Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: THURSDAY, October 19, 1995 TAG: 9510190005
SECTION: EXTRA PAGE: 1 EDITION: METRO
SOURCE: BETH MACy
DATELINE: LENGTH: Long
If you see a father carry his 9-year-old son, screaming and flailing, onto the school bus, would you assume the worst?
And if you walked into Peter and Sue Scheibe's Roanoke County house and noticed the scars on the wall, the broken coffee table, the bags under their sleepless eyes, what would you think?
The Scheibes are used to people's assumptions.
They know that most people have no idea why they were up all night - because their autistic son, Steven, became fixated on his basketball and wandered outside at 4 a.m. trying to find his pump.
They know that most people couldn't imagine their son getting so flustered by a routine fourth-grade field trip to Explore Park that, as soon as he got off the bus, he began throwing things and shouting, ``Mommy, kill me.''
It took Sue an hour of physically restraining Steven, listening to him cry about their cat Blossom, who died years ago, before she finally got to the crux of his problem that day: ``There had been a wagon ride, and he was scared he was going to fall off,`` Sue says.
A change in his routine, not feeling a part of the group - most kids can verbalize these discomforts. But Steven's disability makes him vent his rage physically instead of through words.
Everyone at school ``thought he did very well, but there was no awareness of the price that was paid at home. ... People's kneejerk reaction when they see this is always to think, `The kid can't behave, he's spoiled. Or the family can't get control.' ''
The Scheibes see what's happening in the political wars - dollars that used to fund education and welfare now going toward prison construction instead - and they fear their son Steven will one day become a casualty.
``Peter and I are not going to live forever,'' she says. ``And my worst fear is that Steven will one day be in prison. ... I wanna know that when I leave, there will be a little boy, a man, who can be an accepted member of this community.''
So Sue is waging a one-woman battle on both the public and private fronts. On the weekends she's a pediatric nurse. And during the week, while Steven's in school, she works on building community - by strengthening policy and by strengthening neighborhoods.
She's a member of one of Roanoke County's two family-assessment and planning teams for at-risk kids, and serves as regional coordinator for a group called Parent to Parent, which pairs families of children with similar disabilities for support. She's also become a statewide voice for the group Parents and Children Coping Together, in addition to facilitating a parent support group and sitting on the board of Blue Ridge Community Services.
Most importantly, she says, ``I do a lot of talking on the phone.''
She talks often to other parents who feel isolated and stigmatized because of their children's mental, emotional or behavioral disorders. And she's come to the conclusion that only through building communities will they be able to counteract the weakening safety net for at-risk kids and the poor.
She doesn't want pity for her sleepless nights. She wants people to start thinking from their hearts.
Like her neighbor Ed did the day Steven wandered off while Sue was in the bathroom. ``He did not miss a heartbeat. He was ready to go out looking for my son with his car keys in hand.''
Like the teen-agers who work at King Video do every time they see Steven walk through the door. Instead of backing away from Steven's involuntary tics and gasps, they talk to him about video games. They remember his name.
Like the man in Kroger who noticed Peter having to wrestle Steven, mid-outburst, to the aisle floor. Instead of staring or walking blindly past, the man asked Peter, ``Can I help you?''
``We have a neighbor across the street who, every once in a while, will write us a note and say, `We know how much you love Steven; we can see it in what you do.'
``Those are the things that carry you through the hard times,'' Sue says.
She was amazed at the amount of time people took to watch and debate and read about the O.J. Simpson trial - and yet they were too busy to check on their next-door neighbor. ``What happens is you can put O.J. and Bosnia away because they won't really affect your everyday life. But this is right here, these families who need help are right here.''
Some children in the neighborhood have called Steven a ``psycho'' or told him, ``I don't want to play with you.'' Their parents, not knowing what to do or say, stand by idly.
Their fear prevents them from connecting. Their fear prevents them from caring about the other kids who get pregnant or skip school or go to jail. The kids they believe to be different.
``We've lost a lot of our thinking with our hearts, from the national level all the way down,'' Sue says. ``We need to start caring again about what goes on outside when we close our own doors.''
tag: Beth Macy's column runs in Tuesday and Thursday Extra. She can
be reached at 981-3435.
by CNB