Children and adolescents with Down syndrome are at high risk for speech and language difficulties based on anatomic, physiological, and cognitive factors (Kumin, 1994, 1999). There is a high incidence of speech and language problems, particularly in the areas of intelligibility of speech and conversational skills. Speech is an overlaid function on the same structures and movements used for the biological functions of respiration, self-regulation, and feeding. Speech is an output system, dependent on well-functioning sensory input systems such as hearing, vision, and touch. Even before the child is speaking, it is possible to work in early intervention on oral motor skills, sensory input and integration skills, and cognitive skills that provide the foundation for speech and language development. As the young child begins to process information from his environment, there are many techniques that can be used in treatment and at home to facilitate speech and language development. In the preschool years, the focus should be on learning concepts and on expanding vocabulary and social interactive language skills. In children of school age, there is an opportunity to focus on school-based language so that children can make progress in school subjects. In adolescence, there is a need to plan for transitioning into the world of work (Kumin,
1999). At all stages, there is a need to be proactive in evaluating and treating communication difficulties.
What is an effective speech and language treatment program? A program is effective if it is meeting an individual's needs and helping that person reach his or her goals. Although all treatment plans must be individualized, there are some general concepts that underlie effective speech and language treatment programs.
1. Families and professionals must be partners in speech and language treatment.
Communication is an activity of daily living. Speech, language, and communication are best learned and practiced in daily life. But there are specialized methods for teaching children with Down syndrome to speak. Through a family-centered comprehensive speech and language treatment program, families are taught the tools that they need to help their child (Kumin et al., 1996) Families have many opportunities to observe their child's communication difficulties. Families can provide feedback relating to the child's interests and activities and can help prioritize the communication goals that will have maximum impact on the child's daily life. Speech and language treatment is only valuable if the skills learned carry over into reallife use, into the classroom, the home, and the community. Families, teachers, and friends can provide the support for the child to ensure that there is practice in real life. They can provide ongoing feedback so that the speech language pathologist knows whether the treatment methods are effective or need to be modified.
2. Comprehensive evaluation leads to an individualized comprehensive treatment plan.
Speech and language treatment must be individualized. There is no one pattern of speech and language characteristics or development for children with Down syndrome. For example, children with Down syndrome have been reported to say their first words from 9 months to 11 years of age, and combining two words has been reported from 18 months to 12 years. A detailed profile of the communication strengths and challenges for an individual child at a particular time leads to the development of an appropriate treatment plan. If the child is in an ongoing treatment program, subsequent evaluation can occur, as diagnostic therapy, on a continuing basis. If the child is not enrolled in treatment, speech, language, and oral motor progress should be monitored on an annual basis.
3. All children and adolescents need systems that will enable them to communicate effectively throughout life.
For most children with Down syndrome, speech will be their primary communication system. But a child with Down syndrome may not be develop-mentally ready to speak until ages 2-4 or even older. Until the time he is able to use speech, he needs a system that will enable him to communicate with his environment (Kumin, 1994). That might be sign language or a communication board or a computer-based language system. For the older child or adolescent who is very difficult to understand, a communication system to assist speech intelligibility or to substitute for speech may be needed. This is known as augmentative or alternative communication (AAC). At different times in the life cycle, an individual may need to supplement speech to aid understanding.
4. There is a basic relationship among input-association-output systems.
Speech and language development is based on hearing language in the environment. Sensory inputs from auditory, visual, tactile, kinesthetic, and proprioceptive systems enable infants and toddlers to learn about the objects and people in their environment. The associative areas of the brain enable infants to make sense out of what they see and hear in the environment and to connect sounds and symbols with people, objects, and events.
Speech is an output system that is based on sensory input, tactile input, oral motor muscle strength, precision and coordination, and associations between symbols and referents that form the basis for language. Children who have difficulty with being touched around the mouth or on the tongue, or who have difficulty with suck-swallow-breath coordination or with chewing different food textures are at high risk for having difficulty developing the sensory, tactile, and motor bases for speech (Kumin and Bahr, 1999). When these difficulties are addressed early through feeding therapy or sensory integration therapy, there is a positive benefit for speech development. For speech, the output system, to function well, hearing, vision, and touch must function well.
5. There is no one pattern of communication strengths and weaknesses for children with Down syndrome.
Some children have more difficulty with sound discrimination and phonological awareness. Others have difficulty with motor planning for speech. Some children have hypernasality, while others do not. Some older children and adolescents develop stuttering problems, while others do not. Although many children have problems in speech intelligibility, the factors contributing to the difficulties in being understood vary from child to child. Some children speak in single words, whereas other children have long conversations.
The most common risk factors that we see in infants and toddlers with Down syndrome that directly influence speech and language development are low muscle tone in the oral motor area, including the lips, tongue, and jaw (Kumin and Bahr, 1999), relative macroglossia (Desai, 1997), and otitis media with effusion (Roizen et al., 1992) resulting in fluctuating hearing loss. Because there is no one communication profile, there is no one treatment plan. Treatment should be individually designed to meet all of the communication needs of the child.
6. Most children with Down syndrome have more advanced receptive language skills than expressive language skills. Expressive language and speech problems lead many professionals to underestimate the intelligence and capabilities of children and adolescents with Down syndrome.
Children with Down syndrome have more difficulty with speech and language development than they experience in other areas of early development (Miller, 1988). Speech and expressive language are more involved than receptive language skills (Miller et al., 1999). At all ages, children with Down syndrome understand more than they can say. They learn through the visual channel more easily than through the auditory channel (Buckley, 1996), so reading will often be easier than listening. Reading instructions may be easier than following oral instructions in class.
When we compare an individual child's skills across linguistic areas, namely, phonology, semantics, morphosyntax, and pragmatics, it is rare for the child to be functioning at the same level in all four linguistic areas. Typically, the child with Down syndrome is more advanced in vocabulary (semantics) (Miller, 1988, Kumin et al., 1998) and social interactive language skills (pragmatics) and has more difficulty with phonology (the sound system) and morphosyntax (grammar, structure, word endings, etc.) (Fowler, 1995). Reading and writing (via word processors) may be easier for the child than speaking and may serve as pathways to improve overall language and communication skills (Buckley, 1996).
Expressive language and intelligibility problems lead professionals to underestimate intelligence and capabilities. When you ask a child a question, and he or she does not respond with a clearly framed, grammatically correct, well-articulated response, it is easy to assume that the child is not able. When children have open mouth posture, drooling, and low muscle tone in their lips, tongue, and cheeks, with subsequent difficulties in intelligibility, it is easy to underestimate their abilities. The danger is that the child will not be provided with opportunities that will help him reach his potential. Look beyond the speech abilities. Parents can request that their child be given a speech and language battery and a nonverbal intelligence test to separate out expressive language abilities from intelligence level.
7. Legislation and the educational model form the major basis for service delivery. An educational model addresses only part of the communication difficulties.
Legislation beginning with Public Law 94-142 and continuing through the current Public Law 105-17, IDEA 97, has resulted in funding sources for special education and speech-language pathology services through the local educational agency (LEA). Under the legislation, speech-language pathology services are provided, at no cost to the family, but are based on educational communication needs and are heavily focused on language, rather than speech (Kumin, 1998, 2001). Feeding therapy, oral motor therapy, and speech intelligibility treatment are often not viewed as needed to help the child make progress in the regular education curriculum. Comprehensive Down syndrome centers, university clinics, hospitals, and private practitioners can provide speech-language pathology services. But, for many families, cost is a major factor and the educational settings, because they can provide free services, are the largest speech language pathology service providers for children from birth to 21 years of age.
8. A remediation treatment model is not effective for children and adolescents with Down syndrome. A proactive treatment plan is needed.
The IEP is based on a remediation model. For each area in which the child will receive services, the IEP must document the child's present level of performance, annual goals, and short-term objectives, including how progress will be measured and benchmarks. Generally, present performance and progress are measured by test results, and test scores must indicate delays and deficits to qualify for services. When a child makes progress and reaches the objectives stated in the IEP plan, new objectives may be developed or the child may no longer be eligible for services. For children with Down syndrome, there are a multitude of risk factors for difficulties in the areas of speech and language. A prevention model will enable us to treat the child proactively, before the difficulties, for example, low muscle tone, are evidenced in speech. A prevention model is used medically to treat recurrent ear infections with fluid buildup, through the use of tubes or a prophylactic antibiotic regimen. In physical therapy, treatment starts early to help children progress to walking. But in speech-language pathology services based in schools, families are still being told to come back when their child is talking or to come back at some specific time, for example, age 3 or 5 years. We need to be proactive. We need to develop databases so that we know what is typical for children with Down syndrome. We also need to develop speech and language treatment guidelines for children with Down syndrome so that we can better target when to evaluate and how to most effectively treat their speech and language problems.
A comprehensive speech treatment plan should consider all of the factors that are affecting speech output. If the underlying problem is muscle tone, strength, and coordination, an exercise program should be included in the treatment plan. Exercises need to be done regularly to make a difference; therefore, a home treatment program in which oral motor exercises can be done on a daily basis is essential.
Sometimes children have difficulty with motor planning. This is known as developmental apraxia of speech. In these children, we will see difficulty in saying long words, sound reversals and leaving out syllables, more difficulty as the phrase or sentence gets longer, and inconsistency in production. One time they can say the sound, word, or sentence easily, and at other times, they struggle and grope for the sounds and just cannot say the same word, sentence, or phrase (Kumin and Adams, 2000). The treatment programs for apraxia focus on gradually increasing the length of the sound sequences. The child may start with vowels, progress to consonant-vowel sequences such as /ma/ and then go on to longer and more complex words. Frequent practice is part of an apraxia program. We don't know the incidence of developmental apraxia of speech in children with Down syndrome, but we do know that it affects speech intelligibility in some children with Down syndrome. When a child has a speech evaluation, the speech language pathologist should test for developmental apraxia of speech.
A comprehensive speech intelligibility evaluation can determine the need for speech treatment in many areas including:
articulation: how the child produces the sounds of speech phonological processes: sound patterns such as leaving off final sounds loudness: is the speech too loud, too soft or inappropriate?
resonance: is there excessive nasality because of palate muscle weakness or does the speech sound "stuffed like a cold" because of allergies or swollen tonsils and adenoids? rate: is the speech too fast, too slow, or inconsistent?
prosody: the rhythm of language. Does the child's speech sound animated with varied pitch and melody or is it monotone?
fluency: is the speech dysfluent? Is there stuttering and struggle?
Language and auditory factors also impact on the intelligibility of speech and may need to be targeted in treatment. Pragmatics is the study of language in use—real everyday communication. Often, if the child does not look at the speaker, this will affect the communication interaction. The prag matic and language skills that affect speech can be targeted in therapy. If the child is having difficulty with hearing speech, he may need an assistive listening device or a system that will amplify speech in the classroom. If people are having great difficulty understanding the child's speech, an augmentative communication system should be considered. Table 30.1 presents a checklist for developing a comprehensive speech treatment plan for children and adolescents with Down syndrome.
TABLE 30.1. Comprehensive Speech Treatment Program Plan for Children and Adolescents with Down Syndrome
A comprehensive treatment plan for an individual with Down syndrome may include any of the following as needed.
I. Exercise Programs
A. Oral motor muscle strengthening
B. Intervention for feeding problems
C. Intervention for tongue thrust/swallowing problems
II. Muscle Programming and Coordination Level
A. Intervention for developmental apraxia of speech
B. Intervention for oral apraxia
III. Speech Production Level
A. Articulation therapy
B. Treatment for phonological processes
C. Treatment for volume and loudness
D. Voice therapy
E. Resonance therapy
F. Rate control
G. Prosody treatment
H. Fluency therapy
IV. Pragmatic/Language Level
A. Treatment for nonverbal factors
B. Language skills that impact on intelligibility
C. Communication interactions in school/workplace
V. Assistive Technology Needs
A. Augmentative communication for classroom use
B. Augmentative communication for general use
C. Assistive listening devices
VI. Supports and Modifications Needed
VII. Referrals Needed
Psychologist Otolaryngologist Feeding Specialist Other
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