The House that Hope Built
Paul and Susie Nathan were married two years when Lyndi, their first child, was born in March 1987. From that day on, life in the Nathan household was never the same.
Susie describes Lyndi's birth as perfectly normal. But when Lyndi was less than a year old, Susie began to notice that the baby's developmental motor skills were lagging behind infants of comparable age. Consultation with a neurologist confirmed the family's worst fears when Lyndi was pronounced severely retarded. There was no diagnosis, recalls Susie, 38, who says that in 50% of the cases involving retardation, there isn't any.
The parents describe their immediate reaction. "Devastating," says Paul, 40. Susie felt something less than shock, she says, because she already knew something wasn't quite right. At the same time, she felt compelled to do everything she could to help bring Lyndi to a higher level of functioning.
Through early intervention at United Cerebral Palsy, Lyndi learned how to chew, crawl, sit up and eventually walk, at age 6. But she has no language skills and lacks sufficient hand control to utilize sign language. "Right now she functions at approximately a 1-year-old level," says her mother. Eating, dressing, bathing, brushing her teeth and toileting all require assistance.
Her mother describes Lyndi as very social and extremely affectionate. "She loves tumult and being around other people, is very happy and never in a bad mood." The only time Lyndi cries is when she is in pain or ill.
When Lyndi was around 5, Susie was so stressed out that she began to explore options for her living outside the home. There were no "good" options, says Paul Nathan. And there still are no good options, adds his wife, which provided the impetus for her and Paul to initiate and help create the present one.
Lyndi currently attends a special multi-handicapped program at Orchard Middle School in Solon. A teacher and two aides provide physical, speech and occupational therapy throughout the school day for Lyndi and her classmates. Susie prefers to have Lyndi in a school setting with mainstreamed children, as opposed to a county program. It's important, she says, that other children see and learn that not everybody is the same.
Every Sunday Lyndi goes to Park Synagogue, where a special-needs Sunday-school program for retarded children is held. A retarded boy who can speak stands at the doorway and waits for Lyndi. When she arrives, he shouts, "Lyndi, Lyndi," and he hugs and kisses her. Then he takes her by the hand and says, "I have your chair waiting, Lyndi, and I am going to feed you."
A caretaker assists Lyndi five hours a day after school and eight hours on weekends, all of which is paid for by the county Individual Options Waiver program, which helps finance in-home care. JFSA is the provider.
On the day of our interview, Lyndi was away at an Orthodox camp for severely retarded children, accompanied by Dassi Levine, a recent graduate of Hebrew Academy.
Unlike other families, the Nathans can't take a bike ride, go out for ice cream or accept an invitation to someone's home without the additional burden of getting a sitter for Lyndi. Because Lyndi can only express herself through loud, gutteral sounds, she can be disruptive in public and social settings.
Susie is more accepting than Paul of the fact that life is unfair. Paul says he feels cheated to this day. "I'd be lying if I said anything else."
Susie copes by being pro-active. It beats moping, she says. Paul copes by going to work. His days and hours as a salesman and sales manager at Central Cadillac are long and, he admits, there are times when he doesn't want to come home.
The nonstop stress of taking care of a child like Lyndi has taken its toll on the Nathans, who underwent several years of counseling. Their emotional difficulties include feeling self-conscious at having Lyndi stared at or becoming the target of verbal cruelty in public situations. For years, Paul couldn't take his younger daughter, Danielle, to her friends' birthday parties because seeing all the normal kids was too painful for him.
A crucial plus in the Nathans' lives are the Savins. "We would never have gotten this far without the emotional support of my parents," says Susie, who adds that she and her mother are also best friends.
The Nathans, married 16 years, are members of Bethaynu and Solon Chabad, as are the Savins. In the beginning, their Jewish faith offered the Nathans little solace. Over the years, however, greater self-knowledge has led to their increased understanding of God's purpose for bringing a child like Lyndi into their lives. "It has taught all of us an important lesson about love," adds Paul.
How much will Lyndi understand when she moves into her new home? "She will know that it's different and it will take a few days to acclimate," says her mom. "She will know that her family is not there," says her dad.
JFSA is playing an indispensable role in the process. "Without their help, it would not be possible," says Susie.
She hopes that the home will give Lyndi security and a chance to interact with like-minded children in a nurturing environment. It will also enrich her life, adds Paul. Both admit that it will give their family a chance to live a more normal life, as well. Just as importantly, it will give them the comfort of knowing that no matter what happens to them, Lyndi will be taken care of forever.
Sister to a special-needs sibling
At age 11, Danielle Nathan is wise beyond her years, largely the result of having a special-needs older sister and all that it entails.
Danielle describes her older sister as someone who "cannot talk at all, is always happy and almost never sad, and just loves being around everyone. At school, she's very happy and everyone knows her and likes her," says the Orchard Middle School fifth-grader.
What Danielle misses most is having a sister she can talk to and an older sibling she can look up to and emulate. The best part about that, says Danielle philosophically, is that with Lyndi, "you can't get into any fights because she doesn't disagree about anything." Still, she admits, the situation makes her sad and angry sometimes.
Danielle says she f eels left out at times. Her mother's preoccupation with building the Forever Children's Home and all that it entails fuels the resentment. While Danielle has her chores around the house, taking care of her sister is not one of them.
Danielle is happy that her sister will be moving into a new home and that she and her parents can enjoy a family ski outing or party without having to worry if Lyndi's caretaker is available. But she also allows she will miss her sister "sometimes," particularly her laugh.
Having a sister like Lyndi has made Danielle kinder and more sensitive to people who are different. At camp, she won the Heart of Gold Award because she was nice to everyone, including two children with special needs. Because of Lyndi, "I think I get along better with special-needs kids than most people," she says.
Speaking for their autistic son
Except for a year spent at a special school in Boston, the only home Matthew Todd Molecke, 22, has ever known is that of his parents, Sheila and Melvin Molecke of Highland Heights. The Forever Children's Home, the parents allow, will be as much an adjustment for them as for their severely autistic son.
For the first year-and-a-half of Matt's life, the child seemed normal to Mel and Sheila. But when they went on a vacation once, the couple, both teachers, who watched the two Molecke children, knew something was developmentally wrong; they informed the Moleckes' good friend, who, in turn, told the parents.
"We didn't see it; we were in denial," admits Mel. It was the friend who suggested to Sheila that she seek medical intervention.
When Matt was born in 1979, one in 10,000 babies was diagnosed as autistic. That number, says Mel, has quadrupled to one in 500 today. Causes of autism are as yet unknown.
Although Matt is low-functioning, he can dress and feed himself and give this reporter a "high-five." He also can hear and understand everything that's being said, say his parents. What he cannot do is speak. The only sounds emanating from his voice are gutteral.
Autism, Mel explains, is a neurological disorder that affects communication and cognitive reasoning. There are many degrees of autism, adds Sheila. They run the gamut from hyperactivity and repetitive behavior to lack of eye contact, rejection of affection and resistance to change. During our interview, Matt claps his hands repeatedly, bounces a ball and continuously raids the refrigerator. He has a warm, handsome smile and basks in his parents' obvious love for him.
When Matt was 5, he spent a year at Boston Higashi School for Autistic Children, where he became toilet-trained and learned to dress and feed himself. The cost in 1984 was $40,000. Apart from that, the Moleckes have been his sole caretakers.
Sheila and Mel characterize their son's personality as very good-natured and loving, as well as timid and shy. He is cautious, and it takes him a while to warm up to people. During my visit, when he is not moving about, Matt sits in front of the TV. He does not watch it but enjoys the sound, explains his mother.
Autistic kids like the same schedule every day, explains his father. Every morning, Mel helps his son brush his teeth and get dressed. During the school year, Matt spends his mornings at CEVEC, Cuyahoga East Vocational Education Center, and the afternoons at Beachwood High School in their special-needs program.
Father and son also spend a great deal of time together. They go roller-skating every Monday night and make frequent trips to the park, zoo and area museums.
The Moleckes also have a daughter, Heather, 25, an aspiring artist who lives in New Orleans. Heather was always resentful of all the time her parents spent with Matt and there are unresolved family issues until this day. "You don't do it intentionally," says Sheila. "It's just that the one requires so much more time."
There is no anger, say the parents, but there is frustration and, for Sheila, 53, exhaustion and deteriorating physical health. Sheila does not work outside the home and other than when Matt is at school, she is with him at all times.
"I don't think there's a person alive with a special-needs child that wasn't hurt by it at first and that wouldn't have wanted a normal child," admits Sheila. That being said, she is quick to add that those initial feelings soon disappeared and that she has gotten on with her life.
When Sheila began to worry about who would take care of Matt when she and her husband can't, she contacted Lynn Wasserman at JFSA. "I have to know eventually where my son's going to be and that he will have a place to be," says his devoted mother. Wasserman contacted the Moleckes when a fourth resident was needed to complete the group home.
The Moleckes have high praise for the Savins in making the home possible. "We're just reaping the benefits," they agree.
Mel, 62, hopes the home will be a place where Matt can function on his own as much as possible and, when his parents are no longer living, he can continue to live and be well taken care of.
Because autistic children like Matt are resistant to change, the prospect of adjustment looms large. When the Moleckes had to replace Matt's bedroom set, for example, he refused to sleep in his new bed for three nights.
"I'd rather he stay here until I can no longer take care of him," admits Mel, who also recognizes that his son has to move on. He has been told that when these kids are placed in group homes, they're happier and do more.
Sheila sums it up best of all. "It will not only be an adjustment for the child, but a big adjustment for the parents. You're letting go, and that hurts."
For information about Forever Children's Home and how to help, call Ilene Savin at 216-464-5547.
JFSA plays a role
The connection between Lyndi Nathan and Jewish Family Service Association has deep roots. Twice she has appeared as their poster child, and the agency has been providing caregivers through the Option Waiver Program since Lyndi was 5. JFSA has also been serving one of the other residents, Dylan McCormack, in his home.
The Forever Children's Home is not a "group home" in the generic sense of the term, explains Kaye Chavinson, president and CEO of JFSA, and Lynn Wasserman, director of the Department of Mental Retardation and Developmental Disabilities (MR/DD program) at JFSA.
"This is a family consortium funded by the supportive living department of the Cuyahoga County Board of Mental Retardation/Developmental Disabilities," says Wasserman. "When a group of four families comes together and forms a consortium, they can apply to the county for residential funding that bypasses the county board's waiting list for housing." However, in doing so, the family consortium agrees that they are going to be responsible for all costs with the exception of staffing.
Group homes are licensed by the state of Ohio and the Ohio Board of Mental Retardation and have a great many licensing requirements. This house is funded through the auspices of supported living, which does not have the same stringent requirements.
According to Wasserman, JFSA was the first in Cuyahoga County to deal with family consortium and one of the first in the state of Ohio. Forever Children's Home is the fourth consortia in the last 12 years that JFSA helped start from scratch. JFSA also serves as a consultant to other providers.
The biggest challenge for JFSA is staffing, admits Chavinson. "The field is underpaid for the most demanding work that there is, and it's very difficult to hire and retain quality staffing in a field that has high turnover (the average is nine months)," she says.
The second challenge is for families. "As excited as they are about opening this home up, it's still a separation ... and a great sense of loss over the fact that their child is no longer at home," says Wasserman.
Feelings of guilt are also common. "Even though you are providing a very safe=2 0and potentially developmentally positive environment for these children ... there's guilt in feeling that if you really loved this child, you should be able to care for (him or her) in your own home," adds Chavinson.
In many instances when a person with mental retardation moves out of the parents' home, that person gains more, explains Wasserman. Unlike a parent who is constantly on call and becomes drained, shifts mean renewed continuous energy.
Parents, meanwhile, have to adjust to the fact that their children's clothes may not be as neatly pressed as they would be at home, nor their hair combed quite the same way, nor the food as tasty. "It's about letting go," says Wasserman.