Kids' motor speech disorder spurs mom to awareness effort

        Jackson Creager smiles shyly, then buries his face in his mother’s neck as she laughs. She tries to prompt him to talk about his day at the pool, but he just grins and finally answers “yes” when she asks him if he had fun playing in the water.

Jackson is mostly a normal, happy four-year-old. So is his sister Alaina, 2 ½, affectionately known as Lainey. The children love to play games and keep their mother, Lisa, busy.

You would never know by this small interaction at the Creager family’s kitchen table in Huntersville that Jackson and Lainey have apraxia, a motor speech disorder that affects the fine motor skills needed to coordinate the tongue, lips, jaw and palate.

Apraxia is not a developmental delay; it is a disorder that causes children to have difficulty with the programming and planning of speech movements. Or as Lisa Creager put it, “the children know what they want to say, but the messages are getting stuck.”

“Jackson was a happy baby and was reaching all of his other milestones on time, but something was amiss,” she said. “His pediatrician at the time just kept saying, ‘let’s wait and see,’ but as time went on and it was time for more interaction, it just wasn’t coming.

“He would giggle, but not attempt to imitate my speech. He didn’t babble or make the primary sounds babies normally do. Everyone kept telling me it was fine and I was starting to second guess myself, but when he was 10 months old, I put my foot down and demanded answers.”

Lisa said her pediatrician suggested if she was really that concerned, she should get an evaluation with the North Carolina Infant-Toddler program.

“As a first-time mom, I didn’t know that was an option,” she said. “At this point, Jackson was 10 months old and I was pregnant with Lainey, so I was determined to get this resolved. I got Jackson into aggressive speech therapy. The speech therapist told me that after working with Jackson, he had something far greater than she knew how to deal with, and I finally had my validation. Apraxia was mentioned and I got online and started to do research.”

After researching the symptoms of apraxia and joining an online chat room with mothers who have children with the disorder, Lisa felt she was on the right track. She was then on a mission to get new doctors to help Jackson.

 “One pediatrician spent maybe fifteen minutes with my son and diagnosed him with cerebral palsy,” she said, shaking her head. “She didn’t use any diagnostic tests but slapped him with a label. I was pretty sure about the apraxia diagnosis, but I was hesitant to make Jackson undergo any invasive tests or put him under anesthesia.

 “After the third neurologist, I changed my mind, because I needed to know all I could to help my son. We did MRI’s, EEG’s and heaps of blood and chromosome tests. In the chat room, I spoke with a doctor whose child has apraxia and she gave me a check list of tests we should do. After the tests came back clear, we knew it was apraxia and then I knew what to do.”

 Jackson goes to speech therapy three times a week for both private lessons and those with the CDSA, or Children's Developmental Services Agencies. He also does occupational therapy once a week with CDSA and privately.

 “We want to hit all the angles and put the right team together,” Lisa said. “I think with the therapists and medical professionals we have now, it’s like the dream team. They are so helpful, and having everyone in place was great when Lainey came along and was also diagnosed with apraxia.”

 Lainey is “feisty” and “insistent,” according to her mom.

 “She has a less severe form than Jackson and has more sound capability,” she said. “She’s good at imitating and can do short phrases. They both do their best, but she will have an easier time.”

 Lisa said she felt “extremely blessed” when a definite diagnosis was in for both children because she knew what she was dealing with. “I knew it was something that could be resolved with a lot of work and as long as I was there to facilitate it, my kids could get the work done and be just fine,” Lisa said.

 Apraxia cannot be completely cured, but with therapy and determination, the children will eventually be able to talk normally, doctors have told the Creagers. Because children with apraxia develop regularly other than their speech capability, Lisa was able to teach the children sign language to communicate in the meantime.

 The kids also have a large magnetic board in their home with pictures of common household items that they can use to tell their mother what they want if they are struggling with the words.

 “Both of my kids have such easy-going dispositions; it’s amazing that they’re so happy and rarely get frustrated with their lack of ability to communicate,” Lisa said. “They’re really clever and find ways to get their point across through gestures and signing.”

 Lisa was nervous when it was time for Jackson to go to preschool, but was relieved to find his teacher used to be a speech therapist. She also took time on parent/teacher night to explain to his classmatess parents about apraxia.

 “I was so afraid that he would get bullied, but he had a beautiful year last year and the social interaction is so good for him,” she said. “I think we’ll have a great year this year as well.”

 Because of her difficulties while searching for a diagnosis for Jackson, Creager felt compelled to form a support group in the Charlotte area for moms who have children with apraxia.

 “There wasn’t one when I was learning about apraxia, so I wanted to be proactive and create a group,” she said. “I’ve given flyers to counselors and therapists in the area, so more moms know we exist. We have 12 members now from the Charlotte area and I know there are more moms out there dealing with this, so I want to create awareness.”

 Another way Lisa is bringing attention to the disorder is by pairing up with her old employer, Brawley Middle School in Mooresville. Lisa was a counselor at Brawley for a number of years and the school often raises money for local charities. On September 3, students will be able to buy hot pretzels and the money raised will help CASANA, the Childhood Apraxia of Speech Association.

 “It’s so important that our students learn about and help local causes, especially one so important to a former employee,” said Brawley Principal Jimmie Dancy. “Lisa still comes by and brings her son up here, and the school is like a family. I’m glad we’re able to take part.”

 Lisa hopes that the event will raise $750 for CASANA, and next year, she plans to host a walk for apraxia, with the money again going to support the organization.

 “It’s going to be a long road for my children, but we’re going to get there,” Lisa said with determination. “It won’t be next week and it may not be next year, but maybe in a few years, it will happen.”

 In the meantime, Lisa celebrates every time her children successfully say a new word.

 “They’re so bright; I know they’re going to be fine,” she said. 

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 To learn more about CASANA, visit apraxia-kids.org. To find the local Charlotte support group for apraxia, go to “Apraxia Support Group of Charlotte NC” on Facebook.