After a long adoption journey, Chris and Cathy White felt God’s plan after being matched with a little boy in Korea. They named their son Curtis and joyfully brought him home when he was 16 months old. Curtis was a happy, healthy little boy, but was extremely quiet.
“Chris and I joked at first that he was going to be the strong silent type,” said Cathy. But as time went on, she felt her son should at least be babbling. But Curtis didn’t babble. He couldn’t repeat animal noises when his parents eagerly attempted to teach him. He was silent.
Friends and family in the White’s lives would say it was the language difference or dismiss the issue, saying he would just be a late talker.
“I just knew in my heart that that wasn’t it,” Cathy said. “I knew there was something bigger.”
At 2½ years old, Curtis was still completely non-verbal. He began working with a speech language pathologist (SLP) and within a few months his therapist told Chris and Cathy she thought Curtis had apraxia. Cathy went into “mama bear research mode.” Chris and Cathy had never heard of apraxia, but through research discovered why—only .1 to 1 percent of children are affected by Curtis’ form of apraxia.
There are different forms of apraxia: acquired apraxia, caused by stroke or brain trauma; global apraxia, affecting speech and limbs; and what Curtis was soon diagnosed with, Childhood Apraxia of Speech, a neurological motor speech disorder also referred to as CAS. Cathy says Curtis’ brain tries to tell his mouth’s muscles what to do in order to speak, but the message gets scrambled. He knows what he wants to say, but his brain does not send the correct instructions to move his jaw, tongue, lips, and palate the way they should move. Therefore, motor execution is affected and words may or may not come out, and if they do are often unintelligible. Children with CAS require years of frequent and intensive therapy in order to effectively communicate verbally.
By the time Curtis was 3½ years old, after an entire year of intensive speech therapy, he could say only 10 words—words like bye, blue, moon, two. From the ages of 3 to 5, after hundreds of hours of therapy, Curtis gained a lot of single words, but still couldn’t put two words together.
Starting school brought a lot of anxiety for the White family. When Curtis started at Settle Memorial Preschool, he was still non-verbal. “It was very scary to send our child to school without him being able to verbally communicate with others or tell us anything about his day,” said Cathy. But again reminded of God’s plan, Cathy discovered Curtis’ teacher had a family member with apraxia.
Curtis’ willingness to learn coupled with a teacher who understood how to work with him helped his success. But apraxia proved most challenging socially. Cathy remembers the struggle Curtis faced when his preschool class had show and tell. He faced a similar situation during his preschool music programs. The entire preschool sang in front of an audience of loved ones. But Curtis couldn’t sing. “Some kids could have easily cried and run off the stage because they didn’t feel comfortable,” Cathy said. “But he was up there just being a brave boy. He couldn’t sing. It would break my heart because I wanted that for him so much, but at the same time I was so proud of him for showing everyone how brave he was.”
Other significant moments like singing happy birthday at a friend’s party, telling his parents “I love you,” saying trick or treat during Halloween, telling his parents when he didn’t feel well and what hurt, were all affected by Curtis’ apraxia for several years.
“I don’t want sympathy for him,” Cathy said. “I want empathy. I want people to try to understand what apraxia is and what Curtis and other children fighting CAS must overcome and that CAS affects so much more than just speech.” Children with CAS have to give up a lot of their time doing “kid stuff” for therapy time, according to the Whites. For years Curtis has had four therapy sessions a week—two at Wendell Foster and two at school. The Whites say it is very frustrating for children with CAS to know what they want to say but not be able to vocalize it. “These children are very bright, resilient, hard working, and courageous,” said Cathy. “My hope as Curtis’ mom is that people will see how intelligent, creative, happy, and funny he is, and they will focus on his strengths not his struggles. I want others to see him shine the way we do.”
Cathy remembers the day things began to change. It was a pretty spring day—March 29, 2015 to be exact, and Curtis was 4 years and two months old. Chris was outside playing with the boys (the Whites adopted a second son, Leo, from Korea when Curtis was 3½). Cathy was inside at the sink washing dishes with the window open. She would playfully yell the boys’ names as they ran past the window. After yelling, “Curtis!” to her sweet, oldest son, Curtis ran up to the window and yelled his name back. This was the first time he had ever said his own name. “That moment will forever be engraved on my heart,” Cathy said. “I prayed for that for so long. I cried the ugliest happy tears and thanked God right then and there for those two syllables. These little things that everyone else takes for granted are cherished by us.”
When Curtis was 5½ years old, the Whites were accepted to a summer session at the Kaufman Children’s Center in Michigan, with Dr. Nancy R. Kaufman, a leading expert on Childhood Apraxia of Speech. The two-week intensive therapy program was a huge breakthrough for Curtis according to Cathy. Curtis entered the program putting two and three words together and left being able to talk in broken sentences. So impressed by Curtis’ progress, the family returned for another week of intensive therapy a few months later.
Curtis, now 7 and in first grade at Sutton Elementary, can talk in sentences, although his speech is still broken with some dysfluency (stopping himself mid-sentence to process how he wants to finish what he wants to say). Apraxia often goes hand in hand with other learning difficulties especially in the areas of reading, spelling, and math. And although, Curtis’ speech is now considered “resolving,” he is now left with the aftereffects of apraxia—social anxiety and literacy challenges.
“We still have a long journey ahead of us full of challenges, but I know that he is up for it and will give it his all,” Cathy said. “Today we have a lot more happy tears than sad ones. More high-fives and praise for accomplishments than fear and anxiety over the day at hand and years ahead.”
One of those high-five moments came just a few weeks ago when Curtis surpassed both of his goals for reading and math during his first grade testing.
“I’m so incredibly proud of Curtis,” Cathy said. “As parents we like to think that we are inspiring our children, but this boy continually inspires me to be a better person—to give my all at all times, to fight for what is important, to never give up, to face even the toughest of challenges with a positive attitude, to laugh daily and to celebrate and be thankful for even the things that seem so trivial, because they’re really not.”
The Whites would like to thank all of Curtis’ SLPs who have worked along side of him on this journey and helped him find his voice. They have been instrumental in empowering the entire family.