Grab the World

"Caroline had listened intently, her heart lifting with every word. They left for the library and went for coffee. Caroline would never forget those hours, the excitement she'd felt, as if she were walking from a long, slow dream. What would happen, they conjectured, if they simply went on assuming their children would do everything. Perhaps not quickly. Perhaps not by the book. But what if they simply erased those growth and development charts, with the precise constricting points and curves? What if they kept their expectations but erased the time line? What harm could it do? Why not try?" (Excerpt from The Memory Keeper's Daughter, Kim Edwards, p.98.).

Caroline is the nurse character who takes Phoebe, a newborn with Down Syndrome to care for. The father, a doctor who had lost a sister to disease, delivers his own twins. The second is Phoebe. He tells Caroline, his nurse, to take her to the institution, but neglects to tell his wife. He thinks he is sparing her from pain. Instead, he tells Norah, that their second child is stillborn. He ends up mourning longer than his wife, as he receives news of Phoebe doing just fine -- Caroline refuses to leave Phoebe in the institution she visits.

He must live with his guilt. The scene above is Caroline engaged in a weekly play date with another mother and Down's child. She agonizes that Phoebe, at over a year in age, has still not rolled over. The other little boy, at three, is just beginning to stack blocks. They let them play, but the play is also targeted. Phoebe has not yet grabbed the dangling keys that Caroline keeps putting just within her reach. Her efforts seem futile as she attempts the exercise daily. Until, unexpectedly:

"Phoebe was making soft sounds reaching. Her hands were brushing against Al's neck, his collarbone, his dark plaid shirt. At first it didn't register with Caroline, what was happening; then, suddenly, it did....Phoebe was reaching for the medallion. Not batting at air, as she had this morning, but using Al's chest for resistance, her small fingers scraping and scraping the medallion into her plam until she could close her fist around it. Rapt with success, she yanked the medallion hard on its string, making Al raise his hand to the chafing.

Caroline touched her own neck too, feeling the quick burn of joy.

Oh yes, she thought. Grab it my darling. Grab the world."(pp.104-105)

Perhaps what constitutes "successful parenting of an autistic child" as discussed recently on the blogs, is the innate knowing that there is no harm in waiting. As we push to help our children achieve the developmental milestones, we realize that much of our efforts our futile -- the forced effort, that is. Somehow, the milestones come, be it from a combination of teaching and environment, or because it comes naturally over time, with that confluence of experience, ability and desire. That's not to be mourned. It certainly need not be catastrophized. The points and the curves don't mean much. No harm will be done if our kids take a little longer to reach one of those precious milestones, or if they even come to it differently.

Recently, a friend pointed me to this blog by journalist Patricia E. Bauer: Stand Tallor her other website www.patriciaEbauer.com -- bureau chief of The Washington Post, senior editor of Los Angeles Times Magazine and writer for The New Yorker. I highly recommend that all of us in the autism community reference her disability writing. I too like to keep talking about how autism is referenced in the media and will do so again this October at the Autcom Conference in Edmonton. You can also view my presentation on how autism is referenced at the MIT lecture I gave last May.

Patricia gives us many good reasons why we must continue to remain vigilant about the way autism is referred to. Here is an excerpt from her keynote speech about prenatal screening:

"Let’s start with what we can do as individuals. As I’ve gone around the conference, I’ve heard about some great things that people are doing in their own communities. Things like:

–Helping to educate the doctors and genetic counselors in their area by visiting their classes or professional meetings.

–Building relationships with hospitals, and talking with families who have a fresh diagnosis.

– Monitoring their local news media, and holding them accountable for their coverage and their use of language about people with disabilities.

These are great steps, but let’s not stop there. Let’s dream even bigger.

It’s time for us to insist that our organizations advocate forcefully on behalf of people with Down syndrome in ways that are targeted to reach decision-makers, to reach medical professionals, and of course to reach the general public. Here are some of the things we need to do.

1. We need to provide disability awareness training and accurate information directly to obstetricians, to gynecologists, and to the professionals who assist them. They need to hear the nuanced, compassionate message that is at the core of diversity and human rights: all people have value and dignity and are worthy of celebration. We’ve told them this nicely. Now perhaps it’s time to turn up the volume.

2. We need to put out lots and lots of well-designed materials that will teach doctors how to discuss prenatal screening and diagnoses with their patients. Senators Kennedy and Brownback have recently reintroduced their bill on this topic. Whether it’s this bill or another one, we need to find a way for doctors to get the materials they need.

3. We need to improve medical school curriculums, which include almost nothing about children with disabilities.

4. We need to hold publishers accountable for the editorial content of their pregnancy handbooks. Take a look in your local bookstore, and notice what those books say about our young people. If they carry anything at all, it’s more than likely a cold, clinical list of symptoms and diagnoses, guaranteed to strike fear in the heart of any pregnant woman. We must change this.

5. We need to use technology to convey our message. Where does your average 20-or 30-something look for medical information? Right. The Internet. If we truly want to help people make informed decisions, we need to get involved in the Internet in a big way, both in print and in video. Our content needs to be useful and modern.

6. We need to enable prospective parents to see that people with disabilities live good lives, and that they have warm, sustaining relationships with their families and friends. Presently, that information is only coming to them anecdotally, if at all. Imagine how different things would be if people could be referred to a website that allowed them to click on videos that would show them footage of people with Down syndrome, of all ages and ability levels, going through their daily lives. America’s teenagers are communicating actively through Youtube – why shouldn’t we?

7. We need to speak up to challenge the old stereotypes about our family members and ourselves. We’re not victims. We’re not heroes. We’re just ordinary people sharing slightly extraordinary lives with people we love and who love us."


As I watch Adam's exuberance, his joy, his desire, his beauty, his innocence, I consider that perhaps the world needs to think and pause for his sake; Adam -- who doesn't judge anyone, who, just wants to grab his own piece of the world.