Special needs packets distributed

Fran Roanhorse of Diné For Our Children, right, and Dr. Kevin Sweeney give care packages to Theresa Tsosie, left, and her children at the GIMC Pediatrics Center Wednesday, September 17. The packages including things like diapers, toys and parenting information.

Copyright © 2008
Gallup Independent
By Karen Francis
Diné Bureau

WINDOW ROCK — In a new resource packet for parents of children born with special needs, there’s the story of one mother who wrote about what it was like to wonder day and night if anybody cared about special needs children and not knowing where to start.

“I was scared that I was all alone,” she wrote. “I felt bad knowing that I didn’t know anybody or anything on how to stand up for my special need son.”

Then she was introduced to the Diné for Our Children program where she learned that there are other mothers, fathers and grandparents with special needs children and they can help her find resources for her son.

The program, which is funded by the Department of Health and Human Services Maternal and Child Health Bureau and is under the Navajo Division of Social Services, has been working to ensure that special needs children and their parents are not overlooked.

“Our job is really to integrate services for these children so that they get the quality services that they need,” said Jenny Rodgers, program director for the DOC program, citing the need for health care and insurance.

In Diné teachings, exceptional children are considered a blessing, but services for them often do not reflect that.
The new resource packets came about because of a community assessment done by the program and were a project that parents wanted to do.

“They wanted to help other families within the community that have special needs children,” Rodgers said.

“When I had my daughter there was no one there to talk to. There was no support group in the area of parents. I had to go out on my own to talk to people,” Theresa Tsosie said.
Now Tsosie is working to ensure that other parents have valuable information that she had to seek out when her daughter was born. On Wednesday, she was at the DOC office in Window Rock helping to pack bags with a bib, rattle, a book, shampoo, lotion, diapers, onesies, sippy cups and receiving blankets.

But most important, included in the bag is a magazine for exceptional parents and a resource binder with information about child development, resources for special needs children and phone numbers of other parents of exceptional children who know what the new parents are going through.
There are also stories about the challenges that the parents and grandparents faced. One story tells about a young boy who was not breathing right when he was born and would not drink from a bottle. He had to go to the University of New Mexico hospital where doctors nearly gave up on him.

“Our only option was a medicine man,” his mother wrote. The medicine man did his prayers and said they would take the baby home the next day. Early in the morning the doctor called and told her that her son was awake and drinking from a bottle. By 2 p.m. she was allowed to take him home on oxygen.

“He’s my gift from God,” she wrote.

Having such a packet would have helped Tsosie when her daughter was born, but she is hoping that other parents will benefit from the challenges she and other parents had to face.

The packages are going to the hospitals around the Navajo Nation for parents who have special needs children. On Tuesday, 100 were delivered to Fort Defiance Indian Hospital and on Wednesday, the program was delivering more to the Gallup Indian Medical Center .

“Families are always at the table with our program. Their voice is critical to our project,” Rodgers said. “We believe the families are the experts.”

There are ten parent leaders at each of the sites in Crownpoint, Chinle, Fort Defiance and Kayenta, who are advocating for special needs children through the DOC program. The parents also volunteer as a personal resource to parents of other special needs children.

“There’s no one out there that understands what you go through ... unless you’ve been in that situation,” Tsosie said. “In parent group, we’ve all cried and told our stories, so now we’re hoping the new moms that come forward, we’re trying to help them and let them know they have someone in their community.”

The parent group for the Fort Defiance area meets the second Tuesday of every month and sets goals for its members to achieve.

The program and parents from the Fort Defiance group are currently working with the school district to try to get more services for special needs children.

Tsosie said she would still like to see more awareness about exceptional children. At the steering committee meetings, she has not seen any Navajo Nation leaders though they have been invited, she said.

“They need to be aware of our issues,” she said.

At the meetings, the main issue that is discussed is lack of services, she added.

Because the focus is on the families, the program only has two staff members, including Rodgers, with parents serving as volunteers, which allows the program to maximize funding for its purpose.

One project coming up is a survey to find out how many children across the Navajo Nation are special needs because no such data currently exists, Rodgers said.

The program also continues to work on compiling a list of resources for parents of exceptional children. For example, the list would contain information on people who make clothes for special needs children and other people or companies that are resources.

Information: (928) 871-6535 or 1-866-641-1582