Waiting for Zander

The patience in autism

Zander Spitzer raced through the living room, shrieking at the top of his lungs. The 4-year-old climbed up onto the tall end table, spread his little arms wide and with a huge grin on his face and let go into a freefall, landing in an inflatable ball pit. He screamed in laughter as he made contact with the blue, red, yellow and green balls. Zander then got back up, climbed up on the table and did it all over again.

“Was that fun?” asked his mother, Tabitha Locher. Zander looked in her general direction, yelled a noise in his own personal language, and kept going.

Tabitha, sitting at the dining room table in their perfectly decorated Franklin home, appeared completely unfazed that her son, like a monkey, climbed every piece of their living room furniture, and subsequently tried his best to pull the tablecloth from the table where she was sitting.

“It’s like this every day,” she said, resigned to the struggles of trying to control an autistic child. He would understand when she yelled “no,” but he would look toward her, then return his efforts to the disruptive task at hand.

She and her boyfriend, Mike Spitzer, discovered Zander had autism when he was a little more than a year old. The three lived together, along with Tabitha’s daughter from a previous relationship, Taylor Locher.

Tabitha was Zander’s primary caretaker.

“He’s as strong as an ox. The older he gets, the harder he gets to manage,” she said.

Zander also had a form of sleep apnea that made it difficult to fall asleep at night.

“We’ve discovered there’s no pattern to his sleep,” Tabitha said, evidenced by the dark circles under her own eyes.

Sometimes he’d fall asleep at 7 p.m. and wake up at midnight. Other nights it would be down at 4 a.m. and up at 7 a.m. On particularly bad nights, Zander wouldn’t fall asleep at all and would stay awake for an exhausting 48 hours. After finally crashing, it would be impossible to wake him up. “He’s missed more school from no sleep than from being sick,” Tabitha said.

Zander attended Franklin Elementary in pre-preschool, a selective program designed to prepare children with disabilities for entering real school.
He interacted with other children who were blind, had Down syndrome or had developmental delays. Candy Stolt, his teacher, regularly performed one-on-one speech therapy sessions with him.

Tabitha received daily reports, detailing Zander’s activities and behaviors. “Tried to tell us something a lot today. Came when called,” read one, from May 6. The next day: “He sure does have a high pitched scream.”

The reports were like a forecast, predicting how he would behave at home. “You know if he’s going to sleep by what the sheet says,” Tabitha said. She kept all of the papers in an overstuffed, color-coded 3-inch binder, bursting with papers, progress reports, documents, information about specialists – everything she ever received or any research she ever did about Zander’s autism.

Zander consumed a hefty dose of medications each day. In the morning, she gave him Tenex and Parcopa – both to level out his anxious behavior and help him focus. Every day after school it was the same ritual – she held a screaming Zander to the floor for a dropper full of juice mixed with the medication. It was the only way to get him to take it.

At bedtime he got a triple dose of each, along with Neurontin and Melatonin. The last two were to make him sleep. More doses would come later if it didn’t take effect. “He takes enough medications to put down a 2200 lb. horse,” Tabitha said.

Caring for Zander was a full-time job, and it made it difficult to go out in public with him, nearly impossible to go on vacation. They couldn’t take him to a restaurant unless it was somewhere they could eat quickly, because Zander couldn’t stand to sit still. People have made comments to Tabitha, asking her why she couldn’t control her child. Zander’s screaming was so high-pitched and loud that it sometimes didn’t sound human.

“We tried everything”

He started out normal.

Zander passed every baby milestone early. He was walking by 7 months old. He spoke more than 70 words when he was a year old.
Once he was about 15 months old, it was time for Zander to have his first shots for flu and MMR – measles, mumps and rubella. A couple weeks later, Tabitha said, he started acting different. He used fewer and fewer words, and his behavior got more sporadic.

Tabitha said she had read about the controversial stance claiming the MMR vaccine is directly related to the onset of autism, but wasn’t buying it. “I don’t believe it’s MMR. I think there’s so much in it that it’s an overload on the system, like a gene is activated,” she said.

At first, Tabitha said she and Mark were in denial, refusing to believe their child could have autism. But Mark’s sister, a speech pathologist, saw Zander’s behaviors and noticed the tell-tale signs of the condition. She persuaded them to have Zander checked by his doctor.

His pediatrician didn’t think there was anything wrong with him. It was just the influence of having a much older sibling, he said, which could delay speech development.

So Tabitha let it go for a couple of months, hoping beyond hope that the toddler’s unusual behavior was a phase.

But as the couple tried harder to ignore it, Mark’s mother and sister applied more and more pressure for them to have Zander seen by a specialist.

They took him to Dr. Phillip Myers, an expert in autism. He sat in the observation room with Zander, trying to get him to play with a puzzle. The task was simple: Put three different shapes in the right holes. But Zander refused to do it. Instead, he played on a set of steps, running to the top to touch the wall then quickly running back down. The more Myers asked him to do the puzzle, the more irritated Zander became.

Finally, Zander was tired of the doctor bothering him. He rushed over to the table, slammed the pieces into the right spots – bam, bam, bam. Tabitha said he gave the doctor a look that said, “Are you happy now?” Zander continued to play on the stairs while the doctor sat there, astonished. Zander had never even seen a puzzle before then, and the doctor had never seen a child complete that challenge so quickly.

Tabitha said that after that, there was no question that Zander was autistic.

Despite the definitive diagnosis, she still took him to two more doctors, desperate for a second opinion. Two more tests provided the same answer.

She fell apart. She wanted to ignore it, but the only thing she could do was try and fight it. Immediately, she enrolled Zander in countless therapies, programs, cleansing rituals, routines, specialists – anything that might make a difference. “We’ve tried every kind of hokey thing you could think of,” she said.

For a long year and a half, Zander suffered through 60 to 70 hours of school and therapy sessions each week. Even in the evenings, specialists visited their home for speech therapy with him.

It got to be too much. Thousands of dollars and hundreds of hours had made little difference in Zander. Tabitha decided to scale back on the therapies. “At first, it was anything we could do. Finally, I was done. Eventually I was paying $55 dollars an hour to hear my kid scream.”

Over time, Zander’s symptoms began to lessen, so Tabitha decided to have him checked by another professional in hopes that something had changed.

She took Zander to see Rubin, a strict Amish man with a long, white beard who lived in an Amish community in Hestand, Ky. He could look into a patient’s eyes and within seconds tell him what was wrong or what problems he had. He looked deep into Zander’s green eyes, and his answer was simple: This child had autism.

A family divided

In the afternoons as Tabitha spent her time chasing Zander around the house, Mike slept. His third shift with the sheriff’s department made it difficult for him to spend much time with Zander, let alone Tabitha. She and Mike usually crossed paths when he was coming home and she was leaving to take Zander to school. But when he was home, Zander loved on his dad, curling up with him on the bed or climbing all over him as they played.

Mike loved his son, too. But he refused to acknowledge his autism.

“He still hasn’t come to terms with it,” Tabitha said. “He’ll tell him, ‘Boy, one day you’ll wake up talking.’” Mike’s training as a sheriff taught him how not to show emotion on the job. Tabitha said she thought that made him too good at becoming detached from the situation with Zander.

Most of the time, Mike chose not to take care of Zander and let Tabitha do the running around and the feeding and the teaching. But ultimately, he just wanted Zander to be happy. It made it difficult, because if Zander wanted a piece of candy, he would give it to him. With that one piece of candy, he would undo five days of teaching Zander not to beg for sweets, Tabitha said. Mike’s short temper easily could be lost as a result of his own poor sleeping habits, diabetes and what Tabitha thought could be undiagnosed Attention Deficit Hyperactivity Disorder.

Taylor, 16, bore resentment toward Zander. She cheered with Bowling Green Cheer Force, and the more difficult it became for Tabitha to take Zander to the competitions, the more events Tabitha had to miss.

“When he was born, she was jealous,” Tabitha said. “She says she understands, but I don’t think she gets it. He can’t fend for himself – she can.”

Taylor never willingly did anything with Zander. “I get tired of taking care of him when he goes through his spazzes. I’ll have bad days, too, you know,” Taylor said.

Tabitha’s only relief came at the horse barn where she worked while Zander was at school. In the peacefulness of her in-law’s horse barn, she was alone with the 55 Rocky Mountain riding horses, washing their long manes and tails and braiding them. Country music piped into each of the air-conditioned stalls.
Last fall, Tabitha started doing ghost hunts with a local club and working at the Octagon Hall. She even managed to get away for a four-day convention in Atlanta. But she sensed it would have the same fate as her past diversions. “It’s always short-versed. It’s easier to stay at home and deal with this than to try to get away.”

‘I’m still waiting to hear his voice’

When Taylor was a baby, Tabitha remembered wondering what her daughter’s voice was going to sound like. What would it sound like when her mouth started forming words instead of cooing noises? What would she say?

Zander learned many words before he started regressing because of autism. But Tabitha said she still felt like she hadn’t heard his voice. He spoke in his own made-up language, consisting of various slurring noises and grunts that represented different objects or needs.

Zander climbed up in his mother’s lap. Tabitha tried to get him to say a few words.

“Say ‘Zander.’”

“Ungh.”

“Say “Zander.’”

“UNGH!”

“Say ‘please.’”

“Ungh.”

Tabitha said she was looking forward to the day he could speak in sentences, to the day he looked her in the eyes and told her exactly what he wanted – no more guessing what was going on inside his mind.

He already exhibited more hopeful signs than many children with autism. He was loving, he would look someone in the eye, and he was very social. Most autistic children weren’t like that, Tabitha concluded.

And even though he wouldn’t speak, he could memorize a melody or a two-word phrase from a Disney movie.

But the reality was that this could be permanent, Tabitha said. She was hopeful he might learn to speak, but there was no guarantee it would get better.

“Every day there’s that expectation because he’s so close,” she said. It would be easier to deal with if there wasn’t so much hope, she said, but she was willing to dedicate herself to Zander. “I’m all that he has right now. If he has a chance at life, it’s going to be me fighting for him.”