Special moms deal with the everyday challenges of special-needs children
Today we celebrate all mothers, but some are dealing with the extra challenges that special-needs children bring. Whether their child is dealing with physical or mental issues, these women have risen to the challenge to do the best for them.
A special day
For Kelley Davis, 33, of Koppel, Beaver County, Mother's Day has a very special significance.
Her daughter, Trinity, had a grade 4 brain hemorrhage when she was born. It caused cerebral palsy, seizure disorder and cortical vision impairment.
“I spent my first Mother's Day in the NICU (Neonatal Intensive Care Unit) at West Penn,” Davis says. “It's obviously always special, but my very first was when my daughter made big improvements and was moved into a regular pediatric room that day. We got to spend the night with her for the first time. It's always a big deal in the NICU, (for her) to drink the whole bottle by mouth. I had a little discussion with her: ‘You need to do this so we can go home.'”
Trinity is now 8 and learning how to walk — “We still have to carry her everywhere we go” — but she can ride a bike, thanks to Variety the Children's Charity (www.varietypittsburgh.org).
“It's like a three-wheeled bike, almost like a tricycle, with a special seat with a back to it and a seat belt,” Davis says. “What I really like is that the pedals move even if she doesn't pedal, even when she's tired and doesn't want to do it. There's a bar from the front of the bike to the back so we can steer her.”
Being mother to Trinity has changed the way Davis sees the world in a lot of ways.
“Life is not all about the big things,” she says. “It's about the small things. She turned the pages of a book a few years ago. Other people don't see that as a big step. Her saying ‘Mom' for the first time at age 5. Pedaling her bicycle for the first time.
“Things you don't look at as a big deal are a huge deal to a special-needs child and her parents. When you are told your child is not going to be able to do something, and they do it, it's amazing.”
Small victories add up, even when obstacles seem to be everywhere.
“I think the biggest issue for us is that there's not a lot of understanding when we're out in public,” Davis says. “We get a lot of comments — ‘She looks like she's tired,' or ‘Why does she have glasses?' People think we're putting them on her as a decoration. Our biggest issue now is to get her places and do things other kids do.”
Every Mother's Day is special, but last year's was particularly memorable.
“She doesn't talk much, but she's starting to say syllables,” Davis says. “Last Mother's Day, she was saying, ‘Happy Mother's Day!' Well, I knew what she meant.”
— Michael Machosky
Do the research
When Jenn Sanner learned her 2-year-old daughter, Khloe, was deaf, she cried.
As the mother of two older daughters, Karlye and Kelsey, Sanner had known something was different about Khloe.
“I never thought (it was) hearing loss,” says Sanner, who lives in Lower Burrell. “But now that I knew what was wrong, I could help her. I jumped on anything I could.”
Today, Khloe is a confident, talkative, outgoing, 12-year-old who loves math, computers and taking dance classes at Lisa Marie's School of Dance in Freeport.
A cochlear implant, a small electronic device, helps her to understand speech and communicate. After attending the DePaul School for Hearing and Speech in Oakland for nine years, Khloe will transition to Lower Burrell's middle school in the fall.
“I'm very close with all my girls. But I think Khloe and I are extra close because she's the baby, and we spend a lot of time together,” Sanner says. “I never think of her as challenged at all.”
Khloe thinks her mom is terrific.
“She helps me a lot when I'm doing my homework, and we cuddle together and watch movies. … I tell her news about school. We like to shop, and I dance with her while watching ‘Dancing With the Stars,' ” Khloe says.
“But I don't have the moves she has,” Sanner jokes.
Sanner's advice to parents in similar situations is to do as much research as you can: “See what's best for your child. Find the best school for you. … Give them all you can,” Sanner says. “Believe me. It's not the end of the world.”
— Alice T. Carter
Never give up
Cathy Mangino says she is “just a facilitator.”
She has accepted the task of helping her son, Francis, 19, deal with the results of a car accident, but she insists she is not responsible for the striking improvements the young man has made.
“My husband and I decided to just turn it over to God,” the Finleyville woman says. “I am just a facilitator for what He decided.”
But Francis knows she is doing the job that needs to be done. When asked how he would rate her work, he leans close, so she doesn't hear, and whispers: “Perfect.”
Francis was injured in a car accident July 15, 2011, incurring a brain injury so severe physicians suspected he would be bedridden for the rest of his life. Speech seemed out of the question. Nourishment probably would be through a tube.
Now, he is an outpatient student at the school at the Children's Institute of Pittsburgh in Squirrel Hill. He proudly flips through the images in his iPad to show a photo of himself and the medal he won participating in Special Olympics. He talks about playing baseball at the institute's Miracle League field and being part of the Best Buddies program at Duquesne University.
His mother listens to him, keeping track of what he is saying and correcting him at times. But she is obviously thrilled at hearing his voice and seeing him sit across from her in the cafeteria at the institute.
She says after the accident, she and her husband, Dick, accepted the situation, but also decided to work as hard as they could with Francis. It is only part of the job of life, she says. After acute care at Allegheny General Hospital and rehab at the institute, Francis went home in February 2012.
Mangino says she “did a ton of research” on brain injuries and worked with Francis steadily, trying to provide connections that would spark reactions in the mind.
“The more involved you are, the better,” she says. “I just never gave up.”
Her work paid off. She says Francis started talking April 24, 2012, and walking on May 21. He started at the school in September of that year.
Mangino says his constant growth is impressive and gratifying. She mentions a recent trip to North Carolina in which Francis knew their hotel room and found it on his own.
Francis seems pleased, too.
“It sure is going great for me,” he says.
— Bob Karlovits
What I am supposed to do?
Sometimes, expressing love doesn't take a single word.
Landon, 5, can't hear or see well. He is nonverbal. But he sure can show mom Amy Brewer how much he loves her with his signature huge smile as she wraps him in her arms.
“His smile is priceless, and his laugh is contagious,” says Brewer, of New Brighton.
Brewer, married to husband Matt, is a para-educator at the Western Pennsylvania School for Blind Children in Oakland, a career she pursued after Landon began attending the school at age 3. She also is earning her master's degree in education and a teacher of the visually impaired certificate through the University of Pittsburgh — a decision also inspired by Landon's challenges.
“My hope is to help support and teach others in similar situations,” she says. “I believe this is what I am supposed to do. It's funny where life takes you. We are enjoying the ride.”
Landon uses a walker to get around the school and has a nurse helping him throughout the day. He loves “Mickey Mouse Clubhouse” and toys that light up and make noise. He's inquisitive, and he enjoys people-watching at school, the park or the mall.
But he's best known for his happy demeanor, which just adds to the personal strength he's shown all his life, Brewer says.
“When we found out about Landon's visual impairment and deafness, I remember feeling sad for the challenges he would face, but I was overcome with a love that I never knew existed and pure happiness,” she says.
“I wake up every day thinking I am so lucky God chose me to be his mom,” Amy Brewer says. “I wouldn't trade one minute of my life. He truly makes me a better person.”
— Rachel Weaver
Finding the best support
Susie David says she does what any mother would do.
She doesn't see herself as going above and beyond to care for her 7-year-old daughter, Abby, more than any other mother of a special-needs child would do.
“Any mom would rise to the occasion with a special-needs child,” David says. “The reality is, you might have to do things differently, but any mom would do what I do. You do what is good for your child to where she progresses. God gives you what you can handle.”
It takes longer for Abby to grasp things, and there are times she gets upset easier than most children.
“You need patience, and you need to communicate with your child, as well as those individuals who can help with physical and occupational and speech therapy, because all of that will help,” says Susie David, of Adams Ridge in Mars, who also has a 4-year-old son, Nathan. “It also helps to have a supportive husband and family, and I have the best husband and a wonderful family. This was all new to us when Abby was born. We didn't know what steps were ahead of us.”
Everyday things might require additional time.
“It's not that we set the bar lower for Abby,” David says. “It just might take longer for her to reach a goal. She is full of surprises. We know that some social settings can be challenging. But we also know that Abby's potential is wide open.”
Having children in general pulls you in many directions whether you have a special-needs child or not, David says.
“We have been fortunate to have support from so many people,” David says.
Administrators at the St. Anthony School program, which works with ages 5 to 21 with intellectual disabilities, helped the family enroll Abby at St. Mary School in Hampton.
“Everyone at St. Mary's embraces the program, and it's a wonderful environment for Abby to be in,” her mom says. “You can't do this alone. It takes family and friends and the staff at school and the therapists as well as the wonderful parishioners at our home parish of St. Kilian in Cranberry. Abby has an entourage. You have to connect with the right people. ... You have to be an advocate for your child. And you have to be organized.”
Abby David appreciates her mother.
“I love you, Mom,” Abby says, as she walks off the playground. “My mom takes me to get ice cream, and she and I go for walks after dinner. We have fun.”
— JoAnne Klimovich Harrop