404-885-1234 Georgia Advocacy Office One West Court Square Suite 625 Decatur, GA 30030 United States

Six-month -old, brown-eyed, dark-haired, Emily (not her real name) was found all alone in a hospital in Macon, Georgia, five years ago. Doctors said that she had “shaken baby syndrome,” which resulted in brain damage, blindness, and seizures. Lorri Fischer, an “ordinary” citizen met Emily after talking with the coordinator of Macon-Bibb Citizen Advocacy. She became Emily’s citizen advocate and started visiting her at the hospital. A citizen advocate is a volunteer involved with a person with a disability who looks out for his/her best interest, Lorri explains.

Before being admitted to the hospital, Emily had been living with her uncles because her mother and grandmother were in jail. She stayed six months at The Medical Center of Central Georgia in Macon. The Department of Family and Children Services (DFCS) gained custody and transferred Emily from the hospital to the Nursing Home Center at Central State Hospital in Milledgeville, GA.

Lorri went through a long process to gain access to visit Emily at Central State and was constantly questioned about her interest in Emily. “They [DFCS representatives, Central State officials] had me jumping through hoops and I jumped through every one of them and they still couldn’t understand why I wanted to see this child,” she says.

Lorri wanted to be able to visit Emily and look after her from outside Central State. Emily was usually in an iron crib and Lorri wanted to give her individual attention and hold her, All you need is love making her feel loved. She went to visit her every week. Lorri remembers that Emily spent her first birthday, January 28, 2001, inside the nursing home and she knew Emily did not need to be at Central State. She needed a home and family.

Meanwhile in Vienna, Georgia, Marilyn Allen was working as a caregiver at an Easter Seals Group Home. Easter Seals provides support and services to people with disabilities. Easter Seals asked Marilyn about having Emily come live with her, but Marilyn declined because she had just lost her husband in a truck accident.

DFCS was trying to reunite Emily with her mother, Lorri says. Emily’s mother had been visiting Emily at Central State and had almost completed her case plan when she tested positive for drug use. The reunification with the birth family was no longer an option, Lorri recalls. Lorri had completed the Model Approach to

Partnership Parenting (MAPP) training through DFCS, with the hope that Emily might come live with her. But, since Lorri had been informed that Emily was going home to her birth mother, she had already agreed to be a foster parent for another child. Unfortunately, she knew she couldn’t take both children; “Emily comes first,” Lorri said at the time. Marilyn, in Vienna, kept hearing about the little girl stuck at Central State in a nursing home and finally went to see her.

Marilyn had been in contact with DFCS and was discouraged about Emily; she was told that Emily would have a short lifespan, never say ‘I love you,’ and that she was of a different race. While DFCS was trying to discourage Marilyn, Easter Seals was positive that Marilyn could welcome Emily at her home.

Marilyn says the first time she visited Emily in October of 2001, she checked under her clothes to see if the warnings from DFCS were real. “All I saw was a G-tube [feeding tube]. All the things DFCS told me were not true,” she says.

“It was awful. To me it was awful just because of her surroundings,” Marilyn says remembering seeing Emily for the first time. “I know people worked as hard as they could,” she says, but she knew no baby needed to be in a nursing home. “It broke my heart,” she adds. Marilyn knew from that first visit that she had to bring Emily home. With the help of Easter Seals, Marilyn began the demanding process of getting ready to bring her home. She continued visiting Emily two times a week to show the nurses at Central State that she knew how to care for her. Marilyn remembers going through a criminal background check, finger printing, a physical, and a psychological evaluation. She had to get statements from her physicians, documenting that her health was good enough to care for Emily, and she had to have her house inspected. She completed the MAPP training through DFCS as well.

“If I wasn’t dedicated, the process would have run me away, but I wanted this little girl,” she says. Finally, on January 14, 2002, after a year of living at Central State, Emily came home with Marilyn.

“And we’ve been here ever since,” Marilyn says, and “without any health problems,” she adds. Nurses came by their home every day, as well as DFCS workers, and Children Medical Services workers. “After the first year, when everybody saw everything was great, they quit coming as much,” Marilyn says.

Their typical day begins between 5 and 7 a.m., when Emily wakes up and has her first feeding, says Marilyn. Then, its fall back to sleep until 10 or 11, and then its bath time to get ready for the day.

Marilyn’s routine for getting Emily dressed and ready involves lying her across her lap on the sofa. “I’m running out of lap,” she says, as Emily is barely able to lie across Marilyn’s lap now because of her height. But she stays there while Marilyn applies lotion, dresses her, and braids her long, dark hair. “We’ve come a long way in three years,” Marilyn says. “She used to be tender-headed,” she adds, while she parts Emily’s hair into four braids. Every day Emily is dressed in matching outfits, including socks, shoes, and hair bows. “She has a wardrobe out of this world,” Marilyn says, and admits she is always buying clothes and accessories for her. The two of them even coordinate their colors for church service on Sundays.

“When she first came home, you’d touch her and she’d snatch away, draw up,” Marilyn says. Now Emily has found her place in Marilyn’s arms, side by side in the recliner, along with their dog, Chelsea. Marilyn was afraid Chelsea would be jealous of Emily, so in the beginning, she placed Emily on a quilt on the floor and let Chelsea get to know her. Now, Chelsea is protective of Emily and has even nipped therapists who work strenuously with her.

Over the years, Marilyn has maintained a relationship with Emily’s birth mother, against DFCS’s advice. They previously had visitations at the DFCS office, and now Marilyn stays in phone contact with her at least two times a month. “I was kind to her. Thing was, I had Going Home: Marilyn and Emily leaving Central State January 14, 2002 10 / Children in Nursing Homes Emily,” Marilyn says. “Emily was in a safe place. There wasn’t any reason for me to jump on her and beat her down.”

Emily’s biological family lives in a neighboring town, and Marilyn says as long as they respect her relationship with Emily, they are welcome to visit. Emily’s birth mom sends her presents on her birthday and sends Marilyn Mother’s Day cards.

Easter Seals helped obtain court-ordered placement for Emily in Marilyn’s home, which is permanent now. Marilyn is thrilled she doesn’t have to worry about Emily ever leaving. She hasn’t formally adopted her, because she says it would make it harder for both of them. Right now, Marilyn is employed as Emily’s care-taker by Easter Seals; however, if Marilyn adopted Emily, she would have to get a job outside of their home and Emily would require other support.

It is an ideal situation, Marilyn says. Through Emily’s Katie Beckett Waiver and Marilyn’s job with Easter Seals, they’ve had everything they’ve needed. And they have family support, too. Marilyn’s three sisters live in the neighborhood, with their families, and everyone looks after Emily. “That little girl really gets around,” Marilyn says.

It’s a world of difference from living in the nursing home at Central State. “I believe if she had stayed there, she would have died,” Marilyn says. “It’s so much different on an individual basis,” she adds.

Marilyn is so proud that Emily beat the odds, she says. When Emily first came home, she was having 25 to 30 seizures a day, Marilyn recalls. “She used to scare me to death,” Marilyn says, but they adjusted her medicines. Now, Emily has one or two quick seizures per day.

Marilyn delightfully remembers the first time Emily ate baby food. “Apricots,” she says, “I’ll never forget that jar of apricots.” And now Emily, who eats two jars of food per day, is even spitting out green vegetables, a sign of improvement, indicating that she knows she doesn’t like green veggies, Marilyn says. “I am just constantly amazed by this little girl,” she says.

But now she’s beginning to worry about her starting school full time in the fall. Emily attended half-day programs for preschool, but in the fall she will attend school all day at JS Pate Elementary School in Cordele. “I don’t know how I’m going to get through it,” Marilyn says, fearful of her little girl being gone all day. “It’s just been us for three years now, and now they want me to share my baby.”

Emily rode the school bus to her preschool, so she is accustomed to that, but it’ll be interesting to see for whom the separation is more difficult: Marilyn or Emily. At least Emily is in a home in a community where she is able to ride the bus to school.

Marilyn met with the teachers for Emily’s Individualized Education Plan (IEP) and they set up physical therapy and music appreciation during the school day. Emily loves music, Marilyn says, so she will enjoy that. Marilyn A happy family: Marilyn, Emily, and Chelsea in their home. Children in Nursing Homes / 11 usually has music playing all the time in their home.

Marilyn says she told Emily’s teachers she’ll try to stay away, but “I have to keep an eye on her,” she says. She promised the teachers that she would visit Emily at school only once or twice a week for the first month or two. When Emily was in pre-school, one of her teachers made Marilyn a Mother’s Day card, which is now framed in their living room. “I just had to let everyone see it,” she says. She carried the card everywhere she went — to the bank, the post office, DFCS office — everywhere, she says. They even made a copy of it at the Easter Seals office. “I’d just break down and cry. That meant so much to me,” she says. She wrote a letter to the editor of the newspaper talking about her Mother’s Day card and how proud she was to receive it.

“It’s funny when you get kids,” Marilyn says. Before having Emily, she was known as Marilyn. Now, she’s known as Emily’s mom. She wouldn’t change it. “We bless each other,” Marilyn says. “It’s not what I do for her. It’s what we do for each other,” she adds. Another letter Marilyn wrote to the editor reads: “Before I ever saw her, I was told all that she would never be able to do. But my faith led me to her side and as soon as I saw her I was lost. I have had no regrets, because despite her medical and developmental problems, she blesses me because she lives. She reaffirms my faith in God and makes me more than I am.”

Lorri Fischer says of Marilyn: “You can hear the love in her voice when she talks about Emily.” It all worked out, Lorri says. “I don’t have to worry about Emily.” And if Marilyn ever needs us, we will be there for her and Emily in a heartbeat, she says.

Marilyn knows there are over a hundred other children in nursing homes and institutions in Georgia, and she knows that they all need homes and families. To those chosen, special people who are considering bringing children home, Marilyn advises that, “First, you have to be true to yourself. Know what you can handle and know the extent you’re willing to go,” she says. “Second,” she says, “pray a lot for strength, patience and endurance.” “And third, just have so much love in your heart…overflowing,” Marilyn says. “Don’t think about what you’re going to get. Think about what you’ll give and you’ll get it back.” She’s convinced.