The Women’s Rights blog over at Change.org has a post about the Top 10 Moments of Feminism in 2008. The selection of Sarah Palin, Governor of Alaska, as Senator John McCain’s running mate sparked (I guess that’s an understatement) lots of discussion in general, and certainly in the autism and disability community, and in particular regarding Palin’s baby son Trig, who has Down Syndrome. Would you consider the choice of Sarah Palin, special needs mother, as a Top 10 Moment in the annals of special needs families in 2008?

The Prenatally and Postnatally Diagnosed Conditions Awareness Act, also known as the Kennedy-Brownback bill, authorizes the use of federal funds to train doctors to inform parents about Down syndrome or other prenatally and postnatally diagnosed conditions with up-to-date information on child development and life expectancy. If funded at the recommended $25 million over five years, the bill would provide for referral networks, to connect parents who’ve recently received a diagnosis with parents of older children, as reported in today’s Eagle Tribune (North Andover). Dr. Brian Skotko of Children’s Hospital Boston—who has a nephew with Down syndrome—published a study of the results from a survey of more than 1,000 mothers (2005):

The central question was about how medical support could be improved for mothers who received a Down syndrome diagnosis for their children.

The women came from five states, including Massachusetts. Regardless of the region, they reported feeling frightened or anxious after receiving the diagnosis, and also feeling shocked, angry and depressed.

About half of the women said doctors talked about or emphasized negative aspects: that almost 50 percent of children with Down syndrome will need heart surgery; that they will need to see a specialist for their condition; and that they will need speech or physical therapy.

But that’s far from the whole story, Skotko said. Today, surgery, treatment and therapy are readily available and often successful. And a recent study showed life expectancy for people with Down syndrome doubled between 1983 and 1997, going from 25 to about 50 years old.

Also, children diagnosed with Down syndrome are routinely mainstreamed in public schools, Skotko said. And they are scoring higher on standardized tests. Many of them even work and live on their own.

With tests to identify autism in younger and younger children being developed—and even the possibility of prenatal genetic testing for autism someday—getting information early on, and hopeful information (like the growing acceptance and understanding of Down Synrome) can indeed make a difference.

A new national strategy for screening for Down syndrome in Denmark has halved the number of Down Syndrome births and led to a 30% increase in infants diagnosed with the condition. The Danish National Board of Health issued guidelines for prenatal screening and diagnosis for Down Syndrome in 2004; these guidelines (from Science Daily)

included the offer of a combined test for Down Syndrome (based on combination of maternal age, plus serum and nuchal screening) in the first trimester. This test gave women a risk assessment for Down Syndrome at an early stage in the pregnancy. Women whose risk was higher than a defined cut off were referred for invasive diagnostic tests (chorionic villus sampling or amniocentesis).

The study is published in the November 27th British Medical Journal.It was recently reported that births of children with Down Syndrome are increasing in the UK. While most women who receive a prenatal diagnosis of Down Syndrome still choose not to have the child, more are now deciding to.

Carol Boys, chief executive of the [Down's Syndrome Association], had not expected the rise in Down’s syndrome births. “It seems to show that more parents are thinking more carefully before opting for prenatal screening and termination – that being born with Down’s syndrome is being seen in a different light today,” she says on the programme.

Substitute “autism” for “Down Syndrome” in this post—-consider the increasingly widespread use of genetic testing even for things like what sport a 2 1/2-year-old should start to train for—and you know we’ve got some seriously difficult questions ahead of us.

More children with Down’s Syndrome are being born in the UK, according to today’s Times Online.

Widespread screening was introduced in 1989, and led to a steady fall in new instances of Down’s syndrome. From 717 babies born with Down’s that year, the total decreased each year, to 594 in 2000.

During the next six years the birth rate for children with Down’s rose by 15 per cent, reaching 749 in 2006, the most recent year for which figures are available from the National Down Syndrome Cytogenetic Register.

It’s noted that, while most women who receive a prenatal diagnosis of Down’s Syndrome choose not to have the child, “many are now deciding to give birth.”

Carol Boys, chief executive of the [Down’s Syndrome Association, had not expected the rise in Down’s syndrome births. “It seems to show that more parents are thinking more carefully before opting for prenatal screening and termination – that being born with Down’s syndrome is being seen in a different light today,” she says on the programme.

“When I and others had our babies it was a very different world . . . Now there is much greater inclusion and acceptance, with mainstream education having a huge role. We think this plays a part in the decisions parents make – there’s even been a baby with Down’s syndrome on EastEnders.”

A little positive representation of autism, of disabilities and human diversity, of life raising a disabled child—can go a long, long way.

Would I have had Charlie, if (while pregnant with him) I had known that he’d be autistic?

Yes—you betcha, indeed.

Currently, there’s no prenatal genetic test for autism. Long ago (as in “around the time I first started writing this blog”) I referred to such testing as “fighting word“: While some would welcome the notion of knowing that a child-to-be would have a disability, others have been quick to point out the possibility of people choosing to abort a fetus if a disability were detected.

In the October 13th Babble, an online web community for a “new generation of parents,” Karen Dempsey writes about Choosing (a) Life: They said our baby would have Down’s; we said we understood. We had no idea. Having conceived her second child after a year of infertility treatments, Dempsey was concerned that the “risks of amniocentesis outweighed the chances it would detect a problem.” During an ultrasound, the radiologist detected other possible signs of Down Syndrome (echogenic intracardiac focus, or EIF; the size of the baby’s nose). Dempsey and her husband knew they were going to have their baby, no matter what. The article depicts Dempsey’s emotional state and thoughts while awaiting her daughter’s birth:

One sleepless night near the end of my pregnancy, I lay in bed with my heart racing, remembering that tiny star from the ultrasound. Were we kidding ourselves, pretending we could just take things as they came? I couldn’t calm myself, though I was desperate to sleep. I tried relaxing by tightening and releasing the muscles of my body one by one, beginning at my toes. I should pray, I thought. I should pray for her. But what did that mean? She was there, fully formed inside of me. I could feel her knees and elbows, her stubborn round head. I didn’t believe in a prayer that would change her genetic makeup; she had Down syndrome, or she didn’t. And so what would I be asking for, a different baby? I’d already chosen to have this one. I finally found peace, and sleep, with the thought, She is who she is. Already, she is who she is, and she is mine.

Liddy does not have Down’s Syndrome, but she has a number of medical conditions: a heart murmur caused by a congenital heart defect, swollen kidneys, an elevated white blood cell count, severe gastroesophogeal reflux disease. Dempsey writes of what testing could have told her and what it could not have:

An amniocentesis would not have predicted Liddy’s complications, or prepared me for the realities of having a sick child. Caring for Liddy challenged my marriage, my family relationships, my friendships and my mental health — my very way of being in the world. John and I were naïve. We would learn, through Liddy, the awe-inspiring breadth of medicine’s understanding, as well as the frustration and grief of its limitations — and of our own.

There’s no question in my mind that we were going to have Charlie when I was expecting, “whatever” he might have. Dempsey’s experience seems to me a potential harbinger of questions that parents may find themselves facing should more prenatal tests be developed, including these tough questions:

Will medicine suggest that any and every variation from absolute normalcy is pathological?

How can we draw lines between disabling diseases such as severe autism and more mild differences such as Asperger’s, which may give society some of its greatest achievers?

Will parents have complete say over the kind of children they want to bear?

And what sorts of messages will doctors and genetic counselors convey when talking about risks, probabilities and choices that involve not life and death but personality and sociability, genius and geekiness?

Tough questions and big questions. Here’s two perspectives, one from a scientist and another from the father of an autistic daughter.

For myself, I would to some extent have appreciated knowing Charlie’s diagnosis as early as possible. Perhaps it’s from the memory of all my wondering, worries, and confusion during Charlie’s babyhood, when subtle things said “things are different,” but nothing stood too much out, and no one wanted to say “maybe he needs to be evaluated by a specialist.” On the other hand, before there might be such a test, it seems all the more imperative to—like parents of children with Down Syndrome—present a hopeful message out there about autism, with an emphasis on how it’s not a dreadful death sentence, and that we know a lot more and can help a child greatly.

When I tally up all the things that have happened to Jim and Charlie and me since Charlie was diagnosed, it’s a rich harvest of experience, with some really tough and awful times (because society and communities did not know what supports and services to provide him with to thrive) and some so good, you can’t imagine life without them.

Following up on the harvest theme, today is “harvest theme day” at the b5media Health and Wellness channel. Wishing you a day of plenty and of sunshine, and of good times with those who walk with you.

Says Janice Nodvin, program director of the adult Down syndrome program at the Institute for the Study of Disadvantage and Disability, a nonprofit advocacy organization based in Atlanta, about her now 29-year-old son Evan in today’s Atlanta Journal-Constitution:

“Evan is a man, and he should always be treated as a man, even though we sometimes have to help him out.”

While doctors predicted that Evan would not live until adulthood, he now works at a senior adult day care center, lives on his own, takes public transportation, votes. The Atlanta Journal-Constitution article is about the issues facing the aging parents of developmentally disabled adults and also notes that

….Nodvin said, transitioning her son into the community has been a tricky dance. Without a personal consultant who helps him cook his meals and gets him to the places he needs to be, they’d be standing still.

…….

Nodvin said that many families work so hard to get their children into schools and become self-reliant that they neglect to look at the big picture.

She said her institute encourages parents to put a plan in place while they are young enough and strong enough to have a say because, “We’re still our child’s best advocate.”

“I’ve worked with families where parents are really aging and the adult with the disability has never been outside the home,” Nodvin said. “When is that going to happen? When the person gets sick?”

Today, the expected life span of people with Down syndrome is close to 55 years —- up from a median of about 35 years a few decades ago. The same is true for others with developmental disabilities, including cerebral palsy, autism and fetal alcohol syndrome.

I guess you could say, I feel that every day with Charlie involves looking ahead to that big, unknown tomorrow. There’s so many uncertainties and so much to think about in advance to provide for him. Yet I always take heart knowing that we’ve done all right thus far growing up together and just hope we can keep walking together on the long road.

Without Trig, Governor Sarah Palin’s infant son who has Down Syndrome, what might discussions about her being Senator John McCain’s running mate be like?

Gov. Palin’s older sister, Heather Bruce, has an autistic child, an article in today’s New York Times notes:

Before her son was born, Ms. Palin went to extraordinary lengths to ensure that his arrival would not compromise her work. She hid the pregnancy. She traveled to Texas a month before her due date to give an important speech, delivering it even though her amniotic fluid was leaking. Three days after giving birth, she returned to work.

But with Trig in her arms, Ms. Palin has risen higher than ever. Senator John McCain, the Republican nominee for president, says he selected her as his running mate because of her image as a reformer, but she is also making motherhood an explicit part of her appeal, running as a self-proclaimed hockey mom. In just a few months, she has gone from hiding her pregnancy from those closest to her to toting her infant on stage at the Republican National Convention.

No one has ever tried to combine presidential politics and motherhood in quite the way Ms. Palin is doing, and it is no simple task. In the last week, the criticism she feared in Alaska has exploded into a national debate. On blogs and at PTA meetings, voters alternately cheer and fault her balancing act, and although many are thrilled to see a child with special needs in the spotlight, some accuse her of exploiting Trig for political gain.

But her son has given Ms. Palin, 44, a powerful message. Other candidates kiss strangers’ babies; Ms. Palin has one of her own. He is tangible proof of Ms. Palin’s anti-abortion convictions, which have rallied social conservatives, and her belief that women can balance family life with ambitious careers. And on Wednesday in St. Paul, she proclaimed herself a guardian of the nation’s disabled children.

“Children with special needs inspire a special love,” Ms. Palin said, echoing the message she had shared at the shower.

For sure, they do; take it from this special needs mom.

And too, special needs kids need concrete and pragmatic and real answers, need policies and legislation (how about fully funding IDEA and restoring the ADA……..)  and understanding that truly makes a concrete difference in their daily lives, throughout their lifespans.

So as you may not, or may, have noticed, there is still some wonkiness going up with this blog. The good folks who handle are matters technological, software-related, and the like, have been working hard to migrate b5media’s blogs over to a new server and all should be well, webpages should load and updates occur, very soon. One (”adverse effect?“) of the server migration has been that the sidebar (to your right) has not been updating with recent posts and recent comments. So if a comment is left on a post written a couple weeks or months ago, unless you’ve decided to sit down and read every single post (which I don’t recommend; some posts are more post-worthy than others), some good comments will go missed. I’ve rounded up a few of them below, with a bit of my own responses, and many many thanks for everyone who reads Autism Vox and lets me know what you think.

Anatasia Hulke was found on Monday afternoon, after she’d been missing from her home since Thursday.Regan commented on a bulletin about educational policy from the National Down Syndrome Society and pointed out a Nova video about autism, genes, and a tale of two mice.

A post about late talking written in July continues to draw comments, including this one from John which argues that autism and other disabilities like dyslexia are currently over-diagnosed.

I would counter, they are being diagnosed more because we understand them more and can better identify them, and this notion of better diagnosis needs to be considered in investigating why the rates of autism in Somali children in Minneapolis have increased (here is a commenter, Ali, on this topic).

A commenter, Mindy, asked another commented about seizure medications, Sensory Processing Disorder in a post on sensible accommodations for sensory issues. A couple of friends have been talking on and off about the possibility of using medication for their children. My son’s been on medication since he was 7 and the decision to use it was not lightly made; the medications’ effects are carefully, continually scrutinized. (We’re going to visit Charlie’s pediatric neurologist on Friday to talk about this and some other things.)

The father of a teenage boy asked this question in a post on talking to oneself:

I’ve noticed my 16 yr old boy pace and talk to himself a few times. He is still a bit uncoordinated and has a tendency to walk looking down instead of his head up or stragit ahead. He has above average grades and excels in Japenese but he is a bit sluggish with physical acitivities. I’m a bit concerned becasue his mother (the ex) suffers from schizophrenia and his older brother devleoped a psychois at about 20 yrs of age but had bad grades and drug use may have contributed. Should I be concerned?

Some things I’d ask: Are the pacing and the looking down and the sluggishness long-time behaviors, or relatively new? Are these things affecting him in school or otherwise; does he generally seem happy and all right with things? If he only talking to himself, or also talking to others? Just some thoughts……

Another commenter, Jim Blair, asked me a question in the midst of a comment, quoted here in full; the original post was on prenatal testing (a topic of particular now because of whose youngest son, Trig, has Down Syndrome:

Kristina Chew says:

“And a life without Charlie is a life that neither I nor my husband Jim can imagine, nor would we want to.”

Hi,

Follow me in a hypothetical thought experiment. Imagine that your Charlie had been born a “perfect child” as seen by most people. Suppose he were to grow up to be–depending on your preference, an all star New York Yankee shortstop or Nobel Prize winning scientist. Call him Charlie II.

Would you then make the above quoted claim?

Now suppose that as the result of prenatal genetic testing Charlie I had been aborted and 6 month later Charlie II conceived. Think you would still choose the Charlie I that was never born to the Charlie II that was never conceived?

Of course not. Because we only know the things that ARE and not the things that might have been had we made different decisions.

I thank Jim Blair for taking the time to write out this thought experiment, though I find him to be a bit presumptive about how I would respond to his question. According to him, had I known via prenatal testing that Charlie (”Charlie I,” in the thought experiment) had autism, I would have chosen to abort him, thus making it possible for the conception and eventual birth of a most hypothetical “Charlie II” who would grow up to be an “all star New York Yankee shortstop or Nobel Prize winning scientist” and who, endowed with such an impressive future, would be a child that people would wish to have, and would indeed even consider to be a, if not the, perfect child.

I hope that Jim Blair keeps reading this blog (especially once the software issues gets resolved), as he will then find out why I know that Charlie is perfect and why there was no never any doubt in anyone’s mind that he, once conceived, would be born, and that whatever prior information Jim and I might have from prenatal genetic testing or other testing, we have always chosen to have him.

Always have, always will.

Writer Ann Bauer’s adult son is autistic and, in an article in today’s Washington Post, she writes about the question that are always just under the surface of my conscious thoughts:

What happens to Charlie after Jim and I are not here?

Bauer, the author of the novel A World Ride Up the Cupboards, has described a terrifying episode in her family’s life, when her son (at 17) was misdiagnosed as psychotic and had autistic catatonia. She’s also written about the struggle to find and help him keep a job, and how, too often, she’s gotten the message that Autistics Need Not Apply. But the struggles are also because of the world we live in, a world that talks about “raising awareness” but has yet to provide sufficient (or even adequate) and appropriate services not only for autistic children of school age, but for autistic adults. Writes Bauer:

My son is flailing in a system that doesn’t know how to deal with him. I admit I’m of little help. He doesn’t look different from other 20-year-olds, and he happens to be of normal intelligence. But socially, he is as lost as he was at age 4, when he withdrew, quit speaking and stared for hours at his own hand. Over the past year, he’s been placed in a series of group homes for people with mental retardation or psychosis. None has been right.

His senses are overly acute, which means he experiences the world largely as pain. Noises, colors, smells — they’re all too vivid. He is prone to sleeping his days away rather than working in the yard. He likes dark rooms and movies and has the urge to date but cannot work up the nerve to speak to girls, much less ask one out.

Bauer describes a family down the street—60-ish father, adult son with Down Syndrome—who, as she says, she envies, because they’ve “figured out a cohesive, workable system of support.” She writes:

…..while I wouldn’t trade [my son] — the person to whom I gave birth — for any other, I wish that his disability were as recognizable as Down syndrome and that we, his parents, were more effective at helping him achieve a satisfying life. Right now, we’re flummoxed by the issues that arise as a child with autism veers into adulthood: higher education, employment, independent living, romance.

Last year, New York Times ran an article about prenatal testing—about 90 percent of women who learn that they will have a Down syndrome child have chosen abortion—and the “dwindling” population of those with Down Syndrome. Parents of children with Down Syndrome are advocating to get a positive message out there about their children and life with them. As Bauer writes in today’s Washington Post, it’s more than possible to create a good life for an adult child with disabilities and it’s more than worth it. In the autism community, even as debate “splinters” (as Bauer writes) over “philosophical issues—-”cure and acceptance“—it’s the concrete issues of where our kids will live, how will they spend their days, who will care for them, that cause the sleepless nights and are, to some extent, behind wishes for “recovering” a child, as if that would ensure that a child would be able to take care of him or herself.

It’s not been easy for Charlie for me to be gone for two nights (though I’ll be back in New Jersey in less than 24 hours). I went because I feel he’s ready to handle it. Jim’s taking Charlie to the beach this afternoon and I’m grateful as ever for technology—the basic cell phone—-so we can talk about any “situations” that ensue. Charlie now has the right supports around him, a teacher who knew why he was crying and gave him words to describe it, a speech therapist who rearranged her schedule so she could come on Friday.

It’s taken us years to get the right school placement for Charlie. One of the most heartening things about his school is that more of the aides and teachers I’ve met have talked about wanting (yes, wanting) to work with older autistic kids, with teenagers and adults. With the right supports, understanding, and the belief that they can do it, our disabled children who will (all too soon; sigh; onward) be disabled adults can go very very far. Very.

Are disability dolls a “blessing or a sick joke“?, the June 25th Times (UK) asks. There are dolls with prosthetic devices, dolls with Down Syndrome, and Chemo Friends for kids with cancer (and back in 1997, Mattel came out with Share a Smile Becky, in a wheelchair). My Autism Dolls makes ragdolls from puzzle piece fabric, and My Sibling Dolls come with stories about the special needs of siblings with developmental differences and are assembled and packaged by special needs teens and adults.

Not sure what an autistic doll would look like—-like any doll, I would say (we’ve always been more of a stuffed animal household).

More about the “niche marketing” of disability dolls at What Sorts of People.