Real Advice from Atlanta Families

by Tali Toland
A child with special needs affects entire families. At first, it is often difficult, but somehow these parents and siblings always persevere. They find the positive in each situation and inspire with their love and commitment to their family member. Here are the stories of a few remarkable Atlanta families and the lessons they’ve learned.

 Meet the Glissons

Come Together

Our Story:

Sami and Stewart, Cooper and Ben (and one on the way). These identical twin boys are very different, but still seem to share the famous “twin bond.” “Cooper always calms down when he hears Ben’s voice,” says Sami. The boys, born prematurely, both spent the first month of their lives in the NICU. Then, Ben went home, but Cooper stayed behind at the hospital for the next few months. Cooper started having seizures when he was 3 months old. He has severe epilepsy, is blind and globally delayed, meaning he can’t sit, walk or talk; he has the abilities of a 2- or 3-month old and the boys are almost 3.

“The hardest time for us was when the boys were really young and we didn’t want to leave Cooper alone in the hospital, but we also didn’t want to never see Ben,” explains Sami. “We had a great support system, and Ben really bonded with his grandparents.” Ben’s character has been molded for the better by all of this; he is very patient, tolerant and forgiving. He is involved in Cooper’s therapy and will start preschool this year. “We think it’s really important for him to be in contact with other children so he can develop his own life,” says Sami.

“Ben is great with Cooper,” says Sami. “He helps me feed Cooper, he consoles him and he has never lashed out at his brother.” Ben wants to be a doctor when grows up so he can help other people. Sami and Stewart try to take Ben on day trips so they can spend time with him and do things that are hard to do with Cooper. “It makes Ben feel special and gives us time to just enjoy him,” says Sami.

As for Cooper, he has a nurse that helps with his care about eight hours a day. He’s on a strict schedule for medicines and feedings. “Our lives definitely revolve around what Cooper needs. I’m a stay-at-home mom out of necessity. We bring a cooler with us when we leave the house for his medicines,” says Sami. “We built a handicap accessible house, so that it will easier for Cooper as he gets bigger.”

Cooper started the Ketogenic diet a few months ago and it has pretty much stopped his seizures. Cooper has a degenerative brain disease that seems to be progressing, but the Glissons aren’t giving up hope. “Cooper is a blessing. I wouldn’t give him up for anything,” says Sami.

The Glisson boys are very close, despite their differences. They sleep in the same room, and have storytime and meals together.

Our Advice:

“Work on making the problem(s) bring you closer together, both as a family and as a couple,” says Sami. “If I’m having a bad day, Stewart will come home and just take over. He’ll feed the boys and put them to bed.”
Sami also thinks it’s important to keep typical siblings in the loop and involved in everything going on with their special needs sibling. “Let the sibling help in the other child’s care. It makes typical siblings feel important and helps them express their love,” says Sami. “It’s always better to involve others than to ignore the problem or make them afraid.” It is beneficial for both siblings to have an inclusive relationship.

 Meet the Harrisons

Be Involved

Our Story:

Valerie and Steve, Maddie and baby Nick (and Hartley, the dog). Valerie is a stay-at-home mom, which comes in handy for managing Maddie’s therapy schedule. Maddie was born with Down syndrome; her parents knew about her condition before she was born. Many parents choose to end such pregnancies, but that didn’t even cross Steve and Valerie’s minds. They used it as adjustment time. “I was prepared. That really helped,” says Valerie. “I was able to get support before our journey ever really started. I knew what to expect and how to deal with it.”

Two and a half years later, Maddie is doing really well. She knows lots of words, she goes to preschool two days a week and attends physical, OT and speech therapies once a week. “She’s very silly,” says Valerie. “She loves to make faces.” Maddie loves to dance and swing. “She’s definitely a typical 2-year-old,” explains Valerie. “Her favorite word is ‘no.’ She is either an angel or the total opposite.”

Maddie’s condition is mild for a Down syndrome child. She was on oxygen for the first four months of her life, but she doesn’t have any heart problems, which are common for children with Down syndrome. She is currently in school with her age group and her parents hope that will be the case as she gets older. “We’re just beginning the testing process for the inclusive program at Coralwood,” explains Valerie. “But we hope she’ll continue on a regular track. She learns so much from just being around other children, good and bad, but the exposure is great so we hope the testing goes well.”

As a family the Harrisons are very happy. “We just welcomed our son into the world,” says Valerie. “He’s happy and healthy. Maddie is saying phrases, which is a huge milestone for her. Hearing her say ‘I love you’ has been great.”

Our Advice:

Steve is the Vice President of the Down Sydrome Association of GA and Valerie is a former Treasurer. “We’ve met so many people and have been able to make a difference in how Maddie’s life will progress,” says Valerie. “We want her to be as independent as possible, and knowing what the options are and things available to us will make that possible.” The more the Harrisons got involved, the easier things became for them. “We learned more and that has helped us handle whatever may be thrown our way,” says Valerie.

Valerie began a Down syndrome playgroup for kids 0-3 in their area about a year ago so Maddie could develop friendships with other Down sydrome children. “I think it’s important for Maddie to have typical friends, too, but knowing that these children will always be able to relate to Maddie comforts me.” Valerie and the other parents use the playtime as well. They network, swap stories and recommend therapists to each other. “Therapy is such an integral part of Maddie’s development, so I treasure that Maddie’s never gone to a therapist who wasn’t recommended to me by someone.”

Valerie also says it’s important for parents to stand up for what they want. “Whether it’s expectations of therapists, schools or your spouse, being able to openly talk about everything is key. It will save valuable time, prevent frustration and save relationships.”

 Meet the Woodys

Appreciate the Little Things

Our Story:

Lisa, Phil, Emily and Evan. When Evan was born six years ago his parents had their dream life: two healthy children – one girl, one boy, a great house, good friends. Then, one day when Evan was 1 ½ he fell in the den as many kids do. He cried for a minute; Lisa checked for a cut or bump, but everything looked fine. The next morning Evan was cranky. At 11 a.m. it was naptime; about an hour later Lisa went in to check on him and Evan was having a seizure. His right pupil had blown. An ambulance drove Evan to the hospital, and neighbors came to get Emily for the afternoon. She ended up staying for five weeks.

Once they arrived at the hospital, Evan was rushed into surgery. After surgery Evan’s parents found out that the fall had caused a slow bleed in his brain; the clot meant brain damage. In ICU Evan couldn’t walk or talk. He gave no visual or auditory responses. All he could do was breathe and swallow. “His rehabilitation process was slow,” says Lisa. Seizures slowed Evan’s rehabilitation; he began having about a dozen a day after he came home from the hospital. “We found out his seizures were Lennox-Gastaut seizures, which cause regression into mental retardation, so we had to deal with that before anything else,” explains Phil. “We decided to get Evan a Vagus Nerve Stimulator to help control the seizures.” The implant in Evan’s chest sends impulses to his brain, much like a pacemaker in someone’s heart.

Then, just as quickly as the seizures began, they slowed down after a Sunday dinner when Evan prayed with his family. After that, his whole disposition improved. “Now, he can make eye contact, look at a book, sit on your lap,” says Lisa. “It really helped our relationship with him and as a family. Now we could show him we loved him, and he and Emily can actually play together.”

Evan walks and can feed himself. He loves to open things and explore, so his parents have to keep locks on the doors, refrigerator and drawers. Evan attends Coralwood where he is in the extended school year program in a pre-K setting. “Evan loves school,” says Lisa. “His personality has blossomed.”

“This whole thing has been very painful for us,” says Phil. “You have this normal child and then it all changes. Our friends that were very supportive at first seemed to dwindle. We are the family on the street with the special needs child, not the Woodys any more.” Though they are still learning to cope each day, the Woodys try to focus on the happiness Evan and Emily bring to their lives.

Our Advice:

“I used to worry about Evan’s future to a point of obsession. It was consuming me,” says Lisa. “Then, Phil made me realize that if I couldn’t find joy in each day, I’d miss all the moments and happiness we can have with Evan. Now I cherish the moments he does something new and leave the worrying for tomorrow.”

Phil thinks turning to your faith and accepting what you’re dealt is important. “Knowing this happened for a reason has helped me through the hard times and I know it will help me get through the next 40.” Once the issue has been accepted, returning to society and the community isn’t so hard. “I still feel different in many situations, but you have to put yourself out there,” says Phil. “Join groups like FOCUS to get to know other families, volunteer, anything to remain part of the community.”

Turning to each other has also been key to the Woodys’ survival. “We started marriage counseling while Evan was still in the hospital. At first we thought it was silly, but being able to express our feelings, hearing the other person was feeling the same way and knowing our feelings were normal has helped our marriage stay together,” says Lisa.