Parents of children with developmental disabilities aim high

Parents of children with developmental disabilities aim high

Kim Gunderson-Moore stood outside the nursery window watching the two doctors examining her newborn son. The day before, when she first laid eyes on Cameron, she thought he might have Down syndrome. She asked the family practitioner who delivered him to bring in a pediatrician to check.

As the family practitioner came down the hall to talk to her, she already knew what he was going to say. He sat on the bed next to her, broke the news and told her he was sorry.

“This kind of thing can be hard on a marriage,” she recalls him saying, before he left to complete his rounds.

Sitting alone on the bed with her thoughts, she worried about what she knew about Down syndrome, how people with the condition had a shorter life span and how her son’s life would be different.

“I jumped ahead to all those worries instead of just totally soaking in this beautiful baby boy,” she said.

Later that morning, the pediatrician stopped by her room to congratulate her roommate on her healthy baby boy. He looked at Moore and walked out without saying a word.

The message, delivered nearly 28 years ago, was quite clear: Their life would be so difficult, it could ruin their marriage. They should be prepared for a tough life filled with heartbreak and sorrow. A baby born with a disability was not to be celebrated and should be spoken of in hushed tones.

It’s a message still heard today by thousands of parents of children with disabilities — temper your expectations so you won’t be disappointed. Research suggests quite the opposite. When parents have high expectations for their children with disabilities, those children are more likely to reach their full potential. They are more likely to complete their schooling, live independently and earn a living wage.

Increasingly, parents of children with disabilities are learning to ignore the negative messaging about their children’s limitations to focus instead on what their children can achieve.

“From the very beginning when they receive diagnoses, the message is not hopeful. They often hear descriptions of what your child can’t do, and they simply aren’t true,” said Jaime Daignault, executive director of the Oregon Council on Developmental Disabilities. “We know from our experience and the data that we collect, that when parents have a positive vision for their future, their children have better outcomes.”

Alex Bundy, who lives independently in a home with five other roommates with disabilities, looks for a country music song on his computer while sitting in his bedroom. (Ryan Brennecke/Bulletin photo)

Children with developmental disabilities were once routinely institutionalized, hidden away from public view as much for society’s own comfort as for their own personal safety. By the 1960s, parents started rebelling against the push to send their children away, hiding them at home instead. In the 1980s, horror stories about state hospitals led parents to openly advocate for keeping their children in the community. Well-meaning advocates built hundreds of group homes and sheltered workplaces, where people with disabilities could live and work, segregated from the world around them. Since the turn of the century, however, those too have fallen out of favor as parents look for ways to keep their children at home and to integrate them into their communities. Now only 1 in 4 people with disabilities receive publicly funded long-term care services.

That has left many parents fighting for inclusion, striving to provide their children with the same opportunities any typical child would get: a chance to go to school with their peers, to find meaning in their lives, and to live independently and realize their full potential whatever that might be.

It’s a difficult road fraught with pitfalls and challenges, and one parents walk willingly to secure a better future for their children. They are learning to dream big to avoid limiting what their children could achieve.

The extremist

Silvia and Mark Bundy had a son, Alex, in Portland in 1992. After he was diagnosed with Down syndrome, a nurse came by to show Silvia Bundy a graduation picture of her brother, who also had Down syndrome. Reality didn’t set in until Alex started missing milestones at 3 months old.

“Every milestone you miss, you go through a grieving process,” she said. “You’d think that after a while the grieving gets a little easier. In actuality, as you progress through life, it’s actually a little tougher. You get to where you realize, this is the person he is going to become and it’s a whole different grieving process.”

Month by month, year by year, they fall further behind.

“The difference becomes greater,” she said. “They’ve rolled over, but by that time, they should be sitting up. And then pretty soon, he’s sitting, but they’re walking. You’re still trying to get him to walk at 3 years old and the other kids are walking and talking. So as the years progress, the gap becomes larger.”

Bundy came to refer to her son as her extremist. There was always extreme sadness followed by extreme joy.

“There were times when I wanted to go to my room and close the door and tell the world I’m not coming out again,” she said. “It took quite the energy to go out into the world.”

Things that parents might take for granted become major enterprises for families experiencing disability. When Alex needed to go to the dentist for the first time, he screamed inconsolably. The dentist understood and had Bundy bring him back week after week. He practiced sitting in the chair, having his cheek rubbed, desensitizing him to the process of dental hygiene, until he finally allowed the dentist to check his teeth.

Cameron Moore, 27, left, feeds crickets to a cage of lizards while working at The Reptile Zone with his older brother, Aaron Moore, 29. (Ryan Brennecke/Bulletin photo)

The first time they flew to visit his grandparents, the Bundys prepped everybody on the flight from the pilot to the flight attendants. They were the last to board the plane. They arranged for his grandparents to be on the tarmac. Alex screamed through much of the flight, until his father told him the plane was going down. “Down?” Alex exclaimed with joy, and the entire plane erupted in applause.

“All that prep work and all the extra work that you have to go into and then you’re putting your child through this trauma, because he’s screaming and you’re going through trauma because he’s screaming,” she said. “In the end it all worked out, but if you don’t do that, you’re never going to get there.”

Bundy works for the Alyce Hatch Center, the region’s early intervention program that provides services and support to children who miss developmental milestones early in life. She started working there, when Alex was attending therapy at the center.

“The joke is Alex graduated from the program and mom’s still stuck there,” she said laughing. “I never hit my milestones. I’ll never graduate.”

Despite the challenges, Alex worked his way through high school and graduated with a modified diploma. After high school, he completed a transitional program that was to prepare him for life on his own. Now he volunteers at a public library and an education center, and lives independently in a Bend house with five other roommates, all of whom have a disability. He thrives on routine, which helps him live independently. When unforeseen things arise or the routine has to change, Bundy must step in to ensure nothing falls through the cracks.

“I think that’s where all the stressors come in, all of those changes,” she said. “It’s a juggling act, and if you drop a ball, you feel guilty, and then you start working on yourself.”

Great expectations

Erik Carter, a special education researcher at Vanderbilt University, led a study in 2012 tracking more than 11,000 students across 13 special education categories. The researchers wanted to know which student, family, school or community characteristics would predict whether students with significant disabilities would find jobs after graduating high school. They found that when parents had definite expectations at the start of high school that their children would eventually be employed, those children were five times more likely to work for pay in the first two years after graduating. Parental expectations were a stronger predictor than any other factor they examined.

“The most powerful force in changing transition outcomes for young people with significant disabilities is not ultimately found in the transition plans we craft, the educational services we offer, the instruction we provide or the systems we build,” Carter said at a 2014 disability advocacy group meeting, “but rather in the expectations and the aspirations individual parents hold for their sons and daughters.”

Alex Bundy works on removing a full bag of trash from the kitchen area. Bundy lives in a home with five other roommates with disabilities and one of his household chores is to make sure the trash is removed and put out at the curb for pickup. (Ryan Brennecke/Bulletin photo)

Other researchers found that parental expectations predicted not only whether their children would work after high school, but whether they would graduate or even be enrolled in school.

Carter explained that when parents expected more from their children from their earliest days, parents would expose their children to different types of activities and experiences. They were more likely to require their children to do household chores, to talk to them about their future, to sign them up for extracurricular activities and to advocate for rigorous learning experiences in school.

Those activities and experiences served to help children realize a different future and provide parents with a glimpse of what might be possible with the right encouragement and support.

Parents, he argued, needed to see more examples of people with disabilities going to work or attending college. Yet, jobs for those with disabilities often tended to be hidden from view, in back rooms or sheltered workshops.

“Professionals are sometimes reluctant to encourage parents to ‘hope large’ because it ultimately will require us to do things differently,” he said. “We must be willing to let families show us what is possible when their vision exceeds our own.”

That, he said, is how the field has always moved forward fastest.

For families like the Moores, early intervention programs for kids who miss development milestones serve as a soft landing during a child’s early years. Those programs are geared to the children’s specific needs and increasingly offer children with disabilities a chance to interact with and learn from typically developing kids.

When Cameron reached kindergarten age, Kim and Paul Moore faced the same limited perceptions of what their son could handle. In the mid 1990s, school officials were starting to talk about inclusion, and children with disabilities were largely segregated in special education or life skills classes. District officials wanted to place Cameron in a special education program in Redmond. The Moores wanted him to go to school in Tumalo with his older brother and sister.

“That was quite a challenge to sit around a table with so many people that were pushing us in another direction,” Moore recalled. She had worked as an interpreter for deaf children in schools and had sat through similar meeting on the other side of the table. Now she was the parent fighting for her child.

“It was so intimidating and at some point you get tired of pushing and trying so hard,” she said. “We had to do that every year at the annual meeting and just try to reconvince people that Cameron was doing fine in the mainstream setting. There were some pretty heated discussions.”

School district officials were concerned about the added burden on Cameron’s teachers. The Moores had an ace up their sleeve. Cameron never developed speech, and while other parents had turned to computer technology to help their nonverbal kids, Moore taught him sign language. They were able to get Cameron a signing assistant and that meant the teacher would have help.

“He had a built-in assistant who could also work with other kids,” Moore said. “We would hear, ‘We have to think about the teachers, they’ve got upwards of 30 kids in the classroom.’ And that’s when we would always say, ‘Well, Cameron comes with an assistant.’”

When Cameron graduated from high school he attended a transitions program, designed to help acclimate him to life after school. The Moores were disappointed to see it focused more on preparing him for working in sheltered workshops than out in the community.

“We were not really comfortable with it just because we had pushed so hard all during the school years for Cameron to be more integrated,” she said. “We knew that we had to be very strong advocates and we had to do a lot of the leg work if we wanted him to work in the community.”

One of his first jobs was to sit all day and feed paper into a shredder. From there, he was moved to a thrift store, where he worked in the back room hanging up clothing.

“For some of the adults there, it was a good fit, but not for Cameron,” Moore said.

The solution came when his older brother, Aaron started to work part time with Cameron. As a musician, Aaron worked evenings, and sometimes Cameron would serve as the band’s roadie, helping them unload their equipment and set up on stage.

That left his days free to work with Cameron. He was hired as his brother’s community access worker. They now volunteer together at the Habitat for Humanity ReStore, and work at the ReptileZone in Bend.

“He never learned to read or write, and he doesn’t get the idea of money, so his dad and I thought why push him into a job where he has to punch a time clock?” Moore said. “We don’t care if he makes money.”

Moore’s husband died from ALS earlier this year, leaving her and Aaron to care for Cameron.

“I’m still tethered, where so many of my friends are free to come and go,” she said. “And a lot of times I’m disappointed because I can’t do things. I still really need to plan things out.”

Constant battle

Many parents struggle with the challenges of constantly having to fight for their children, to advocate for inclusion and for the same opportunities that parents of typical children take for granted.

“A lot of people say, ‘I’m just going to take him home. I’m going to do home schooling,” said Diane Tipton, director of early intervention at the Alyce Hatch Center in Bend. “It’s just very isolating.”

Children with disabilities rarely get invited to birthday parties. They can’t go to the grocery store without getting dirty looks.

“If you’re child looks like he has special needs, you never have that back and forth. ‘Oh he’s so cute! What a beautiful baby!” Tipton said. “For those parents who are rising above and advocating for their kids, there’s the stress of ‘Am I doing enough?’”

As people walk on egg shells around them, worried about saying the wrong thing or trying to console parents about their child’s disability, parents feel like they can’t celebrate their newborn child or any of their child’s accomplishments.

“It takes your joy away, and then as a mom, you feel guilty for feeling that way,” said Kerenia Quinn, a Bend mother of an 11-year-old boy with Down syndrome. “There are a lot of positives, but it’s hard to see it at the beginning.”

It wasn’t until Quinn found other parents of children with Down syndrome that she started to see what was possible for her son, Colton.

“It’s hard to get answers to stuff when you don’t really know what to ask,” she said.

Studies suggest that being a parent of a child with developmental disabilities or complex medical needs takes a huge toll on their physical and mental health. They are more likely to be diagnosed with depression than parents with typical children, and are more likely to endure physical problems such as lower back pain. One study found that 23 percent of parents of children with disabilities had their own physical limitations compared to 11 percent of parents of typical children.

The burden falls disproportionately on mothers, who studies show, are generally more likely to be the primary caregiver for children with disabilities. That holds true even when children are grown up, mothers work full time and when fathers have retired. As a result, mothers are more likely to rate their health as poor and to show the cognitive effects of long term stress.

Cameron Moore, 27, feeds a tortoise while working at The Reptile Zone with his older brother. (Ryan Brennecke/Bulletin photo)

While the shift from institutional care to outpatient community and home-based services has been a boon for children with disabilities, it has put more pressure on their parents. They must become experts in medical care and learn to navigate the complex world of social services. Their child’s life can sometimes revolve around doctor visits and therapy appointments, instead of soccer practice and playdates.

“I think I did get caught up in that cycle,” said Callie Kackley, whose 9-year-old daughter, Mia, has Down syndrome. “To give her a good life, I need to go to these professionals and these places and these people and get her these professional services, because then I’m being a good mom and giving her what she needs. I had to come to a place early on in our journey, trying to think of her situation and how we would do life if she didn’t have Down syndrome?”

Kackley decided Mia could learn a lot from interacting with typical children, hearing how they talk and watching how they play. She felt that was as important as many of the specialized services for children with disabilities.

“Sometimes parents feel like our communities aren’t always inclusive or aren’t always accessible to everyone, that that’s where they have to go or that’s what they have to do for their child to learn to walk or read or talk,” she said. “There are obviously some barriers there we have to work to break down.”

Kackley works for the Central Oregon Disability Support Network, an organization run by parents of children with disabilities, that stresses peer support over specialized services.

“I feel like sometimes we can get too reliant on systems and not enough on communities and people and each other,” she said. “Down syndrome doesn’t mean Mia shouldn’t be able to access her community and her school and the world. And that doesn’t only have to happen in a medical office or an appointment or her therapy.”

Dianna Hansen, the support network’s executive director, has a 15-year-old daughter with Down syndrome. Victoria dreams of being a chef and living in a house with a bowling alley and a lap pool, and driving a red car, either a convertible or pickup truck in case she needs to tow a horse trailer.

A few years ago, she decided she didn’t want to go to physical therapy anymore. After all, none of her friends at school had to go to therapy. The Hansens consulted with their physical therapist to learn what kind of activities Victoria could do strengthen her core. They got her into horse riding and other activities that were more like the things her friends were doing.

Fourteen-year-old Victoria Hansen starts to fry some elk backstrap while preparing a meal for her family in their home. (Ryan Brennecke/Bulletin photo)

“That doesn’t feel like therapy, but she’s still getting the benefits of therapy,” Hansen said. “We’ve done a lot of things like that.”

Victoria rock climbs and kayaks. During the winter, she skis every Sunday. She plays drums in the school band, and during summer, goes to percussion camps.

“Anything you can think of, she’ll sign up for,” Hansen said.

At times, those running the activities hesitate when they hear the words Down syndrome. Once they meet Victoria and learn more about her abilities, it’s rarely a problem.

“We’ve come in and done a lot of education for different organizations,” Hansen said. “Then once they meet her and see her, it looks different from what their expectations were.”

Hansen started the education process early on. When Victoria was born at St. Charles Bend in 2003, the staff handed her some photocopied pages about Down syndrome. She wouldn’t live past 26, and wouldn’t dress herself until she was 7, the materials said. It was only weeks later that her husband noticed the pages dated from 1966.

“I still have those pages,” Hansen said. “It’s my motivation. Let’s never let this happen again.”

Hansen said it was seeing other kids with disabilities doing amazing things that taught her to never hold her daughter back.

“Our kids get put in a box based on their diagnosis and people who experience developmental disability specifically are often classified by their medical diagnosis and not by the people they are,” she said. “We don’t do that with other people.”

Nobody calls a co-worker “Hysterectomy Lori” or “Cancer Sue,” shesaid. In fact, people with disability remain the only group identified solely by what they cannot do.

Groups like the disability support network are now encouraging parents not to limit their expectations for their children, to avoid artificial ceilings on what they can do with their lives.

“We have two boys as well,” Hansen said. “We have the same expectations and the same dreams for her as we have for our boys. She does everything that the boys ever did.”

When a child’s support system has big dreams and teaches that child to have those big dreams for herself, she said, that’s will have a profound impact on their lives.

Whole lives

Alex Bundy, who lives independently in a home with five other roommates with disabilities, and his mother, Silvia Bundy, visit together at his house. (Ryan Brennecke/Bulletin photo)

That sort of thinking has led to an emerging approach by support groups to advocate for people with disabilities to live whole lives.

“We believe that whole lives are possible for people with disability, but it takes a parent dreaming a big dream and really creating a vision for what the future can look like for their son or daughter and then to set a trajectory toward that,” said Roberta Dunn, executive director of FACT Oregon, a statewide peer support network for parents of children with disabilities. “But what happens often for that family is they get stuck in early diagnosis or the therapeutic clinical model and they have a hard time breaking out of that.”

Dunn, whose son has Down syndrome, recalls having coffee several years ago with two other moms of children with disabilities, talking about what their children would do for the summer. Both moms talked of therapy appointments and other services, rattling of a long list of activities and a very busy schedule.

Then Dunn said her son was going to summer camp.

“What are your expected outcomes?” she recalls them asking. She replied simply, “Skinned knees and pollywogs.”

Dunn said it’s hard for many children to escape that focus on what they can’t do and what needs to be fixed, because that’s what most doctors, teachers and others in the community talk about.

“All the energy is focused on what’s not working about you,” she said. “We’ve totally missed celebrating all the awesomeness about you.”

Some counter that having high expectations could leave parents and their children at risk of being disappointed. Dunn doesn’t believe that expectations can ever be too high.

She gives the example of when her son had a crush on Molly, the captain of his high school’s volleyball team. Worried her son might have his heart broken, she asked her circle of friends whether she should have talk with him about the unlikelihood of a dating relationship with Molly.

“All the men in the group laughed at me,” she said.

No, we all shoot for a Molly, they told her, and then we recalibrate.

“So that’s the principle that I use whether or not it’s possible to dream too big a dream,” she said. “I just don’t think it’s possible.”

Dunn’s son is now 26, lives in his own condo, uses mass transit by himself, and has worked in the community for three years.

“He’s an adult that experiences Down syndrome,” she said. “Twenty years ago, if you were thinking about what the future held, you might have thought he would live in a congregate group home and he would work in a sheltered workshop and that would have defined what his future looked like.”

That’s not to say that big dreams make life any easier. Parents face numerous challenges in getting their children the help they need along the way. Wages for personal care workers remain low, making it hard to find qualified help.

“It’s very hard to find and keep people that can do that work, which sort of leads to a revolving door of strangers in and out of your child’s life,’ said Carrie Salehiamin, a Portland mother of a 15-year-old girl with developmental disabilities, and a volunteer with FACTS Oregon.

Access to therapists is often limited, particularly in rural areas of the state, and even when those professionals are available, insurance plans often limit the number of therapy appointments or set annual caps on reimbursement.

“You get the service for the first seven months of the year and you child is doing well and thriving, and then there’s no money left for the rest of the year,” she said. “And then you have to wait until January for it to start all over again, and so there’s a drop and a regression. It’s exhausting.”

There are hidden costs that insurance won’t cover. Her daughter is unable to tolerate dental procedures unless she’s fully sedated.

Cameron Moore, 27, left, and his older brother, Aaron Moore, 29, work together on sweeping the floor at The Reptile Zone. (Ryan Brennecke/Bulletin photo)

“We have excellent private insurance, but there’s no dental plan in the world that will cover her being sedated to have her teeth worked on,” she said. “So it costs me $3,000 every two years so that she can have the dental work she needs.”

Parenting is a challenge with any child, and certainly, all families face their struggles from time to time. For families of children with disabilities, those challenges get taken to the extreme.

“They feel alone. They feel like nobody else understands what they’re going through. They don’t know who to talk to, and that just piles up over the years,” said Michelle Reynolds, director of individual advocacy and family support for the University of Missouri-Kansas City’s Institute for Human Development. “You start feeling alone and you almost start segregating yourself.”

That often leads to a perception on the behalf of parents that it’s them against the world, that no one else can care for their child but them. Reynolds has a child and a brother with disabilities.

“When the world is good, it’s good,” she said. “But if there’s some sort of explosive behavior, then you feel like, Why did I leave the house? It??s just so much easier to stay home.”

Researchers like Reynolds are still studying how to help parents avoid that spiral of negativity, that leads to further isolation, and helping them to focus on their child’s strengths instead.

“We don’t need researchers telling families how crappy their lives are,” she said. “We need to look at some of the underlying things that are happening and how it’s perpetuating itself.”

Disability advocates are now trying to reframe the discussion from a strength-based perspective, to support families as they try to envision a fulfilling whole life for their children. That could take retraining expectations of the general public as well.

Reynolds said there is now a big push to train doctors to treat children experiencing disability the same way they treat their other patients.

“We need to teach them that just because that kid might have Down syndrome, they should still have the typical life experiences,” she said. “Are they riding bikes? Are they swimming?”

And parents need to see more role models for their kids, the people with disabilities who are living life to their fullest potential.

“The more companies hire people with disabilities, with different types of diversity and disability, the more that trainers are people with disability, the more parents will say, ‘Oh, well if they can do it them my child can do it.”

Advice to parents often focuses on what services they can use, she said. Go get occupational therapy. Take him to physical therapy. Have you signed her up for Social Security?

“Very rarely are people saying to them, does your child have friends? Do they go to birthday parties? Do they do chores around the house? Do you have expectations in your home like you would for any of your other children?” Reynolds said. “Because the more you do that, than just naturally as they become an adult, they’ll just expect to work and expect to have those.”

Life experiences, she said, are the key to the expectations component. That applies even for the children with the most profound disabilities.

“For someone who is 100 percent dependent on someone else, they still bring qualities to our world if we value them as a human being,” Reynolds said. “Our job is to find those qualities.”

Are they a ray of sunshine for someone else? What makes their eyes twinkle? Maybe they don’t have words to communicate, but they still have a value.

“How are we bringing other people into that home to get to that value? Children, not just adults,” Reynolds said. “I think it’s really on us.”•