The family connection
Rocky Mountain News
Vail CO, Colorado
BOULDER, Colo. (AP) ” Marilyn Fritzler remembers the good times with her little brother Eddie.
How she’d boost him onto a gentle horse named Buster.
How she’d sing to him as they rode slowly around the family’s wheat farm.
How Eddie’s grin lit up his face like the sun.
But even so many years later, it’s almost unbearable for Fritzler to describe how Eddie’s profound disabilities finally became too difficult for their family to manage. How at 15, Eddie went to live in a state institution ward, a place as unlike his family farm as the moon.
Just like that, Eddie was gone. And his sister was lost without him.
“We were used to having him around and taking care of him,” Fritzler said. “And all of sudden, we felt like, ‘What are we going to do now?”‘
Over the years, contact between the two was minimal and fleeting. But 50 years after he left home, Eddie and his sister have reconnected, thanks to Louise Todd-Stoll, director of individual and family supports at The Arc in Jefferson County, which became Eddie’s guardian in the early ’90s.
The Arc, a national advocacy organization for people with intellectual and developmental disabilities, has begun to focus on reuniting disabled people with their families.
A new online family registry and search service, the FindFamily Registry, is the latest tool in ongoing efforts to reconnect relatives with some of the more than 500,000 disabled people who live in out-of-home residential settings, some of whom have spent most of their lives without family contact.
When Eddie was growing up in the 1940s, it was common for medical professionals to urge parents to put children with disabilities, including Down syndrome, autism, cerebral palsy and other physical or mental handicaps, in state institutions. Forget about them, they were told.
“Doctors said that families would be better off because of all kinds of reasons ” emotional stresses, financial stresses, care stresses,” Todd-Stoll said. “Marilyn’s family was quite unusual in saying, this is our family, and we’re keeping him home. It wasn’t until he was 15 that the family had to start looking at some difficult decisions.”
Moritz Edward “Eddie” Brauch, born July 4, 1941, suffered an illness as an infant that left him severely disabled, unable to care for himself in even the simplest ways. But years of living with Eddie ” feeding him, dressing him, dealing with seizures and toileting ” took its toll on his family, and by the time he reached his mid-teens, it had become unmanageable.
“It was constant care,” Fritzler said. “It was hard for my mom and dad to take care of him. He was bigger and my mother wasn’t well. Finally, it came down to, there was no other way to do it.”
After Eddie went to live in Grand Junction, it wasn’t just the distance that kept the family from seeing him.
“We would go to see him,” his sister said. “It was just every time you’d leave, your heart would just break.”
Sadness had stolen the light from her brother’s eyes and the irrepressible grin was gone. Eddie lost the ability to walk after suffering paralysis on one side of his body. Fritzler remembers touching his hands and how cold they felt.
Institutions typically housed 20 to 40 people together, with large dining and sleeping areas and group showers. Residents received minimal attention and could be at the whim of others who were violent or physically stronger.
In the 1980s, the federal government mandated that state institutions move eligible people into the community in a less-restrictive environment.
“It was the forerunner to community inclusion,” Todd-Stoll said. “It was a big process that took years.”
Eddie moved first in 1992 and several times after that. Fritzler can’t recall if anyone told her when her brother was being moved from one place to another, which happened often. She was contacted occasionally when a problem arose, but Eddie wasn’t really part of her life anymore.
The Arc of Jefferson County became Eddie’s guardian when he was moved into residential care, and Todd-Stoll was determined to rebuild the bridge between sister and brother. All too often, she said, families finally see their child or sibling again at their funeral. That almost happened to Fritzler.
“We ended up contacting Marilyn because we didn’t think Eddie was going to make it,” Todd-Stoll said. “I really wanted to get to Marilyn and make that connection if Eddie was going to pass on.”
But Eddie survived, and with Todd-Stoll’s help, landed a coveted spot at a Boulder group home where he has thrived. After a few months of getting Eddie settled, Todd-Stoll contacted his sister again. They drove together to visit him.
“And Eddie sees Marilyn, and hears her voice, and Eddie for the first time in years started vocalizing some things that no one had ever heard,” Todd-Stoll said. “He knew who Marilyn was. It was such a solid connection.”
For Eddie, now 66, that connection and his new home have been life-changing. He has started eating some foods on his own ” in the past, he was fed solely through a tube in his stomach. That has improved his use of his right arm to the point where he essentially feeds himself, said Chris Baumgart, one of Eddie’s residential caregivers. And that’s remarkable.
“The notion of improvement is not something we really expect,” Baumgart said. “Mostly, it’s about keeping our guys going and providing the best quality of life to make that worthwhile.”
For Eddie, that means taking bubble baths, making music with maracas, having his chocolate cake and actually eating it, too.
And then there’s family time: On one visit, Fritzler brought him the plastic horse they used to play with together. Later, she brought her daughter and granddaughter along.
“To see him now, it’s just wonderful,” she said. “He’s got this spark in his eyes. And when you touch his hands, they’re warm. They’re so warm.”
On the Net:
The Arc Link: http://www.thearclink.org