Tired of hearing about moms who mistreat and neglect their children? In honor of Mother’s Day and supermoms everywhere, here are two Ohio Valley mothers who have risen above the overwhelming circumstances of their children’s illnesses and inspire us all to be the best we can be.

Dana Och’s typical day involves helping her 8-year-old daughter, Savanna, complete more than 10 hours of therapy; taking her 13-year-old son, Tanner, to ballgames or music lessons; preparing special meals for Savanna along with the meals for the rest of the family; not to mention doing the laundry and other housework at their Valley Grove home.

Savanna has lissencephaly, which means “smooth brain,” an extremely rare brain malformation in which the folds of her brain did not form properly.

Savanna cannot walk, eat or bathe without help from her mom and dad, Jeff Och, who own a construction equipment company in Washington, Pa. She cannot talk, her vision is poor and she must wear diapers. She cannot tolerate extreme temperatures and wind, she has an aversion to touch and her immune system is fragile, which means catching a cold could easily turn into life-threatening pneumonia.

Therapy has been a painstakingly slow process that has continued, with the help of Easter Seals Rehabilitation Center in Wheeling, for five years. At home, Dana works on various therapies with Savanna, including physical therapy on an exercise ball, occupational therapy in the form of crafts and touchscreen computer games, and hours on end using a light box and handmade spinners that have led to a breakthrough

in Savanna’s ability to communicate.

Dana has never once considered giving up on her daughter.

“I just feel that it’s my job,” Dana said.

Rather than researching her daughter’s condition online, she relies on the therapists and specialists at Easter Seals to tell her what she needs to know. The Internet has too many depressing and discouraging stories, she said.

“I don’t go there. I just deal with Savanna and what’s in front of me. I don’t need to worry about something that might not even ever pertain to her,” she said.

“Dana is just fantastic. She’s very optimistic,” said Sheila Archer, Savanna’s speech therapist at Easter Seals. “She has accepted this is her life and this is her daughter and she’s going to get her to the best place she can get her and then go farther.”

Crystol Seladoki of Wheeling will never forget witnessing the fading of the sparkle in her toddler’s eyes.
“It was as if someone went in and switched off the light.”

Her son, Christian, was 18 months old and developing normally when he received his MMR vaccine. Crystol noticed almost immediately afterward that his behavior changed. He stopped talking, refused to make eye contact or hug her and began throwing tantrums and biting himself. He wouldn’t eat, and when she tried to read to him, he screamed and struggled and pushed away the books. She didn’t know that autism had been anecdotally linked to vaccines.

“I had never heard of autism. I didn’t know what it was,” Crystol said. “I was like, where is my baby? Where is he?”

The doctor told her her son had hit a road block in his development and would catch up. But Crystol knew it was much more than that. After relatives mentioned she should look into autism, she researched it on the Internet.

“When I read about it, I thought, ‘This is Christian. This is totally Christian,’” she said.

When she took him back to the doctor, he told her if it is autism, “He’ll never love you and he’ll never know that you love him.”

“I’ll never forget that. I said, ‘Oh no, he may not ever love me, but he will know that I love him,’” Crystol said.

After another six months on the waiting list at the Klingberg Center at West Virginia University Children’sHospital, Christian was diagnosed with autism.

Crystol quit her job because she couldn’t expect a babysitter to know how to care for her son when she didn’t know. As Christian neared school age, Crystol relied on the local school system (she did not live in Wheeling at the time) to provide him with an education and the services he needed. Instead, she ended up taking the school district to court after Christian was injured at school. That case was settled. The following year, she fought them again because they were not providing an appropriate education for Christian. That case is now headed to the Ohio Supreme Court.

Meanwhile, Crystol said she “prayed and prayed” for someone to help Christian. She knew from her research that autistic children who received 30 to 40 hours a week of a form of therapy called applied behavioral analysis experienced significantly improved outcomes. She was prepared to ask her family, including husband Scott and teenage son, Taylor, to move to California or Florida so Christian could attend such a program. Then, “miraculously,” Crystol said, Kathy Fuller Shapell opened the Augusta Levy Learning Center in Bethlehem, offering ABA to autistic children.

“It was such a relief to know he was going somewhere where they knew exactly what to do. You have 100 percent trust. You can say to yourself, ‘He is safe,’” Crystol said.

Christian’s progress in two years at the Levy Center has been remarkable.

“When your child can’t tell you he’s hungry or what he wants to eat, you feel like you’re a bad mother because you don’t know what he wants. Now he is expressing to me his needs and his wants. ... He can read now and knows all his shapes and colors. They are working on transitioning him into a regular classroom.” These days, instead of biting himself 100 times in a two-hour period, it’s down to two or three times in two hours.

The center staff also has trained Crystol and Scott to work with Christian at home.

Crystol credits the whole experience with making her a better mother.

'“It puts your life into perspective. You don’t worry about the little things anymore, like money. Your whole life is focused on your child.”

She is now an advocate for families. In addition to the Supreme Court case, she is working to get the West Virginia Legislature to pass a bill requiring insurance companies to cover the medical costs of autism.
“I now feel like I am the voice for autistic children. I want to make a difference not just for my child but for all children with autism.”

Thoughts From a Mom Who’s Been There
by Dana Och

Editor’s Note: Dana Och of Valley Grove, whose daughter Savanna has a rare brain disorder called lissencephaly, wrote the following to help other parents of children with disabilities or chronic illnesses.

GET AN ACCURATE DIAGNOSIS: I knew something was wrong when Savanna was about 4 months old and was not reaching the milestones that my son did. I was told that all children are different and that she was fine and would progress at her own pace. In my heart, I could feel that something was just not right. I finally took a video of her to the doctor since her seizures (which I didn’t know that’s what they were at the time) would occur at random. We finally found out after an EEG and MRI at Children’s Hospital in Pittsburgh that she had lissencephaly. My husband, Jeff, had to drive to Canada to get a seizure medication that was not approved in the United States; it stopped her seizures for nine months.

DON’T BLAME YOURSELF: I cried every day for months. I found out that this was a grieving process: the loss of the daughter I had hopes and dreams for. I got over that feeling eventually with the help of Easter Seals’ therapists in Wheeling showing me that things were going to be OK. I then realized that I just needed to make a new set of hopes and dreams for Savanna.

I also worried about what people thought about me, and if I did something to harm my baby. They didn’t know that it is a rare condition and the odds are about one in a million and they are not sure why it happens. Savanna’s brain just did not form the folds it should have and it was nothing that I did wrong.

GET HELP: Find an organization that can point you in the right direction. Easter Seals will evaluate your child and help in any way they can – just ask. Our therapists are wonderful and the most caring people that I know. They are a huge part of our family. They can tell you what has helped other children and give you ideas on what to work on.

I also have a wonderful respite care worker that is willing to help feed, change and love my daughter giving me a break a few times a week. Even if it is going to the grocery store, or taking my son Tanner to a movie, it helps me refuel and gives me a little time off.

STAY POSITIVE: It’s so easy to get burned out working so hard caring for a child with special needs each and every day, especially on those bad days. What changes all of that is when you see progress. No matter how small, it’s progress and it makes all of that work worthwhile, and you realize you helped make that happen. Also when Savanna looks at me and grins, that’s all of the motivation I need, knowing that she is happy.