Thursday, April 26, 2012

Defying the Odds. A Love Story

We all want our children to grow up happy and healthy.  We want our children to have love and security. If our child has a disability is having these dreams and goals for our child something that will become a reality?  I want this for my son and will do what ever I can to make sure he has the security and resources that he needs to attain these goals.

Here is a beautiful story about a couple in love.  And oh yeah, the each happen to have a disability.  Read on about this couple and share their joy.

Defying the Odds

An inside look at a couple with development disabilities

Wednesday, April 25, 2012

Hal and Lisa relax together in the apartment they share. They split the cost of rent, bills and groceries equally.

Hal Schultz and Lisa Barcus sit patiently in their apartment. Hal has a big smile on his face as he answers every question with ease, jumping at the chance to elaborate on a story that comes to mind. Lisa sits across from him, reserved and shy. When I ask her a question, Hal encourages her to answer by gently saying, “You’ve got this one honey.” As Hal speaks with pride about how they met, Lisa sits back in her chair, carefully listening as he explains how their love blossomed.
Although Lisa and Hal’s love story is comparable to any couple, something sets them apart. Lisa, 31, was born with Down syndrome, a genetic disorder that affects the body and brain’s normal development, while Hal, 36, was born with the congenital disorder cerebral palsy, which impacts how the brain and nervous system function. Down syndrome can cause mild to moderate intellectual impairment, and cerebral palsy can affect one’s movement, language and memory. Hal’s cerebral palsy is a mild case, while Lisa has trisomy 21, the type of Down syndrome where her 21st chromosome is affected; instead of two chromosomes she has three. Despite having to grow up with many odds against them, their supportive families helped them thrive in their home and school environments.
Jennifer Carroll, resource specialist at the National Down Syndrome Congress in Roswell, Ga., says that there was a time when parents were told to put their children with developmental disorders such as Down syndrome into institutions. The congress, which provides information, advocacy and support for individuals with Down syndrome, believes that 50 years ago these children were kept at home and most people would never see a child with disabilities out in the community. “About 20 years ago is when things started to change,” Carroll says. “It was then that children could access speech therapy and occupational therapy. They began going to school, and their regular peers were able to learn alongside the students with disabilities.”
In the U.S. today, there are an estimated 400,000 people affected by Down syndrome and 500,000 people affected by cerebral palsy. Caroll says less than 1 percent of people with Down syndrome get married, but she hopes that number will soon change. “Last year we had our national convention where more than 300 individuals in the U.S. attended,” Carroll says. “Out of those 300 individuals, I would say we had two couples who have been married, a lot of boyfriends and girlfriends and a lot of engaged couples.” As the saying goes, all you need is one; even people affected by developmental disabilities need love in their lives, which leads to Hal and Lisa’s story.
Love at first sight
Hal and Lisa’s love story began six years ago at a national sales convention for people with developmental disabilities. At the time, Hal lived in Overland Park while Lisa lived in Lawrence. When they both traveled to the convention, Hal’s friends mentioned Lisa’s name to him explaining that he would really like her. “My friends said they knew Lisa was a little bit shy so they decided to join us when we met,” Hal says. “And that’s what happened. I was a little bit nervous, I don’t know about her.” Lisa, now smiling, shakes her head when asked if she was nervous, and replies with an immediate no.
That trip to Anaheim where they first met was one of their best memories because they were also able to go to Disneyland together. “We got to go to a special part of Disney with a lot of rides and food,” Hal says. “That was really fun.” Within a year of dating, Hal told his mom that he was moving to Lawrence for Lisa. That was five years ago, now the couple is currently living together, going through their everyday tasks by each other’s side.

Thriving in the community
Although Lisa and Hal are able to live alone, together in an apartment in east Lawrence, they still receive support from Cottonwood, an agency whose mission is to help people with disabilities shape their own future. Cottonwood is considered a full-service agency that serves more than 580 people by offering day programs, residential programs and employment programs. In Lisa and Hal’s case, it provides them with different employment opportunities through contracts with Cottonwood as well as different places in Lawrence.
Hal works five days a week at Cottonwood and the nonprofit organization the United Way, to support people with developmental disabilities in Lawrence. Lisa is also employed at Cottonwood and spends two days a week at McDonalds as well. Peggy Wallert, the director of community relations at Cottonwood, worked directly with Lisa and Hal and believes it’s a remarkable feeling to be a part of something that is making such a difference in people’s lives. “There is a lot more that I take home every night than I could possibly give,” Wallert says. “You learn so much, it’s like being in a ‘Cheers’ environment. Everyone knows your name and wants to share with you. Hal and Lisa, and all the people that work here are tremendous.”
While working during the day keeps both Hal and Lisa busy, they are able to spend their nights together cooking dinner, watching TV or going to different Parks and Recreation activities. “They make each other laugh and help each other when they are sad,” says Lisa’s mom, Angie Barcus. To cheer each other up after a long days’ work, Lisa gave Hal a cassette tape while Hal surprised Lisa with sacks of candy. They also make sure to help one another around the apartment, and always cook dinner together. “A great thing about them as a couple is they are so complementary with their strengths and weaknesses,” Barcus adds.
As far as bills go, they both split their payments equally, each paying 50/50. They also have their own, individual lease on their apartment, and when it comes to groceries, they buy their own separate things. “They have a staff person from Cottonwood pick them up and they always schedule their rides whether that is to the store, work or night activities,” Barcus says. Technically, Barcus and Lisa’s dad are her guardians, but they still urge her to make her own decisions and are amazed by everything she has accomplished, including being together with Hal. “I think everybody should have a partner in life,” Barcus says. “They are a great couple, and it is neat to see that yes, it can happen. I hope all people regardless if they have a disability or not can have what Lisa and Hal have.”
Just like any couple, Lisa and Hal have experienced different obstacles in their relationship. When they first started dating, Lisa had some medical problems that were hard for Hal to handle. “Hal was very concerned about Lisa,” Barcus says. “That was probably the worst obstacle they have dealt with, but Hal was very supportive, and they did very well working together to get each other through it.”
The two aren’t perfect though, as they do fight from time to time. Usually when they argue, they can work it out themselves, but once in a while they will turn to Barcus for help to sort out their problems. “Sometimes Lisa or Hal will call me and say what happened,” Barcus says. “I try to listen and give them their options of what they can do.”
Another topic that the couple must deal with is the possibility of having children of their own. Barcus has discussed her concern with Lisa about having children and the possibility that if she did, her children would be likely to have Down syndrome. Resource specialist Carroll says that because Hal does not have Down syndrome, there is a 25 percent chance that the couple’s children could be born with the disorder. “They definitely know the issues and the fact that if Lisa ever became pregnant, there is a chance of having a child with Down syndrome,” Barcus says. “I think they understand that along with the physical parts of their relationship.”
Natural Ties
One organization that’s become prominent in Hal and Lisa’s lives is Natural Ties, a KU organization founded in 1988, that strives to integrate people with developmental disabilities into college life. The KU greek system plays a significant role in Natural Ties as it was started by the fraternity Sigma Alpha Epsilon after they formed a bond with a boy who has developmental disabilities and made him an honorary member of their fraternity. It was then they decided to create an organization that could help many people with disabilities living in the community. Now, almost every fraternity and sorority on campus are paired with one or more people with disabilities and are able to engage in different activities with them. Lisa has participated in Natural Ties for the past 10 years, while Hal has participated the past six.
Andrew Edmunds from Prairie Village, and Mike Lierz from Saint Joseph, Mo., both sophomores and members of Beta Theta Pi fraternity, have been paired with Lisa and Hal since the start of their freshmen year. Every Wednesday they drive over to Lisa and Hal’s apartment to pick them up and take them to a Natural Ties event, such as holiday parties, movie nights and game nights. “They love events where they can eat,” Andrew says. “Hal likes Cherry Coke and Lisa likes Dr. Pepper.” Hal agrees with this statement saying that their favorite event is when they go out to eat at CiCi’s Pizza. Although Andrew and Mike did not know what to expect before their first time meeting Lisa and Hal, they have developed a friendship with them that continues to grow every day. “They always remember everything you say,” Mike says. “We’ve gotten really close the past two years. We absolutely consider ourselves friends with them.”
For some students, Natural Ties is all about forming bonds with people they normally wouldn’t interact with. Co-director and senior Erin Atwood, Topeka, has been involved with Natural Ties since her freshman year and thinks the organization is really good for college students who don’t know how to act around others who have disabilities. “Natural Ties puts you in a very laid-back, relaxed environment,” Atwood says. “Going to these events and being with the same people every week, you really do become friends.”
Hal and Lisa know just about everyone at Natural Ties as they have formed many lifelong friendships through the expanding organization. “There are about 100 ties,” says Caroline Godfrey, social coordinator, junior from Leawood. “We have really grown. Sometimes it is challenging because you have to plan a big enough space and enough food for 200 people. But it is definitely worth it when you see that moment where everybody is having a good time, the energy of the event is up and you can tell there is no stress living in that moment.”
Lisa remained very quiet throughout the evening, listening intensely to everything Hal said. It wasn’t until my last question that she sat up, eyes wide, ready to speak. “I have something to say,” she said in a gentle voice. She turned to look at Hal for a brief second then turned back to me. “When I first met him it was kind of like fireworks shooting off.” That answer says it all. Regardless of their disabilities, it is safe to say Lisa and Hal share a love that anybody should envy, a love that outweighs it all.

Rights, Government Benefits and Marriage

Jennifer Carroll, the resource specialist at the National Down Syndrome Congress says that sometimes it is difficult for people with Down syndrome to get married. Individuals with the disorder receive social security benefits, but if they were to marry, those benefits would disappear. "That's one of those things I think is very unfair," Carroll says. "They need that money to pay rent and utilities, it's not enough to live off of, even if each spouse has a job."
Because of these financial difficulties, a lot of couples choose to live together without receiving a legal marriage license. "There are a lot of programs that provide services for people who want to live together on their own," Carroll says.
Married or not, couples with developmental disabilities are learning to overcome government regulations by living their lives to the fullest.

Be gentle.

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