Readers Care Fund: A helping hand with special-care needs

Its letterhead tries to say it all: "Serving the special-care needs of school-age children and youth with disabilities."

It's a load. But that only begins to tell the stories behind Northwest's Child, a non-profit, private organization founded 17 years ago by Darcy Hupf. This holiday season, it is one of six charities to be aided by donations from Seattle P-I readers through this newspaper's annual Readers Care Fund.

Northwest's Child does year-round for disabled children and young adults what their emotionally and financially challenged parents rarely can do for themselves without a lot of special help.

This should be obvious to a world at large when that world realizes the disabilities these families face. They range through the most challenging -- from autism and cerebral palsy to Down syndrome.

But often it isn't so obvious, and, indeed, can be invisible, Hupf said. Social remoteness and public ignorance too often block the view.

"A lot of our families need us because they are so isolated," Hupf said. "They don't have an extended family or close friends who can relate to them. They're mostly medium- to low-income working families, usually without the chance to get away, even for a school interview."

Hupf's program aims to cover those gaps as they appear during family work hours. As often as not, however, the staff's daytime chores extend into the evening in ways that allow parents and other family caregivers the chance to escape those minute-to-minute pressures of dealing with severely disabled children.

Bowling maybe, a movie, or just coffee with friends.

Vishal, 20, of Seattle, lives with a form of muscular dystrophy that, Hupf said, has left him "completely and totally dependent" on others. Yet, with the help of Northwest's Child, Vishal will soon become a student at Bothell-based Cascadia Community College.

Meanwhile, Vishal has been attending the agency's Aaron's Place adult day care program near the Bastyr University campus in Saint Edward State Park in Kenmore.

And then there's Luke Weiss, 14, who is autistic.

"He's verbal, but out-of-context verbal," Hopf said. "I'll say, 'Hi, Luke,' and he'll say, 'Hi, Darcy,' then turn and walk away. And sometimes I'll say, 'Hi, Luke,' and he'll just look at me as if I were a stranger."

Moreover, as a middle teen, Luke is growing into the edges of manhood where he is fast becoming the strong and not-so-silent type, said his mother, Alesia Weiss, a nurse.

Thus, issues that could be handled within the family without much trouble while Luke was younger are getting to be more than a handful these days, she said. This is especially so now that Luke's father, Dan, a parole officer, has been diagnosed with Parkinson's disease.

Talk about your troubles.

"That's why we've come to rely so much on Northwest's Child," Alesia Weiss said. "They've been a godsend."

Weiss said she and Dan and their two children -- Luke has a younger brother -- have stayed in Seattle, although their families are, respectively, in Alabama and Wisconsin, where studies into autism and work with autistic children is less developed than in the Seattle area.

Both parents spent earlier careers in the military, retiring from posts in Germany to help family members in the States, then moving here for Dan to attend college.

Luke was just a wee thing, then, but by 18 months was not advancing has he should have been. The diagnosis left little to the imagination: autism.

Alesia Weiss does not believe that diagnosis would have been rendered as quickly if they had they been elsewhere -- back in Alabama, for example.

"And I can't tell you how many people have advised us just to stay put, and not go back, because Seattle is in the forefront of trying to figure this (autism) out. We are blessed to be here."

The other beneficiaries of the Readers Care Fund this year are Seattle Education Access, which helps homeless and other marginalized youth work toward college careers; Renton Area Youth & Family Services, helping at-risk children and their families in South King County; the Santas and their elves at the Forgotten Children's Fund; Rise n' Shine, which focuses on children challenged by HIV and AIDS, whether they are infected or live with someone who is; and New Futures, which runs after-school care and family-literacy programs in three low-income, high-crime-area apartment complexes in Burien, SeaTac and White Center.