As any mom will tell you, motherhood, with all its joys, is also fraught with challenges. Potty training and sibling rivalry are expected, but families raising special needs children face obstacles for which there is no preparation.
When their son Andrew was born in 1993, it didn’t take long for parents Diane and Rich Alt to notice that something wasn’t quite right. “They seemed minor, but there were a few physical things, like curved pinkies and some webbing between the toes, that we noticed at birth,” recalls Diane. “But we were thrilled, first-time parents and were excited to bring our son home,” she says. As time went on, Andrew didn’t develop like other babies his age. “We called him our little puzzle. We knew something was wrong, but early behavioral and hearing tests were inconclusive. He seemed to just pass each time, preventing a firm diagnosis.”
When he was 18 months old, Andrew underwent an Auditory Brainstem Response (ABR) test, which led to a diagnosis of severe and profound hearing loss, something that later turned out to be incorrect. “We accepted the diagnosis at first. When we walked into his baby room, until he saw us there would be no reaction, so hearing loss made sense to us.” The couple was flooded with literature, support group opportunities and therapy options. “We had a speech pathologist coming to the house and teaching a few basic signs to Andrew, which he would use with regularity, but one day he just completely stopped communicating,” Diane says. “There were signs he was hearing what we were saying, but just wasn’t processing it.”
Finally, when Andrew was 3 and working with local and out-of-state neurologists, the Alts got the answers they were looking for. “Andrew was eventually diagnosed with Landau-Kleffner Syndrome. I can’t tell you how glad we were to finally have an answer to all our questions,” says Diane. “We had been turned down by programs for children with hearing loss all over town and were getting frustrated trying to provide the best care for our son. We knew there was still a lot to figure out, but after three years of wondering, it was nice to know our instincts were right.”
Landau-Kleffner Syndrome, named after two researchers from Washington University, is on the autism spectrum. Over the years, the Alts have learned to navigate and create an environment that suits Andrew and his behaviors. Today, the 15-year-old is a student at The Center For Autism Education in O’Fallon, Mo. “His expressive vocabulary is very low, he doesn’t use words and uses very few signs, but his receptive vocabulary is off the charts. He has a terrific memory and is a very smart boy, but cannot communicate with us,” explains Diane.
Day to day life can be difficult, but Diane says her positive outlook has made all the difference. “There have been so many ups and downs,” she says. “Shortly after Andrew’s diagnosis, and my husband saying he didn’t want to have any more children, we found out we were pregnant with our daughter, Ellie, who was born in 1995. I had a prophetic moment, I knew immediately she was a gift from God and would help guide her brother through life, and that’s exactly what she turned out to be. There have been many challenges over the years, but with the help of local resources, our church and each other, we’ve made our family life a happy one.”
Diane says that early on, she read a widely reprinted Dear Abby letter that has stuck with her to this day. “It was written by the mother of a child with disabilities who equated the experience to packing for a trip to Paris but ending up in Holland instead. It wasn’t what she expected, but Holland has a beauty all its own, she said. Maybe our lives haven’t turned out exactly how I imagined, but who’s to say that it can’t be just as great?”
When Maggie and Scott Mackie welcomed their newborn daughter Katie into the world two years ago, they were also given news they never expected to hear. Already the parents of 2-year-old Johnny, the couple were thrilled when they found out they were pregnant with a second child. “Almost immediately after delivering her, they told us they had to take her for some testing,” says Maggie. “We were so caught up in the moment we didn’t think much of it, but after a while I began asking questions, and that’s when my OB and pediatrician came into my room and delivered the news, Katie had Down syndrome.” Maggie and her husband were stunned. “We immediately started asking what we had done wrong. We wanted to know why this moment we awaited with joy now seemed so sad,” she says.
Maggie says her time in the hospital was a blur. “My husband and I really needed time to absorb what was happening. We were happy she was here and didn’t want to be sad, but couldn’t help but be anxious about what this was going to mean for our future,” says Maggie. Katie underwent a series of diagnostic tests, because children with Down syndrome often have congenital heart defects or intestinal problems. “Luckily she was as healthy as she could be. She was just like any other baby. Yes, it was harder to get her to eat and she had a little trouble gaining weight, but many babies experience those issues. We realized then that she was a part of our family and that we’d care for her just like we did for our son.”
But the Mackies soon realized Katie would need therapy to help her develop on track. “They don’t give you a manual when you leave the hospital, so I had no idea what she needed and when. We enrolled her in First Steps, a federal program that provides therapy for children with Down syndrome, but I had no idea how to navigate the system,” recalls Maggie. Luckily, a member of the Down Syndrome Association came to the rescue. “After about two weeks, I got a call from a mom who had been through the same thing. I was so relieved to speak with her. She helped me figure out which therapies Katie would need, and how to ask for what I wanted. She was the first one who really explained what it meant to be an advocate for your child,” recalls Maggie.
Mackie depended on the support of other moms, especially in the beginning. “A group of us who all had children born around the same time began meeting. It was exactly what I needed—we could ask questions, share our fears and compare notes.” Maggie says that although she hopes Katie will attend an inclusive school and thrive in that environment, she also thinks it’s important to form relationships with her peers who have Down syndrome. “I just want her to have a network of people who understand what she is going through.”
Maggie says raising Katie has been a joy for her and her husband. “We’re in love. It’s hard not to be. Her smile is so infectious, and she’s such a happy, outgoing child. Last month, the Mackies welcomed a third child, Joey, into the world. “Life with three kids is challenging. I’m a planner and want to know exactly where life is headed, but there is still much we don’t know about what is in front of Katie. But whatever happens, we know now we can handle it as a family!”