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Arrested development: Day-to-day struggles of autistic children affect entire family

Shawn Doherty  —  7/02/2008 11:11 am

Grace Keegan stopped kissing her mother when she was 2 years old. Sam Lacey, 4, doesn't know how to tell his dad he is hungry or in pain. Calvin Aerts, 8, bit his grandmother so badly her arms are scarred permanently. Josie Wagnitz is 10, but can't play with dolls with her sister.

These four youngsters are among the hundreds in the Madison area who have autism, a devastating neurological disorder that made news last month when a young man afflicted with it spent seven days lost in the northwestern Wisconsin woods. Autism impairs communication and socialization skills. It almost always strikes early in life and when it does it frequently wreaks havoc on the person's entire family.

Living with autism

Grace, now 14, has made strides but one recent Sunday she was having a bad day. When her mom tried to calm her, Grace pushed her away and ran up to her room, where she moaned and banged her arms on the floor. "It's a circus," said Vicki Keegan during a recent interview in her DeForest home. "But we try to laugh about it. If you don't laugh, you'll cry. And I am not going to let this be a sad house."

Autism is increasing at an alarming rate in Wisconsin, as it is in the rest of the country. Today an estimated one out of 150 children nationally receive the diagnosis, up from 1 in 1,000 a couple of decades ago. That is more than have Down syndrome, juvenile diabetes and cancer combined, according to Kathryn Luttkus, grants manager of Easter Seals of Southeastern Wisconsin. The disease has emerged as such an urgent health issue that Easter Seals has replaced polio, its famous poster cause, with autism.

In the 2004-05 school year, 4,361 (0.44 percent) of Wisconsin's students received special education services for autism -- double the number in 2000. Experts debate whether the increase is a genuine epidemic, or the result of a broader and better system for diagnoses. Wisconsin is one of 11 states participating in a study by the Centers for Disease Control that might answer that question. The study could resolve the mystery over whether autism is caused by genetics, the environment, or both.

Wisconsin has responded to the challenge with a network of intensive therapy and other services, but parents say more must be done. Early intervention is the key to progress for these children, yet the state program to provide families with intensive in-home treatment has a nearly two-year waiting list. Much to the disappointment of many of these families, a bill advanced by Gov. Jim Doyle several months ago that would have given parents other options by requiring insurance companies to cover treatment for autism -- as 12 other states do -- died after months of debate.

In Madison, the school district has for the most part made good on a commitment to "mainstream" children with autism into regular classrooms. And Wisconsin has been selected as one of three states in the country to pioneer new approaches to teaching autistic children. Starting next fall, a classroom in Verona will be one of several in the state selected to pilot the project.

Most Wisconsin parents struggling to help their children cope with autism never heard of it when they were growing up, unless they saw the 1988 movie "Rain Man," in which Dustin Hoffman plays an endearing savant with autism.

In real life, few autistics can compute complex square roots in their heads or memorize the phone book like Dustin Hoffman's character. In fact, an estimated 25 percent to 75 percent have a cognitive disability. The extent of their retardation is not at all clear, however, since so many of these children are unable to communicate. A central challenge for many families is identifying the optimum way to reach their children, from sign language to intricate word processors that autistic children can use to "talk."

"We tried so hard to find the magic key to reach her," Vicki Keegan said of Grace. "We just knew somewhere inside that sad girl she was still in there."

Autism spectrum disorders is actually an umbrella term that covers a group of related brain disorders, all of which affect an individual's ability to speak, communicate and relate to others.

These disorders impair language and learning, stunt social interactions, and can result in odd and repetitive behaviors. Children with Asperger's syndrome, for instance, unlike children with normal autism, develop language skills yet still tend to avoid friendships and even eye contact with peers. They also tend to develop quirky but often brilliant fixations and talents, like memorizing square roots, for example, or playing a Beethoven piano concerto by ear.

Many autistics display weird body movements and stimulating rituals, called "stimming." McFarland mother Pam Aerts realized something was "off" when Calvin, then a toddler, showed no interest in peek-a-boo, yet would spin, twirl and toss his baby socks for hours. Calvin swallows water and spits it back into a cup, arms flapping like wings, over and over again. Sometimes he spits it on the floor.

Four out of every five children with autism are boys. About a third seem normal as babies, only to suddenly regress between the ages of 18 months and 4 years.

"With normal brain development, different systems are supposed to kick in. But the brain development of these children goes off on a different pathway, and something fails to turn on," said Dr. Tina Iyama, a developmental pediatrician and professor of pediatrics at the University of Wisconsin-Madison.

Once a child is diagnosed with autism, it is up to parents to navigate a complex and overlapping system of private and public services. There is no road map and no control tower. Caretakers juggle schedules with dozens of doctors, respite workers, social workers, psychiatrists, psychologists and every kind of therapist available -- occupational, behavioral, speech, physical, play, music, art.

Chris Lacey of Deerfield says scores of different therapists, doctors and aides have worked with her son, Sam. Vicki Keegan counts 51, including "church ladies" she recruited herself. Moms have to be "Mama bears," Keegan said, and hustle for help. Right now, she's recruiting another aide yet again -- the last therapist quit after Grace bit her.

Complicating these parents' job is the tremendous controversy that characterizes so many aspects of autism. Experts debate about whether the increase in autism cases reflects a real "epidemic" or new diagnostic criteria that re-labels children who formerly were called mentally retarded. They argue about whether the condition can be caused by the mercury in vaccines. They differ on which of the dozens of therapies in an alphabet-soup of options are bogus. There is even an autism rights group, Aspies for Freedom, that condemns the notion that autism needs to be "fixed."

But one thing everybody agrees on is that the best hope for improvement is quick and early intervention. The state's Medicaid waiver program, Children's Long Term Support (CLTS), currently provides up to 35 hours a week of intensive in-home behavioral therapy to 634 Wisconsin children between the ages of 2 and 7. (Other programs and support for children not in CLTS also are provided by the state, as well as counties and some private providers.) Some families move to the state just to enroll in the program. But they are in for a rude surprise: one Milwaukee-area family who moved here from Florida was told it would take two years to get off the waiting list. Currently 392 families -- more than half the number of families who are receiving the therapy -- are on that list.

"Parents are panicked," said Pam Stoika, a psychologist and the director of one of the programs that offers therapy under the state waiver program. "They feel they are losing out on this precious window of time. It is up to them to fill the gap."

Caring for autistic kids at home requires 'round the clock parental supervision.

Researchers at UW's Waisman Center say the flexibility and humor exemplified by moms like Vicki Keegan, who rolls her eyes at her daughter and calls life in her family a circus, yet always has time and patience to give her a leg massage or make up silly lullabies, are essential. Recent research suggests that while some Wisconsin families fall apart under the strain, most use ingenuity, determination and humor to get through the rough times.

"These are resilient families dealing with difficult challenges with tremendous grace," said Dr. Marsha Mailick Seltzer, director of the Waisman Center, who is currently studying some 400 families from Wisconsin and Massachusetts for the largest longitudinal study ever done on autism and family dynamics.

It takes a toll. Seltzer reports that a team of her researchers tracked levels of cortisol -- a marker for stress -- in a group of 100 Wisconsin parents of autistics last year. During the eight days of the study, researchers found irregular cortisol patterns compared to the patterns of a control group. That is no surprise to Keegan. "Some days are so, so hard. This is a marathon, and sometimes I wonder if we can keep going," she confided during an unusual moment of discouragement. But then, a moment later, she told a funny story about her daughter, who she calls "Miss Grace" and "Sassy Girl."

Stress and exhaustion exact a toll on marriages, too. When Grace Keegan was diagnosed with autism, her parents were given another bit of grim news: "We were told there was an 80 percent chance our marriage wouldn't last," recalled her dad, Shawn. Just last week the couple celebrated their 25th wedding anniversary -- at the neighborhood Culver's, the one place the couple has found time to escape to over the years.

Parents worry about their other children, too. Siblings grow up witnessing the shrieks and the banging. They can become targets of the violence displayed by some, though not all, autistic individuals. Their parents have little time to pay attention to them.

"I wish I didn't have to have him," Jamie Lacey, 6, said about his little brother Sam. "I wish he didn't have autism. I wish he could play with me." Yet just last week, Sam hugged Jamie and laughed at him for the first time ever. "There's the tiniest beginning of a real relationship," reported their thrilled mom, Chris Lacey.

For 13-year-old Sarah Wagnitz of Madison, A is for annoying, not autism. "Josie is SO annoying," she said. "I would hate her even if she was normal. She makes a mess and pulls my hair. She took my stuffed dog and threw my shoes over the back fence. She even wrecked my Sponge Bob CD. She is SO annoying."

Chances are Sarah and Jamie will grow up just fine. "We don't see any serious mental health problems in siblings," Seltzer said. "Often, they gain coping skills and an appreciation for differences that usually come later in life." Indeed, when Josie ran into trouble trying to toast a waffle in the kitchen, Sarah was the first to jump up and help.

The greatest fear these parents share is what will happen to their children when they are no longer around to care for them. "I can't live without your kisses," Grace said to her mother last month, before heading off to summer camp in the Dells. But that separation was only for a week. What will these kids do when they grow up, and the separation is forever?

Like most of these children, Josie is doted on by her family. "I'm doing okay. I can survive this. If only I knew she would be safe forever, when we are gone," said her mom, Mary Buckland.

"We must figure out a way to protect her."

Experts say these families find the way. "These parents are the real experts," Stoika said. "They are unsung heroes."

Here's how four families are meeting the challenge.

Santa always comes: Calvin Aerts

Pam Aerts spent her 2006 Christmas season shopping for a mental hospital.

Calvin, her 6-year-old autistic son, was acting out violently but no hospital would accept him. She called Meriter, Rogers Memorial, West Allis Clinic, Aurora Psych, and St. Lukes/All Saints Mental Health. All of them said they couldn't handle the child's autism, cognitive delays and behavior problems.

If you meet him today, Calvin looks like a leprechaun -- a ruff of brown hair, long lashes and green eyes. He's likely to wink at you and might even give you a kiss. But that winter he was a "terror," his mom said. He was breaking windows, throwing furniture, and attacking everyone in the family, even his little brother Dalton, 4. It took both Pam and her mother Alice to restrain him. He knocked the Christmas tree down so often the family just left it on the ground with the broken ornaments.

Still, the family, who lives in McFarland, was determined to celebrate Christmas.

"Santa always comes," Pam said.

Calvin's social worker finally got him on the waiting list for Winnebago Mental Health -- but they had to wait another grueling 21 days before a space opened up.

When they left Calvin inside the big brick institution, he tried to run after them. Pam was weeping, but she did not turn back. "There was no other place to put him, nothing else we could do," she said.

Calvin stayed on the unit for 5 months. When he came home, he was so thin he had to hold his pants up so they wouldn't fall off. Pam and Alice unpacked his suitcase and found the book of family photos they had sent him in the hospital. Pam hadn't been sure he would read it, that he would miss her. But Calvin had looked at the album so often it was falling apart. That made Pam weep, too.

Now there is plexiglass on the home's windows and locks on the doors. An extra room downstairs has been turned into a safe room for Calvin with a padded floor and walls. Calvin still bites his hands and spatters the walls with blood when he is upset, but his rages occur much less often now, thanks to a new medicine.

His grandmother watches him during the day, since Pam and her husband work full time. "Give me a kiss, silly boy," she'll say. And Calvin will look at her, or wink, or give her a kiss. Before he was so unpredictable he might have bitten her instead. Alice still has scars on her arms to show for it. Calvin's social worker suggested she wear expensive protective sleeves, but Alice found a pair of workman's gloves from Farm & Fleet for $6.50 instead.

Alice is teaching herself sign language, so she can teach Calvin. She just taught him how to sign "chips," his favorite food. She's relieved he is relatively calm and happy. But she and Pam worry about what they'll do as he gets bigger and stronger, if he goes into a downward slide.

"I know it's going to happen again," she said. "Then where can he go?"

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For the love of Josie: Josie Wagnitz

The first thing Mike Wagnitz does when he arrives at his Madison office every morning is Google "thimerosal" -- the mercury-based preservative in the vaccines he believed poisoned his daughter.

Last time he checked Pub Med, an online database of medical articles, there were 1,243 studies on the topic. Wagnitz can tell you about most of them, too, from the Australian study that suggested breast-fed babies whose mothers ate fish ended up with mercury in their blood, to a case study of mercury poisoning in Israel.

He has attended dozens of conferences on autism and dogged reporters with his conviction that doctors, drug companies and public officials are covering up the dirty role vaccines play in autism. Wagnitz knows he is developing a bit of a reputation in town for being a nut, but he doesn't care.

It is all for the love of Josie.

When she was 2, his sweet girl came down with a mysterious and terrible ailment. Seizures left her close to death. Then the medicine that was supposed to control them created another problem. Josie started pulling out her golden curls and banging her head against the wall. "It was like having a wild animal in the house," recalled Josie's mom, Mary Buckland. After a year of "hell," Mike says, Josie was diagnosed with autism.

Different parents find different ways to cope. Mary coordinates her daughter's complex schedule of therapies and lavishes her with homemade quiche, foot rubs and patience. Mike does, too -- Josie loves him more than anyone in the family -- but he also makes it his mission to track down the cause of her condition.

Today, he refuses to call Josie's disorder autism. It is a devastating injury, he says, left by vaccines. And he is determined to find a cure. "I'm a little obsessed," he admitted. "This is my purpose in life."

So far Josie, now 10, has been through 30 different therapies -- from hyperbaric pressure treatments to a horrible session that involved turning her upside down in a swing. No cure yet, although last week after she started a new gluten-free diet she said "spaghetti" for the first time. But Mike will keep looking.

In the meantime, Mike and Mary are determined to give Josie and her sister Sarah, 13, the same good times other Madison kids enjoy. Mary shops for clothes at Target with Sarah, so she can have some mom time, too. Mike explores Olbrich Gardens with Josie, even if she does try to jump in the fountains every now and then. And he'll be darned if he stops taking her to another favorite haunt, Monona Terrace, just because the security guards glare when she rides up and down the escalators over and over again.

These expeditions are easier now that Josie has learned to hold hands and not dart into traffic. On a recent stroll to the park, Josie greeted the world with gusto, grabbing everything from an empty beer bottle to an interesting stick to, unfortunately, a plastic blue bag left in the garbage by a dog owner.

"Hi friend!" she said, to no one in particular. Her joy is infectious. Said her dad, "She's what keeps me going."

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Losing Grace ... and finding her again: Grace Keegan

Grace Keegan was the spitting image of her big brother during her first two years of life.

"Everything was wonderful. She had 10 fingers, 10 toes, and 10 on her Apgar," recalled her mom, Vicki, referring to the perfect score Grace received on the standard health assessment given to newborns. "And then she started going away from us. She was fading, fading, fading."

A third of children diagnosed with autism seem fine as babies, and then they change. Autism experts describe this phenomenon as regression. Parents describe it as a cruel aspect of a cruel disorder. Grace growled instead of babbled. She forgot who her dad was. When her mom kissed her, she no longer kissed back. "It was unbearable. She'd been so normal, and now I was losing her. And I didn't know if I'd ever get her back," Vicki said.

It took a slew of doctors eight months to diagnose autism. Desperate, Vicki went to the public library in DeForest for more information. She found one book on autism, and it only scared her more -- their best hope for progress was early intervention. Yet they had already "dinked away precious time" seeking a diagnosis, and now Grace was on a 12-month-long wait list for the state's intensive therapy program.

So Vicki invented her own therapy.

"I was going to be damned if I lost what I had left of her -- the eye contact, the social connection," Vicki recalled.

Vicki sent her older two kids out to play and put Grace in a backyard swing to calm her. Neighbors joked about going to sleep and waking to the squeak of the swing.

"I would push her and push her. I called it Mom Therapy. It was all I could think to do, and it's how I got through," Vicki said.

The following years were a blur of therapists (Grace has been through 51), sleepless nights (one December she slept only one out of 31), and rages (Vicki's arms still bear the scars).

Finally, her parents tried a new medication. "A miracle," Vicki said. Grace started to sleep. And she focused better at school, where teachers assumed Grace was cognitively disabled and assigned her to the classroom "with the kids in diapers," Vicki said.

Vicki got her daughter mainstreamed in a regular classroom. When Grace was 8, a therapist tried a new communication device -- a word processor. "What do you want?" her therapist typed. With help, Grace moved her finger between the keys: J-O-K-E. The therapist typed in a chicken crossing the road joke, and the little girl laughed.

"All of a sudden, this child is talking and talking to us, like her brain exploded," Vicki said.

Grace caught up to her class in math and reading. "It was so frustrating when I was little because I am smart but people thought I was stupid. Typing totally changed my life because it gave me the voice I never had," Grace wrote in one assignment.

One day, Vicki got a call from the principal. In the past, these calls meant that Grace had attacked a classmate. This time, the problem was she was sassing an aide on her typing machine. Vicki had gotten her daughter back.

In a way, it was easier for the family when they didn't know what Grace was thinking, when they didn't even know that she could think. This summer, she's going through another hard stage. "She's become more and more aware of her autism in the last few years, and it's painful to watch," Vicki said.

Grace is now 14. She complains about the "stinky little boys" in her class yet yearns for a boyfriend. She complains that her medicine makes her gain weight, yet refuses to wear a bra.

She wants to be treated like a grown-up, yet fights with her mom. She longs for sleepovers, but wonders who to invite.

This could be normal behavior from an adolescent who loves French fries and Target and wants to travel to Africa one day to see an elephant. But Grace is all too aware that she is more than a normal teenager. She is a girl with autism and big dreams.

In a school essay she calls "My Future Dream," she writes: "In my dream future I would not be autistic and I would be able to talk. I would go to college and I would write books about autism to help other kids that are autistic. I would live someplace warmer than Wisconsin like Africa. I would have a swing in every room because I like to spin so much. I would hire someone to make me a bed that spins too. I really wish my dream future would come true."

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The whirling dervish: Sam Lacey

Sam Lacey is a human tornado on tiptoe.

Whirling, spinning, twirling, darting, jumping, climbing -- the only time this kid stops moving is when he sleeps, and he doesn't do that very often. Half the photos in the family album are blurry. "We need to hire a sports photographer," Sam's mother, Chris, said.

It is around 10 on a clear June morning, and Sam is in the backyard of his Deerfield home. He has been up since 2, and Chris is tired. "I'm always exhausted," she said. She needs to watch Sam, 4, constantly. Otherwise he might try to scale the fence or push through the rails on the backyard deck or climb the refrigerator or run out through the front door into traffic.

Sam has plenty of toys to play with, but they are all in a box in his bedroom closet. He doesn't know how to play with them.

There are so many playthings in the backyard -- plastic cars, sandboxes, slides, baby pools -- that it could be a nursery school. Sam tiptoes from one thing to another, and then back again. Like many children with autism, he can't bear the feeling of placing his entire foot flat on the ground. Chris says he may need casts on his legs, they are so deformed from his unusual gait.

Sam hurls down the slide and grins. "Aya-ada-aya-ada!" he said. "Again?" his mother asked, before putting him back on the slide. At around 10:30 his mother opens the gate of the high fence built to keep Sam inside and safe. Sam tiptoes to the front of the house, and before his mother can stop him, darts to the dish of dog food and puts some in his mouth.

"No, Sam, ick!" Chris said, pulling it out of his mouth. He is hungry because he is on a liquid diet due to intestinal problems. "A-da-da! A-da-da!" Sam said, loudly.

Chris distracts him by putting him into a swing, his favorite thing to do. She pushes him high and a big grin spreads across his face.

There are ten swings altogether inside and outside of his home. His favorite is a swing in a special room fixed up for him with a trampoline, swings, and plenty of pads on the floors and walls so he doesn't hurt himself as he throws his body around.

By now it is close to 11 a.m. Sam's therapist arrives and takes him to the park, where she chases him across the grass, spins him in a merry-go-round, and encourages him to roll a ball back and forth. When Sam was very young, all he wanted to do was to run back and forth on a carpet runner in the kitchen. Now his therapist is trying to teach Sam to include others in that game.

Sam receives 20 to 24 hours of intensive in-home therapy a week from seven different therapists. In addition, he attends a school for children with autism in McFarland, takes swim lessons, and travels to Madison for doctor visits and for speech therapy and something called cranial sacral massage. Even weekends are booked. A therapist accompanies the family on jaunts to the park, the library, and the bank to help Sam learn not to dart into the traffic or take off his clothes in public.

To keep track of the family's hectic life, Chris keeps a colorful spreadsheet of their schedules in her computer. Blue, the color of Sam's activities, dominates.

At noon, it's time for lunch. Angelica, an au pair the family hired from Panama, gives him a bottle. He is still for five minutes, and then heads down to the basement to swing. He spins and spins and spins until 12:30, when his mom takes him to a swim lesson. After that, it is off to school in McFarland. Chris spends that time in the public library, paying bills. Then it is time to go home and make dinner.

By 7:30, Sam's bedtime, she can barely keep her eyes open. She sings him "Frere Jacques" over and over, in French and Spanish and English, until he finally falls asleep. Finally, he is still.

But only for about four hours, and then it will be time to get up in the middle of the night again, give him his bottle, and start all over again.

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Shawn Doherty  —  7/02/2008 11:11 am