Nicholas Ramage and Braylon Brown cruise around the room playing with trucks, tractors and other toys. They play just like any other 2- and 3-year-old would.
During the course of an hour, few words have been spoken.
Nicholas stops for a moment and points to his knee. His mom, Bonnie Ramage, tries to decipher what he means. She eventually figures out that he wants a Band-Aid put over his knee, even though he isn’t hurt.
“He’s really into Band-Aids right now,” Bonnie said.
Braylon seems to enjoy them, too. Nicholas put one on Braylon and they proudly sport their bandage tattoos, both boys not saying a word.
Both kids have childhood apraxia of speech, a speech disorder where the child speaking knows what he wants to say, but can’t communicate it to his mouth. Speech is difficult. The brain has trouble sending the signals to move the body parts necessary to form the words.
“Braylon is incredibly intelligent.” Janell Brown, Braylon’s mom, said. “He can do puzzles on the iPad and run Netflix. But he gets frustrated sometimes trying to say what he is thinking.”
Both Nicholas and Braylon attend speech therapy several times a week. Janell said Braylon started therapy knowing how to say around 10 words; now he knows more than 40.
Nicholas also has autism, which oftentimes goes hand-in-hand with apraxia of speech. His mom said he can only communicate a handful of words.
Both kids can understand what’s being said to them, and Janell Brown wants to make that known. She is organizing the Billings Walk for Children with Apraxia of Speech. The walk, which starts at 10 a.m. on Aug. 16 at Dehler Park, will be used as a fundraiser and educational experience for the community, Janell said.
“We want this walk to educate people and let them know what exactly apraxia is,” Janell said. “My biggest fear is that Braylon will be made fun of by other kids because they don’t understand him.”
The walk will raise money for the Childhood Apraxia of Speech Association of North America and all proceeds will go to research on apraxia. There is a goal to get 50 people to participate in the walk and a fundraising goal of $4,000.
A family affair
Bonnie signed up for the walk and plans to bring Nicholas, along with the rest of her family.
“I want people to recognize that this affects a lot of kids,” Bonnie said. “If you know apraxia exists, then you can know how to be more respectful of it.”
Janell said she wants the walk to be fun for children and not just another benefit activity. She is planning to have carnival games, a fire truck and a raffle with prizes. She said the walk still needs more donations.
Vicki Andre, a speech pathologist at the Speech and Language Ability Center in Billings, said children with apraxia can eventually overcome the affliction, but speech therapy is needed.
“With direct and intense intervention kids can overcome it,” Andre said. “It takes years of therapy. It’s also important to start therapy early.”
Both Nicholas and Braylon see Andre for weekly speech therapy.
Like Nicholas, Andre said apraxia can also be coupled with other disorders like autism. She said Down syndrome, other language delays and sensory disorders are also common with children who have apraxia.
Andre said the therapy for each child varies based on the severity of apraxia. Some children only have the ability to say a few words and some can only make vocal noises, not necessarily any words.
“I break down the sequence of speech,” Andre said. “We start with the production of isolated sounds and gradually become more advanced to different words. The kids want to be talking and communicating so it can be frustrating when they can’t get those words out.”
Nicholas uses a picture exchange communication system. The system, PECS, uses different pictures in a book for Nicholas to pick out and communicate what he wants. His mom said the only way for her to definitively know what he wants is for him to pick up the picture and place it in her hand. It can come in handy when she wants to know if he wants to play with toys or what food to eat, she said.
Janell said speech therapy for apraxia can be expensive, especially if a child goes multiple times a week. But the progress made in therapy is important.
“In therapy, they have a way of distracting kids from their own distractions,” Janell said.
Even though there will be years of therapy to overcome apraxia, Bonnie knows Nicholas will have to live with autism his entire life.
“He can get past apraxia eventually, but he will live with autism his entire life,” Bonnie said. “With apraxia it’s nice there’s a light at the end of the tunnel, but as a mom, you don’t know when it will end. It’s stressful financially and emotionally.”
Andre said she enjoys seeing the progress her kids are making in speech therapy.
“It’s very exciting when we can finally get kids going,” Andre said. “It’s very exciting to see a child finally be able to verbally express themselves.”
The key to apraxia is repetition, Bonnie said.
“Sounds and repetition are important,” Bonnie said. “Once Nicholas learns a new word, we go back through all of the words he has already learned. Everything can be a speech lesson.”
After seeing her son work through his speech therapy, Janell said credit needs to go where credit is due.
“You see how hard they work,” Janell said. “To me, Braylon is amazing. It’s so much work for him to just say five words. And when he does learn a new word or say a full sentence, we celebrate like he just completed a marathon.”
Those interested in joining or donating to the Apraxia of Speech Walk in August can contact Janell at firstname.lastname@example.org or visit the website secure.apraxia-kids.org/MontanaWalk.