CUTTING THROUGH THE PSYCHOBABBLE:
DIAGNOSING AUTISM AND PDD-NOS PER THE DSM-IV IN LAYMAN’S TERMS
This document was born out of confusion experienced by so many parents about the diagnosis of autism or PDD-NOS. When comparing notes, we discovered that even our physicians did not agree. One woman told us her psychologist said that a diagnosis of PDD-NOS was reserved for children on the spectrum who are curable; others have been told that PDD-NOS is not even on the spectrum! We found that many clinicians seem to take a milder diagnosis and simply label it PDD-NOS.
This document takes the DSM-IV criteria for autism and PDD-NOS and translates it into English. It also attempts to clarify how a diagnosis of PDD-NOS is made. Please note that not all symptoms may not be present every day. Look at typically developing children of same age (peers) and use them as markers. This document is certainly not a diagnostic tool; it was created by and for parents.
To make this easy, (1), (2), (3) are categories, the letters (a), (b); etc that appear under each category will be referred to as symptoms.
DSM-IV Criteria for Autism
299.00 Autism
A. To be diagnosed with autism, you must have:
o At least SIX (6) of the below symptoms from categories (1), (2) and (3).
o You must have TWO (2) symptoms from (1- Social)
o And ONE (1) each from (2- Communication) and (3 Behaviors and Interests)
o The other one (or more) can be from any of the categories.
(1) SOCIAL
Social interaction is impaired, must have TWO from below list of symptoms:
(a) Problems with nonverbal behaviors such as eye contact, facial expression, body postures and gestures used in social situations
Examples:
o Eye contact – different from peers, may only meet eye-gaze of certain people or have total lack of eye contact – or anything in between
o Facial expression – may seem inappropriate to what the situation warrants, may have blank gaze, may not greet you with a smile, may have same expression on face most of time – or any combination thereof
o Body Postures – may hold arms close to sides, may try to avoid certain types of social contact, may appear unapproachable due to posture
o Gestures – may not respond to a hand held out to shake hands, arms out for hugs etc. May not understand social ‘cues’ we take for granted
(b) Does not make friends like other children in same age group.
Examples:
o While peers are learning to play together, the child is off by themselves
o Children learn to play by imitation, this child is not imitating the other kids
o Seems to have no interesting in socializing with peers
o May approach peers, but not to play…watch and see if the child is approaching in the same way peers approach each other
(c) Does not share objects with others for enjoyment.
Examples:
o Does not bring you something that interests them to share with you
o Does not point in the distance (i.e. to an airplane) to share with you something that interests them
o Look at peers and how they show things they are proud of (ie. Artwork) and see if child does the same thing
(d) Lack of social (Consisting in dealings or communications with others) and emotional (characterized by emotion) ‘give and take’; Does not respond to social or emotional cues
Examples:
o Does not seem to seek out or enjoy the company of others; may be aloof
o Does not smile back when you smile at him/her (without prompting)
o Does not reply “hello” to your greeting (without prompting)
o Does not seem especially happy to see you when you return home after work
o Does not seem to pick up on the ‘vibes’ of others
o Does not become grateful or excited in anticipation of outing or gift (in the same way a peer would)
o Does not attempt to comfort someone who is crying
(2) COMMUNICATION
Communication difficulties (Must have at least ONE of the below symptoms):
(a) Delay in, or total lack of, speech, but does not use gestures to communicate (Delay = not at same level as peers)
Example:
o Does not point to what s/he wants
o Does not ‘mime’ his/her needs (ie. Mime ‘eating’ if hungry)
o Does not shake or nod head for ‘no’ or ‘yes’
o Does not shrug shoulders to show s/he ‘doesn’t know’
(b) If child can speak, cannot start or hold up their end of a conversation (appropriately)
(c) May echo phrases, words, songs, parts of movies etc.
(d) Does not engage in imaginative play (as peers)
Examples:
o Will not pretend to drink from toy teacup
o Will not pretend to brush doll’s hair
o Will not use items for make belief (i.e. a stick for a cane or a magic wand)
o Will not make dolls ‘talk’ to each other
o Will not take a toy airplane and ‘fly’ it around the room while saying ‘zoom’
(3) BEHAVIORS AND INTERESTS
Repetitive behaviors, interests, and activities – child may get angry if this ‘pattern’ is interrupted. Must have at least ONE of the below symptoms:
(a) Child is so focused on an interest that to remove the interest will result in a meltdown
(b) Routines or rituals must be followed, they appear to have no function
Examples:
o Lining up cars is not necessarily playing ‘garage’; if you attempt to join in, the child will tantrum, walk away, push you aside, etc.
o Family members must always sit in same seats; failure may result in tantrum
o Must take same route home; one deviation may cause meltdown
o Must wear red shirt on Tuesday or risk a tantrum etc
o If you go to the video store, you must rent “The Brave Little Toaster” every time or risk a tantrum
(c) Repetitive behavior such as hand flapping, rocking, ear flicking, chewing on clothing, vocal ‘stims’, spinning etc. Establish if this is self-stimulatory by doing a functional assessment like the Durand Motivational Assessment Scale: http://www.monacoassociates.com/mas/MAS.html
(d) Preoccupied with parts of objects
Examples:
o Spins wheels of toy cars
o Focus on one part of a toy (i.e. doll’s eyes)
o Cover parts of book so that s/he can look at one piece
B. Child is either delayed (not same ‘age’ as peers) or acts differently from peers in ONE of the following (must be noticeable before age three): (1) social interaction, (2) language as used in social communication, or (3) pretend play.
C. Child does NOT have Rett’s or Childhood Disintegrative Disorder
299.80 Pervasive Developmental Disorder, Not Otherwise Specified
PDD-NOS is a diagnosis by exclusion. If a child presents with some symptoms from (1), (2), and/or (3), and their pattern of symptoms is not better described by one of the other PDD diagnoses (i.e., Autistic Disorder, Asperger’s Disorder, Rett’s Disorder, or Childhood Disintegrative disorder) then a professional might decide that a diagnoses of PDD-NOS is warranted.
When comparing PDD-NOS to Autism, PDD-NOS is used when a child has symptoms of autism as above, but not in the configuration needed for an autism diagnosis. Social component is where the most impairment is seen. Children who fail to meet criteria for autism and don’t have adequate social impairment typically have a developmental disability, and their symptoms can by accounted for by that.
Looking at above description:
“299.00 Autism - To be diagnosed with autism, you must have at least 6 of the below symptoms from (1), (2) and (3). You must have two symptoms from (1) and one each from (2) and (3) – the other two can be any of the other symptoms.”
PDD-NOS is most often diagnosed when children have significant social impairments, but don’t have the symptoms in area (3). A child with PDD-NOS may have the same (or more, or less) number of symptoms as a child with autism, but instead of having 2 from #1 and one each from #2, the child might have 1 symptom from #1 and one from #2, plus two from #3.
A diagnosis of PDD-NOS is not necessarily a less-severe one than a diagnosis of autism, but can be sometimes.
Severity of any spectrum disorder can be determined by the amount and severity of symptoms listed above.
It is imperative to obtain a thorough psychological assessment performed. If you do not understand during any part of the assessment, ask questions. You should feel comfortable to go home and ‘digest’ the information given to you, form any questions or concerns and contact the diagnosing clinician to get your answers.
Many thanks go out to R.C. for her help with this project!
A notice to our readers...
This document was put together with input from parents, not physicians. It is not to be used as a diagnostic tool, nor is it to be considered professional advice.
This document references web sites that may be of interest to the reader. BBB Autism Support Network makes no presentation or warranty with respect to the accuracy or completeness of the information contained on any of these web sites, and specifically disclaims any liability for any information contained on, or omissions from, them. Reference to these web sites herein shall not be construed to be an endorsement of them or of the information contained thereon, by BBB Autism Support Network.
(c) BBB Autism – July 2002
This document is the intellectual property of BBB Autism Support Network.
Permission to reproduce and hand out is granted, provided the document is displayed in its entirety. Other permissions may be requested by email: liz@deaknet.com. The purpose of this copyright is to protect your right to make free copies of this paper for your friends and colleagues, to prevent publishers from using it for commercial advantage, and to prevent ill-meaning people from altering the meaning of the document by changing or removing a few paragraphs.
۱۳۸۷ مرداد ۱۰, پنجشنبه
Comprehensive Speech and
Language Treatment for
Infants, Toddlers, and Children
with Down Syndrome
by Libby Kumin
Libby Kumin is a Professor and Department Chair of the Speech-Language Pathology Department at Loyola College in Baltimore.
This text is from the book Down Syndrome: A Promising Future, Together, Edited by Terry J. Hassold and David Patterson. This material is used with permission of Wiley-Liss, Inc., a subsidiary of John Wiley & Sons, Inc. Copyright 1998 by Wiley-Liss, Inc. This article by Libby Kumin is just one chapter of this comprehensive text on Down syndrome.
This chapter discusses a comprehensive approach to speech and language treatment from infancy through elementary school, which considers the communication strengths and challenges for children with Down syndrome, as well as the specific needs of the individual child with Down syndrome.
Speech and language are complex and present many challenges to the child with Down syndrome that need to be addressed through a comprehensive approach to speech and language treatment. There have been major historical, legislative, and financial influences on speech and language services and service delivery for children with Down syndrome; these are summarized below.
LEGISLATIVE BACKGROUND
The Education for All Handicapped Children Act (Public Law 94-142) was passed in 1975 and resulted in special education services in separate classrooms as the model for helping children with disabilities. The Individualized Education Plan (IEP) became the blueprint for each child's educational program for the school year. The law has been amended and renewed to the present day. The most recent legislation is the Individuals with Disabilities Education Act Amendments of 1997 (IDEA 97).
The important ramifications of IDEA for communication in school-age children are that speech-language pathology is a related service and is based on a remediation model. Related services are developmental, corrective, and other supportive services, as may be required to assist a child with a disability to benefit from special education, and includes the early identification and assessment of disabling conditions in children. A remediation model means that the child receives services only when there is a documented problem based on test results, in order to address that problem. With inclusion becoming more common and the regular education initiative, the child's needs for speech-language pathology services may be greater, and the goals may be higher.
Public Law 99-457 provided funding to extend services to children ages 3 to 5 years using the IEP as the child's service plan, and provided for early intervention services to children ages birth to 2 years who are experiencing developmental delays or who have a diagnosed condition that will place them at risk for developmental delay, using the Individualized Family Service Plan (IFSP) as the family's service plan. Children with Down syndrome would qualify for evaluation for services from the time of diagnosis, based on the guidelines in PL 99-457. Important ramifications of PL99-457 for speech and language treatment are that speech-language pathology services are based on a prevention model and that the family is included as central to the treatment process. When the child is 3 years of age, the educational plan changes from the IFSP to the IEP, and this represents a shift from a prevention model to a remediation model, and a shift in service delivery.
IDEA 97 has continued the funding for early intervention services for children under age 3, which was first mandated under PL 99-457. The sections related to early intervention are under Part C in IDEA 97. Whereas speech-language pathology is defined as a related service for children age 3 and older, it is defined as an early intervention service for infants and toddlers younger than 3 years. Early intervention services "are designed to meet the developmental needs of an infant or toddler with a disability in any one or more of the following areas: physical development, cognitive development, communication development, social or emotional development, or adaptive development" (Section 632(C)].
Under IDEA 97, it appears that children under age 3 with Down syndrome would be eligible for early speech-language evaluation and treatment services, audiological evaluations including hearing testing, feeding therapy, assistive communication devices, and transportation and related costs.
IDEA 97 considers several issues that have a direct impact on where services should be delivered. Part A deals with elementary through secondary school. For elementary-school-age children through high-school age, services are most likely to be delivered on site within the school. According to the statutes of IDEA 97, services should be provided in the natural environment, and the interpretation appears to be that "the natural environment" means within the classroom. There is a recognition within the legislation that inclusion within regular classrooms is increasing, and that classroom teachers in regular education settings and specialists (such as speech-language pathologists) in special education roles are working together more frequently. For example, the legislation mandates that the regular education teacher in a child's classroom be part of the IEP team for that child and provides funding for regular educators, classroom assistants, and special education and related services personnel to receive training regarding children with disabilities.
FINANCIAL BACKGROUND
Funding issues often drive service delivery in schools and community settings. Most available funding is through health insurance or through federal and state legislation that provides funding for educational budgets. Many health insurance plans do not fund long-term speech and language treatment for children with developmental disabilities. School systems are mandated to provide services based on specific criteria that they have developed to ensure compliance with federal funding. It is essential to become familiar with the entrance and exit criteria, eligibility for services through the local schools, and the criteria and guidelines through the health insurance agency.
GENERAL CONSIDERATIONS FOR SPEECH AND LANGUAGE TREATMENT
Although every child is a unique individual and therapy must be designed for the individual child, there are some general considerations that form the foundation for a speech and language treatment program.
Communication skills are important and contribute to inclusion and integration. Communication includes not only speech, but also facial expressions, smiles, gestures, pointing, high five signs, and alternative systems such as sign language and computer-based systems. Children and adults are more likely to interact when they can understand and be understood. At home, in school, and in the community, a functional understandable communication system facilitates relationships.
Although there are common speech and language problems, there is no single pattern of speech and language common to all children with Down syndrome. There are, however, speech and language challenges for most children with Down syndrome. Many children with Down syndrome have more difficulty with expressive language than they do with understanding speech and language, that is, receptive language skills are usually more advanced than expressive language skills. Certain linguistic areas, such as vocabulary, are usually easier for children with Down syndrome than other areas, such as grammar. Sequencing of sounds and of words may be difficult for many children. Many children have difficulties with intelligibility of speech and articulation. Some children have fluency problems. Some children use short phrases, while others have long conversations. All of the speech and language problems that children with Down syndrome demonstrate are faced by other children as well. There are no speech and language problems unique to children with Down syndrome. This means that there is a great deal of knowledge and experience that can be applied to helping a child with Down syndrome with his/her specific areas of challenge.
The speech and language treatment program should be individually designed based on a careful evaluation of each child's communications patterns and needs. It is especially important to include the family as part of the treatment team. The child, family (including siblings and extended family), teacher, friends, and community members can all contribute to the child's communication success. The speech-language pathologist can guide, inform, and help facilitate and enhance the process of learning to communicate effectively. But language is part of daily living and must be practiced and reinforced as part of daily life.
During the school years, speech and language treatment must relate to the child's educational setting and the communication needs of the classroom and the curriculum. Speech and language treatment should also consider the child's needs in relation to community activities such as religious groups and scouting. Communication goes on outside of therapy sessions, as well as inside the sessions. Inclusion and community involvement promote interactive communication and provide models and communication partners.
On the path from infancy to adulthood, the child may need speech-language treatment at various points, and the family may need ongoing information, resources, and guidance to work with the child at home. At different developmental stages, the child may need periods of treatment and/or a home program.
What is a comprehensive speech and language treatment program? It is an individually designed program that meets all of the communication needs for a specific child. Let's examine some of the areas that could be targeted in a comprehensive program at different speech and language learning stages.
During the birth to one-word period, the most important intervention occurs at home. Families need to be the focus of the treatment program. In the program at Loyola College, families observe the therapy sessions 100% of the time, and discuss all of the activities with a clinical supervisor. For each session, they are provided with home activities so that speech and language experiences will continue in the home environment (Kumin et al., 1991). For infants, one focus of the treatment program will be sensory stimulation: providing activities and experiences to help the infant develop auditory, visual, and tactile skills, including sensory exploration and sensory feedback and memory. The child will experience what a bell sounds like, or the different sensations while touching velvet or sandpaper. It is essential to monitor hearing status for every infant with Down syndrome, since they are at high risk for otitis media with effusion (Roberts and Medley, 1995). The most recent literature (Gravel and Wallace, 1995) is finding strong relationships between OME (otitis media with effusion, or fluid in the middle ear without signs or symptoms of ear infection), language development, and academic achievement in typically developing children. Some of the delays in language that we see in children with Down syndrome may be related to the presence of OME. The pediatrician or otolaryngologist and the audiologist will be able to monitor hearing status and treat fluid accumulation in the ear.
Speech is an overlaid function in the human body. Feeding and respiration involve many of the structures and muscles used in speech. Therefore, feeding therapy, sensory integration therapy, and other complementary therapies may have a poistive impact on speech function.
Many infants and toddlers whom we see are very sensitive to touch. They do not want to be touched, don't want their teeth brushed, or do not like certain textures of foods or perhaps mixed food textures. The term "tactilely defensive" is sometimes used. We have found that by using oral massage, direct muscle stimulation, and an oral normalization program (using the NUK massager), infants and toddlers are able increasingly to tolerate touch in the lip and tongue area. The massage program begins with the arms and legs and gradually moves toward the face and intra oral area. A detailed description of the program is included in an article by Kumin and Chapman (1996). We find that babbling and sound making increase after the oral normalization activity. Once the child can tolerate touch and can freely move the articulators, an oral motor skills program is introduced. This might include blowing whistles, blowing bubbles, making funny faces, and sound imitation activities. Generally, the clinician will imitate the child rather than providing a model to imitate.
The basis for communication is social interaction, and certain conversational skills such as turn taking can be developed at a very young age through play (MacDonald, 1989). Peek-a-boo games and handing a toy or musical instrument back and forth are ways of developing turn taking. There are many pre-language skills that can be addressed in treatment before the child is able to talk, so therapy should begin early, before the child speaks the first word (Kumin et al., 1991).
Infants with Down syndrome, by 8 months to 1 year, have a great deal to communicate with the people around them. If they do not have some way of communicating their messages, young children become frustrated by their inability to be understood. A transitional communication system is very important until the child is neurophysiologically able to speak (Gibbs and Carswell, 1991). Although speech is the most difficult communication system for children with Down syndrome, more than 95% of children with Down syndrome will use speech as their primary communication system. Total communication (use of sign language plus speech), communication boards or computer communication systems may be used as communication systems until the child is ready to transition to speech. (Kumin, 1994; Kumin et al., 1991; Meyers, 1994). Research has shown that children with Down syndrome will discontinue using the sign when they can say the word so that it is understandable to those around them.
ONE-WORD TO THREE-WORD PERIOD
Once the young child begins to use single words (in sign or speech), treatment will target horizontal as well as vertical growth in language. Treatment may address single word vocabulary (semantic skills) in many thematic and whole language activities, such as cooking, crafts, play, and trips (Kumin et al., 1996). So there may be a great deal of horizontal vocabulary growth. Treatment will also target increasing the length of phrases, the combinations of words that the child can use; this is known as increasing the mean length of utterance (Manolson, 1992). There are many meaningful relations that the child learns in two word phrases (e.g., agent-action, possession, negation), and then further expands into three word phrases.
We have found that the pacing board provides a visual and motoric cuing system that capitalizes on the strengths of children with Down syndrome, and helps children to expand the length of their utterances (Kumin et al., 1995). The pacing board is usually a rectangular piece of tag board with separate circles that represent the number of words in the desired utterance (e.g., "throw ball" would have two circles). The pacing system concept can also be implemented by putting a dot under each word in a book.
Pragmatics skills such as making requests and greetings, as well as conversational skills would be taught during this period.
Vocabulary, pragmatics, and other language activities would generally be approached through play activities. Play would also be used to increase auditory attending and on task attention skills (Schwartz and Miller, 1996). Language skills would be supported through the use of appropriate computer activities, such as First Words or First Verbs by Laureate or Living Books or Bailey's Book House by Edmark (Kumin et al., 1996).
The basis for developing speech during this period is sensory integration (translating auditory to verbal messages) and oral motor abilities. Most children with Down syndrome understand messages, and are able to produce language (through signs) well before they are able to use speech. So sensory integration and oral motor skills therapy are used to strengthen the readiness for speech during this period.
PRESCHOOL THROUGH KINDERGARTEN
The young child is usually far more advanced in receptive language skills than in expressive language skills, but both areas are targeted in therapy. During this stage, receptive language work may focus on auditory memory and on following directions, which are important skills for the early school years. It will also focus on concept development such as colors, shapes, directions (top and bottom), prepositions through practice, and play experiences. Expressive language therapy will include semantics, expanding the mean length of utterance, and will begin to include grammatical structures (word order) and word endings (such as plural or possessive). Pragmatics skills such as asking for help, appropriate use of greetings, requests for information or answering requests, as well as role playing different activities of daily living may be addressed. Again, play activities such as dressing and undressing a doll, crafts activities such as making a card, or cooking activities such as making cupcakes may be used. The same activity may target semantic, syntactic, and pragmatics skills, for example, how many cupcakes should we make, what color frosting should we use, and following the directions to make the cupcakes. Many children with Down syndrome learn to read effectively, and this can help in learning language concepts (Buckley, 1993).
During this stage, sounds and specific sound production would be targeted; articulation therapy could begin. But the therapy would also include oral motor exercises and activities on an ongoing basis to strengthen the muscles and improve the coordination of muscles. Intelligibility is the goal of the speech component of therapy.
ELEMENTARY SCHOOL YEARS
During the years in elementary school, there is a great deal of growth in language and in speech. Speech-language pathology may involve collaboration with the teacher and may be based in the classroom. Often, the curriculum becomes the material used for therapy, both proactively, to prepare the child for the subject and reactively, to help if problems occur. This makes sense, because school is the child's workplace, and success in school greatly affects self esteem.
Receptive language work becomes more detailed and advanced (Miller, 1988), including following directions with multiple parts, similar to the instructions given in school. Receptive language might include comprehension exercises, reading and experiential activities, and specific comprehension of vocabulary, morphology (word parts such as plurals), and syntax (grammatical rules).
Expressive language therapy would also focus on more advanced topics in vocabulary, similarities and differences, morphology, and syntax. Expressive language work might also include work on increasing the length of speech utterances. The pacing board, rehearsal, scaffolds, and scripts have been found helpful in facilitating longer speech utterances.
Pragmatics becomes very important during this stage; using communication skills in real life in school, at home, and in the community is the goal. Therapy might address social interactive skills with teachers and peers, conversational skills (discourse), how to make requests, how to ask for help when the child doesn't understand material in school, how to clarify statements that people do not understand, and so forth. As the child matures, the communicative activities of daily living will change. Treatment and/or home practice must keep pace with the child's communication needs at every stage.
Speech skills with emphasis on articulation and intelligibility would be targeted in therapy during this period (Swift and Rosin, 1990). An individual analysis of oral motor strengths and challenges is important to determine what specific skills need to be addressed, for example, does the child have low muscle tone or muscle weakness in the oral facial area? difficulty with motor coordination? difficulty with motor planning? Are other speech areas such as voice and fluency affecting intelligibility? Each of these areas can be worked on if they are affecting communication ability for an individual child.
There are many different approaches to speech and language treatment that can be used, and some may be used simultaneously as part of a comprehensive individually designed program.
Therapy may be programmed based on linguistic skills, that is, there may be individual goals for semantics, morphology and syntax, pragmatics, and phonology. Therapy may also focus on different channels. So the goals for therapy may target auditory skills or speech and oral motor skills, or encoding a language message or producing a language message. One channel, such as reading, may be used to assist another channel such as expressive language or written language. Therapy may also be approached through the needs of the curriculum. In this approach, vocabulary would be taught based on the vocabulary that the child needs for success in science or social studies. The therapy may be proactive, teaching in advance the language skills that the child will need for the official curriculum, formal and informal classroom interactions, following directions in class and learning the rules and routines, and skills for interacting with peers. Curriculum-based therapy may also be reactive, targeting areas of difficulty as they occur and providing assistance with study skills and strategies to meet classroom expectations or to overcome difficulties when they occur. The speech-language pathologist can also suggest adaptive and compensatory strategies such as seating in front of the room, using a peer tutor, and visual cue sheets.
Whole language is a current approach in which reading, understanding, writing, and expressive language are taught as a whole. This often is based on children's literature and thematic activities accompanying the books; for example, a book about weather might also involve weather reporting, building a weather station, or drawing pictures or taking photographs of different weather conditions. Whole language does not teach in discrete linguistic units, such as focusing on plurals or verb tenses. Rather, it teaches in larger themes using meaningful multisensory experiences to teach concepts.
Communication in context is a pragmatics approach often used in classroom-based collaborative programs. It considers the entire communication situation including the participants (child, teacher, other children, school stall), the various settings in which the child communicates, and the differences between settings. This approach is very real-world oriented. Therapy might work on scripts and may provide assistance through scaffolds (e.g., fill-in sentences) to help the child learn to communicate more effectively with specific people or in specific settings based on a variety of objectives.
Speech and language treatment is complex and can include different approaches, a variety of goals, and many different activities. The goal is to find treatment approaches and methods which will enable each child to reach his communication potential.
RESOURCES
Communicating Together
P0 Box 6395
Columbia, MD 21045-6395
Telephone: 888-816-8501, or 410-995-0722
FAX: 410-997-8735
Communicating Together provides workshops for parents and professionals and a subscription newsletter devoted to speech and language issues in infants, toddlers, children, and adolescents with Down syndrome. Workshops are held in different parts of the country throughout the year. Local workshops can be arranged. The newsletter is published six times per year. Written and edited by Dr. Libby Kumin, each issue includes a major topic article (e.g., IEPs/IFSPs, oral motor skills, intelligibility), questions and answers, home activities and reviews of current research articles. Call Dr. Martin Lazar for more information.
REFERENCES
Buckley S (1993): Language development in children with Down's syndrome: Reasons for optimism. "Down's Syndrome: Research and Practice." 1:3-9.
Gibbs ED, Carswell L (1991): Using total communication with young children with Down syndrome: A literature review and case study. Early Childhood Devel 2:306-320.
Gravel J, Wallace 1(1995): Early otitis media, auditory abilities, and educational risk. Am J Speech-Language Pathol 4:89-94.
Kumin L (1994): "Communication Skills in Children with Down Syndrome: A Guide for Parents." Bethesda, MD: Woodbine House.
Kumin L, Chapman D (1996): Oral motor skills in children with Down syndrome. Communicating Together 13:1-4.
Kumin L, Councill C, Goodman M (1995): The pacing board: A technique to assist the transition from single word to multi-word utterances. Infant-Toddler Intervention 5:293-303.
Kumin L, Goodman M, Councill C (1996): Comprehensive communication assessment and intervention for school-aged children with Down syndrome. Down Syndrome Quart 1:1-8.
Kumin L, Goodman M, Councill C (1991): Comprehensive communication intervention for infants and toddlers with Down syndrome. Infant-Toddler Intervention 1:275-296.
MacDonald ID (1989): "Becoming Partners with Children - From Play to Conversation." San Antonio: Special Press.
Manolson A (1992): "It Takes Two to Talk" (2nd ed.). Idylewild, CA: Imaginart.
Meyers L (1994): Access and meaning: the keys to effective computer use by children with language disabilities. J Special Educ Technol 12:257-275.
Miller IF (1988): Facilitating advanced speech and language development. In C Tingey (ed.): "Down Syndrome: A Resource Handbook." Boston, MA: College-Hill Press, pp.119-l33.
Roberts JE, Medley L (1995): Otitis media and speech-language sequelae in young children: Current issues in management. Am J Speech-Language Pathol 4:15-24.
Schwartz S. Miller 1(1996): "The New Language of Toys: Teaching Communication Skills to Special Needs Children?" Bethesda, MD: Woodbine House.
Swift E, Rosin P (1990): "A remediation sequence to improve speech intelligibility for students with Down syndrome." Language, Speech Hearing Services Schools 21:140—146.
Home Page | List of Past Abstracts | Contact Dr. Leshin
Language Treatment for
Infants, Toddlers, and Children
with Down Syndrome
by Libby Kumin
Libby Kumin is a Professor and Department Chair of the Speech-Language Pathology Department at Loyola College in Baltimore.
This text is from the book Down Syndrome: A Promising Future, Together, Edited by Terry J. Hassold and David Patterson. This material is used with permission of Wiley-Liss, Inc., a subsidiary of John Wiley & Sons, Inc. Copyright 1998 by Wiley-Liss, Inc. This article by Libby Kumin is just one chapter of this comprehensive text on Down syndrome.
This chapter discusses a comprehensive approach to speech and language treatment from infancy through elementary school, which considers the communication strengths and challenges for children with Down syndrome, as well as the specific needs of the individual child with Down syndrome.
Speech and language are complex and present many challenges to the child with Down syndrome that need to be addressed through a comprehensive approach to speech and language treatment. There have been major historical, legislative, and financial influences on speech and language services and service delivery for children with Down syndrome; these are summarized below.
LEGISLATIVE BACKGROUND
The Education for All Handicapped Children Act (Public Law 94-142) was passed in 1975 and resulted in special education services in separate classrooms as the model for helping children with disabilities. The Individualized Education Plan (IEP) became the blueprint for each child's educational program for the school year. The law has been amended and renewed to the present day. The most recent legislation is the Individuals with Disabilities Education Act Amendments of 1997 (IDEA 97).
The important ramifications of IDEA for communication in school-age children are that speech-language pathology is a related service and is based on a remediation model. Related services are developmental, corrective, and other supportive services, as may be required to assist a child with a disability to benefit from special education, and includes the early identification and assessment of disabling conditions in children. A remediation model means that the child receives services only when there is a documented problem based on test results, in order to address that problem. With inclusion becoming more common and the regular education initiative, the child's needs for speech-language pathology services may be greater, and the goals may be higher.
Public Law 99-457 provided funding to extend services to children ages 3 to 5 years using the IEP as the child's service plan, and provided for early intervention services to children ages birth to 2 years who are experiencing developmental delays or who have a diagnosed condition that will place them at risk for developmental delay, using the Individualized Family Service Plan (IFSP) as the family's service plan. Children with Down syndrome would qualify for evaluation for services from the time of diagnosis, based on the guidelines in PL 99-457. Important ramifications of PL99-457 for speech and language treatment are that speech-language pathology services are based on a prevention model and that the family is included as central to the treatment process. When the child is 3 years of age, the educational plan changes from the IFSP to the IEP, and this represents a shift from a prevention model to a remediation model, and a shift in service delivery.
IDEA 97 has continued the funding for early intervention services for children under age 3, which was first mandated under PL 99-457. The sections related to early intervention are under Part C in IDEA 97. Whereas speech-language pathology is defined as a related service for children age 3 and older, it is defined as an early intervention service for infants and toddlers younger than 3 years. Early intervention services "are designed to meet the developmental needs of an infant or toddler with a disability in any one or more of the following areas: physical development, cognitive development, communication development, social or emotional development, or adaptive development" (Section 632(C)].
Under IDEA 97, it appears that children under age 3 with Down syndrome would be eligible for early speech-language evaluation and treatment services, audiological evaluations including hearing testing, feeding therapy, assistive communication devices, and transportation and related costs.
IDEA 97 considers several issues that have a direct impact on where services should be delivered. Part A deals with elementary through secondary school. For elementary-school-age children through high-school age, services are most likely to be delivered on site within the school. According to the statutes of IDEA 97, services should be provided in the natural environment, and the interpretation appears to be that "the natural environment" means within the classroom. There is a recognition within the legislation that inclusion within regular classrooms is increasing, and that classroom teachers in regular education settings and specialists (such as speech-language pathologists) in special education roles are working together more frequently. For example, the legislation mandates that the regular education teacher in a child's classroom be part of the IEP team for that child and provides funding for regular educators, classroom assistants, and special education and related services personnel to receive training regarding children with disabilities.
FINANCIAL BACKGROUND
Funding issues often drive service delivery in schools and community settings. Most available funding is through health insurance or through federal and state legislation that provides funding for educational budgets. Many health insurance plans do not fund long-term speech and language treatment for children with developmental disabilities. School systems are mandated to provide services based on specific criteria that they have developed to ensure compliance with federal funding. It is essential to become familiar with the entrance and exit criteria, eligibility for services through the local schools, and the criteria and guidelines through the health insurance agency.
GENERAL CONSIDERATIONS FOR SPEECH AND LANGUAGE TREATMENT
Although every child is a unique individual and therapy must be designed for the individual child, there are some general considerations that form the foundation for a speech and language treatment program.
Communication skills are important and contribute to inclusion and integration. Communication includes not only speech, but also facial expressions, smiles, gestures, pointing, high five signs, and alternative systems such as sign language and computer-based systems. Children and adults are more likely to interact when they can understand and be understood. At home, in school, and in the community, a functional understandable communication system facilitates relationships.
Although there are common speech and language problems, there is no single pattern of speech and language common to all children with Down syndrome. There are, however, speech and language challenges for most children with Down syndrome. Many children with Down syndrome have more difficulty with expressive language than they do with understanding speech and language, that is, receptive language skills are usually more advanced than expressive language skills. Certain linguistic areas, such as vocabulary, are usually easier for children with Down syndrome than other areas, such as grammar. Sequencing of sounds and of words may be difficult for many children. Many children have difficulties with intelligibility of speech and articulation. Some children have fluency problems. Some children use short phrases, while others have long conversations. All of the speech and language problems that children with Down syndrome demonstrate are faced by other children as well. There are no speech and language problems unique to children with Down syndrome. This means that there is a great deal of knowledge and experience that can be applied to helping a child with Down syndrome with his/her specific areas of challenge.
The speech and language treatment program should be individually designed based on a careful evaluation of each child's communications patterns and needs. It is especially important to include the family as part of the treatment team. The child, family (including siblings and extended family), teacher, friends, and community members can all contribute to the child's communication success. The speech-language pathologist can guide, inform, and help facilitate and enhance the process of learning to communicate effectively. But language is part of daily living and must be practiced and reinforced as part of daily life.
During the school years, speech and language treatment must relate to the child's educational setting and the communication needs of the classroom and the curriculum. Speech and language treatment should also consider the child's needs in relation to community activities such as religious groups and scouting. Communication goes on outside of therapy sessions, as well as inside the sessions. Inclusion and community involvement promote interactive communication and provide models and communication partners.
On the path from infancy to adulthood, the child may need speech-language treatment at various points, and the family may need ongoing information, resources, and guidance to work with the child at home. At different developmental stages, the child may need periods of treatment and/or a home program.
What is a comprehensive speech and language treatment program? It is an individually designed program that meets all of the communication needs for a specific child. Let's examine some of the areas that could be targeted in a comprehensive program at different speech and language learning stages.
During the birth to one-word period, the most important intervention occurs at home. Families need to be the focus of the treatment program. In the program at Loyola College, families observe the therapy sessions 100% of the time, and discuss all of the activities with a clinical supervisor. For each session, they are provided with home activities so that speech and language experiences will continue in the home environment (Kumin et al., 1991). For infants, one focus of the treatment program will be sensory stimulation: providing activities and experiences to help the infant develop auditory, visual, and tactile skills, including sensory exploration and sensory feedback and memory. The child will experience what a bell sounds like, or the different sensations while touching velvet or sandpaper. It is essential to monitor hearing status for every infant with Down syndrome, since they are at high risk for otitis media with effusion (Roberts and Medley, 1995). The most recent literature (Gravel and Wallace, 1995) is finding strong relationships between OME (otitis media with effusion, or fluid in the middle ear without signs or symptoms of ear infection), language development, and academic achievement in typically developing children. Some of the delays in language that we see in children with Down syndrome may be related to the presence of OME. The pediatrician or otolaryngologist and the audiologist will be able to monitor hearing status and treat fluid accumulation in the ear.
Speech is an overlaid function in the human body. Feeding and respiration involve many of the structures and muscles used in speech. Therefore, feeding therapy, sensory integration therapy, and other complementary therapies may have a poistive impact on speech function.
Many infants and toddlers whom we see are very sensitive to touch. They do not want to be touched, don't want their teeth brushed, or do not like certain textures of foods or perhaps mixed food textures. The term "tactilely defensive" is sometimes used. We have found that by using oral massage, direct muscle stimulation, and an oral normalization program (using the NUK massager), infants and toddlers are able increasingly to tolerate touch in the lip and tongue area. The massage program begins with the arms and legs and gradually moves toward the face and intra oral area. A detailed description of the program is included in an article by Kumin and Chapman (1996). We find that babbling and sound making increase after the oral normalization activity. Once the child can tolerate touch and can freely move the articulators, an oral motor skills program is introduced. This might include blowing whistles, blowing bubbles, making funny faces, and sound imitation activities. Generally, the clinician will imitate the child rather than providing a model to imitate.
The basis for communication is social interaction, and certain conversational skills such as turn taking can be developed at a very young age through play (MacDonald, 1989). Peek-a-boo games and handing a toy or musical instrument back and forth are ways of developing turn taking. There are many pre-language skills that can be addressed in treatment before the child is able to talk, so therapy should begin early, before the child speaks the first word (Kumin et al., 1991).
Infants with Down syndrome, by 8 months to 1 year, have a great deal to communicate with the people around them. If they do not have some way of communicating their messages, young children become frustrated by their inability to be understood. A transitional communication system is very important until the child is neurophysiologically able to speak (Gibbs and Carswell, 1991). Although speech is the most difficult communication system for children with Down syndrome, more than 95% of children with Down syndrome will use speech as their primary communication system. Total communication (use of sign language plus speech), communication boards or computer communication systems may be used as communication systems until the child is ready to transition to speech. (Kumin, 1994; Kumin et al., 1991; Meyers, 1994). Research has shown that children with Down syndrome will discontinue using the sign when they can say the word so that it is understandable to those around them.
ONE-WORD TO THREE-WORD PERIOD
Once the young child begins to use single words (in sign or speech), treatment will target horizontal as well as vertical growth in language. Treatment may address single word vocabulary (semantic skills) in many thematic and whole language activities, such as cooking, crafts, play, and trips (Kumin et al., 1996). So there may be a great deal of horizontal vocabulary growth. Treatment will also target increasing the length of phrases, the combinations of words that the child can use; this is known as increasing the mean length of utterance (Manolson, 1992). There are many meaningful relations that the child learns in two word phrases (e.g., agent-action, possession, negation), and then further expands into three word phrases.
We have found that the pacing board provides a visual and motoric cuing system that capitalizes on the strengths of children with Down syndrome, and helps children to expand the length of their utterances (Kumin et al., 1995). The pacing board is usually a rectangular piece of tag board with separate circles that represent the number of words in the desired utterance (e.g., "throw ball" would have two circles). The pacing system concept can also be implemented by putting a dot under each word in a book.
Pragmatics skills such as making requests and greetings, as well as conversational skills would be taught during this period.
Vocabulary, pragmatics, and other language activities would generally be approached through play activities. Play would also be used to increase auditory attending and on task attention skills (Schwartz and Miller, 1996). Language skills would be supported through the use of appropriate computer activities, such as First Words or First Verbs by Laureate or Living Books or Bailey's Book House by Edmark (Kumin et al., 1996).
The basis for developing speech during this period is sensory integration (translating auditory to verbal messages) and oral motor abilities. Most children with Down syndrome understand messages, and are able to produce language (through signs) well before they are able to use speech. So sensory integration and oral motor skills therapy are used to strengthen the readiness for speech during this period.
PRESCHOOL THROUGH KINDERGARTEN
The young child is usually far more advanced in receptive language skills than in expressive language skills, but both areas are targeted in therapy. During this stage, receptive language work may focus on auditory memory and on following directions, which are important skills for the early school years. It will also focus on concept development such as colors, shapes, directions (top and bottom), prepositions through practice, and play experiences. Expressive language therapy will include semantics, expanding the mean length of utterance, and will begin to include grammatical structures (word order) and word endings (such as plural or possessive). Pragmatics skills such as asking for help, appropriate use of greetings, requests for information or answering requests, as well as role playing different activities of daily living may be addressed. Again, play activities such as dressing and undressing a doll, crafts activities such as making a card, or cooking activities such as making cupcakes may be used. The same activity may target semantic, syntactic, and pragmatics skills, for example, how many cupcakes should we make, what color frosting should we use, and following the directions to make the cupcakes. Many children with Down syndrome learn to read effectively, and this can help in learning language concepts (Buckley, 1993).
During this stage, sounds and specific sound production would be targeted; articulation therapy could begin. But the therapy would also include oral motor exercises and activities on an ongoing basis to strengthen the muscles and improve the coordination of muscles. Intelligibility is the goal of the speech component of therapy.
ELEMENTARY SCHOOL YEARS
During the years in elementary school, there is a great deal of growth in language and in speech. Speech-language pathology may involve collaboration with the teacher and may be based in the classroom. Often, the curriculum becomes the material used for therapy, both proactively, to prepare the child for the subject and reactively, to help if problems occur. This makes sense, because school is the child's workplace, and success in school greatly affects self esteem.
Receptive language work becomes more detailed and advanced (Miller, 1988), including following directions with multiple parts, similar to the instructions given in school. Receptive language might include comprehension exercises, reading and experiential activities, and specific comprehension of vocabulary, morphology (word parts such as plurals), and syntax (grammatical rules).
Expressive language therapy would also focus on more advanced topics in vocabulary, similarities and differences, morphology, and syntax. Expressive language work might also include work on increasing the length of speech utterances. The pacing board, rehearsal, scaffolds, and scripts have been found helpful in facilitating longer speech utterances.
Pragmatics becomes very important during this stage; using communication skills in real life in school, at home, and in the community is the goal. Therapy might address social interactive skills with teachers and peers, conversational skills (discourse), how to make requests, how to ask for help when the child doesn't understand material in school, how to clarify statements that people do not understand, and so forth. As the child matures, the communicative activities of daily living will change. Treatment and/or home practice must keep pace with the child's communication needs at every stage.
Speech skills with emphasis on articulation and intelligibility would be targeted in therapy during this period (Swift and Rosin, 1990). An individual analysis of oral motor strengths and challenges is important to determine what specific skills need to be addressed, for example, does the child have low muscle tone or muscle weakness in the oral facial area? difficulty with motor coordination? difficulty with motor planning? Are other speech areas such as voice and fluency affecting intelligibility? Each of these areas can be worked on if they are affecting communication ability for an individual child.
There are many different approaches to speech and language treatment that can be used, and some may be used simultaneously as part of a comprehensive individually designed program.
Therapy may be programmed based on linguistic skills, that is, there may be individual goals for semantics, morphology and syntax, pragmatics, and phonology. Therapy may also focus on different channels. So the goals for therapy may target auditory skills or speech and oral motor skills, or encoding a language message or producing a language message. One channel, such as reading, may be used to assist another channel such as expressive language or written language. Therapy may also be approached through the needs of the curriculum. In this approach, vocabulary would be taught based on the vocabulary that the child needs for success in science or social studies. The therapy may be proactive, teaching in advance the language skills that the child will need for the official curriculum, formal and informal classroom interactions, following directions in class and learning the rules and routines, and skills for interacting with peers. Curriculum-based therapy may also be reactive, targeting areas of difficulty as they occur and providing assistance with study skills and strategies to meet classroom expectations or to overcome difficulties when they occur. The speech-language pathologist can also suggest adaptive and compensatory strategies such as seating in front of the room, using a peer tutor, and visual cue sheets.
Whole language is a current approach in which reading, understanding, writing, and expressive language are taught as a whole. This often is based on children's literature and thematic activities accompanying the books; for example, a book about weather might also involve weather reporting, building a weather station, or drawing pictures or taking photographs of different weather conditions. Whole language does not teach in discrete linguistic units, such as focusing on plurals or verb tenses. Rather, it teaches in larger themes using meaningful multisensory experiences to teach concepts.
Communication in context is a pragmatics approach often used in classroom-based collaborative programs. It considers the entire communication situation including the participants (child, teacher, other children, school stall), the various settings in which the child communicates, and the differences between settings. This approach is very real-world oriented. Therapy might work on scripts and may provide assistance through scaffolds (e.g., fill-in sentences) to help the child learn to communicate more effectively with specific people or in specific settings based on a variety of objectives.
Speech and language treatment is complex and can include different approaches, a variety of goals, and many different activities. The goal is to find treatment approaches and methods which will enable each child to reach his communication potential.
RESOURCES
Communicating Together
P0 Box 6395
Columbia, MD 21045-6395
Telephone: 888-816-8501, or 410-995-0722
FAX: 410-997-8735
Communicating Together provides workshops for parents and professionals and a subscription newsletter devoted to speech and language issues in infants, toddlers, children, and adolescents with Down syndrome. Workshops are held in different parts of the country throughout the year. Local workshops can be arranged. The newsletter is published six times per year. Written and edited by Dr. Libby Kumin, each issue includes a major topic article (e.g., IEPs/IFSPs, oral motor skills, intelligibility), questions and answers, home activities and reviews of current research articles. Call Dr. Martin Lazar for more information.
REFERENCES
Buckley S (1993): Language development in children with Down's syndrome: Reasons for optimism. "Down's Syndrome: Research and Practice." 1:3-9.
Gibbs ED, Carswell L (1991): Using total communication with young children with Down syndrome: A literature review and case study. Early Childhood Devel 2:306-320.
Gravel J, Wallace 1(1995): Early otitis media, auditory abilities, and educational risk. Am J Speech-Language Pathol 4:89-94.
Kumin L (1994): "Communication Skills in Children with Down Syndrome: A Guide for Parents." Bethesda, MD: Woodbine House.
Kumin L, Chapman D (1996): Oral motor skills in children with Down syndrome. Communicating Together 13:1-4.
Kumin L, Councill C, Goodman M (1995): The pacing board: A technique to assist the transition from single word to multi-word utterances. Infant-Toddler Intervention 5:293-303.
Kumin L, Goodman M, Councill C (1996): Comprehensive communication assessment and intervention for school-aged children with Down syndrome. Down Syndrome Quart 1:1-8.
Kumin L, Goodman M, Councill C (1991): Comprehensive communication intervention for infants and toddlers with Down syndrome. Infant-Toddler Intervention 1:275-296.
MacDonald ID (1989): "Becoming Partners with Children - From Play to Conversation." San Antonio: Special Press.
Manolson A (1992): "It Takes Two to Talk" (2nd ed.). Idylewild, CA: Imaginart.
Meyers L (1994): Access and meaning: the keys to effective computer use by children with language disabilities. J Special Educ Technol 12:257-275.
Miller IF (1988): Facilitating advanced speech and language development. In C Tingey (ed.): "Down Syndrome: A Resource Handbook." Boston, MA: College-Hill Press, pp.119-l33.
Roberts JE, Medley L (1995): Otitis media and speech-language sequelae in young children: Current issues in management. Am J Speech-Language Pathol 4:15-24.
Schwartz S. Miller 1(1996): "The New Language of Toys: Teaching Communication Skills to Special Needs Children?" Bethesda, MD: Woodbine House.
Swift E, Rosin P (1990): "A remediation sequence to improve speech intelligibility for students with Down syndrome." Language, Speech Hearing Services Schools 21:140—146.
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Attention Problems in Down Syndrome: Is this ADHD?
by Dianne McBrien, M.D.
Dept.of Pediatrics, Children's Hospital of Iowa
Dr McBrien is a developmental pediatrician with an interest in children withDown syndrome. This article was originally published on the Univerity of IowaHospital Website, © 1998. Reprinted here with the author's permission.
Attention deficit hyperactivity disorder, or ADHD, is a commonly diagnosed childhood problem. ADHD is characterized by consistent demonstration of the following traits: decreased attention span, impulsive behavior, and excessive fidgeting or other nondirected motor activity.
All children, including children with Down syndrome, display these traits from time to time. But the child with Down syndrome may exhibit these traits more often than other children his age.
Does that mean that your child has ADHD? It may, but more commonly it means that a medical problem needs to be addressed, or that your child's educational program or communication method needs some adjustment. In children with Down syndrome who have difficulty paying attention, ADHD is a diagnosis of exclusion. Other problems must be ruled out first! What follows is a discussion of these problems.
Medical Problems that can look like ADHD
Hearing and vision problems
In order for a child to pay attention to classroom material, she has to be able to hear and to see it. Both hearing and visual problems are common in children with Down syndrome. Ear infections are overwhelmingly common, and, even if treated, can cause hearing loss for weeks. People with Down syndrome have middle ear structural abnormalities that can cause lifetime mild to moderate hearing loss.
Both near- and far-sightedness are common in Down syndrome, as well as cataracts and strabismus ("lazy eye").
How can we rule out significant hearing and/or visual loss as a cause of attention problems? To monitor hearing, an auditory brainstem response test (ABR) should be performed early in the child's life - between 2 and 6 months of age - as a baseline. Hearing screens should be performed annually until three years of age, and every other year thereafter. Children with abnormal hearing evaluations should be seen by an ENT physician to manage treatable causes of hearing loss.
A child with Down syndrome should be evaluated by an eye doctor during the first year of her life, and every 1-2 years thereafter, depending on what her visual problems are.
Thyroid problems
About thirty per cent of people with Down syndrome have thyroid disease at some point in life. Most have hypothyroidism, or underactive thyroid gland; a few have disease that results in overactive thyroid gland (Graves disease). An underactive thyroid gland can, among other things, make a child very tired and apathetic.
Too much thyroid activity can cause agitation and restlessness. Therefore, both conditions can look like poor attention and behavior.
Because thyroid disease is so prevalent in this population, and because it is difficult for doctors to detect just by examining your child, an annual blood test for thyroid hormone is recommended by the Down Syndrome Preventative Checklist.
Sleep problems
Sleep disorders are common in Down syndrome. These disorders are a group of conditions with many different causes but one thing is common: they all interfere with getting a good night's sleep. As a parent, you know that tired children can behave very differently from tired adults: they can become restless, whiny, and difficult to calm. And people of all ages have difficulty focusing and learning new information when they are sleep deprived.
Which sleep disorders are common in Down syndrome? Sleep apnea, or short periods of not breathing during sleep, is especially common. People with Down syndrome have small, often "floppy" airways, which can sometimes be completely or partially blocked during sleep by large tonsils and adenoids, or by floppy walls causing the airway to collapse as air is exhaled. Regardless of the cause of obstruction, the sleeper must awaken briefly to resume breathing. Some patients with sleep apnea awaken hundreds of times per night.
Symptoms associated with but not specific to sleep apnea include snoring, lots of "thrashing" while asleep, excessive daytime sleepiness, mouth breathing, and unusual sleep positions such as sleeping in a seated or hunched forward position.
Children suspected of having a sleep disorder should undergo a sleep study evaluation at an accredited sleep center.
Communication problems that can look like ADHD
People with Down syndrome may have many barriers to effective communication. The receptive language skills of children with Down syndrome - how well they understand what is being said - are often much stronger that their expressive language skills - how well they can say it. Parents often comment, "He knows what he wants to tells us, he just can't seem to put the words together or we can't make out what he is saying." Classroom participation is thus more difficult as well. The child may express his frustration by acting out or by inattention.
Educational Problems
Children with Down syndrome have a wide range of learning styles. Your child's educational team may need to try more that one method of presenting material before finding the one that works best for your child. If material is presented in a way that is not compatible with a child's learning style - for example, oral lectures for a student that needs visual aids and prompts - that child may appear bored, fidgety, and hyperactive.
The level of the material may also be a problem. If a child is presented with concepts that are too difficult for his cognitive level, he might "tune out" and appear inattentive. A child who is bored with overly easy material may also attend poorly and act out.
Emotional Problems
Because of the communication problems discussed above, people with Down syndrome may have difficulty taking about things that make them sad or angry. Major life changes such as loss or separation may prompt decreases in appropriate behavior at school or work.
Or none of the above
If your child has had a thorough medical evaluation, the issues above have been addressed, and severe attentional problems persist, the diagnosis of ADHD should be entertained.
Children with Down syndrome have not been shown to be at higher risk for ADHD; in fact, it may be less common in Down syndrome than in typical children. Medications used to treat ADHD are probably as effective in children with Down syndrome as they are in typical children.
The most common medication used to treat ADHD is Ritalin (generic name methylphenidate). Ritalin works by stimulating groups of brain cells that function to maintain attention. Thirty minutes after a child takes medication, it begins to take effect. Ritalin's action peaks two hours after it is taken. Four hours after the child has taken the medication, it is no longer active and has in effect left the body.
Because Ritalin is short-acting and is quickly eliminated by the body, it is usually judged to be the safest medication for ADHD. Ritalin is generally not recommended when a child has a seizure disorder, Tourette syndrome or tics, or has poor height and weight gains on Down syndrome growth charts.
Common side effects of Ritalin include decrease in appetite and restless sleep (especially if Ritalin is taken in the late afternoon). Less common are headaches, stomach pain, and tics.
Ritalin therapy should be discontinued if your child develops tics or if you and your child's doctor feel that he is not growing as expected from a Down syndrome growth chart.
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