Struggling to stay afloat; mother, grandmother raise autistic child on their own

2002-11-28
by Jon Savelle
Journal Reporter
 

KIRKLAND -- Alex Zebley is a bright and active 4-year-old with red hair and a sweet smile. He is the light of life for his mother, Rachel, and grandmother, Joan, who live in Joan's modest house in Totem Lake.

Inside the house, however, are clues that life with Alex is not quite the way it is with the average preschooler.

Knickknacks are absent. The kitchen has a steel security gate. Doors have locks.

The reason: Alex is autistic, a disorder that affects his behavior, his speaking ability and the way he relates to others. He can be so difficult to handle that ordinary household childproofing must be taken to the extreme.

``He climbs like a little jungle person,'' Joan said. When a special gate was installed at the kitchen entryway to keep Alex away from the hot stove, he climbed over it, forcing Joan and Rachel to add a wooden extension to the top of the gate.

``He's so thin, he can go between the bars -- except for his head,'' Joan said. ``If he can find enough things to pile up, he will get the key to open the door.''

Alex is a ``runner'' -- a child who is prone to run off and get into trouble if not aggressively contained. But containing him is a constant struggle, and not only at home. His car seat, for example, has a special harness to keep him from getting out of it. So does the seat on his school bus. But he has figured out how to extricate himself from both of them.

Like many children with autism, Alex tends to fix his attention intensely on particular objects or goals. He isn't easily diverted from them, and will throw loud, screaming tantrums if frustrated.

This is a serious problem in public places and in stores, restaurants, even the McDonalds drive-up window. Anything might catch his eye.

At Target recently, something did. Rachel was forced to haul him out of the store and muscle him into his car seat, unaware that a passerby witnessed the event.

But when the family drove away, they were soon pulled over by a police officer investigating a report of child abuse.

All of which would be trying enough for the Zebleys, but lately things have gotten much worse. Alex's grandfather, whose income supported the household, lost his business and had to file for bankruptcy.

Then he died suddenly in his sleep. He had no life insurance. Joan was left with bills and a mortgage and no way to pay them, or help support her daughter and grandson.

Rachel landed a job through a temp agency, but it ends in December. Her new income triggered a reduction in Alex's Social Security benefits from more than $500 per month to just $252.50.

``To make ends meet, I've been selling his clothes, my clothes, my jewelry,'' Joan said. She is afraid they will lose their house and car.

The Zebleys are not without friends. The staff of Northwest Behavioral Associates, in Totem Lake, has rallied to the family's side by calling attention to their plight.

Dana Salinger, an autism therapist and program manager with the nonprofit agency, said Alex's treatment there was suspended because the family can no longer afford the $10,000 annual cost. But the little red-haired boy had been making good progress, learning play and social skills, and how to ask for things he wants instead of climbing after them.

``He's a bright, smart, adorable little kid when he's behaving,'' Salinger said. ``He responds to therapy really well, he likes to learn, and he's thrilled when he can control his environment. We help him deal with change and transitions, which are very difficult for him.''

But the agency cannot provide the service for free, especially when there are 100 other families on a waiting list. Nor do the Zebleys qualify for all the assistance they need.

``My income almost equals the bills if we don't eat, drive or anything else,'' Joan said. ``And that's just the bills that come in the mail.''

Part of her income is provided by the state Department of Social and Health Services, Division of Developmental Disabilities. Caseworker Christie Seligman, speaking with Joan Zebley's permission, said the family receives payment for Joan's in-home care of Alex. The amount is $737.28 for 96 hours each month, which ends up as $686 when Joan finally gets the check.

``That is Joan's work,'' Seligman said. ``That's the program maximum.''

Besides that payment, Seligman said the division is paying for two months of additional therapy for Alex to help him deal with stress and turmoil following the death of his grandfather. And he is on the waiting list for the state's Family Support Program.

``Oh, hell!'' Joan exclaimed, when asked about the waiting list. ``He's been on the list since he was born. He was sixth in line and then they canceled it.''

Seligman said Alex is still on the waiting list -- in fact he is now first in line -- but no funding is available to move him off the list and into the program.

Alan Kiest, a DSHS administrator in the Eastgate office, could not comment on the Zebleys' case. But he said the services available, in more than 30 programs, are keyed to a family's resources.

``We look at income, autos, boats, real property, pensions,'' Kiest said. ``If they're eligible, we're in business. Our desire is to match their needs with the program.''

Joan said her experience with social service agencies has been frustrating. She has been given a long list of their phone numbers, and called one after the other.

``I'm either overqualified or underqualified,'' she said.

And, on paper at least, the family may look as though it has resources available: Joan's husband left her the house and several vehicles.

But the house has a second mortgage, and not all of the vehicles run. Several are parked out front.

``Right now we're trying to get the place cleaned up, but we can't afford to go to the dump,'' Joan said. She hopes Journal readers may be willing to help.

Northwest Behavioral Associates has set up an Alex Zebley Family Fund to receive donations, which will be passed directly to the family.

And if it should become possible to resume Alex's therapy, Salinger said NBA will find a place for him. He won't drop to the bottom of the list.

But even with help, the Zebleys face a hard task ahead in raising their autistic child.

``Your life is never going to be the same,'' Joan said. ``Ever.''

Jon Savelle can be reached at jon.savelle@eastsidejournal.com or 425-453-4231.