Updated 11/4/2011 at 5:50pm
Like any new parent, Ryan Haley hadn’t the slightest clue on how to change a diaper when his daughter Emily was born four years ago. Like any new parent, he had to learn how to get down to his daughter’s eye level when talking to her. And like any new parent, Haley was sleep-deprived every night after waking up multiple times to attend to her cries.
However, when Haley was late to pick up Emily one day from preschool, Emily came home with a note attached to her shirt that threatened contact with Child Protective Services if he was ever late again. The emergency contacts Emily’s school kept on file were never even notified. It was clear to the Haley and his wife Paula Blair they weren’t being treated like any other new parents.
Haley and Blair are Special Olympics athletes from Butte County, Calif. Haley is diagnosed with dyslexia and learning disabilities that keep his reading at a second-grade level and Blair has a speech disability that makes pronouncing longer words difficult. Though the couple have faced some hardships, they consider themselves lucky. Not only do they have a healthy, beautiful four-year-old, but they have custody of her, unlike many parents who have been deemed inadequate caretakers and lost custody of their children.
During the past century, the number of families headed by a parent with an intellectual and/or developmental disability has increased substantially, according to the Research and Training Center of Community Living of the University of Minnesota.
Two national surveys and NHIS report more than 8 million families include at least one parent who has a disability, in the United States alone.
The lack of programs representing these parents renders them an invisible population. Only 51 percent of parents with intellectual and/or developmental disabilities are currently living with their children, according to the most recent updates in the 1994-1995 National Health Interview Survey – Disability Supplement (NHIS-D). Other studies estimate 40 to 60 percent of parents with developmental disabilities have had their children removed from their care at some point in time.
While there are various organizations dedicated to children and individuals with developmental disabilities, resources for parents with developmental disabilities are substantially fewer, to the point that they must rely on the support of family or friends to raise their children and reduce the risk of losing their parental rights. Many families without this support often face Child Protective Services (CPS) intervention.
Lesa Nitcy Hope, director of community services at All About Developmental Disabilities (AADD), has spent 25 years advocating for the rights of developmentally disabled people.
“In many ways this challenge mirrors the challenges faced by other marginalized groups historically,” Nitcy Hope said in an email. “The challenge in family courts is that those in power hold their biases and negative stereotypes as ‘common sense’ even when there is no evidence of abuse or neglect. And unfortunately they have the power to make devastating, life-changing decisions for parents and children.”
While there has been no stated criteria for why a developmentally disabled parent may have his or her parental rights terminated, according to a 2006 briefing from the County of Santa Cruz to the Board of Supervisors, an update has been made for what is prioritized in deciding whether to place a child in foster care.
“The new statute now stresses that the child’s health and safety shall be the paramount concern in determining what is reasonable, and consistent with the plan for timely, permanent placement of a child,” according to the briefing.
“Getting here has not been easy,” said Dave Spicer in an email. “As the parent of an autism-spectrum kid, I had to let go of all the ideas I had about how things would work out. I had to become willing to do whatever it took — to go to any length. In my case, this meant letting go of raising my own child.”
Spicer is diagnosed with high-functioning autism and is a writer and speaker for autism. His 26-year-old son Andrew has the same diagnosis. Due to various factors, Spicer decided the best decision for his son was therapeutic foster care in 1995.
“That was the hardest thing I have ever done in my life,” Spicer said. “If someone had told me at the time how well that would work out, I wouldn’t have dared believe them. The process is not pretty or gentle.”
Dave feels a structured home setting and effective advocacy has been the right path for Andrew. Andrew has been living with the same extended family for 16 years. He is part of Buncombe County’s Progressive Education Program and is taking several college courses. While Dave lives in North Carolina and Andrew lives in Maine, they keep in touch through email and see each other once a year.
WALKING ON EGGSHELLS
Although Haley and Blair currently have custody of their daughter Emily, they are not fully at ease. Every day holds the possibility that may result in losing their only daughter. The family has been spontaneously visited by CPS, called in by anonymous callers. Though the couple say there is no evidence or reason to have CPS take custody of Emily, Blair is still haunted by the possibility.
“It’s just scary because you don’t know what’s going to happen,” Blair said. “Are you going to get your child back? Can you turn yourself around and get the support again? It goes through my mind a lot. I don’t know if there will be a knock on the door one day and it’ll be CPS.”
Nitcy Hope said the concept of IQ in family court — in terms of terminating parental rights —is often utilized.
“IQ is not a predictor of a person’s ability to parent,” Nitcy Hope said. “IQ tests were established to determine how people would function academically, yet IQ tests and other psychological evaluations that focus on disability are used as evidence to terminate parental rights. Parents with DD [developmental disabilities] can do everything right and still lose their kids.”
Though the family has received support from community members and friends, in the presence of strangers in public, Haley and Blair feel pressured to meet a certain standard of behavior to continue their lives with their daughter in peace.
“When our child cries in the stores, I have to just let her sit there and cry instead of picking her up and putting her on her butt outside because then we’ll get called on,” Blair said. “We don’t let her get away with anything, but I want people to see that we’re not hurting her.”
It upsets the couple when they receive anonymous feedback from strangers in the form of CPS calls.
“If people have a problem with me and how I treat my daughter, then talk to me or get out of my business,” Blair said. “If you’re going to treat a person with a disability that way and talk about them behind their back, instead of calling CPS why not offer help?”
Cheryl Theis is an education advocate at the Disability Rights Education and Defense Fund as well as a mother of five children, two of them with special needs.
“Parents who have particular developmental disabilities are so inherently seen as less capable, so one of the things we run up against is that the child is having problems at school and the parents are in a custody dispute, so it becomes the thing that the other side uses,” Theis said. “People are less likely to be labeled and treated because they are afraid of exactly that. There are a tremendous amount of roadblocks.”
While Haley and Blair have found a community at the Special Olympics, many developmentally disabled parents who don’t belong to a specialized community don’t receive adequate support in terms of parenting.
Della Jackson is a 45-year-old single mother of two children, ages 4 and 16, from St. Louis, MO. who is diagnosed with mild mental retardation. Since 1994, Jackson has been supported by the Families Learning Together program of the St. Louis Arc, a non-profit United Way agency that provides support and services to developmentally disabled adults, parents and children. However, while pregnant with her first child, she had nowhere to go. Before hearing about Families Learning Together, Jackson lived in a group home that ultimately gave her a choice to either get an abortion or be kicked out.
“They wanted me to get rid of my child, so I left,” Jackson said. “I didn’t feel it was right to do. I never believed in abortion.”
Jackson explained how her parenting classes at Families Learning Together have played a large role in her life as a parent.
“All I had was the parenting class,” Jackson said. “I didn’t really have steady support. But I think I’ve done really well.”
Nitcy Hope, All About Developmental Disabilities (AADD) director of community services, stresses the challenges of parenting for any individual, regardless of disability.
“If we are honest, everyone needs support in parenting,” Nitcy Hope said. “I have a Ph.D and when I had my children, I was supported by older, wiser women who helped me learn about parenting. We should not pathologize needing support or consider it a deficit if we need people to help us along.”
The lack of established programs for parents with developmental disabilities leaves many parents feeling isolated and alone, regardless of family and friend support.
“Parents that are disabled need a program,” said Haley, who has dyslexia. “If there was a program that would help parents with disabilities who have kids and provide a place to bring them together — like a big conference that talks about what it is like to be a parent — we want to know how they do it and talk about our disabilities.”
THE ‘QUIRKY’ PARENTS OF THE NEXT GENERATION
The Coryell Autism Center near downtown Santa Cruz is a specially designed non-public school for young people with autism between the ages 14 and 22. The school is geared toward training individuals at the transition age before adulthood to ready them for the world outside with vocational placement, professionalism training and independent living. The school currently enrolls two students with severe autism and has custom-designed curriculum based on the students’ specific needs.
Kristyne Jolly, the educational director for the Coryell Autism Center, explained her hopes and observations for what could possibly be the next generation of developmentally disabled parents.
“There are still attitudes out there that anyone who is different in any way is not a functioning member of society. It’s really frustrating,” Jolly said. “They’re craving affection and they’re craving touch. We think about that, and as they’re coming into this age they want that, and it’s so difficult to teach them how and to teach others not to take advantage of them.”
While autism is just one of many developmental disabilities, it is composed of a very wide spectrum in terms of how severe or high functioning it can be in individuals.
“Many of them are functioning enough to understand relationships,” Jolly said. “I know many that I think will grow up and have families. I always hope that they get to have as meaningful life as we have [and] as much as my own son.”
While Jolly is concerned with developmentally disabled individuals having the ability to make decisions for themselves and others, she said there are those who are capable of having families.
“Quirky people do grow up and have families, and some of them do have children with autism and you’re going to start seeing trends with families,” Jolly said. “There is a high genetic component and often times you’ll see these families and they’re super smart, and they’re kind of quirky, and you’ll say ‘OK, I see it.’ In a family, you make up for what someone is lacking in. But because of that, you can expect them to go above and beyond in many other ways.”
However, Jolly stressed that model healthy relationships for children with developmental disabilities aren’t always available, even among parents without developmental disabilities.
“With the stress on the families with children with autism, there’s a high divorce rate,” Jolly said. “[The children] don’t get too see what it looks like to be affectionate with someone that is a romantic partner. They didn’t grow up in a nuclear family, so I worry that they can’t understand that beyond what’s in the movies.”
As the capability of developmentally disabled individuals to parent continues to be discussed, the ultimate question remains: What makes a good parent?
“Love, consistency, helping your child learn skills so that they can survive in society [is what matters, as well as] making sure they go to school and showing an interest in their activities and interests,” said AADD director of community services Nitcy Hope.
While Andrew Spicer, a high functioning autistic adult whose father is also autistic, said if he does ever choose to have a family, he would most likely adopt, he has an idea of what makes a good parent.
“The main thing that makes a person a great parent is being able to be there when the child needs them,” Andrew Spicer said.
Jolly defines a parent as a child’s first teacher and stresses the importance of perspective.
“Understanding another person’s perspective [is different] than your own and being able to switch and step out and being able to say, ‘Could I have done that better?’” Jolly said. “It’s this constant moment-to-moment reflection of the choices you make for your little person. Being reflective and at the same time being able to ask for help, that’s what makes you a good parent, knowing your weaknesses. It takes a community to raise a person, too.”
FROM A CHILD’S EYES
While developmentally disabled parents often have children who do not show any signs of developmental disability, in many cases the child has similar genetic traits to the parent. Nearly 30 percent of children whose mothers had intellectual disabilities only or both intellectual and developmental disabilities had intellectual and/or developmental disabilities themselves, according to a data brief from the Research and Training Center on Community Living of the University of Minnesota.
Andrew Spicer recalls his childhood with his father Dave before his placement in therapeutic foster care at eight years old.
“I didn’t really think of my father as different from other parents, because I didn’t really pay attention to other families’ interactions,” Andrew said. “I guess I thought of the time I spent with my father as normal.”
While developmental disabilities often are a strong genetic trait, Haley and Blair — who are dyslexic and autistic respectively — say their daughter Emily has yet to show signs of a developmental disability.
“When Paula was pregnant, they were concerned because maybe Paula’s genes and my genes would affect Emily,” Haley said. “But when she started growing up and nothing was really different with her, everyone just said things like, ‘You have a wonderful daughter. She looks like you guys.’”
CONCERNS FOR THE FUTURE
While Emily is not in school yet, the couple is thinking ahead for when Emily will be learning more advanced concepts that may or may not require them to seek assistance, raising the question: Are they worried?
“With her, not really,” Blair said. “The more I learn how to pronounce words, and with her learning, it’ll be fine. We have family and friends who’ll explain it to me and I’ll explain it to her. She’s got two aunts and an uncle who are teachers, so I’m not really concerned at all.”
Haley, however prepared, does have some concerns.
“I have that worry that when she goes to school that she has reading problems or math problems that I didn’t get the education to understand in order to help,” Haley said. “When she does go to high school and has homework that I don’t understand because I had it explained to me when I was in high school, I won’t have that particular knowledge to give to her when she grows up.”
In the face of ignorance, Della Jackson encourages Daniel, her oldest child, to rise above.
“Other than the parenting class, a lot of people criticize,” she said. “They don’t know what you’re going through. They look at you funny and snicker behind your back because of the way you look. It bothered me growing up, and it used to bother my son, but I just tell him, ‘You don’t say anything back.’”
Similar to Jackson, Haley and Blair have confidence their open-minded daughter will be able to help her friends to be accepting when she starts school.
“I’m hoping Emily will know when they see us and don’t understand, hopefully she’ll let them know, ‘Hey, I have parents that are disabled. They may be different on the outside but on the inside, they’re just like your parents,’” Haley said.
While Haley and Blair may have challenges ahead of them, it is clear their individual lives with their child are just as conceivably stressful and uncompromisingly hopeful as any other parents’. As the phone interview comes to an end, Haley mutters, “Hold on a minute, I want to do something,” and holds the famous Emily to the phone. The confident girl jabbers into the speaker in a voice free of even the slightest hint of apprehension, a voice that exudes only confidence in the many joys and adventures in store for her in the coming years.