From: Under the Umbrella Fall/Winter 1999
Children’s Specialized Hospital
At two years of age, Tanner Geng of Warren was unable to blow out the candles on his birthday cake. “He couldn’t purse his lips to blow. His face was very round and he was not expressive.” said his mother Lisa.
For Lisa Geng and her husband, Glenn, it was a major tip off that something was definitely wrong with their second child who was born a very healthy baby.
The Gengs recalled that at eleven months of age, Tanner developed two cases of roseola back to back with very high fevers. After the fevers, he lost the ability to say “da” for dad, as he had done before. He could still say “ma” but, could only say “mmm” for everything else.
“Looking back there were signs before he turned two that he had problems. But compared to our older son Dakota who had severe respiratory and developmental problems due to a traumatic birth, Tanner seemed so advanced.” said Geng. “but, not being able to blow out the candles was a real wake up call for us.”
The Gengs sought a diagnosis for their son’s speech problems and were finally given a diagnosis of apraxia, a disorder which results in difficulty coordinating the oral-motor movements necessary to produce and combine speech sounds to form syllables, words, phrases, and sentences.
In Tanner’s case, he had verbal and oral apraxia meaning that he was unable to produce words an did not know how to move his mouth, cheeks, and tongue to make sounds. “He was not even aware of his own tongue.” said Geng. “If you put peanut butter on his upper lip, he didn’t know how to lift his tongue to lick off the peanut butter.”
“With apraxia, the child’s brain knows what it wants the body to say or do, but it can’t get the message out of the mouth or get the facial muscles to form the words.” explained Lauren Zimet CCC/SLP, a Children’s Specialized Hospital speech language pathologist who works with children with apraxia. “Motor planning is the first step in language skills. Children with apraxia have a shortage of speech sounds or phonemes.”
Some children with verbal apraxia may only be able to utter a few sounds, whereas, others may be able to say a few words but have difficulty stringing them together to make a sentence. Those with oral apraxia do not know how to move their facial and tongue muscles to make sounds. For some, the apraxia may also affect their fine motor skills, making everyday tasks such as dressing and writing difficult.
Apraxia is a mysterious disorder in which a child may be able to say a word one day, but not the next. Parents of children with apraxia often report that it seems as if their children “lose” words without explanation.
According to his mother, Tanner experiences episodes in which he cannot perform a task that he was able to do the day before, such as putting on his socks and shoes. He is unable to recall the necessary movements and sequencing.
For children with apraxia it can be a very frustrating condition for though they cannot speak, they often have average to above average intelligence. Many can even read and write perfectly but cannot speak.
Another area of frustration is the lack of information on the cause of apraxia, which is thought to be neurologically based and may be present from birth or develop later on. While the Gengs believe their son’s apraxia is due to his bouts with roseola and high fevers, there is no clear reason why some children have the disorder.
What is known is that speech therapy, and occupational therapy in the case of fine motor difficulties, can help and the earlier the better. According to Zimet, children with apraxia benefit from intensive therapy for motor planning and parent involvement is key.
“A child will not make progress is they only receive reinforcement during therapy sessions.” explained Zimet. “The child’s parents and other caregivers need to learn the therapy techniques and reinforce them at all times.”
Since each child responds to the various therapies in differing degrees, Zimet stressed that the therapy should be individualized for each child.
“There is no one therapy method that works best. I suggest an eclectic approach, taking the best from each method and individualizing it for each child and family. Explore different therapies or techniques, especially if the child seems to be plateauing. Again, daily reinforcement of whatever therapy technique is being used is important. Sounds can come and go, but with continual reinforcement they are more likely to stay” stressed Zimet.
Until children with apraxia are able to communicate effectively verbally. they may require an alternative form of communication, such as sign language.
“Signing is a viable means of communication,” explained Zimet. “There are parents who may worry that if they teach their child sign language, the child may not want to then develop their speech. But, the research hasn’t shown that.”
Communication books also can be helpful. Zimet suggests that the book, a type of picture book, be made with the child and be a fun experience. It should be personalized and include categories such as food, toys, routines, and dressing.
According to Zimet, use of signing and communication books helps alleviate frustration for the child and the parents, reducing behavioral issues and fostering self-esteem.
“Any type of vocalization along with a sign or pointing to a picture is great.” said Zimet. “The child may just be able to day “da” for dog at first but through repetition the therapist and family can help the child form the word. In the meantime, the child is able to communicate with others.”
Again, Zimet stresses the importance of repetition and family involvement, something that Barbara Sullivan of Westfield has proven to show results.
Like, Tanner, Barbara’s son, Christopher, who recently turned three, has apraxia. She learned through Zimet who she describes as phenomenal, the importance of facial stimulation.
“I was determined to help Chris>” explained Barbara. “One day after Lauren explained facial stimulation, I sat with him in front of the mirror and showed him how to form words.” By the end of the first day he could say what every mother years to hear – “mommy”
While Chris is making progress. Sullivan reports that is was not easy to get the process rolling. “When Chris was 15 months old I felt that there was something wrong with his speech but his pediatrician wouldn’t entertain the idea.” she said. “At eighteen months his speech wasn’t any better. He could only say “dat” and would point to everything. At nineteen to twenty months he could say “titi” for the baby sitter, “baaa” for Mom, and “daaa” for Dad. The only other word he had in his vocabulary was “phat”
The Sullivan’s pushed for an evaluation and soon learned that their son had apraxia.
Once a proper diagnosis had been made, it is important to find a therapist who can develop a rapport with your child. According to Zimet, many children with apraxia feel nervous and anxious attempting to speak in front of the others because of the difficulties they have. Therapists need to make the sessions positive and fun to relieve and lay the foundation for a successful therapy session.
The Sullivan’s add that it is important to find someone who is willing to take the time to look at the whole child. Child, had difficulty sitting still for therapy sessions and paying attention. His other CSH speech therapy, Mara Friedman, suggested that they investigate what was causing the hyperactivity.
“It turns out he is allergic to red dye. Once we cut out foods that contained the dye, he was significantly less hyperactive.” reported his mom.
Now that Chris is less active. Friedman is able to work on developing Chris’ facial muscles by having him blow horns and bubbles.
The Sullivan’s work with Chris everyday at home, modeling how to say things and reinforcing what he has learned. They even have goals and homework each week from Friedman.
“Instead of worrying there are things we can do to help him now.” exclaimed Sullivan.
When they do have worries they have other families they can share them with thanks to the initiative of the Gengs.
“When Tanner was first diagnosed with apraxia, I looked for a parent support group but soon found that there are only seven groups in the entire world for apraxia. None of them were in New Jersey.” said Lisa (The closest one was eight hours away) “Lauren suggested that I start one here. So I did.”
Twenty-five people attended the first meeting of the Children’s Apraxia Network this past August. Children’s Apraxia Network, which was founded by Geng, soon hit a membership of 100 people.
“The response has been overwhelming. People from Pennsylvania, Connecticut, New York, and Southern New Jersey, have made the trip so that they can meet other parents and professionals and learn more. There is so little out there that we have now become a resource for parents and professionals alike.” said Geng
Professionals, such as Zimet, have addressed the group to help parents sort through this mysterious disorder.
“It can be a roller coaster for parents and their children.” said Zimet. “They need to be reminded of how far their child has come and to build on past successes.”
She suggests that parents keep a journal noting new sounds and words their child has mastered. They also should note challenges, so that thy next time their child encounters a difficult period they can look back and see previous achievements and they progress they have made.
“The key is to identify the problem as early as possible, find a therapist and therapy techniques that work with your child and keep up the reinforcement,”stressed Zimet. “many of these children can become effective communicators over time.”
*Lauren Zimet CCC-SLP was Tanner’s Early Intervention therapist. She is now an Early Intervention therapist in Georgia.and someone we still love to have in our life. She is the one that helped me (Lisa Geng) start the first nonprofit Children’s Apraxia Network -and is still helping with CHERAB today!