Parenting SOS, part 8: Support with a diagnosis

By Julie Cajigas

Throughout this series, we have reviewed support groups like MOPS and organizations like the Early Childhood Resource Center that cater to parents from all walks of life, and programs like Help Me Grow when children experience delays or difficulties. 

Support groups for families facing mental and emotional health challenges that come with struggles like divorce and bereavement can be found through individual counseling offices and agencies throughout the area.  

But where can you find support when your child is diagnosed with an illness or a disability?

Akronites are lucky to have a world-class children’s hospital right in their own backyard that offers an array of groups and services to parents of children who have a diagnosis.

If you are looking for support for a particular health challenge your child may have, a great place to begin is the Akron Children’s Hospital Family Supports webpage.

On that page, you can find everything from a group called Sibshop(r) that is a structured group program for siblings of a child with a disability to the NEOMED buddy group that matches a first-year medical student from NEOMED with a child who is coping with cancer or a blood disorder.

According to the website, “The students offer friendship and support to the children as they gain insight into how a life-threatening illness impacts patients and their families.”

Read archived Hell Raisers content here.

Unfortunately, children and first-year medical students interested in that specific program will have to wait until there are significant changes in the COVID-19 pandemic situation. 

Akron Children’s Hospital has a page for canceled programs, where families can check to see if the program they are interested in is still available. Given the number of programs offered, it’s surprising how few are on the cancellation list. 

Most programs on the list appear to be programs in which the child’s specific health issue makes the child more susceptible to COVID-19.

Akron Children’s Hospital offers a number of support groups that can all be found on the Family Supports webpage. Each group is specifically tailored to the families of children with a specific diagnosis such as diabetes mellitus, celiac disease, cystic fibrosis or cancer. 

Another notable group on the page is the Precious Parents group. The Precious Parents group is for parents who have experienced infant or pregnancy loss.

Akron Children’s Hospital also offers several groups for parents and children coping with grief or bereavement. A complete list of their support groups can be found here.

The Parent Mentor Program

In addition to the above opportunities for support, there is a unique program at Akron Children’s Hospital that connects parents of children struggling with a diagnosis to parents who have experience with a similar health challenge: The Parent Mentor Program.

The Parent Mentor Program was founded in the early 90s by a mother who lost her daughter to a four-year battle with leukemia. Throughout her stay in the hospital, she felt as if she could have benefitted from the support of another parent who had gone through a similar situation. She contacted then hospital president Bill Considine to express her concerns. They worked together to develop the parent mentor program.

“My daughter was born with a heart defect, and when I tried to open up and mention my fears as to whether or not my child would make it, other parents would be shocked,” said Kristin Hafford, parent advisor coordinator at Akron Children’s Hospital. “Sometimes you can feel very alone, so there’s so much empowerment that comes from talking to a mentor who can relate to you and share your experience.”

Hafford works to connect families with a diagnosis to trained parent mentors who have volunteered to share their knowledge and advocacy experience. 

“We don’t have a mentor for every diagnosis,” she said, but the program is able to match families with mentors who have related diagnoses or experiences. The list of diagnoses on the website is long and comprehensive.

When parents visit the Parent Mentoring website, they can search a database of parent mentors by selecting their child’s diagnosis. While some parents may ultimately contact Hafford for help matching, it’s amazing to be able to read parent stories and see profiles of prospective mentors on the site.

“The relationship between the mentor and the family could last several months, or could develop into a lifetime friendship,” Hafford said. “We leave it up to the mentor and family to develop their relationship.”

The Akron Children’s Hospital Parent Mentor Program has grown since its beginning. As one of the first such programs in the United States, it has become a model for other similar programs around the country, and Hafford has been able to help other hospitals develop their own programs.

From support groups to a groundbreaking parent mentor program, parents in Akron who need support with their child’s health have an incredible resource in the Akron Children’s Hospital.

Parents of children with a medical diagnosis who are interested in learning more or connecting with a mentor can visit the Parent Mentor Program website.

Julie is a mother of three and Professor of Practice at The University of Akron. Her hobbies include singing in the Cleveland Orchestra Chorus, Instagramming her kids and sleeping standing up.