New expectations: Early intervention, building connections key for parents of special-needs babies

Thousands of South Carolina families face the unique challenges and joys of raising a special needs child. To share their stories and knowledge, we present the first installment of a three-part series on special-needs families. Each piece will focus on families with special needs children at various stages of life: from birth to age 3, school age, and entering adulthood. We hope these stories, along with expert advice and links to helpful organizations and programs, will serve as a valuable resource for families with kids of all abilities. You can also read the series online and find more resources at LowcountryParent.com.

Like any expectant first-time father, Stephen Popadich was already thinking about playing baseball and soccer with his son, teaching him to drive and attending his wedding.

“Naturally you have hopes and dreams for your children … expectations of what your child will be and do,” he said.

But when Nicole Popadich's water broke six weeks early, the couple started on a journey that wasn't anything like what they had expected. It's been filled with both tough times and blessings. In many ways it's more than they could have ever asked or imagined.

In a breech position, Owen was born via C-section in February 2013, weighing just under 5 pounds. Four days after Owen's birth, the Popadiches received the kind of news that would cause any parent's heart to sink: Their son had Down syndrome.

A new normal

The path to having a child with special needs is different for every family, but the emotions are very similar: guilt, exhaustion, stress and joy.

According to the 2009-2010 National Survey of Children with Special Health Care Needs, more than 177,000 children in South Carolina have special health care needs, ranging from asthma to autism to cerebral palsy. Parenting a child with special needs is hard on the entire family, a marriage, finances and the household schedule.

Sloan Todd is the co-owner of Path Finders Team Services, which provides early intervention services to children. She said one of the biggest issues facing families with special needs kids is simply balancing life. Often, a mother quits her job to become a caretaker and manage the multiple therapy sessions or doctors appointments. Parents can also struggle with feelings of guilt that they're neglecting their other children. Families may even downsize to a new home to accommodate a change in their financial situation.

“It changes the family dynamics so completely,” Todd said. “It can turn a family upside down. If you're both working and making ends meet and all of a sudden one parent can't work anymore, that changes everything.”

“I think the hardest part for a family is trying to figure out what their lives are going to look like and how to make it work,” she added.

Indeed, Nicole and Stephen Popadich altered their plans after Owen was born. They had been working in ministry in Greensboro, N.C., with plans to relocate to Charlotte. Suddenly, they were revisiting their plans, thinking about how they would affect Owen and his long-term care. The couple had visited Charleston and dreamed of retiring to the Holy City. After Owen's birth, they looked more closely at making the Lowcountry their permanent home.

They discovered the local Seacoast Church and the Won by One ministry specifically for special needs children and their families. They liked the proximity to the Medical University of South Carolina for any specialized medical needs Owen might have.

Although Owen is high functioning, his parents knew he still would need added therapies to develop his physical strength, speech and more. So about three months after Owen was born, the family moved to Mount Pleasant. Stephen is the college pastor at Seacoast in Mount Pleasant, and Nicole is the director of the church's Inside Track program.

With their move to South Carolina, Owen was enrolled in BabyNet, the state's early intervention system for infants and toddlers younger than age 3 with developmental delays. Nicole said they have focused on early intervention from day one, with Owen seeing occupational, speech and physical therapists.

Now 2 years old, Owen is thriving. He zips around the living room in search of toys and a basket of books. Because his speech is delayed, the family uses sign language while also encouraging Owen to practice the words he has learned to say.

Owen loves the beach, socializing, and music, especially worship time at church. Nicole and Stephen make sure they encourage Owen's independence, letting him put on his own shirt, water the plants and feed the dogs.

“We're not going to baby him because he has Down syndrome,” Nicole said.

Starting early

Such early intervention programs are helpful for children with special needs of all types, health experts say.

Dr. Jennifer K. Poon, a developmental behavioral pediatrician and assistant professor of pediatrics at MUSC, said early intervention is critical to a child's developing brain.

“All these connections are being formed and new things are soaked up so easily,” she said. “If you can attain those services earlier, that can be helpful.”

Much like personal fitness trainers, early intervention experts will give parents exercises, tools and therapies they can continue throughout the week to aid in the child's development.

“Ideally, that early interventionist will be showing you what can do throughout the hours of the day to work on the skills needed to stimulate development,” she said.

Todd of Path Finders Team Services says starting services early can be a “game changer” for children whether they need services in the short term or indefinitely.

Early invention includes everything from speech and physical therapy to teaching a child appropriate play with something as simple as a puzzle. The child may not know what to do with the puzzle so he becomes frustrated and throws the pieces across the room. The early interventionist teaches the child how to play with the puzzle and helps identify issues that can be addressed to offset future delays or problems.

Nicole admits that the idea of therapies for a newborn seemed disconcerting and she wondered if they'd already failed as parents. “It was so hard to hear at the time, but this is just one of the many things I'm thankful someone was brave enough to ask us right away,” she said.

Instead of thinking there was something “wrong” with Owen, Nicole put a positive spin on the therapies, choosing to see Owen as a baby prodigy, she said. “They could see all the potential in him when he was born, and they wanted him to skip a few 'grades' and start school right away.”

After months of one-hour physical therapy sessions, three times per week, Nicole and Stephen can testify to the benefits of early intervention. In August, Owen met all of his physical therapy goals and “graduated” from the regimen.

This fall, Owen will start preschool at Palmetto Christian Academy.

A starting point

Parents overwhelmed by a child's diagnosis – whether physical, developmental or emotional – may be unsure about where to turn. Families who have a child younger than the age of 3 have access to BabyNet, a state resource that provides early intervention services.

BabyNet matches the special needs of infants and toddlers who have developmental delays with the professional resources in the community. BabyNet is funded and regulated through the Individuals with Disabilities Education Act and managed through S.C. First Steps to School Readiness.

Parents themselves can reach out to BabyNet; a doctor's referral isn't required. Once a child is connected to BabyNet, a service coordinator will get in touch with the family to answer questions and help the family through the next steps of determining if the child is eligible for services.

BabyNet services are provided for free to the family and all eligible children receive service coordination. A host of services and therapies ranging from audiology and nutrition to occupational and physical therapies are available, depending on the child's individual needs.

Children with special needs may also be eligible for Medicaid services. S.C. Healthy Connections provides benefits to certain children with disabilities who would not ordinarily be eligible because their parents' income exceeds the limit. Parents also can work with S.C. Healthy Connections Choices, a program that helps eligible Medicaid members enroll in health plans.

Family Connection is a great place to start when it comes to filling out the Medicaid paperwork and getting assistance. The statewide nonprofit organization links families of children with special health care needs and disabilities with resources, support and education.

Family Connection also provides workshops for siblings, resources for respite care, neonatal intensive care support, a parent match, and listing of local parents support groups and playgroups.

Making connections

Pam King of Goose Creek was in her early 40s when she married and became pregnant. Her first pregnancy ended in a miscarriage. When she became pregnant again, her doctor suggested prenatal testing because of her age and previous miscarriage. Through testing and an amniocentesis, King learned that her baby had a third 21st chromosome – the cause of Down syndrome. Her husband, Terry, was working overseas, so King dealt with the news on her own.

“I wanted to consider my options – the socially responsible thing to do,” she said. While ending her pregnancy went against King's beliefs, she felt the need to consider all possibilities.

“It was such a dark time,” she recalled.

King ultimately decided to have her daughter, Sara, who was born Feb. 14, 2012. Looking back on that difficult time, King now says thinking about the “social responsibility” of having a special needs child is ridiculous.

“You have to do what's right in your heart,” she said. “Society might feel something is a burden, but that's not my responsibility.”

For King, establishing relationships with other parents has been a life saver when it comes to managing daughter Sara's Down syndrome.

King is learning from difficulties other parents face, even if their challenges don't include Down syndrome. For instance, Sara, now 3, has gluten and dairy restrictions, so King picks up food tips from a friend whose child has a peanut allergy.

“I was always private and it was important to keep any disappointments and non-joyous things to myself,” King said. “But you can't get help that way.”

Now King is doing all she can to connect with other parents in a similar situation and she encourages parents with special needs children to do the same.

“Immediately connect yourself with other moms,” she said. “I thought I would find out everything from the system, but that is not the case.”

Todd agreed that reaching out to other parents and seeking out community resources is critical to building a support system. Oftentimes, friends scatter after news of a child's diagnosis spreads. The party invitations stop, and parents can feel isolated and alone. Some local churches provide respite care, giving couples a rare date night or a chance to spend time with their other children.

“Seek those out when you can,” she said. “Don't be afraid to ask for help.”

Having the opportunity to step back from the day-to-day demands of their children can make the new normal less stressful and offer some perspective on the life changes, both good and bad.

“We wouldn't be where we are today without him,” Nicole said of her son. “We did this for him, but he has blessed us. He's made us better people. Owen gives us the blessing of slowing down and being more intentional.” LCP

Our special needs series continues in October, when we will explore the experiences of special needs families during the school-age years.