Diné for our Children:
Hope for parents of special-needs children

Second in a two-part series

By Kathy Helms
Diné Bureau

WINDOW ROCK — As the parent of a special needs child, it never occurred to Kathleen Hubbell that her nine years of experience could be helpful to a parent just starting out.

But through the three-year pilot project Diné for Our Children, she and other mothers, fathers, and even grandparents are helping to improve the quality of services of special needs children on the Navajo Nation.

Jenny Rodgers, project director, said the program is all about empowering parents by having them work together with medical professionals, educators, politicians and others to bridge the gap of services for children from birth to 18 years of age.

Funding
The pilot project is federally funded through the Maternal and Child Health Bureau. "We pay the parents to participate in the project, but we also don't pay them for every meeting or activity that they attend because we want to sustain the project," Rodgers said.

"We don't want them to feel that it's a service program that goes to them, rather that they have something to add to what's happening to services for special needs children."

The parents have learned leadership skills, how to conduct and facilitate meetings, and now they're in the process of developing a tool kit of resources.

"All of our parents are listed as a resource because from our perspective, they're the experts. If anybody needs information about special needs children, they're the experts to ask. It's capacity-building for the community," Rodgers said.

The tool kit will list not only the standard federal, state and tribal resources, but the names of people who offer such activities as camping for kids or horse therapy, lists of caregivers, quilt-makers, mechanics, and even carpenters within the community who might be able to assist with building wheelchair ramps or other projects.

Resources
The list of resources could be just about anything, Hubbell said, such as making special clothes for kids. "Like some kids are born and their bones are dysfunctional. It's hard to find clothes for them. Or maybe premature babies that are really small. They don't just want to be wearing doll clothes."

Hubbell said they will be putting together an organizer of things they think might be useful, even so far as listing the phone numbers of other parents who will be on hand if a new parent just needs someone to talk to.

"A lot of things parents have said to us," Rodgers said, "is, 'I never knew what it was like to have a special needs child. I never even expected to have a special needs child. When my child was born I didn't know what to do. I was overwhelmed.'

"They go through a lot of feelings. 'What do I do? I get sadness.' They need a lot of support, and so our parents are going to be there."

Doctors at Fort Defiance Hospital have been enthusiastic about the tool kit, according to Rodgers, saying "That is something that we have been lacking that would really help us because, oftentimes, we do the medical piece, but there's nobody there to support the families, to assist them to move forward."

Medical Home
The project also is working with hospital professionals to develop a medical home. "A medical home is not a hospital or a building; rather, it's coordinated care where the physicians that work with us bring in all the resources to the family, and the parents don't have to go here and here, finding their own resources. It's at one central location."

They've also begun working on a similar concept with Window Rock Unified School System, called an educational home.

"The other piece of this project is we're going to be conducting a Navajo Nationwide survey on special needs children are there gaps in the services, what kinds of services are out there, what is the situation for special needs children on the Navajo Nation," Rodgers said. The survey is expected to kick off in October.

Diné for Our Children has developed a steering committee made up of school board members, physicians, professionals, parents, and council delegates such as Alice Benally and Ida Nelson from Eastern Agency.

"They're kind of like the pushers of the parents' agenda, together, to improve services for children. They're the next layer of the voice of the parents," Rodgers said.

Margaret Schildt, one member of the steering committee, is the clinical director with the Navajo Treatment Center for Children and Their Families, headquartered in Window Rock. The center provides the mental health aspect for the project.

"I think the beauty of it is, it reminds us, we're the professionals; we get paid to do our jobs. A lot of times the parents don't get paid for anything they just have to take care of their children," she said.

"They really put us back into the reality that this is why we're here. I think part of the steering committee is if you're not already an advocate for children, you will become an advocate if the parents can help it," she said.

Many of the projects' parents, like Hubbell, have a story to tell about their struggles, Rodgers said.

"Even to this day, you would think people would be more open-minded, but a lot of times the resources themselves close the door on the families. They either close the door completely or say, 'Go to the next resource.' They don't understand what the struggle really is."

That's where the parents come in, she said. "If it's just one voice, nothing happens. But if you've got 10 parents' voices, you can hear that voice. So we have them come together and say, 'This is what we need.'

"Most of our parents do not work because of the time that's spent with a special needs child. It's very time-consuming. It's almost impossible to work at times."

New ways
Schildt agreed. "It's not the old way of doing things, where people were institutionalized because they were different. I think what will make our program will be parents. They'll make it possible.

"We forget that parents get depressed and they get anxious, and this affects motivation. But if anybody knows that they have to keep taking care of their children, it's the parents. We don't always know that as providers," she said.

"We have to remember that our programs receive dollars because of the needs of these children and these families, and the parents remind us of that."

The highest rate of sexual abuse is to special needs children, she said, but often, their caregivers don't know about it.

Her program focuses on children who have been traumatized through domestic violence, sexual abuse, physical abuse, loss of a parent, or perhaps they have witnessed a serious accident. Then when other traumas occur, it becomes difficult for these children to maneuver in life, Schildt said.

"It's all traumatizing. We know that if we can provide them with services immediately, then they can continue with life and not carry this burden."