Carly’s Voice

reaching autistic child, non-verbal autism, technology for autism, voice assist for autism, aphasia in children,

Carly Fleischmann was unable to communicate. Diagnosed with autism and related disorders by the age of two, she screamed, threw herself to the floor, smeared feces, moved constantly, and barely slept at night. An attentive family plus hours of daily therapy helped teach her rudiments like walking and feeding herself. Experts advised her parents to consider residential care.

But one day during a therapy session, Carly reached for the computer. Slowly, using one finger, she typed

help

teeth

hurt.

Her therapists were astonished. It took months and much coaxing to get her to use the computer again (at that time, an augmentative communication device). But she began to recognize that communication was essential. Technology made it possible.

What emerged from her arduous single strokes on the keypad showed a girl who wasn’t mentally retarded, as her doctors suspected, but someone spirited, insightful, and intelligent. She wrote about wanting to have fun with normal kids. She asked to do things she’d always wanted to try. And she tried to convey what it was like to live in an autistic body. She explained that behaviors (like banging her head on the floor and bleating loudly) erupted from her like liquid would burst from a can of Coke when it had been shaken and opened. She said those behaviors helped block the sensory input of sight and sound that constantly overwhelmed her.

A few years ago, a segment about Carly’s new-found communication aired on 20/20.

Now Carly uses technology to communicate with a world that’s ever more open to her. She keeps up with a busy Twitter  feed and Facebook fans. She answers questions, promotes autism awareness, and says that she feels part of a larger community by connecting with people through social media.

Technology allows Carly to share what she calls her “inner voice.” Check out Carly’s Cafe, an interactive web video, to experience a coffee shop as she experiences it. And take a look at the memoir she wrote with her father, Carly’s Voice: Breaking Through Autism
to better understand this bright engaging girl whose world unlocked thanks to a keyboard.

Oh, and don’t think Carly’s drive to move forward has slowed. Now 17 years old, she was recently asked to appear on a panel at The Nantucket Project, a prestigious request for any expert, even more impressive that she would be their youngest ever. Senator John Kerry was also scheduled to give a presentation. She tweeted him in advance, challenging him to take a seat on the panel so she could ask him questions. Her challenge was retweeted thousands of times by her followers and Sen. Kerry did indeed do as she asked. Her first question to him was, “What have you done in the Senate to help autism and do you think it’s enough?” Watch the video here.
We may not know what sparks autism, from inflammatory responses in a pregnant mother’s body to systemic changes in the body to another step in emerging neurodiversity. We do know that Carly and many more like her are with us, speaking in voices we’re meant to hear.

Throw Strangely Amusing Parties

throw an art party,

We used to throw strangely amusing parties on a more regular basis. Box parties where kids made forts and mazes and castles out of huge boxes. Tie dye and batik parties that were a messy extravaganza of color. Science-y gatherings where everyone worked on the same ridiculous experiment with vastly different results. Even an election commiseration event where everyone had to bring a few jokes about a certain president whose name rhymed with “tush.”

The longest lasting tradition? Our summer pig pen parties. These were grand messy BYOB affairs, as in bring your own bucket—of dirt. It was dumped in a backyard kiddie pool and mixed by all children in attendance into perfectly creamy mud, which they used to coat themselves until they were recognizable only by bathing suit outlines. We put a garden hose at the top of our slide and the kids careened down in glorious streaks of mud. We handed out cans of shaving cream for use as body décor (with firm instructions to avoid faces because it’s not fun in the eyes). We brought out ample water balloon supplies. And we insisted the kids eat without utensils or hands, just direct face to plate. Like pigs. Of course these parties got out of hand once the grown-ups refused to sit in lawn chairs watching their kids have all the fun. Some neighbors showed up in pig masks, others showed up with water balloons sneakily hidden in baby strollers and red wagons, others brought massive auxiliary supplies of shaving cream. Normally well-behaved men used hoses to fill garbage cans with water, which they dumped over the heads of the few civilized mommies who thought they’d keep their hair looking nice. One year the entire assemblage of pig pen partiers were incensed that a regular pig pen attendee decided to stay home to repair a fence. All of us walked down to the street in wet, muddy, shaving cream streaked glory to drag him to the party. His police chief father who was there helping him make the repairs looked seriously alarmed. We dragged him anyway.

I’ve been fantasizing about a backyard Jackson Pollack party where everyone brings leftover paint to fling at canvases, maybe even using the giant trebuchet our kids built for some super-charged paint tossing. I can just see us all in splattered clothes, posing for a group picture with candy cigarettes hanging out of our mouths. What’s stopping me? I live with practical people who wonder if paint will get tracked in the house because partygoers are human and will eventually need to use the bathroom.

My recent event was a quietly civilized affair: a collage party for some artful cutting and pasting. I have all sorts of glue-able stuff here. Old sheet music, sewing patterns, stockbooks, wallpaper, tiny do-dads, lace, game pieces. All I asked people to bring were their own scissors, marked with their names (because scissors are migratory beasts) and a potluck offering. They brought a lot more glue-able stuff to share. I thought we’d stick down some background, let it dry while we ate and drank, then finish and move on to a second or third one each. But my friends ate and drank and talked while collaging. They didn’t want to stop cutting and arranging. It’s as if we all have too little time for something as simply satisfying as placing a scrap of paper on a page exactly as it pleases us. The event was less lively than the average pig pen party, that’s for sure. But it was restorative. No phones. No screens. Nothing else to do but indulge in the kind of play we call creating. I guess that doesn’t happen unless we make time for it.

Here’s a sample of collage party creations. (Some are backgrounds awaiting finishing touches.)

And let me know your ideas for strangely amusing events. I plan to steal them.

turn junk into collage,

art party,

make a collage, throw a collage party,

science collage,

You’re Having A Perfect Day

today is perfect, unique day, gratitude reasons,

ilovemcl.deviantart.com

A hundred million babies are being soothed in loving arms, lulled to sleep by songs in every language. Those gently nurtured babies will grow up to change our lives in ways too marvelous to imagine.

children change the world, imagine future,

siobhan68.deviantart.com

Today Muslims pray, “Praise be to the Lord of the Universe who has created us and made us into tribes and nations. That we may know each other, not that we may despise each other.” Cloistered nuns petition God that our world be blessed with the wine of Christ’s love and peace. Tibetan Buddhists practice tonglen, breathing in the suffering of others and breathing out happiness for all beings.  Individuals meditate, chant, pray, or contemplate nature while sending light to each soul on earth. People of all faiths dance and sing in Dances of Universal Peace.

Right now, artists are creating something that never before existed. Their medium may be cake batter, dance steps, paint, tiny gems, huge beams, words, reclaimed trash, wool, glass, musical notes, or curved light. They bring vision into reality. The way they see transforms the way we see.

art, vision into reality, art shapes world,

onebadcat.net

Right now people in crisis are rising up, acting out of deep regard for one another in an ongoing testament to the compassion that defines us. Every second millions of people are selflessly working around the world to advance ecological sustainability, economic justice, human rights, political accountability, and peace. Untold ordinary acts of kindness hold us together as we nurture the youngest and tend to the oldest, share with those in need, and weave the web of mutuality that holds us together.

reasons for gratitude, inspiration, appreciate today,

samlim.deviantart.com

Right now people assumed to be dead are reviving, changed forever after by a near-death experience.  They reawaken to a life less focused on material success or narrow beliefs, and instead emphasize love, curiosity, and awe.

living in awe, it's all love,

flickr.com/photos/qthomasbower

Right now you are fueled by a perfect circle: sunlight, soil, and the seed’s mysterious will. At this moment your extraordinary body is replacing millions of cells, pumping quarts of blood, actively defending your immunity, releasing precisely timed hormones and enzymes, operating on rhythms well beyond your perceptions.

perfect body, how body works,

gajitz.com

Today in an unimaginably vast universe, clouds of interstellar dust reflect the light of nearby stars. We are made of elements forged inside of stars that died out long before our own solar system emerged.

we are made of stars, perfect day,

nasa.gov

Each of us is unique, yet we are one being.

What an amazing day.

Educating Too Early

early academics damage, avoid academic preschool, preschool should be play, adult-directed toddler activities, kids resisting instruction, headstrong toddlers, willful preschooler,

Image CC by 2.0 emilygoodstein

My daughter started preschool a month before she turned three. She was too young. The facility was wonderful, the teachers kind, the activities entirely age-appropriate but she resisted the structure. It didn’t make sense to her that she was asked to learn color words she already knew. Or that she had to perform with her classmates at the annual holiday show after she’d already practiced the song and movement pieces well beyond her boredom tolerance. She did what she was told but she wasn’t happy. When I talked this over with the teachers they emphasized how important it was to follow rules, even if she didn’t see the logic herself, because it prepared her to conform to many more rules in “real” school. That didn’t make sense to me either and we finally pulled her out of preschool. I know why I was eager for her to start. Pregnant with her brother, I felt nauseated all the time and hoped preschool would feed her active mind. And she had been chronically ill nearly all of her first three years. Now she was finally better. I suspect, unconsciously, I signed her up to assure myself she was as healthy as any other little girl.

Once she was a preschool dropout we went back to our ordinary, richly educational lives of chores and play. We played outside, hiked in the woods, made up songs, went to the library, visited friends and family, took trips to museums, snuggled, and read. She filled her free time with make-believe play as well as hours of drawing while listening to story tapes. If I had to do it over again, I’d have skipped preschool. I’m not against the concept, just troubled by how much emphasis is placed on adult-led educational structure.

Take a look at promotional material for preschools in your area. Chances are they tout early math, pre-reading, and other academics. This approach sells.  Most people I know sign their children up at the age of two or three to attend specialized enrichment programs that claim to boost abilities in science, art, sports, music, or language. In addition, nearly everyone I know is sure their children benefit from playing with toys and electronics that “teach.”

These well-intentioned parents operate on a mindset that’s hard to dismiss in today’s society. They are convinced that learning flows from instruction. Logically then, early instruction will help maximize their child’s potential. But learning in young children (and perhaps at all ages) has much more to do with curiosity, exploration, and body-based activities. It has very little to do with structured activities, which may actually impair a child’s ability to set and reach goals independently.

Recent studies with four-year-olds showed that, “Direct instruction really can limit young children’s learning.” Direct instruction also limits a child’s creativity, problem solving, and openness to ideas beyond the situation at hand. This is true when the instruction comes from parents as well as teachers.

As Wendy S. Grolnick explains in The Psychology of Parental Control: How Well-meant Parenting Backfires, research shows that rewards, praise, and evaluative comments actually undermine motivation and stifle learning in preschoolers as well as school-aged children. This is true when those actions come from parents or teachers.

Highly instructional preschool programs have been studied for years. Although they’re more popular than ever, the outcomes don’t hold up under scrutiny. 

Researcher Rebecca Marcon evaluated children in preschool and kindergarten programs falling within three categories: play based, academically oriented, and those that combined both approaches. Her study checked up on the students as they progressed through primary school. Students who had been in early academically oriented programs gradually declined, falling  behind their peers. Children who’d been in a combined approach program also showed achievement gaps. Who benefited the most? Children who’d been in play-based programs. Their academic success was greater than those in the other two types of programs and continued to gain. Marcon concluded,

Children’s later school success appears to be enhanced by more active, child-initiated learning experiences. Their long-term progress may be slowed by overly academic preschool experiences that introduce formalized learning experiences too early for most children’s developmental status. Pushing children too soon may actually backfire when children move into the later elementary school grades and are required to think more independently and take on greater responsibility for their own learning process.

Another study confirmed that future success has to do with the kinds of abilities gained  through child-initiated, exploratory play. Compared to children in non-play-based preschool programs, the play-based group of children exhibited greater self-control,working memory, flexible thinking, and relational ability. These traits have more to do with academic success than testable abilities in math and reading, even more than IQ.

And when researchers followed high-risk children who attended different preschool environments they found even more resounding results.  Some children were enrolled in an academic setting, others in a child-initiated play setting, and a third group in a preschool that balanced both approaches. By the middle grades, children from the play-oriented preschool were receiving the highest grades. They also showed the most social and emotional maturity.  Those who had attended the academic preschool lagged behind in a significant way— poorer social skills. The differences became more apparent as these children got older. By age fifteen, students from the academic preschool program showed twice as much delinquent activity as the other two groups. And in adulthood, former students of the play preschool and balanced preschool showed higher levels of success across a whole spectrum of variables. The academic group did not attain the same level of education as the play group and required more years of treatment for emotional impairment. They also faced more felony arrests than the other two groups.

We know that free play, now so limited in the lives of most children, is actually essential for learning and character development. We also know that children learn more effectively when they’re the ones in charge of self-regulating, what is now called the “Goldilocks effect.”

My daughter mostly remembers the toy dinosaurs from preschool. I hope that pushing academics on toddlers itself becomes extinct.

preschooler resistant, non-academic preschool, damage of early instruction, self-directed early learning,

Image CC by 2.0 by Kevan

Additional resources

Why Are Finland’s Schools Successful?” by Lyn Nell Hancock  Smithsonian Magazine September 2011

Play: How it Shapes the Brain, Opens the Imagination, and Invigorates the Soul by  Stuart Brown and Christopher Vaughan

Einstein Never Used Flashcards: How Our Children Really Learn–and Why They Need to Play More and Memorize Less by Roberta Golinkoff, Kathy Hirsh-Pasek, and Diane Eyer

The Power of Play: Learning What Comes Naturally by David Elkind