Jill's House provides some moments of peace for parents of special-needs children

By Petula Dvorak
Tuesday, December 7, 2010; B01

You can hear the tired in Jan Butters's voice.

Until several weeks ago, she'd never spent a night away from her son, who has cerebral palsy and other disabilities.

If he wants a toy, she has to put it in his hand. If he wants to watch a movie (he loves "Mary Poppins" and watches it relentlessly), she has to set it up for him. She feeds him, diapers him and exercises his limbs and shifts his teenage body numerous times each day.

This has been her life for 15 years.

"Basically, you're doing everything for him," said Butters, 50, who can't just call a sitter and catch a movie with her husband.

That kind of a date night would run about $600 for the couple, given the specialized care that their son, Rolfie, needs.

This fall, a fancy new place opened in Vienna that will give him that level of care for $75 a night.

Called Jill's House, it boasts a swimming pool, gym, music room, art center, suites with bejeweled ceilings that look like outer space and a playground so cool, I'd call it Seven Flags.

There's a ceiling track that snakes from the bed to the bath, so that a guest can be carried, via sling, for bathing.

There's the indoor-outdoor lock system, in case a guest bolts.

Picture cards all over the place let the guests point to food, water or a toilet if they can't articulate a need. The indoor swimming pool, surrounded by Bahamian decor, has water-proof wheelchairs, a ramp, a sling and one lifeguard for every guest.

Each action - feeding, clothing, bathing and playing - has a huge and intricate set of equipment and systems. The resort is a place for kids whose primary medical diagnosis is an intellectual disability, physical disability or developmental delay.

And when you see all the stuff needed to simply spend the night, you get a better picture of what Butters has done every day for the past 15 years.

When she took Rolfie to Jill's House in October as one of the facility's first guests, she was nervous, despite the soaring ceilings, five-star decor and professionally trained staff.

"It was very hard, initially," Butters said. She had butterflies in her stomach when she and her husband dropped off their only child.

She wasn't sure the staff would know the right bedtime stories for Rolfie; what would happen if he got angry because he couldn't stand the sound of their voices, as he often does with her; how he would do in the sensory room.

The Butters spent the first night nearby in their Gaithersburg home. When all went well, they waded farther into uncertain waters and went to a hotel by the sea.

"We spent time in the car talking. Just talking," she said, as though describing an exotic delight.

They had dinner, went to a show, slept throughout the night.

"We went to see a stand-up comic!" she gasped

Butters acted as though they had gone to Bora Bora.

Rolfie was equally impressed with his surroundings, his father, Rolf Butters, said. He loved the sensory room, which has a waterbed, lava lamps, disco ball, bubble tanks and a curtain of microfiber hairs that change color. (I asked if they'd rent the room to moms, allowing us to lock ourselves in with a glass of chardonnay for 30 minutes. The staff said no.)

No parents (and no vino) allowed. But the rooms are designed so that siblings can bunk in for a visit, if they like.

Jill's House was constructed this year alongside McLean Bible Church in honor of the daughter of the church's senior pastor, Lon Solomon.

It is open to any child 6 to 17 years old with an intellectual disability, not just church members. There are approximately 40,000 such children in the Washington area.

Their first guests arrived in October, just six kids over a weekend. Within a month, Jill's House was up to 12 kids plus two of their siblings on the weekends.

It's a great place for the kids to visit and a respite for parents like the Solomons, who struggled mightily after their three sons were followed by a surprise daughter, Jill.

All was normal with their baby girl until she was 3 months old, when her mother, Brenda Solomon, noticed an odd trembling in one hand. A grand mal seizure followed several months later. On her first Thanksgiving, she had 19 of them, Solomon said.

Thousands of seizures later, her care became all-consuming, and her brothers could sense that their mom's energy was constantly being usurped.

Solomon spent her days crying and calming the seizures.

It's common for families with special-needs kids to plummet into crisis. They wrangle with high medical bills, the grief of lost dreams for their child and that child's relentless, engulfing needs, Solomon told me.

More than half of children with special needs live in single-parent households because divorce is a common consequence of all the strain, according to the Sloan Work and Family Research Network.

It can be like living with a toddler for two decades. Only the toddler might weigh more than 100 pounds and knows how to open the front door.

The Solomons began care and support groups at church for parents like them, but they knew there should be something bigger, more inclusive.

"I looked around and thought 'What in the world are all these other families doing?'" Brenda Solomon said.

They saw a respite-care facility during a trip to Israel, but it was not as extensive as what they wanted. There are few other facilities in the nation that do what they were aspiring to - a full-service respite home that would not only help families get a break but would also be a dream vacation for the kids themselves.

The place looks more like Great Wolf Lodge than a hospital. My kids would beg me to stay if they saw it.

The Solomons spent seven years raising $7.2 million and navigating state regulations to create Jill's House. They need about $5 million more to run it seven days a week at capacity, which would be 45 children.

Stays at Jill's House are now a part of the family budget at Tolu Peters's McLean home.

Peters couldn't remember a night when the baby monitor didn't wake her, when her 15-year-old, Temi, didn't cry for her in the dark.

"Temi is extremely restless," Peters said, after Temi burst into the room singing then relentlessly bounced on one of the chairs. "She's active from the time she's awake until the time her eyes close."

"Last night, she was up until 2 a.m. And I had to be up for work at 5 a.m.," Peters said.

I got tired listening to her.

Like the Butterses, the Peterses spent the first night that Temi was at the resort at home, worried about how it would go and freaked by the sudden silence in their home.

They began to relax and enjoy themselves on the second night, after the staff e-mailed them a picture of Temi having fun.

They booked another weekend right away.

Temi skipped up the path when she returned to Jill's House, the night I met her.

She headed straight for the art room and gathered supplies, then colored furiously, smiling and laughing.

For a few minutes, I watched her mothers' shoulders drop, her breath exhale. Everyone was at peace.

For information on Jill's House, visit jillshouse.org.

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