By Nancy Rones
Every inch of progress that Ryan Kalkowski makes in his battle against autism gives his parents new hope — and new determination. In this month’s installment, we look at how far this little boy has come, how far he still has to go, and what his family is willing to sacrifice to get there.
In the prevent installment of REDBOOK'S Living With Autism series, Nicole Kalkowski was amazed and overjoyed when she began witnessing signs of progress in her little boy. After Ryan started speech and occupational therapy and went on a gluten-free, casein-free diet, a spark returned to his eyes and he regained some of the skills and habits that autism had stolen from him — he began feeding himself and hugging his two sisters again. This month, we watch Ryan delve deeper into treatment as his family anxiously holds their breath, waiting, hoping, and fighting for more progress each day.
It was a moment that might not have been as magical to another mom. One Tuesday morning in late January, Ryan Kalkowski, who was 2 at the time, and his 36-year-old mom, Nicole, were in the family room of their Las Vegas home with three therapists from Nevada’s Bureau of Early Intervention Services (NEIS), the state agency that provides services such as occupational and physical therapy to children under 3 with developmental delays. At the session, Ryan — who’d begun to lose some of his language and social skills at 17 months, what’s often called regressive autism — was smiling and putting simple sentences together, such as, “I can do it.” The therapists were amazed at how spontaneously he was speaking. And when the group, Nicole included, sang “The Wheels on the Bus,” Ryan did the “all through the town” line by himself.
Five minutes later, when Nicole walked to the bathroom for a tissue, she heard cheering and rushed back. Her son barreled over to her, arms open. “Ryan just asked, ‘Where’s Mommy?’” said one of the therapists. This was huge for Nicole — it was the first time since Ryan’s regression that he had called her “mommy.” Wishing she’d heard it with her own ears, Nicole picked Ryan up, hugged him, and said tearfully, “Mommy is right here.”
Not that kid in the corner anymore
Although Ryan is still clearly in the grip of autism — he isn’t yet pointing at things, and he sometimes flicks his fingers in front of his face when he’s bored or in stressful situations, an autistic symptom known as stimming — his treatments are definitely helping. He no longer spends his days stuck in his own world; he’s excited to play with his mom, who doesn’t have to coax him out of the corner with toys or activities anymore. Instead, Ryan chooses things to do — for instance, the cherub-cheeked boy pulls Nicole over to work on puzzles with him, or to make music on a toy piano.
Each week, his language improves. Although he does sometimes say words and phrases repeatedly (vocal stimming), Nicole points out that lately, she’s been able to redirect this habit into more appropriate behavior, such as singing and humming. And while some days Ryan is dramatically quieter than a typical peer, at other times he’s a chatterbox. Besides “mommy,” the toddler has regained other words lost during his regression, such as “juice” and “ball.” And he often comes out with new phrases. One recent example: “Okay, I go to table.”
The Kalkowski family is also thrilled by how affectionate their little boy has become. He used to push his mother away, but now, like any typical toddler, he gets upset when she isn’t around. “The other day, I walked in from the movies with my daughters, and Ryan was at the door with a big smile and his arms out, saying, ‘Hold you,’” says Nicole. “Then, he started kissing me. I can’t put into words how awesome that feels.”
There are still heartbreaking times when Ryan rebuffs hugs and needs space, but many evenings, he cuddles on the couch with his dad, 38-year-old Tim, who owns a contracting business. Sometimes, when Nicole and Tim are tired and snapping at each other, Ryan pulls them together for hugs. And at the playground, Ryan loves going down the slide with his sisters, Ciera, 9, and Ella, 6. “Ryan is like the glue of our family,” says Nicole. “His therapists are surprised that we’re seeing so much progress so quickly.”
Nicole attributes Ryan’s improvement to several factors. First, there are his therapies and special diet. Plus, every three days, Nicole gives Ryan injections of B12 supplements, a treatment recommended by a DAN! (Defeat Autism Now) doctor — a health-care practitioner who detects underlying medical conditions that may be causing autistic behaviors and treats them through diet and supplements. Because little is known about this perplexing epidemic — and because what helps one child on the autism spectrum may not help another — it’s still impossible to determine with any certainty which factors lead to successful treatment
Therapies and medication aside, Nicole also gives some credit for Ryan’s success to her new mind-set. “As I became more secure with the situation and cared less about what others thought, I told myself, I need to pull Ryan into this world, and not let him stay in his other world,“ she says. Nicole began exposing him to everyday situations that he has trouble handling, such as grocery shopping. It wasn’t easy. At the supermarket, where the noise and crowds overwhelmed him, he threw himself on the ground, kicked, and tried to bite Nicole’s shoulder. But Nicole stood tough. “I knew I couldn’t leave the store until he stopped crying or else I’d just be giving in to the behavior,” she says. Countless tantrums and power struggles later, Ryan is now able to handle a 45-minute shopping trip.
Still work to be done
Every step forward gives Nicole hope that she’s getting back the son she once knew. Yet Ryan is still far from being developmentally on par with his peers — a contrast that comes into focus during weekly NEIS playgroups. Ryan is the only child with autism in the group; the rest of the kids are “typical.”
At circle time, when all the children take turns announcing their own name, Nicole is the one to say, “Ryan.” And when others follow the movements dictated in a song (such as “clap your hands”), Nicole helps him clap — something he once did on his own. “When you go down a list of all the things that Ryan isn’t doing well, no matter how small the skills seem, it all adds up to autism,” says Nicole. “Though I have hope for Ryan’s future and absolutely love him as he is, I’m still heartbroken over autism.”
Just as Ryan is the “different” child in the playgroup, Nicole feels like an outsider among the moms there. “They’re nice, but they don’t really interact with me,” she says. “I feel like they see me as ‘the lady who has the kid with autism.’” Nevertheless, Nicole knows that exposing Ryan to the structure and social environment of the group will help in his eventual transition to either a mainstream preschool classroom or one that has a mix of typical and developmentally delayed kids. “Ryan would never get better if I put my feelings of hurt before him,” says Nicole. “I have to just stay focused on how far he’s come.”
The Kalkowskis don’t want to let time or money stand in the way of Ryan’s recovery either, so they’ve decided to use an intensive, in-home behavioral therapy called the Lovaas Model of Applied Behavior Analysis (ABA). The therapy works on a variety of skills, from following simple instructions to socializing, and relies heavily on positive reinforcement (praise, for instance, and fun trinkets, such as a spinning top) when a task is completed. Every day, a tutor works with Ryan at home; he has a team of six tutors, including Nicole. Currently, Ryan receives about 30 hours of Lovaas ABA a week; gradually, he’ll work up to 40.
For Nicole, Lovaas is like running an in-home school and business. She has to keep track of the therapists’ notes and data, write their paychecks, and log their hours and checks for tax purposes. Plus, she’s left with lots of filing each day.
The program’s cost — which isn’t covered by the Kalkowskis’ insurance plan — is a big budgetary strain. Their income level is too high for them to qualify for many sources of financial aid; luckily, they received funding that covered the $3,500 mandatory two-day training of all the tutors, including Nicole. Still, the couple pays $2,000 a month in fees, plus the tutors’ salaries, which run from $10 to $15 per hour.
“We’ve had to make sacrifices,” says Nicole. “The trip we planned to Disney this spring was canceled. But this treatment is backed by scientific research, and we know the education that Ryan gets now will impact the quality of his whole life.”
The gamble is paying off. Though he cried at the start of the two-day training workshop, he adjusted by the second day. After hearing cheers when he stacked blocks the way his tutor requested, Ryan ran to his parents and said, “I’m Daddy’s big boy!” Says Tim, “To hear my son choose those words to celebrate his feeling of pride was incredible.”
After a month of working with his tutors, Ryan has made great improvement. For example, he’s learned how to sit in a chair and listen to instruction. “Now, when I say, ‘Come here,’ he comes,” says Nicole. “I’m not always chasing after him. Even his oldest sister, Ciera, has seen a difference. The other day she randomly said, ‘Mom, Ryan is doing so much better. Therapy is really working.’”
Nicole is confident that the skills Ryan is gaining are preparing him for preschool in the fall. She wants him to be in a program where he’ll interact with at least some typical children. “Ryan does well around typical kids and could pick up more language and social skills from them,” she says. “In an autism classroom, he might be exposed to more aggressive behaviors.”
Because Nicole anticipated a battle in getting the placement she wants for her son, she didn’t waste time starting the process. First, she and Ryan went through a grueling four-hour assessment with experts from the school district to determine where Ryan was developmentally — information that would be used to decide which program he’d be placed in. Nicole was crushed as she listened to all the skills that Ryan was lacking; she was told, for instance, that typical kids his age use words that end in “ing.”
In the days before Ryan’s birthday on April 5, Nicole met with the school district again to go over his assessment and to come up with his Individualized Educational Program; this plan would establish his educational goals and ultimately his placement. To make sure Ryan’s needs would be met, Nicole brought along a paid legal advocate who is well-versed in Nevada laws surrounding special education.
The school experts began rehashing Ryan’s weaknesses, but because of a scheduling conflict, the meeting was cut short, so the group met yet again, a month later. This time, emotions ran high. “I told the board that I thought Ryan would do best in a class where some kids were typical and others had some delays,” says Nicole. “But when one expert said a full-day autism program was the right choice, I broke down crying. I said, ‘I wouldn’t ask you for something if I didn’t think my son would be successful. He has the legal right to prove you wrong.’ Other members of the board sided with her, and the district decided to place Ryan in a mixed disabilities class — a two-hour program, four days a week; he’ll start with one hour per day. “I’m happy that when he begins school in September, I can feel positive, not angry, about his placement,” says Nicole.
Amid all those tense meetings, Nicole temporarily shifted her attention to a more celebratory event: Ryan’s 3rd-birthday party. She and Tim were initially hesitant about throwing a big party at an indoor play gym, worrying that the people, loud music, and new place might be too much for Ryan — but in the end, they just went for it. They invited 16 children, including their friends’ kids, Ryan’s sisters, and a few children from church. At the party, he and the other kids climbed on padded equipment, popped bubbles, and snuck underneath a big parachute. When Nicole asked, “Are you having fun?” Ryan replied, “Yeah, I do.” Then it was time to sing “Happy Birthday.” Ryan, without protest, sat in the middle of a circle, surrounded by friends and family, smiling all the way through.
Originally published on June 17, 2008
Related content on redbookmag.com
- Part 1: Losing My Little Boy to Autism
- Part 2: What Autism Does to a Mother
- The Mom Moment Blog
- Warning Signs of Autism
- How to Prevent Food Allergies