Will My Child Speak?

Predicting Speech and Language in Individuals with CdLS

Since 1982, the CdLS Foundation has had the good fortune to have Marjorie Goodban, Ph.D., CCCSLP, as a dedicated professional and advisor to families who have children with CdLS. She has travelled all over the world, providing therapy and assessment for hundreds of individuals with the syndrome.

She was the first to document successful speech therapy in a child with CdLS and show the presence of speech apraxia (impaired ability to speak) in many children with the syndrome. Dr. Goodban also put together factors that can predict, in many cases, whether a child with CdLS will talk. 

Dr. Goodban completed two studies of children with CdLS—one in 1993 and another in 2007. She found that children who do not talk at all, or who are severely delayed in talking, tend to have at least one of the following characteristics:

  • Moderate-to-severe hearing impairment
  • Upper limb malformations
  • Severe motor delay (sitting up later than 25 months or walking later than 30 months)
  • Deficits in social relatedness (autistic-like behaviors, no eye contact, unable to relate to people)
  • Birth weight under 5 pounds (probably the least important factor)

Overall, among the children she studied, 53 percent who were older than age four combined two or more words into sentences. From this research, she divided communication abilities into four different groups:
Talkers, Late Talkers, Limited Talkers, and Non Talkers. (Please keep in mind that there are exceptions in all of the groups.)

  • Talkers are three to four percent of the group. They have normal or near normal development of speech, and they begin talking on their own.
  • Late Talkers are 35 to 40 percent of the group. First words can occur between 12 and 48 months, but for some as late as eight years old.
  • Limited Talkers are 20 to 25 percent of the group. First words come at 7 to 10 years and as late as 12.
  • Non Talkers make up 20 to 25 percent of the group. They usually do not develop language. Instead, they use other means of communication such as gestures, sign language, and objects and pictures.

Dr. Goodban found that children with CdLS have the ability to understand language much more than the ability to produce language. Even children with highly developed vocabularies talk very little. Oftentimes, children have higher cognitive abilities than their language skills demonstrate. Communication is a basic human need for everyone. It is important for parents and school professionals to provide children a method for communicating when they are at home and school. Even a child who develops language in later years needs a way to communicate while they are working on speech skills.

Whether sign language, pictures or objects are used, if a child is able to have a two-way “conversation” with others, it helps to reduce his or her stress and frustration. When poor behaviors escalate, it is often due to frustration from not being able to communicate or not understanding what is happening next, whether at school or home.

Don’t ever stop talking to your child. Some individuals with CdLS begin communicating in their teens and twenties. Communicate and enjoy the remarkable connections.

Credit: Goodban, Ph.D., CCC-SLP, Marjorie. “Communication Characteristics in the Cornelia de Lange Syndrome with Prognosis and Recommendations for Treatment.”

To be in contact
As Dr. Goodban says, ‘Communication is a basic human need for everyone’. This is so true. To interact with others,  to communicate with others, so being in real contact with another person  is indispensable for everyone. For every person it is important to co-create with the other a way to become and to be in contact with each other. This might be the development of speech, but it can also be any other manner, built up together,  to have the possibility to express and discuss wishes and thoughts. Interpersonal contact is essential for the quality of life of each person  and it is the base for his further development like social- emotional, physical and cognitive development.
Ineke Heijnen, Teacher Kental Rafaël, The Netherlands

Find other pages that share the same topic as this page Communication and language15 Communication and language9 Communication and language9
Ineke Heijnen

Originally written by Janette Peracchio, M.Ed., CdLS Foundation Family Service Coordinator

Reviewed and commented by Ineke Heijnen, teacher at Kentalis Rafaël school, specialized in communication

Page history
Last modified by Gerritjan Koekkoek on 2022/10/04 09:59
Created by Gerritjan Koekkoek on 2015/01/04 23:00
translated by Lara Tauritz Bakker

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