Families 'able to breathe' with new autism program

"Watch me!" Nine-year-old Constance Barnwell furiously pedaled her bike down the driveway and east on the street in front of her family's Northeastside home.

Seven-year-old Darius "DJ" Barnwell Jr. trailed after her — one hand in his mouth and the other gripping a tablet playing "Mickey Mouse Clubhouse." DJ ran just far enough to keep his sister in sight.

Tamika and Darius Barnwell stood nearby, smiling as they watched their children's antics.

Eighteen miles away, Renee Keltner and her daughters, Gabriel and Danni, were finishing their day.

A program launched late last year by the Autism Society of Indiana has helped both families make the most of those simple moments. The program provides up to 20 hours per week of respite care to families with children who have autism — kids like DJ, Gabriel and Danni.

Autism is a brain development disorder that is characterized by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. The diagnosis covers a large spectrum of skills, symptoms and levels of impairment.

For families in the program, the autism society hires someone to come into the home to give the primary caregivers a break. They can "replenish and spend time doing things that feed their spirit, which in turn make(s) them better caregivers," said Rachel Lewis, the organization's respite coordinator.

Although there have been kinks in the new program, it has allowed families, such as the Barnwells and Keltners, to reclaim a bit of themselves from the whirlwind of therapy appointments and schooling.

HighPoint Global, an Indianapolis-based government contractor, donated about $125,000 per year to fund the program.

HighPoint CEO Ben Lanius' 16-year-old son, Eli, has autism and Down syndrome. Lanius said he knows firsthand how respite care can improve the quality of family time. He privately hired a caregiver for Eli.

"It really made the family dynamic work," Lanius said.

He said he hopes the respite care program will do the same for other families. And the stories of these families bear witness to the need.

'I want my life to be more than autism'

When the autism society contacted Renee Keltner about joining the respite program, she said she didn't think she deserved it. She was used to doing things on her own.

For most of her daughters' lives, Keltner has acted as a single parent.

Her husband, U.S. Army Sgt. Jordan Keltner, has served in Afghanistan and in South Korea, where he is stationed today.

Both of their daughters, Gabriel and Danni, were diagnosed with autism at early ages.

At first, Gabriel met developmental milestones. The little girl, born in 2007, spoke her first word and first sentence. But then she started to regress. Gabriel panted, flapping her arms and legs as though she was in pain, her mother said. She stopped speaking.

The Keltners knew something was different about their younger daughter, Danni, shortly after she was born in 2008. She screamed incessantly. The little girl also hated light, wind and people. Renee Keltner had to hide out of her daughter's sight while feeding her a bottle.

Doctors said Danni likely would never talk and Gabriel would never get beyond a first-grade education.

"That's where I started grieving the children I would never have," Renee Keltner said. "It's not about them being normal. It's (that) I don't want them to struggle."

She spent the next few years shuttling her daughters to therapy and early education — more than 25 appointments per week while they lived in Denver.

She measured success in moments. The first time Gabriel threw peas and signed "ball." The first time Gabriel said "I love you" after her regression. The first time Danni signed the word "more." The first time they both sat at the dinner table for two minutes without a tantrum.

In 2013, she and the girls moved to Indiana to be closer to Jordan Keltner's family. They bought a home on the westside of Indianapolis.

The girls, now ages 6 and 7, have continued to improve. They speak well and are friendly with visitors. They recently completed first grade through home-schooling.

But Danni still struggles with sleep issues. And Gabriel battles her emotions and aggression toward animals. She hits, punches or bites herself to restrain herself from it.

Renee Keltner has used her respite time for grocery shopping, errands and reading a book.

"An hour shopping trip not taking three hours for me is a huge break," she said. "I want my life to be more than autism."

'Stuck on standby'

DJ Barnwell was diagnosed with autism and developmental delays in 2010. At the time, he received services three times per week.

The family couldn't coordinate the sessions around their work schedules, so Darius Barnwell agreed to stay home while his wife, Tamika, worked.

At first, Darius Barnwell said he was "gung ho" about their plan. But years later, he said he felt "stuck on standby."

"It's hard not to work," he said. "I didn't realize how much it took a toll on me."

DJ's diagnosis also affected the Barnwells' marriage.

Tamika Barnwell said they were stressed out and frustrated by trying to get DJ the help he needed and by people's ignorance of his challenges. People judged the Barnwells or made snide comments when DJ acted out in a grocery store or church.

The 7-year-old is nonverbal, but makes unintelligible sounds.

Tamika Barnwell called the autism society several times for help. Then the nonprofit reached out last year to offer the Barnwells a spot in the respite program.

Darius Barnwell said he wasn't sure about having a stranger watching DJ.

"I just don't trust nobody," he said. "My son can't tell me what's going on."

But parents interview potential caregivers to select someone who is right for their home.

Tamika Barnwell persuaded her husband to give it a try, and they were accepted into the program in January.

The couple stayed home the first few times the caregiver came over, doing odd things around the house or staying in the garage. Within the month, they allowed her to be alone with DJ and his sister, Constance.

The Barnwells said DJ has adapted well to having a caregiver.

He's also made progress in therapy. He recently left the kitchen table and put his plate in the sink without prompting, Tamika Barnwell said. His speech therapist said he mimics sounds.

The Barnwells said they can't wait to hear DJ's first words.

"It could be 'you stink,'" Darius Barnwell said. "I would say, 'I sure do, son. Thank you. I'll go wash up just for you.'"

'Able to breathe'

The program is largely successful, despite some growing pains.

Renee Keltner and the Barnwells said it has great potential, but has been hindered by turnover in the caregivers. Both families are interviewing for what will be their third caregivers this year.

That can be difficult for the children.

Tamika Barnwell said it takes a lot for DJ to warm up to someone. Barnwell said she felt her daughter, Constance, was speaking for both kids when she asked why caregivers kept coming and leaving.

"Switching respite providers has become very stressful," Tamika Barnwell said.

Lewis, respite coordinator for the autism society, said they don't have enough caregivers to meet the demand. The positions are part-time with no benefits. Lewis said most of their respite care providers are in medical school or have work experience, training or a personal connection to someone with a disability.

Still, Lewis said the program is "exceeding all our expectations."

Five families are receiving respite services, and two other families will soon be matched with caregivers.

The autism society holds focus groups with families to learn how it can improve the program. Lewis said it's rewarding to see the families connect with one another.

"This is just a gift," she said, "and we're doing our best to make sure we can bring this gift to as many families as possible."

Lanius said he's received appreciative letters from parents. He told The Star that he'd like to see other companies donate, so the program can serve more families.

As Lanius said: "It feels like people are able to breathe."

Call Star reporter Marisa Kwiatkowski at (317) 444-6135. Follow her on Twitter: @IndyMarisaK.

Become a respite caregiver

The Autism Society of Indiana needs respite care providers to serve the families on its waiting list. It is a part-time contractor position without benefits. The respite care provider's work schedule is based on the family's needs and may vary from week to week.

For more information and a full job description, visit http://www.autismsocietyofindiana.org/respite-care-ally/4586829497