A spectrum of success

“He was hitting all the development milestones that you would expect, and then one day when we weren’t paying attention it just went away, and we assumed that he was just a quiet guy. Well, no, it was autism taking affect,” Jeremy Malley said about his first-born child, Henry.

When Jeremy told the story of his son, Henry, 7, he began by saying that he and his wife, Lee Ann, started parenting a little later in life. Both were almost 34 years old when Henry was born. Life kept happening and Henry grew. Then one day when he was almost 3 years old Henry ended up in the emergency room after cutting his head in a fall at a hotel in Great Falls.

The cut ended up being the least of the Malley family’s concerns from that day.

During the visit, Jeremy told the ER nurse Henry didn’t talk, and her response was, he said, disbelief followed by a recommendation to get him evaluated and into services. She gave the Malleys a list of child development milestones, and this list, Jeremy said, drove home the fact that Henry was no longer communicating as he had been when he was 14 months old.

The Malleys arranged to have Henry evaluated as soon as possible, and within 20 minutes of the start of that examination his diagnosis was, yes, he has autism, also called autism spectrum disorder. This is a group of complex disorders of brain development, the Centers for Disease Control and Prevention says, with social and communication problems, as well as repetitive behaviors.

Despite their maturity as parents and their experience working with adults with developmental disabilities, Jeremy said, he and Lee Ann had missed recognizing the early signs of developmental problems their son had already displayed.

The Malleys’ surprise in finding out that their son wasn’t just quirky, but rather in need of intense, preferably immediate, intervention is not uncommon, neither are the stories of the families who sought help at the first sign of a hiccup in the path to reaching milestones.

A few short weeks after that ER visit, Henry had been diagnosed by a team of experts, was assigned a caseworker and was enrolled in Head Start because he had turned 3. He also had an individualized education plan, or IED, to help him coordinate his education, therapy and socialization needs between therapy sessions, school and home.

But this scene is not a wrap on the making of a perfect ending to a Hollywood story because Henry’s life, the Malley families’ life, is a work in progress like that of every child or adult on the autism spectrum and their families. Progress is measured in different increments, with celebration of their own successes and happiness.

“These kids aren’t stupid,” Jeremy said. “They’re just smart in different ways. It’s just a matter of reaching out and trying to find what it is that draws them in because you have to draw them in and get past all the other noise for them, to get down to what they actually want to learn.”

The Malleys knew about autism, but Henry didn’t display the characteristics they expected. He had started speaking before he became nonverbal, but even nonverbal he got his point across about his needs, Jeremy said, adding that he was surprised at some of the diagnostic tests Henry was asked to perform, such as simply walking and jumping.

Henry walked using primarily his tip-toes and when he jumped always landed with one foot ahead of the other, he said.

Malleys would have expected a sensitivity to sound or sensations, he added, but Henry seeks them out, even noises that other people find unbearably obnoxious, and finds comfort in similar tactile sensations, such as rhythmically tapping a clothes hangar on his arm. This repetitive action is called self-stimulatory behavior or, commonly, stimming.

Affecting 1 in 68 children — 1 in 45 if tallying boys only — the CDC describes autism spectrum in broad strokes as “characterized as varying degrees of difficulty with social interaction, verbal and nonverbal communication and repetitive behaviors.”

Difficulties in social interaction can be caused by not understanding boundaries, such as taking food off other people’s plates, Jeremy said.

This is not so bad for a 5-year-old but is inappropriate for a teen or adult, or even right now fine with family who knows him and is used to the behavior but has a potential for big problems if he steals food in the cafeteria at school, Jeremy said, adding that Henry doesn’t see the difference between at home and in public.

That means, though Henry’s family including his two younger siblings and his grandparents, don’t mind if he takes food from their plates, they have to think about the future and what his actions would mean in different stages of his life, his dad said.

Even graduating from only eating chicken nuggets at every meal to loving the spicy burn of chicken hot wings has to be weighed as a possible indicator of future actions, Jeremy said.

“Does that mean he will be seeking out extremes as a teen?” he asked.

Functioning adults with autism might still have to work to deal with issues that might not bother others, said Jay Getten, behavioral health counselor at Bullhook Community Health Center, who works with kids and families on behavioral interventions, such as picture schedules and figuring out causes of behaviors.

Adults on the spectrum continue to work on social skills such as understanding visual cues, including facial expressions and body language, and subtle innuendos or reading between the lines, he said.

This can include irony or sarcasm or some jokes. And sometimes people on the spectrum take things very literally, Getten added.

Changes also can be hard, Getten said, and routines can be crucial.

Henry rides the bus to school in the morning and goes to his grandparents Swede and Linda Malley’s house with his sister Abigail, 5, and brother Samuel, 3, after school gets out. Even getting a ride to school from his mom or dad will likely start his day wrong, Jeremy said.

Oftentimes, parents are seeing that children are not meeting developmental milestones, Getten said, in language or physical development, walking or fine motor movement. The children are rigid about or upset with changes, or they have attractions to patterns, such as lining things up and getting upset if that’s disrupted, they have sensory issues such as to textures, or they self-stimulate with flapping or rocking.

“Everybody with autism is different. That’s part of the problem,” said Jean Winchell with We Are Autism, a support group in Havre for families with children on the autism spectrum.

This is illustrated by a saying in the autism community: “If you’ve met one person with autism, you’ve met one person with autism.”

The biggest key in helping the children is early intervention, experts agree.

Quality Life Concepts is available to all children from birth to 3 years old with any type of developmental disability, said Jessie Fuzesy, autism specialist with QLC.

Head Start also has resources for children on the autism spectrum, who most often show signs of the disorder by age 3, and this is where Henry got many of his first therapies.

“Henry was enrolled within about two weeks from the time that we had the diagnosis and realized what was going on,” Jeremy said, adding, “He had an IEP in place, and he began receiving some of the therapy he needed. He was receiving more of the interaction with children that he needed. He was receiving, through Head Start, speech therapy and also working on occupational and physical therapy.”

Before enrolling in Head Start, Henry and the Malleys had been accepted into the Quality Life Concepts program because Henry was still younger than 3 years old at the time. His QLC caseworker, Fuzesy, has stayed with him through the years, Jeremy said.

“It is really, really, really remarkable how well QLC, Head Start and the school system work together,” Jeremy said. “When you enter those meetings, you really don’t know who — unless you know them — who’s working for who. They’re all working together, pulling in the same direction, to take care of the kids. It’s really remarkable, and I’ve read horror stories on the internet about people who have had awful experiences. That is not the case in Havre, Montana.”

“Havre public schools has very good resources for the kids,” said Winchell, who has a grandson on the autism spectrum. “They have people that work with them with special education. They’ve got their reading program for any kid that may be identified as needing help with reading. I know that they have paraprofessionals sometimes assigned one-on-one with the child so they really, I think, provide great services for the kids.”

Fuzesy said that even with all the growth she sees in the children from work with therapists, family and programs through QLC, school is a key part of the success.

“School is definitely extremely helpful for families with kids with autism,” she added. “We see extreme growth when they start school.”

The children are, as much as possible, integrated into the regular classrooms, then pulled out for special services they might need such as speech therapy and reading.

This focus on getting children with autism in the classroom is a lot different from 20 to 30 years ago when he was in school, Jeremy said, and this, he thinks, is a good thing — to help people learn to be more accepting and to help the children with autism grow socially.

“These kids want to have those same childhood experiences. They just can’t always express it and then need to be pushed into it,” Jeremy said, adding that he sees the need to include children like his son in everyday life despite complications. “He’s not always going to like everything, but he needs to experience things to find out what he does like.”

Providing services for children on the autism spectrum can be costly to communities and state and federal budgets — Henry usually has a paraprofessional with him at school to help him with lessons, take him to different classrooms and help keep him from being disruptive in class — but there is the potential for pay off, Jeremy said.

“In the long run, it’s going to be a huge cost savings if you’re not having to support my 30-year-old kid,” he said.

Still, for rural areas such as seen around north-central Montana and other parts of the state, the numbers don’t add up for providing some specialists and services like cities can offer, said Getten, and that can be frustrating for families and those working with them.

When Getten moved back to Havre from Salt Lake City he taught special education in Chinook schools and, like in Havre, had access to quality speech therapists, but that was the limit, he said.

“I would’ve given anything to have an occupational therapist, literally anything. Occupational therapy is such a crucial service for children on the spectrum,” he said.

While some rural families do have access to QLC services, many families rely on their own work and resources to help their children with autism, Winchell said.

“A lot of people in rural areas — and we’re all kind of rural, but certainly there are people and places that are more rural — have more challenges because, frankly, a real small school district isn’t going to have access to the kinds of numbers of paraprofessionals or speech therapists and special ed and psychologists available to that one school where a large school does have access to that,” she said.

But, she added, she has seen families find success, with determination to learn and access to resources, even the internet.

Some of the biggest changes in treatment in recent years is technology, said Getten, who counsels many families with children and adults with autism. Smart phones, tablets and iPods provide visual language assistance tools for autistic children, who most often struggle to communicate.

“In the past we’d use pictures as a supplement and there’s programs like Picture Exchange Communication System and that was a really effective (visual aid) tool working with children who have language delays, either expressive or receptive,” Getten said. “And with all this smart tech it’s pretty amazing how (children) are able to get their needs met because the pictures are built within the tablet, or the device, or the phone, or what not. They have an impressive Rolodex of pictures they can choose from.”

Smart phones can also be set up with visual timers that help those with autism know what activity comes next with a visual cue triggered with the timer.

These visuals are “absolutely crucial” for most people on the autism spectrum, Getten said, even for high-functioning adults who can get frustrated trying to express more complex thoughts.

Jeremy said he and Lee Ann research autism all the time.

“You want to blow a couple weeks of time, look at autism treatment on the internet,” he said. But, he added, it’s crucial to remain circumspect about the research. “I can’t imagine what it would be like to be an 18-year-old having a child with autism, let alone a skeptical 41-year-old that’s willing to call BS on most anything.”

Jeremy said one of his litmus tests when considering treatments for Henry is that it has to be something he would do or take himself. And some, he said, he has.

He called the family’s life with Henry an interesting journey — learning about autism, learning about Henry and learning what Henry has to teach people in his life.

“You have that little heart-to-heart with God, too, and I’d be lying if I didn’t say I did — where it’s like ‘why didn’t you do this to me, and not my kid’ because we all want all our kids to be that all-American kid,” he said.

At Henry’s school orientation last fall, Jeremy said, one of his classmates came up and said “hi” and gave him a hug.

“For a kid that doesn’t talk, he makes friends real well,” Jeremy said, also admitting that he got a little choked up over the interaction between the two boys.

“There has to be a shift in your mind set of what’s going to be success for your child. Instead of throwing the winning touchdown maybe he manages to go and sit through a football game and that’s going to be my success, that’s going to be our success, what we work towards,” he said. “So it changes what you consider success to be, and you have to change because if you keep those expectations you end up with a lot of resentment.”

---Family support---

We Are Autism

We Are Autism is a family-organized support group.

“We have parents, grandparents, caregivers that can come and discuss what works, what doesn’t, how things are going for their kids,” said member Jean Winchell, who has a grandson on the autism spectrum.

Open to all families with kids with autism spectrum disorder, the group has had families with kids from 2 years old to late teens.

We Are Autism is planning to hold two family-oriented activities a month, Winchell said.

We Are Autism partners with Quality Life Concepts to hold the annual Autism Awareness Fun Run, Walk and Stroller Roll to raise awareness of autism spectrum disorder and raise money for activities specifically tailored for children with autism and other developmental disabilities.

This year’s event was held April 22 and brought in more than 300 participants, said Jessie Fuzesy, autism specialist for QLC and event co-organizer. The event met the group’s fundraising goal of $5,000 which will pay for a two-day per week summer camp, swimming lessons, painting class, movies, gym activities and more, she added.

“We’re pretty creative, and we can really stretch a dollar,” Fuzesy said.

Winchell can be reached at 945-4892, Fuzesy at 265-2620, ext. 3.

BULLHOOK COMMUNITY HEALTH CENTER

Jay Getten provides behavioral health counseling at Bullhook Community Health Center for children and adults on the autism spectrum.

He said he works with kids and families on behavioral interventions and finding causes of behaviors. He added that he thinks one the important aspects of his counseling practice is working with families to help them find ways to deal with the stresses that come with a family member on the autism spectrum.

“Children on the spectrum can go on to accomplish great things,” he said, “but sometimes it’s kind of a difficult thing for parents to come to terms with because there are challenges kids on the spectrum face growing up, even if they are higher functioning on the spectrum.”

QUALITY LIFE CONCEPTS

QLC is a home-based service which provides caseworkers who go into homes to help families of children with developmental disabilities, including autism, work within natural routines of life at home, helping children meet developmental goals, Fuzesy said. Sometimes the caseworker will go to a therapy session with the family to better understand the therapy to be implemented, she added.

“Parents are the best teachers of their children, and a 30-minute therapy session once a week or once a month, there’s not much that’s going to happen during that therapy session. The change is going to happen at home,” Fuzesy said.

The Havre QLC is a branch of QLC in Great Falls and covers a region from Dodson to Chester.

This is an entitlement program for infants and toddlers under 3 years old, so they are automatically accepted, and for children 3 and older, QLC has both home- and community-based programs to help families, Fuzesy said, adding that the program currently has a waiting list based on a priority score for eligible children over 3 years old.

Last year, with $5,000 raised in an autism awareness fun run/walk, QLC was able to coordinate a number of activities — swimming, summer camp, movies at the theater, painting class and gym activities — for children on the autism spectrum as well as children with other developmental disabilities.

Fuzesy said some activities require extensive preparation time to work out the logistics to accommodate the wide variety of needs.

The summer camp, held at the District 4 HRDC Building for kids two days a week when school is out, is one of those activities.

“A lot of times kids that have more intense needs, they get really acclimated to school and transitions and schedules, and when summer shows up it’s really difficult for them not having that structure, so we try to provide something,” Fuzesy said.

They started meeting in April to plan the logistics of making the activities work, Fuzesy said, such as when they know an activity will make a loud child excited, staff can plan ahead to have a sound sensitive child in another area of the facility.

“Like anything, those first couple weeks can be a little rough, but the main point is that the kids are having fun and that they’re learning something new,” Fuzesy said.

The swimming program, which QLC is working to expand, is specifically important to children on the autism spectrum, Fuzesy said, because drowning is the number one cause of death for these children. One of the few characteristics that appears across the autism spectrum is that they are generally drawn to water, she said, but the children don’t understand the safety issues.

Last year QLC worked with city Director of Parks and Recreation Chris Inman and the lifeguards at the Havre Community Pool to develop a swimming program for children with autism, Fuzesy said. QLC staff met with the pool staff to share resources and discuss autism-specific issues to ensure safety and a productive educational experience.

Parents who think they might be noticing developmental delays in their child and are in need of guidance can call Jessie Fuzesy or Tina Thomas at QLC, 265-2620.