I really haven’t thought this far ahead. Although it is a scenario that every special needs parent faces, or will face, it is one we often push back to the deep, dark recesses of our minds. We are so engulfed with the daily battles with autism, and focusing on small progresses and setbacks that we often forget to look long-term. To those parents who have taken the time to plan for the future for your child’s life without you: congratulations for a job well done; you are probably in the minority. I envy you. This is not to say my wife and I have not had the ‘who will take of our boys’ discussion; we just have not made any formal plans. We took care of life insurance issues years ago, but still have not yet made any preparations for guardianship, etc. Let’s face it: none of us are getting any younger. We both have significant medical histories prevalent in our families. We try to eat well and exercise when we can; trying to minimize the effects of time and extend our lives so that we are there whenever our children need us.
As this article reminds us, it is not only our own health we must maintain, it is vital for our children that we have a plan for them: high school, college, socialization training, job training, group home, whatever the case may be. Our children will be adults one day and they will need our help despite their chronologic age. They need us to provide a path for success, and continue to surround them with loving people who will guide them when we are not around. Time for us to be the grown-ups again. -Ed
But it’s far better than the worst possibilities she imagined as cancer ravaged her and she knew she wouldn’t be alive to help him.
Eight years ago, L.J. and his mother, Helen Reyes, lived in an apartment in Harrisburg. Helen Reyes was single and dying of breast cancer. L.J. has Fragile X syndrome, an intellectual disability similar to autism. He’ll probably never be able to fully provide for himself.
His mother’s final months were filled with worry over what would become of him. Helen Reyes dreamed of finding a gentle institution where L.J. could live out his life, and of somehow raising the money to afford it. It wasn’t to be.
But an old friend, Beth Lehman, read about the situation in the newspaper. She brought L.J. to live with her husband and daughter along a country road near Halifax.
Six years later, L.J. is happy, with friends and a productive daily routine. He bonded with Lehman’s daughter, Brittany, who included him in her circle of friends and assumed the role of his “protector.”
L.J. tells Lehman, “I’m going to live with you forever.” But eventually he’ll have to move, probably to a group home.
“It’s something that has to happen, because I’m not going to be around forever,” says Lehman, 44.
Lehman defers much of the credit for L.J’s success to the life-skills class he attends at Upper Dauphin Area High School. The class dovetails with a larger effort to expand opportunities for young people with intellectual disabilities in rural northern Dauphin County.
It’s a collaboration among the Upper Dauphin, Millersburg and Halifax school districts. It includes about a dozen students aged 13 to 21. Pennsylvania law allows people with intellectual disabilities to attend public school until age 21. That includes those who, like L.J., have already received a diploma with their senior class.
But the big question facing L.J. and many other young people with intellectual disabilities involves what happens after they turn 21.
There’s often a waiting list for funding to enable adults with disabilities to live in group homes or attend employment or other support programs. The options can be especially limited in rural areas such as northern Dauphin County.
However, in northern Dauphin, the county, schools and assorted private entities are collaborating on new ways to help L.J. and others. They strive to avert the idleness and isolation that can trap people with intellectual disabilities, and which can put the full burden for their care, and providing a social life, on their families.
L.J. and his classmates spend part of their school day on academic subjects such as math and reading. They spend part in the “apartment” their teachers fashioned from partitions and bookcases, and which contains a sink, washer, dryer, microwave and toaster oven. “My students leave here with more skills than my own children,” says Bridget Glunz-Wenner, one of their teachers.
For older students such as L.J., perhaps the most important part of their education takes place outside the school building.
On a Friday last fall, that’s what brought them to The Manor at Susquehanna Village, a nursing home of about 200 residents near Millersburg. It’s one of several places where they regularly volunteer. They assembled in an empty community room, where there were met by the nursing home’s director of therapy. “We have some new people who would appreciate a visit,” they were told.
Glunz-Wenner briefed the students:
How do you need to talk when you visit?
LOUDLY. And with a lot of smiles.
Are you going to be silent, or ask a lot of questions?
Ask if they need any of their plants watered.Ask if they need their newspaper or their cards read to them.
Or make their bed.
A student spoke up: “Why can a lot of them not hear?”
Glunz-Wenner, who has been a teacher for 25 years, continually thinks about what L.J. and his classmates will do after their public education ends. It’s critical to her that they find jobs. If they can’t find a job, she wants them to volunteer.
For one thing, they are capable — more so than many people realize.
For another, working and volunteering makes them part of the community, giving their lives a richness that’s hard to otherwise attain. Most importantly, Glunz-Wenner says, they want to work.
“Our students’ work ethics are second to none,” she says. “They are the kids that don’t come to work late, don’t try to leave early, don’t go outside to talk to their friends, don’t text their girlfriends.”
Yet finding work is no easy task, for anyone, in the region of small, scattered communities on the north side of Peters Mountain roughly 40 minutes from Harrisburg. It has a Walmart and a few industries. Mostly it has mom-and-pop-sized businesses.
It also has natural barriers created by towns and businesses spread out geographically with no public transportation. At one time, agencies commonly transported people with disabilities over the mountain to programs and jobs in the Harrisburg area. But bad weather or an absent driver often interfered, and the Harrisburg-area job market has tightened.
So Dauphin County, which controls state funding for people with intellectual disabilities, is trying a different approach. The county shifted some of the money away from sending them to Harrisburg-area programs, and toward supporting them in regular jobs in northern Dauphin County.
Yet other barriers arise. “The community doesn’t always recognize the benefits of hiring a person with an intellectual disability. There’s kind of an outdated understanding of intellectual disability,” says Shirley Keith Knox, the deputy intellectual disabilities administrator for Dauphin County.
To counter that, the county is reaching out to businesses and informing them of supports available for workers with intellectual disabilities. These include job coaches who will master the job and then provide on-the-job training for the person with the disability.
There’s support toward transportation. For example, a co-worker can receive a stipend for giving the person with the disability a ride to work.
An employment specialist will visit an employer, watch the work that goes on, and try to envision a match between a task and a person with an intellectual disability. When a match arises, it often occurs at a business that wasn’t even looking for additional help, according to Keith Knox. “We find the job the employer needs done and we figure out how our students can get the job done,” Glunz-Wenner says.
Keith Knox stresses that the intent isn’t to rope employers into charity. It’s to supply them with an employee who will add to their company’s productivity. Still, it requires a careful process to find situations that will work out long term, and don’t amount to forcing a round peg into a square hole.
“We don’t want to put a kid on a farm if they don’t like animals or have allergies,” Glunz-Wenner says. “We always look at the student’s strength. If we have a good employee who is open to the idea, we can find a way.”
Meanwhile, she and fellow life skills teacher Susan Ziegler strive to make sure the students are ready when opportunity knocks. The students did school janitorial work over the summer. They launder garments for assorted school teams. They help a local church that produces thousands of chocolate Easter eggs during an annual fund-raiser.
They do recycling projects. These include collecting used paper and tissue boxes at school and turning them into notepads. They volunteer with Meal on Wheels. Their teachers get them registered to vote. This serves the normal civic purpose while also requiring them to assemble birth certificates and Social Security cards — items they’ll need to have handy when applying for jobs.
Dauphin County Commissioner George Hartwick III has witnessed the students and the effort and become a major cheerleader. While it involves government funds, the key is the collaboration involving schools, businesses and churches in northern Dauphin, according to Hartwick. “It’s not government run, it’s people run,” he says.
In northern Dauphin County, there are 91 people of working age who have intellectual disabilities and who are registered for county supports. Of those, 54, or 59 percent, are unemployed, according to Keith Knox.
At the nursing home, the students wear Upper Dauphin football jerseys, in preparation for the homecoming game they’ll attend later. They’re scheduled to sing the Star-Spangled Banner before the game, and they’ve been rehearsing the song. Most of them will remain with their teachers in the hours between when school ends and the game begins. They plan to eat at a local pizza shop, then head to the stadium.
A group of students with intellectual disabilities from three high schools in northern Dauphin County will carry the flag and sing the The Star-Spangled Banner at tonight’s Upper Dauphin-Newport football game. The took some time to rehearse today while doing volunteer work at The Manor at Susquehanna Village, a skilled nursing facility near Millersburg.
Shooting for the stars
Beth Lehman met Helen Reyes many years ago when both worked at a weight loss center. She visited when Reyes was in the hospital delivering L.J.
Lehman soon had a daughter, and the women were close during their early years as parents.
But over time, Reyes realized L.J. had a disability. She became consumed by the search for medical solutions and later by her fierce advocacy for L.J. They lost touch.
Eventually Reyes, now dying, went public with an appeal to raise money to provide for L.J. Lehman read about it in the newspaper. Unable to find a phone number for Reyes, she went to a fund-raiser listed in the article.
Reyes wasn’t there, but L.J. was there with his uncle. Lehman told the uncle she and Reyes had been best friends and asked him to relay her phone number.
A call came not from Reyes but from L.J., who left a message stating, “Hey best friend, it’s me. I’m calling about my cats.” L.J. left no contact information, but the answering machine stored a number Lehman used to reach Reyes. They reconnected.
L.J.’s father had been absent for years, his uncle lived in California, and Reyes apparently believed her mother, who maintains a close relationship with L.J., wouldn’t be able to care for him long-term. When Reyes was near death, Reyes begged Lehman to become L.J.’s legal guardian.
Lehman’s mother had a foster brother with cerebral palsy, so she felt comfortable around people with disabilities. Her husband, Bryan, had no such familiarity. Still, she felt she couldn’t refuse the deathbed request. She told her husband “this isn’t up for discussion.”
Bryan Lehman, is a dispatcher for Sysco, the food distributor, where Beth Lehman also works. His reaction was “this is not a two-year or five-year commitment, this is pretty much a lifetime commitment.” But he also saw what it meant to his wife.
Reyes died and L.J. went to a foster family. But Beth Lehman concluded it wasn’t a good fit and, as his guardian, brought him home. “L.J. is part of our family now,” says Bryan Lehman, 49.
The Lehmans are in no hurry for L.J. to leave their home. Their most pressing concern involves whether he’ll be able to transition to a job when he turns 21 in spring. “He needs routine once he doesn’t have school every day,” Beth Lehman says.
L.J. is highly fashion conscious. He and a county job coach have recently begun exploring the possibility of launching a business in which he would make scarves from old T-shirts.
Helen Reyes once dreamed of L.J. living among caring people in an institution surrounded by lawns and trees. Her dream was based on the movie “Rain Man,” and the institution where the character played by Dustin Hoffman lived.
The Lehmans and Glunz-Wenner believe L.J. can have a life that fulfills his mother’s hope, but it won’t require an institution.
“What I want for L.J. is way beyond that,” Glunz-Wenner says. “We’re going to shoot for the stars with L.J.”
- Who will love her son?: 2004 story chronicled ill mom’s search for a home for her disabled child (pennlive.com)