to my students—-most of whom are studying to be nurses, teachers, businessman, social workers, and who know they have to go to work straight after college—have taught me a lot about how to teach and help Charlie. As he’s 11 1/2 now, it’s occurred to me that my students (18-22 years old) are closer in age to him than they are to me and more than a few of them have had their share of various struggles, and school isn’t always the easiest for them, either. If I didn’t have Charlie, I’d probably end up volunteering for all kinds of committees and extra projects and while I’d like to, with Julie Barrett O’Neill, I’d say that life raising Charlie helps to keep work from becoming all-consuming.

Though I still am grateful not to have to keep looking at the clock on my cellphone to make sure I make it into the parking lot before the schoolbus does for a few weeks.

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.

Vaccines don’t cause autism and yet a connection between the two seems to have become deeply lodged in the public consciousness. Some believe in a vaccine-autism link with something akin to religious faith, or fervor, to the point that, no matter how often one cites scientific studies refuting, such a link, some are not, will never be, convinced. Some say that parents should have the right to choose to vaccinate or not; meanwhile, measles has been on the rise this year with some 131 cases so far reported, This focus on vaccines has come to preoccupy discussions about autism, over and above the very real concerns of appropriate schools and educational programs, and housing and jobs for adults.

The excessive attention given to a hypothetical vaccine-autism link keeps discussion about autism centered on children, and on young children and infants. It’s the schedule of vaccines a child receives in his or her first 18 months that are especially under scrutiny, and it’s autism in children that most public discussion tends to be about—-but what about older children, and about autistic adults?

This past week I talked to two mothers of older children—-one’s mother son is in his 20s, the other mother’s son is in his 50s. “Your son’s very young,” the mother of the 50-something child said to me and did I feel relieved. So often over the past few years and certainly since Charlie’s grown so tall, the word has been “he’s getting older” and “he’s not so young anymore.”

Charlie, as noted regularly here, is 11 1/2 years old—-certainly no longer a little preschooler who might, or might not, be able to enter kindergarten with same-aged peers. On the other hand, as those other moms pointed out, he’s just at the start of his life and so much still lies ahead.

The years between birth to 5 and 2 to 5 are often referred to as a time that there’s a sort of “window of opportunity” to do as much as one can—intensive ABA, biomedical treatments even like the experimental, and potentially dangerous, chelation. The message delivered to parents is that, if you don’t hurry hurry hurry and do everything, do all, you can now, you’ll lose that precious window and it’ll all be nevers: A child will never be able to lead a normal life, go to school without special ed, go to the prom, go to college, get married. Take care of themselves. The result is that parents—-as we did when Charlie was younger—-throw themselves headfirst into every possible therapy they can try, and many dollars are spent in the process, and many hopes rise and fall.

An article in The Gazette about 4-year-old Peyton Thorpe. His father is Noel Thorpe, the special-teams coordinator and defensive-backs coach for the Edmonton Eskimos; Peyton was diagnosed at 2 years old with autism and currently does in-home therapy five days a week and attends an integrated preschool four days a week. He is not talking yet.

I remember and still feel what it was like that have that “sense of urgency” to do everything we could before Charlie turned 5, as if kindergarten were some sort of magic goal—a finish line to normality. But far from 5 being some magical age that “everything” must be accomplished by, Charlie’s has kept on learning at 6, 7, 8, and onward. What hasn’t kept apace with his getting older is people—-school administrators, autism consultants of various sorts, his own parents—-knowing what to do, as far as programs, teaching methods, training for staff, transitioning Charlie from each stage. Though parents of just-diagnosed children often feel so confused and uncertain, Early Intervention and preschool services and programs are (here in New Jersey, at least) in place. After that, it always seems to be “the great now what” all over again.

But the fact that we have a sense of how to help young autistic children and are slowly finding our way to teach older children, suggests that we maybe kind of have a better sense of what to do. (Maybe….) The mother in her 80s said to me that, compared to what was available for her son when he was Charlie’s age and younger—-nothing—–everything we’ve gotten has been served up on a silver platter. “And I’m glad it has,” she added. Now the work, or the work I know I have to do, is to figure out how the things Charlie’ll need—a job, a place to live, a way to be among the community—can be put in place and can work.

Returning to Noel Thorpe in The Gazette:

Thorpe doesn’t know what the future holds, but understands there will be challenges and obstacles ahead; hurdles he seems willing to tackle head-on.

“I can’t imagine [Peyton] not speaking. That’s a goal,” he said. “But let’s be honest. If he doesn’t, I won’t love him any less. It’s about the connection between two people. There doesn’t have to be words.”

The mother of the 50-something year old young man told me that her son was 10 when he started to talk. Over time, much can happen, and I want (I need) to savor every moment of our time with Charlie. Yes, childhood’s not forever—that’s why there’s no need to rush it, or to speculate endlessly about theories of what might cause autism.

I was interviewed by Claudia Kalb in a web exclusive for Newsweek:

Spotlight on Autism: The mother of an autistic son reacts to John McCain’s recent pledge to help families like hers. Was it just rhetoric?

More about McCain’s comments about autism in the debate last week here.