Seven-year-old Curtis White laughs with his friends, jokes with his brother and is very loud at home. Very loud, said his mom, Cathy White. Curtis is realizing he has a lot to say, with his voice that has been carefully curated and practiced, but that it may never be easy for him to say it.
At 2 ½ years old, Curtis was diagnosed with apraxia by his speech language pathologist (SLP). There are several forms of apraxia, but Curtis’ is Childhood Apraxia of Speech, a neurological motor speech disorder also referred to as CAS and, according to statistics, affects only 1 or 2 children per 1,000 though some experts say this number is on the rise.
Cathy said that when first diagnosed, Curtis’ brain was trying to tell his mouth’s muscles what to do in order to speak, but the message got scrambled. Curtis might have known what he wanted to say, but his brain had a problem getting his mouth muscles to move.
“Two to 5 years old were really hard years,” Cathy said. “He is now further along and able to communicate what he has accomplished.”
Cathy has found support with social media and said that is one of the only reasons she is on Facebook.
Mikey’s Wish – Verbal Dyspraxia Awareness is one page that Cathy visits because Mikey is a 17 year-old from the United Kingdom who is the founder of Mikey’s Wish, “a charitable cause that raises funds to support children in the UK, who have additional needs in school,” according to the Apraxia-Kids website.
“Curtis could be Mikey in 10 years,” Cathy said. “He will use his voice to help others.”
Through online support groups, Cathy has found learning centers that focus on interactive approaches to work with children with apraxia.
Two and a half years ago, Curtis was accepted to a two-week summer session known as the SPEAK program (Speech Praxis Experience at Kaufman) at The Kaufman’s Children Center in West Bloomfield, Mi.
“He worked with Nancy R. Kaufman, a leading expert on Childhood Apraxia of Speech along with other amazing members of her staff,” Cathy said. “He was one of only four kids in the two-week session. It was intensive and incredible! He made HUGE strides while we were there, so we returned for another week that fall.”
During this visit, Cathy met some of the people in her online support group in Michigan, and she found this to be a bonding experience and a relief because “they got it.”
“Unless you are living it, you truly don’t understand,” she said.
Curtis was in first grade at the time but wasn’t making a lot of progress because he didn’t have all of the necessary tools for him to learn in a mainstream school setting, according to Cathy. Both Cathy and her husband, Chris, knew that Curtis needed a more intensive approach, so they researched programs for Curtis for the summer of 2018. And they began to think about having Curtis repeat first grade.
Curtis’ parents struggled with this for the school year, because Curtis had a good friend who Cathy knew would always be there for Curtis — to sit by on the bus, to help him speak and who understood Curtis.
On the other hand, the Whites knew that if Curtis moved to second grade, he would have to take assessment tests online, he would be required to complete more individualized learning in the classroom setting and he would need to communicate verbally for participation. And they felt he just wasn’t ready for that step.
So the Whites committed to a month of study — over summer break — for Curtis at Lindamood-Bell, a program that has online instruction and learning centers across the nation. The first week, the Whites remained in Owensboro and Curtis worked online four hours a day on weekdays. But Cathy knew that for Curtis to get the most out of the program, he needed to go to a Lindamood-Bell center for individualized instruction. The Whites chose a center in Memphis, Tenn., because Cathy’s parents lived close and they could make it a trip for Curtis as well.
Curtis worked four hours daily with a group of instructors. He would have a different instructor each hour, but his team of instructors would remain the same people for the most part, according to Cathy.
“I think that’s to try to keep things fresh and interesting with different personalities and approaches although they are using the same methods, but he was able to connect with this core group who were instructing him and cheering him on,” Cathy said. “He has continued his online instruction with this same group who have come to know him personally now.”
Curtis would complete his work mid-afternoon and then Cathy would take him to the zoo, a museum or a local park. She wanted him to know that this was not completely a “work” trip and he could have some fun. The hard part was leaving Chris and Curtis’ brother Leo back in Owensboro.
After two weeks, Cathy and Curtis met Chris and Leo in Nashville for a weekend and Cathy came back to Owensboro with Leo and Chris took Curtis back to Memphis to finish his sessions at Lindamood-Bell. Both parents liked the individualized time with the kids and both kids seemed to enjoy the special attention as well, according to Cathy.
Cathy said that Curtis made huge strides in “training his brain,” while there and he continues to work in the program online weekly.
“But his confidence — he is so different from where he was last year to where he is now,” Cathy said. “We know he is capable of reaching his goals.”
Cathy wanted to celebrate Curtis’ successes and recognize him for his hard work. Through social media, Cathy learned about Walk for Apraxia, walks that celebrate the achievements of “apraxia stars,” and raise funds to support the programs across the country. She noticed one in Jacksonville, Fl., and began thinking seriously about taking the family.
“My best friend lives in Jacksonville, we always wanted to take the kids to Disney World, the dates worked out, all commitments with soccer and other events were finished.” Cathy said. “But we would have to take the kids out of school.”
Thinking about how Curtis spent his summer working 20 hours a week, she committed within a month of the scheduled walk and said they had the best trip ever.
“It was the best, most perfect trip,” Cathy said. “We just enjoyed being a family at Disney and Legoland and then ended the week with the walk.”
Cathy said they just showed up to the walk and she noticed stars lining the track with names on them. After talking to the organizer she asked if Curtis could be included. Soon, she saw his name on a star.
After the walk, persons with apraxia are recognized on a stage and receive a medal.
“At school, sometimes it’s the same kids who get recognized,” Cathy said. “He was beaming [when his name was called]. It was recognition for all of [the kids’] hard work and it created a sense of empowerment.”
And his greatest support was his brother Leo, who Cathy said she sometimes feels guilty about because of the time the family commits to Curtis.
“He [Leo] was so proud,” Cathy said. “He wanted to carry a sign. He is his biggest cheerleader.”
After the walk, Cathy was inspired to use her voice as a parent of a child with apraxia. She has reached out to local families to start a support group for parents of children with apraxia. And she has reached out to the coordinators of apraxia walks in Jacksonville and Arkansas to ask how she could start a local walk. Currently, there is a Walk for Apraxia in Cincinnati, but Cathy hopes to have one in Western Kentucky.
“That is my goal for 2020,” Cathy said. “For 2019, I want to go to more walks and learn what I need to do to organize one.”
Cathy wants to get the word out about apraxia in the community and so that people have a general idea of what it is. She is aware that it has to be the parent who brings awareness of apraxia to the community and that only through awareness can research be continued.
This will cause Cathy to go out of her comfort zone, but, she said, apraxia is out of it already.
“We also need more SLP therapists trained and certified in apraxia,” Cathy said.
Cathy knows this is not a sprint and the Whites are already looking at summer plans involving more courses for Curtis in Michigan and Tennessee. But, they are choosing to celebrate Curtis and his fellow “superstars” who continue to “conquer, thrive and shine.”
“I would love for Curtis to grow up and one day, use his voice to help others,” Cathy said. “I am so proud of Curtis and his determination and the fight in him. He is strong willed, which is sometimes hard to parent, but it will serve him well.”
Cathy hopes that the learning struggles Curtis has faced early in life will allow for future strength. His confidence is building daily and his hard work is evident in his daily endeavors.
“When you can lead, you feel empowered,” Cathy said. “We still have a long way to go, but wow.”
