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Wednesday, Mar 25, 2015

Outside support key when raising autistic children

Hernando Today correspondent


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Jeremiah and Maria Sanchez know challenges. Raising two children with autism — 4-year old Nathaniel and 2-year old Adriana — wasn’t how they envisioned married life when Jeremy proposed before being deployed as a U.S. Marine.

Nathaniel was diagnosed at age 2, after Maria noticed some odd behavior. Being a first-time mom, she had no means of comparison. “But I knew something wasn’t right,” she says.

Living off-base with Jeremiah on active duty meant Maria had to be self-reliant. She also was honorably discharged from the Army National Guard before Nathaniel’s birth, so she understands what being focused and on task means. She has applied those skills to getting her son the services he needs.

Nathaniel began early intervention, which Maria believes helped her son gain ground. Through Early Steps, a state-funded program for developmentally delayed children up to age 3, Nathaniel received in-home visits from early intervention therapists.

When he turned 3, Early Steps helped transition Nathaniel into an ESE preschool classroom at Deltona Elementary where he also receives school-based occupational, physical and speech therapies.

So when Maria noticed similar quirks with Adriana she didn’t hesitate. Adriana was evaluated at a younger age than her brother and was accepted into Early Steps. Her progress is promising.

Maria felt in control because she knew what support was available and how important early intervention was to bridging gaps between her autustic children and their peers. Nathaniel paved the way for his little sister.

While raising two children with autism is challenging, the couple is quick to point out that making decisions in their children’s best interest has kept them positive. Jeremiah, who was honorably discharged from the Marines, plays an active role in his children’s lives. The couple approaches parenting as a team.

Without support from outside resources such as Early Steps, and a committed partnership as co-parents, the journey would be impossible, Maria says.

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Dave Kingsbury agrees. Though his first marriage ended in divorce, his belief in the power of active co-parenting is strong. He shares custody with his elder children’s mother, which means he has 8-year-old Jacob and 6-year-old Abigail half the week. “I didn’t want to be a weekend dad,” he says.

Kingsbury says children benefit from two active parents and divorce shouldn’t change that. His son Jacob has Aspberger’s syndrome, complicating the task because routine is more important with autistic children. But he and his first wife, Amanda, are committed to their children. They support similar schedules with Jacob and strive to keep communication between them healthy.

“It wasn’t always easy,” Kingsbury says. They had their typical power struggles in the beginning. But putting their children’s needs ahead of their own was the right thing to do.

Being a strong father participant in any child’s life after divorce is tough. But maintaining open communication about doctor appointments, therapies and special education issues with a child with autism is even more trying on both parents.

And Kingsbury recognizes he might be in the minority in how involved he wants to be with both of his children. But he has seen a direct benefit — particularly with Jacob, who needs a lot more physical guidance than his neuro-typical daughter, Abigail.

Kingsbury sought support through C.A.U.S.E., a local support group for parents and caregivers of children and adults with autism. And while he attended a few meeting that focused on unique aspects of the disorder, he felt alone as the sole father among advocating mothers.

Jennifer Lambke, program coordinator for C.A.U.S.E., agreed that few fathers obtain support from the group she started five years ago. The trend seems to favor mothers seeking networking options for their autistic children. She hopes that will change as more fathers recognize their important rolls in raising their autistic sons and daughters.

A mom who raised a daughter with Aspergers syndrome, Lambke started C.A.U.S.E. because she knew firsthand how vital support — whether services such as Early Steps or networking parent groups — is to the journey.

With support from Baycare Behavioral Health on Cortez Boulevard, Lambke has been able to hold monthly meetings and recently added a children’s social outreach. Two dedicated case manager volunteers from Baycare, Aimee Kraus and Laura Sherman, provide age appropriate activities for the children while their parents get the backing they need.

C.A.U.S.E. holds two support meetings monthly: at Baycare Behavioral Health 6:30-8 p.m. on third Wednesdays; and at Hope Youth Ranch 1-3 p.m. on first Fridays.

Lambke hopes more fathers will participate. Men and women deal with autism differently, she said. She remembered a meeting with a newly diagnosed family at which the dad sat and cried. “They need to know how important they are in their kids’ lives,” she said.

Kingsbury agrees men and women process the diagnosis differently. “Make eye contact with dads as much as moms at meetings,” he advises. “Don’t just assume they both agree.”

Autism is a journey, say those directly involved with the disorder, who hope awareness eventually will transition into acceptance. And with support that presents itself in myriad ways, they say, families and communities are finding it’s a journey with hope.

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