On the tip of their tongue

Two out of 1,000 youngsters suffer from the almost-unknown condition of childhood apraxia of speech.

By JUDY SIEGEL-ITZKOVICH
Children mark ‘the reawakening of the vitality of the land from its winter slumber’ on a recent Tu Bishvat (photo credit: JOE MALCOLM)
Children mark ‘the reawakening of the vitality of the land from its winter slumber’ on a recent Tu Bishvat
(photo credit: JOE MALCOLM)
Parents are so excited when their child begins to talk – maybe even more than when he or she starts to walk.
Some parents are not so fortunate, however. There is a “disconnect” in the brain of two out of 1,000 children that makes it impossible for them, even at the age of three or later, to utter words or even primitive sounds.
These children do not suffer from sub-normal intelligence; some are even gifted. They suffer from a little-known condition called childhood apraxia of speech (CAS), a term taken from the Greek word for “inaction.” Praxis also means “planned movement.”
It has nothing to do with autism, the neurodevelopmental disorder characterized by issues with verbal and non-verbal communication, impaired social interaction and restricted and repetitive behavior whose symptoms usually appear before the child’s second birthday, and for which there is, as yet, no cure.
CAS is a genetic motor speech disorder, a problem caused before or during birth for some unknown reason. It can’t be diagnosed before the age of two years.
The child can’t speak – not because of muscle weakness or paralysis but due to problems making sounds and sounding out syllables and words. The brain somehow has difficulty planning to move the lips, jaw and tongue as required for speech.
To some degree or another, a child with a diagnosis of CAS has difficulty programming and planning speech movements.
The act of speaking begins with an intention to communicate. Next, an idea forms, outlining what the child wants to say. The words for the desired message are put in the correct order, using the correct grammar, like beads on a necklace. Each word contains a specific sequence of sounds (called phonemes) and syllables that must be correctly ordered together. All of this information is translated from an idea and information about order of sounds and syllables into a series of highly coordinated motor movements of the lips, tongue, jaw and soft palate.
The brain normally tells the muscles of these articulators the exact order and timing of movements so the words in the message are properly pronounced. Finally, the muscles themselves must work properly with enough strength and muscle tone to perform the movements needed for speech.
Incredibly, all of this occurs in a split second.
The challenge and difficulty that CAS youngsters have in creating speech can seem very perplexing to parents, especially when they see that other children speak seemingly without effort.
THE GOOD news is that most CAS children can be cured – or their condition significantly improved – with early diagnosis and intensive training over a year or more by speech/language pathologists (therapists).
There are such clinicians around the country (99% of them women), but while they have all been taught the basics of dealing with such a problem, only a small number have specialized in treating CAS patients.
Many are experts in treating acquired apraxia of speech, in which adults lose their ability to speak due to stroke, head injury, brain tumors, dementia or progressive neurological disorders. In adults, one can identify a specific region in the brain that is affected, but in CAS, one can’t, maybe because the area is so small.
DR. AVIVIT Ben David, a speech and language therapist and lecturer at Jerusalem’s Hadassah Academic College for the past 14 years, has specialized in the treatment of CAS. Ben David, who received her bachelor’s degree from Tel Aviv University’s department of communications disorders, went on for a master’s degree in the same department and then a doctorate at its linguistics department. She also did short-term training in CAS in Europe.
Interestingly, it occurs at the same rate in all populations but 3.5 times more often in boys than in girls.
“No one knows why,” she told The Jerusalem Post in an interview. “This may be due to the genetic connection, but we really have no explanation. If you ask parents, they usually said the delivery was normal.”
Until 2007, the condition was called developmental verbal dyspraxia, but in most countries, it was changed to childhood apraxia of speech due to a decision by the American Speech and Hearing Association.
“In fact, kids with apraxia of speech are usually very communicative using their hands and face. Parents often say they developed ways of communicating with their child using signs without learning from professionals how to do it,” Ben David said.
Half-a-dozen children are currently being treated at the college.
“We will soon open at our clinic an interdisciplinary center for the treatment of CAS children, mostly for those in the Jerusalem area, but it will also be open for guidance to others outside the area who can’t come here on a regular basis. We’re looking for donors to help offer as much as possible. We will have not only speech and language therapists but also occupational therapists. They must all have a lot of patience,” Ben David said.
There is no other clinic in Israel that specializes in CAS. Legally and professionally, licensed therapists can treat it even if they took only one course or part of one on the subject.
“The college plans to include speech and language therapy students to help in the clinic so we have more people involved and they can add to their learning,” she said. Arab children are already trained by Arabic-speaking therapists, some of whom graduated in Jordan.
The leading organization in the US is Apraxia-Kids, which is a source of much information. It began as a parents’ group and holds an annual conference. That organization has a special 2017 iPads for Apraxia Program. Qualified children with a diagnosis of apraxia of speech are provided with iPads and protective cases to assist with speech practice, use them as a communication tool and provide incentives and educational support.
According to the US organization, researchers have found that CAS may be overdiagnosed. Children – some of them extremely young – are “diagnosed” with it even though a thorough speech evaluation has not yet been possible. Sometimes, due to a lack of experience with CAS, the professional may not fully grasp what should be involved in assessment and in distinguishing apraxia from other speech problems.
Misdiagnosis causes parents to suffer from unnecessary stress, worry and fear for their children.
TREATING CHILDREN is very painstaking work, said Ben David.
“One three-and-a-half-year-old girl I am working with now is able to say only ‘Ta, ti, ti, ta.’ On a one-by-one basis, we teach them how to use their lips and imitate us. They sit at a table or on a rug on the floor. The smallest children can have a session of no more than half an hour. Older ones can pay attention for 45 minutes.”
There are low-tech methods, such as pictures and symbols, as well as high-tech ones, such as applications with pictures that sound out the words. There are iPads on loan from organizations and in special-education kindergartens. Watching TV doesn’t interfere with treatment, but it also doesn’t help.
“We try to turn therapy into games. Sometimes they get fed up and angry or bored, and it treat can take two years or more. Sometimes we reward them with stickers. There are many techniques to help the children. We also teach the parents how to work with them at home.”
Some children have trouble not only speaking but also putting the correct stress on parts of words. They say a word differently each time, said Ben David. “Others have a hard time connecting consonants to vowels.”
When they hear the diagnosis, the parents are usually in shock, but as the problem of speaking appeared gradually after the baby’s first birthday, they actually had time to get used to it.
No medication has been found to have any effect on CAS.
Many children who have undergone a few years of treatment are able to speak completely normally. They can go to the university and have a normal life, including a social life. However, continued Ben David, there are other children with very complicated cases or with additional syndromes, and they will not be cured.
The health funds pay for therapy, but there is a strict limit on how many sessions.
Most children need many more sessions.
The well-off can pay for private therapy but families who don’t have enough means cannot afford it.
JERUSALEM DENTIST Dr. Baruch Hain and his wife have a six-and-a-half-year-old son with CAS, one of twin boys; the sibling does not have the disorder.
“He was diagnosed early, because my wife is a psychologist, so we saw a problem and took him for speech evaluation."
"We paid privately for therapy at first. He was in a special-education kindergarten, but now, he goes to a regular school that integrates children with disabilities and he has help once a week in school and once a week with a Meuhedet Health Services clinician.”
Hain’s son has received no help from the National Insurance Institute.
“We didn’t even apply because parents with a lot of experience told us it was a waste of time. We have a helper for him at school, but every year we have to go through a committee to get money for her.
“In the US, CAS kids get help at school three to five times a week. Here it’s only once a week, at the health fund clinic. He should be getting therapy three or four times weekly.
Meuhedet told us it ‘believes’ that a child like ours needs a ‘rest’ from treatment for a few months, but this is absolutely not based on scientific evidence. The health fund may save some money, but if he has to stop, he will have to waste time on getting to know a new therapist. His condition will decline.
Stopping for a while is not for the good of the child.” He added that many parents of CAS children have additional monthly expenses of NIS 10,000 for extra sessions with private speech therapists, occupational therapists, physiotherapists and others to optimize their treatment and recovery.
Now, in first grade, the boy’s pronunciation has dramatically improved, his father testified.
“He has a speech delay in building a sentence and telling a story. He has things to tell, and is really charming, but it comes out confused. His peers don’t make fun of him, but little children at play don’t have the patience to wait until he can say everything he wants to. It’s been a long haul, but we’re optimistic. It’s amazing how much progress he has made. As a baby, he never babbled.
At two and a half, he wasn’t able even to say his name.
“There is so little understanding of this condition that if you project to your child that he or she is ‘dumb,’ they will start to believe it. Our son always understood everything we said. Now, he is learning to read and write. Maybe this will help him to express himself.”