Not alone

For parents of kids with special needs, running to various doctor appointments, activities and just completing everyday errands leaves little time for moms and dads to consider their own needs.

In an effort to give parents a time to gather and talk about their lives and special needs children three Soldotna residents founded the Parents SPEAK — Special Parents Encouraging Amazing Kids — Support Group.

The group began about a year ago stemming from Christo Vive International, a Christian-based foundation providing camp experiences around the world for kids with disabilities.

Gene and Jordana Engebretsen, who live in Soldotna and are the founders and directors of Christo Vive, discussed with Peggy Larson, of Soldotna, other ways to reach out to the community.

“My heart went out to parents,” Larson said. “I’ve always had a desire to work with parents of special needs kids because my husband and I have three adult kids who were all special needs and went through a lot when they were children growing up in Washington (State).”

With that desire to provide support for parents, the group was born.

“To be with other parents who are going through issues, too, is very encouraging because all of the sudden you all talk the same language even though your kids have different problems, you’re still going through a lot of the same issues,” Larson said, who, with her husband, raise three kids with special needs.

Traci Bicknell, who has an early childhood development background, has three children with special needs and has been attending the group meetings as often as she can.

“This group, it helps because you can kind of let your hair down and say, ‘OK, it’s me time,’” Bicknell said.

Bicknell’s stepdaughter, Miranda, 19, has fetal alcohol syndrome. Kelsey, 18, recently had her foot amputated due to a blood disorder. Preston, 17, has cerebral palsy and seizures.

While her husband helps when he can, his work schedule makes it difficult, Bicknell said.

“Through this whole journey I didn’t really have any help as far as resources and people who were ahead of me helping me out,” Bicknell said about her life prior to the group.

Taking part in the group has helped to decrease the feeling of isolation by talking to people and sharing resources with parents who are going through similar situations, Bicknell said.

“We just are there to support parents … so they don’t feel alone,” Larson said. “Parents of special needs kids are often very isolated because their life at home is very different than the average family.”

Larson said another challenge for parents with special needs kids is the suddenness with which they learn about their child’s situation. Many parents go through denial and depression, she said.

Larson’s children were all diagnosed by the age of 8.

“I didn’t have time, when my kids were going through this to think about how I felt,” Larson said. “I had to deal with their feelings and their emotions, and I didn’t have time to stop and think, ‘What’s happening to me?’”

Larson said prior to a diagnosis, parents have expectations of what their child’s life will be academically, physically and emotionally.

“Then all of the sudden, you’re hit in the face with all of these things that aren’t going to happen,” Larson said. “It’s the death of dreams.”

Bicknell said just understanding that her kids were diagnosed was challenging

“My world was spinning so fast — out of control most of the time,” Bicknell said.

While Larson facilitates the group and selects topics for meetings, the parents in the group primarily carry the discussions. The group occasionally brings in local professionals who work with special needs kids, but it doesn’t make recommendations of doctors or therapists to see.

Gene Engebretsen said he recalls one session in particular about teaching parents to relax and take a break.

“The main caregiver is always the last to catch up with everything else,” Bicknell said. “We’re … not taking care of ourselves; we’re taking care of everybody else.”

Larson said friends of parents with special needs kids often have a difficult time relating.

The best thing people who have friends with special needs kids can do is just listen, Gene Engebretsen said.

Before the group, Bicknell said she didn’t have close friends who could relate to her life and taking care of her kids.

“I felt like I was in this own little world because you, as a parent, you get in this own little world and you just get narrow-minded because you’re trying to survive basically, through all of this,” Bicknell said.

The group took a break through the summer, but will kick off for the school year with a picnic for families with special needs kids at 6:30 p.m. on Tuesday at the playground beside Redoubt Elementary School in Soldotna. Larson said families should bring their own meat to grill and buns.

While the parent group is Christian-based, Larson said it is open to parents of different backgrounds.

The group’s meeting schedule is subject to change. For additional information about the group and meeting locations and times call Peggy Larson at 907-260-3621 or 907-394-6310 or email peggysuelee@gmail.com.

 

Kaylee Osowski can be reached at kaylee.osowski@peninsulaclarion.com