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This is an in-depth look at how speech and language can effect the communication of a person with Down Syndrome. This website offers good insightful information on how to help with accessing therapy, and other methods for helping with speech and language.

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Speech and language development can be challenging for many children with Down syndrome. Here is information that can help infants and toddlers begin learning to communicate, and help children and adolescents progress in speech and language.

Speech and language present many challenges for children with Down syndrome but there is information that can help infants and toddlers begin learning to communicate, and help young children progress in speech and language. Although most children with Down syndrome learn to speak and will use speech as their primary means of communication, they will understand language and have the desire to communicate well before they are able to speak. Total communication, using sign language, pictures, and/or electronic synthesized speech can serve as a transitional communication system.

Are Hearing Problems Common in Children with Down Syndrome?

Ear infections occur frequently in infancy and early childhood in all children. But, because of anatomic differences in the ears of children with Down syndrome (narrow and short canals), they are more susceptible to accumulations of fluid behind the eardrum. This is known as Otitis Media with Effusion (OME). These problems result from fluid retention and inflammation in the middle ear; sometimes with infection. The presence of fluid makes it more difficult for the child to hear, resulting in fluctuating conductive hearing loss. Children should be followed by their pediatrician and otolaryngologist (ENT) and visit an audiologist for auditory testing. This testing can be done soon after birth. Hearing testing should also be done every six months until three years of age and annually through age 12 years. Treatment usually involves either an antibiotic regimen or the insertion of tubes to drain the fluid. These recommendations follow the schedule found in the Down Syndrome Health Care Guidelines.

What Effect Does Hearing Loss Have on Speech and Language Development?

Speech and language are learned through hearing, vision and touch. Hearing is very important to speech, and studies have shown that speech and language development are negatively affected by chronic fluid accumulation. Children with Down syndrome often have fluctuating hearing loss due to the frequency of fluid accumulation. When fluid is present, hearing is affected; as fluid drains, hearing improves. When children do not consistently hear well, it is difficult for them to learn how sounds and events are related, e.g. the ring of the telephone or someone calling them. It is important for parents to ensure that their child is hearing well. Pediatricians and otolaryngologists have great success in treating fluid accumulation, but treatment requires close monitoring.

How Is Feeding Related To Speech and Language?

Speech is a secondary function that uses the same anatomic structures used for feeding and respiration. Low muscle tone (hypotonia) affects feeding and will also affect speech. In feeding, children gain practice with strengthening and coordinating the muscles that will be used for speech. If a child has difficulty feeding, it is important that his or her parents seek guidance from a feeding specialist (a speech-language pathologist or occupational therapist who has advanced training). Feeding therapy can to help strengthen the oral muscles, which in turn can have a positive effect on speech.

What Other Skills Are Related To Speech and Language Development?

Other important pre-speech and pre-language skills are the ability to imitate and echo sounds; turn-taking skills (learned through games such as peek-a-boo); visual skills (looking at speakers and objects); auditory skills (listening to music, speech, and speech sounds for lengthening periods of time); tactile skills (learning about touch, exploring objects in the mouth); oral motor skills (using the tongue, moving the lips); and cognitive skills (understanding object permanence and cause and effect relationships). The family can stimulate these pre-speech and language skills at home. Parents can contact Child Find (a federal program that identifies the needs of children with disabilities) in their area and ask for speech-language pathology (SLP) services for their child. SLP can help parents learn the skills that they need to help their child begin learning language and using speech.

When Will My Child Say His First Word?

Children with Down syndrome frequently begin to use single words between the ages of two and three, but the age of the first word varies. Also, the first true word may be signed, not spoken. Most children with Down syndrome communicate from birth through crying, looking and gesturing. They have the desire to communicate and learn that crying or making sounds can affect their environment and bring them help, play, and attention. Many children with Down syndrome understand the relationship between a word and a concept by 10-12 months of age. However, at that age, a child generally does not have sufficient neurological and motor skills developed to be able to speak. That's why it is important to provide another system so that the child can communicate and learn language before they are able to speak.

What Is Total Communication?

Total communication (TC) is the combined use of signs and gestures with speech to teach language. Total communication provides a child with an output system to communicate when he or she has not yet developed the skills needed for speech. In total communication, adults use sign and speech when talking with the child. The child learns signs in conjunction with speech and uses the signs to communicate. Sign language is a transitional system for children with Down syndrome. Other choices for transitional communication systems are pictures used on a communication board or in a communication exchange system and/or electronic communication systems which use synthesized speech. Most children with Down syndrome are ready to use a language system many months or even several years before they are able to use speech effectively to communicate. Therefore, a transitional communication system such as sign language, pictures or synthesized voice is frequently needed. A speech-language pathologist and/or augmentative communication specialist (AAC) can help design a transitional communication system for your child. Most children with Down syndrome will use speech as their primary system for communication.

What Can Parents Do to Help Infants and Young Children Learn Speech and Language?

Parents are the primary communicators interacting with their babies and young children; thus, parents can do a great deal to help their children learn to communicate. Many of pre-speech and pre-language skills are best learned in the home environment. To help their children develop those skills, parents should:

Remember that language is more than spoken words. When they are teaching a word or a concept, they should focus on conveying meaning to the child through play or through multisensory experiences (hearing, touch, seeing).

Provide many models. Most children with Down syndrome need many repetitions and experiences to learn a word. Adults should repeat what a child says and give him or her a model to help reinforce a word.

Use real objects and real situations. When teaching a concept, parents can use daily activities and real situations as much as possible. They can teach the names of foods as their toddler is eating, names of body parts while bathing the child, and concepts such as under, in and on while the child is playing. Communication is part of daily life.

Read to their child. They should help their child learn concepts through reading about them, field trips in the neighborhood and daily experiences.

Follow their child's lead. If a child shows interest in an object, person or event, parents should provide him or her with the word for that concept. There are many milestones as the child progresses toward using speech. The child responds to a familiar voice, recognizes familiar faces, experiments with many different sounds, produces strings of sounds over and over and makes a sound to refer to his or her parents (dada, mama). Many children enjoy looking in a mirror, and increase their sound play and babbling when vocalizing in mirrors. Effective ways to work on these skills at home can be learned through early intervention sessions, through books, workshops and speech and language professionals.

When Should Speech-Language Pathology Services Begin? What Is Early Language Intervention?

Speech-language pathology services can begin in infancy. Treatment may involve sound stimulation, language stimulation accompanying play, feeding, oral motor exercises and/or other techniques. It should always include the family as a partner in treatment because the family is the primary teacher of speech and language. Early language intervention (ELI) is the designation given for services provided to infants and toddlers from birth through the end of age two. Speech-pathology services should be part of a comprehensive overall treatment plan for infants and toddlers. This may involve sessions at home or in a center, and may be part of a team approach involving physical, occupational and other therapists working together with the family.

A government-sponsored early intervention program is available in all communities in the U.S. Speech-language and other therapy services are often provided at these programs for eligible children under age three, based on disability and an evaluation. Most children with Down syndrome qualify for speech-language services. After age three, there may be continuing services sponsored through the school system with an IEP or through community agencies, private practitioners, university clinics, medical centers and other sources.

How Do You Find a Qualified Speech-Language Pathologist?

Qualified SLPs are certified by the American Speech-Language-Hearing Association and licensed by the state. When a professional is certified, they can use CCC-SLP (Certificate of Clinical Competence in Speech-Language Pathology) following their name. This means they have completed a master's degree in an accredited program, have completed required hours of clinical practice internship and passed a national certification examination. If a family is receiving services through Child Find or through the health department or school system in their local area, those organizations will either have professionals associated with them or be able to refer parents to local professionals. Members of local Down syndrome support groups can often refer parents to speech-language pathologists in your area who have experience working with children with Down syndrome.

***

NDSS thanks Libby Kumin, PhD, Professor of Speech-Language Pathology/Audiology, Loyola College in Maryland for preparing this piece.

Children with Down syndrome have strengths and challenges in development of communication skills, including receptive (understanding) language and expressive (speaking and composing sentences) language skills and reading. It takes a team to help children and adolescents progress well in speech and language; that team typically includes speech-language pathologists, physicians, classroom teachers, special educators and families. Speech-language pathologists have information and expertise to help address the speech and language problems faced by many children with Down syndrome. Physicians treat ear, nose and throat conditions and metabolic and hormonal concerns that may affect respiration, hearing, voice and articulation. School learning is language based, so classroom teachers, special educatos and speech-language pathologists help in modifying language and curriculum to help children learn. Parents play an important role in their child's speech and language development because home and daily activities are the core of communication.

What Are the Language Characteristics of Children and Adolescents with Down Syndrome?

Research and clinical experience demonstrate that some areas of language are generally more difficult for children with Down syndrome while other areas are relatively easier. Children with Down syndrome have strengths in the area of vocabulary and pragmatics (social interactive language). They often develop a rich and varied vocabulary as they mature. They have good social interactive skills and use gestures and facial expressions effectively to help themselves communicate. They generally have the desire to communicate and interact with people. Syntax and morphology (including grammar, verb tenses, word roots, suffixes and prefixes) are more difficult areas, possibly because of their complex and abstract nature. Children with Down syndrome frequently have difficulty with grammar, tenses and word endings and use shorter sentences to communicate.

Most children with Down syndrome are able to understand much more than they can express. As a result, their test scores for receptive language are higher than for expressive language. This is known as the receptive-expressive gap.

Children with Down syndrome learn well through visual means, so often reading and the use of computer programs focusing on language skills can help them learn. Seeing words and images associated with sounds and being able to read words can help speech and language develop. For some children, the written word can provide helpful cues when using expressive language.

What Are the Speech Characteristics of Children and Adolescents with Down Syndrome?

There are a wide range of abilities that children with Down syndrome demonstrate when using speech. Speech intelligibility (speech that can be easily understood) is one of the most difficult areas for people with Down syndrome at all ages. Many children have difficulty with the strength, timing and coordination of muscle movements for speech. Speech involves coordinating breathing (respiration), voice (phonation), and the production of speech sounds (articulation). Factors that can contribute to speech intelligibility problems include: articulation problems with specific sounds, low oral-facial muscle tone, difficulty with sensory processing and oral tactile feedback, use of phonological processes (e.g. leaving off final sounds in words) and difficulties in motor planning for speech.

What Does a Speech-Language Pathologist Do?

A speech-language pathologist (SLP) can provide evaluation and treatment for the speech and language difficulties experienced by children and adolescents with Down syndrome. They can help develop a comprehensive treatment plan to address all of the areas in which the child may be experiencing difficulty, including receptive and expressive language, semantics (vocabulary), syntax (grammar), pragmatics (uses of language and social and conversational skills) classroom language skills, speech, oral motor planning and oral motor strengthening. SLPs can work with families and teachers to design and implement an effective school, home and community program to help children develop stronger communication skills.

What Language Skills Are Needed for School?

Parents can help by working as a team with their school personnel to develop an individualized treatment program. In school settings in the United States, the plan will be part of the IEP (Individualized Education Program). Speech and language IEPs may include diagnosis and evaluation, individual therapy sessions, group therapy sessions, classroom-based therapy sessions and/or outcome goals. The IEP may also include provisions for information, consultation and guidance to parents and classroom teachers.

When children are in inclusive settings, the speech-language pathologist may consult with the teacher to provide information about a child's speech and language needs, and may suggest modifications, such as providing the student with written rather than verbal instructions or including fewer items on a class worksheet. Accommodations such as preferential seating to help problems in hearing and listening may be used. Certain skills may also help prepare a child to get the most out of classroom learning; children who have learned to follow directions, have a good grasp of classroom routine and have basic subject knowlege are well prepared for a successful educational experience. Other communication skills needed include the ability to talk and interact with other children, teachers, custodians, cafeteria staff and other school personnel such as school bus drivers.

It is difficult for children in school when their speech and language can't be understood by the teacher or other children in the class. Behavior problems are sometimes related to frustration in not being understood and the relationship between communication and behavior should be explored. In the schools, a child can be referred for a Functional Behavioral Analysis. Based on the findings, a Positive Behavior Intervention Program can be developed.

What Can Parents Do to Help Their Child's Speech?

Parents can provide practice in speech and language skills at home and in the community. Varied and inclusive home and community experiences help children and adolescents with Down syndrome continue to acquire and use new communication skills. Activities that involve social interaction, such as scouting or participating in youth groups, can help young people with Down syndrome develop and practice speech and language skills. When a child has more opportunities to communicate, his or her skills will expand.

The speech-language pathologist can provide information and can design a home activities program to help the child practice the communication skills being addressed in therapy. It is important that parents stay in regular contact with the speech-language pathologist so that their child can practice speech and language skills. Regular phone or e-mail contact, a journal or audiotapes can provide that continuous contact. Parents can also seek additional services as needed. Books, workshops, conferences and newsletters can provide state-of-the-art information.

How Can I Get Help for My Child?

Parents are often frustrated because they feel that their child needs more speech and language therapy than is being provided by the school. School systems are the major provider of speech-language services, but they have guidelines that determine whether a child is eligible for their services. Sometimes eligibility depends on whether a child's test scores are below those for his or her age; other criteria include the relationship between cognitive and language levels. Parents should make sure they are aware of the eligibility criteria, as well as the federal, state or local legislation and policies that apply to service delivery in speech and language.

Although most children receive speech and language services through their local educational system, speech-language pathology services are also available in hospitals, rehabilitation centers, university clinics and private practices. Parents should seek additional help for their children when needed.

How Can I Find a Qualified Speech-Language Pathologist (SLP)?

Qualified SLPs are certified by the American Speech-Language-Hearing Association and licensed by the state. After professionals have been certified, they can use CCC-SLP (Certificate of Clinical Competence in Speech-Language Pathology) following their names. This means they have completed a master's degree in an accredited program, completed required hours of clinical practice internship and passed a national certification examination. The American Speech-Language-Hearing Association or a specific state's Speech-Language-Hearing Association can refer parents to local SLPs. Members of Down syndrome support groups can also often refer parents to local speech-language pathologists who have experience working with children with Down syndrome.

***

NDSS thanks Libby Kumin, PhD, Professor of Speech-Language Pathology/Audiology, Loyola College in Maryland for preparing this piece.

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Speech and language development can be challenging for many children with Down syndrome. Here is information that can help infants and toddlers begin learning to communicate, and help children and adolescents progress in speech and language. Speech & Language Therapy for Infants, Toddlers & Young Children Speech and language present many challenges for children with ...

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A prenatal screening test. This test can show an increased likelihood that a fetus has Down syndrome, but it cannot determine Down syndrome is definitely present. If a screening test shows an increased likelihood, a diagnostic test can be ordered.

A prenatal diagnostic test. This test can determine with certainty that Down syndrome is present. Diagnostic tests carry a slightly greater risk to the fetus than do screening tests.

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Health care providers can check for Down syndrome during pregnancy or after a child is born. There are two types of tests for Down syndrome during pregnancy:

A prenatal screening test. This test can show an increased likelihood that a fetus has Down syndrome, but it cannot determine Down syndrome is definitely present. If a screening test shows an increased likelihood, a diagnostic test can be ordered.

A prenatal diagnostic test. This test can determine with certainty that Down syndrome is present. Diagnostic tests carry a slightly greater risk to the fetus than do screening tests.

The American Congress of Obstetricians and Gynecologists (ACOG) recommends that all pregnant women be offered a Down syndrome screening test.

Prenatal Screening for Down Syndrome

There are several options for Down syndrome prenatal screening. These include:

A blood test and an ultrasound test during the first trimester of pregnancy. This is the most accepted approach for screening during the first trimester. A blood test enables a health care provider to check for "markers," such as certain proteins, in the mother's blood that suggest an increased likelihood of Down syndrome. Then the health care provider does an ultrasound test, which uses high-frequency sound waves to create images. An ultrasound can detect fluid at the back of a fetus's neck, which sometimes indicates Down syndrome. The ultrasound test is called measurement of nuchal translucency. During the first trimester, this combined method results in more effective or comparable detection rates than methods used during the second trimester.

A blood test during the second trimester of pregnancy. As in the first trimester, a blood test enables a health care provider to check for markers in the mother's blood. A triple screen looks for levels of three different markers; a quadruple screen looks for levels of four different markers.

A combined test (sometimes called an integrated test). This approach uses both a blood test and an ultrasound during the first trimester as well as a second-trimester blood test. Health care providers then combine all these results to produce one Down syndrome risk rating.

If a woman is pregnant with twins or triplets, a blood test will not be as reliable because the substances from a Down syndrome fetus may be harder to detect.

Prenatal Diagnostic Testing for Down Syndrome

If a screening test suggests the likelihood of Down syndrome, a diagnostic test can be performed. ACOG recommends that pregnant women of all ages be given the option of skipping the screening test and getting a diagnostic test first. Until recently, only women over age 35 and other at-risk women were offered this option because diagnostic tests carry a slight risk of miscarriage. Before having diagnostic testing, a pregnant woman and her family may want to meet with a genetic counselor to discuss their family history and the risks and benefits of testing in their specific situation.

Diagnostic testing for Down syndrome involves removing a sample of genetic material. After it is removed, the sample is checked for extra material from chromosome 21, which may indicate that a fetus has Down syndrome. Parents usually get the results of the test a week or two later. The following procedures are used to extract samples.

Amniocentesis (pronounced am-nee-oh-sen-TEE-sis). A health care provider takes a sample of amniotic (pronouncedam-nee-OT-ik) fluid, which is then tested for the extra chromosome. This test cannot be done until week 14 to 18 of the pregnancy.

Chorionic villus (pronounced KOHR-ee-on-ik VIL-uhs) sampling (CVS). A health care provider takes a sample of cells from a part of the placenta (pronouncedpluh-SEN-tuh), which is the organ that connects a woman and her fetus, and then tests the sample for the extra chromosome. This test is done between weeks 9 and 11 of pregnancy.

Percutaneous (pronounced pur-kyoo-TEY-nee-uhs) umbilical blood sampling (PUBS). A health care provider takes a sample of fetal blood in the umbilical cord through the uterus. The blood is then tested for the extra chromosome. PUBS is the most accurate diagnostic method and can confirm the results of CVS or amniocentesis. However, PUBS cannot be performed until later in the pregnancy, during the 18th to 22nd week.

Prenatal diagnostic testing does involve some risk to the mother and fetus, including risk of miscarriage that ranges from less than 1% to 2%. If you and your family are considering prenatal diagnostic testing for Down syndrome, discuss all the risks and benefits with your health care provider.

Chromosomal Testing of Maternal Blood

A pregnant woman who is at risk for having an infant with Down syndrome also can have a chromosomal test using her blood. A mother's blood carries DNA from the fetus, which may show extra chromosome 21 material. A more invasive test then would usually confirm the blood test.

Testing and In Vitro Fertilization

Another approach to diagnosis is used in conjunction with in vitro fertilization. Preimplantation genetic diagnosis (PGD) allows clinicians to detect chromosome imbalances or other genetic conditions in a fertilized egg before it is implanted into the uterus.

This technique is useful mostly for couples who are at risk of passing on a variety of genetic conditions, including X-linked disorders, as well as couples who have suffered repeated spontaneous pregnancy losses, sub-fertile couples, or those at risk for single-gene disorders.

Those interested in PGD should have genetic counseling and should consider close monitoring and additional testing during their pregnancies, given some increased risk of chromosomal abnormalities arising secondary to the in vitro fertilization process.

Diagnosis of Down Syndrome After Birth

A diagnosis of Down syndrome after birth is often based initially on physical signs of the syndrome.

But because individuals with Down syndrome may not have these symptoms, and because many of these symptoms are common in the general population, the health care provider will take a sample of the baby's blood to confirm the diagnosis. The blood sample is analyzed to determine the number of the baby's chromosomes.

1. Driscoll, D. A., & Gross, S. (2009). Prenatal screening for aneuploidy. New England Journal of Medicine, 360, 2556-2562.[top]

2. Ehrich, M., Deciu, C., Zwiefelhofer, C., Tynan, J. A., Cagasan, L., Tim, R., Lu, V., et al. (2011). Noninvasive detection of fetal trisomy 21 by sequencing of DNA in maternal blood: A study in a clinical setting. American Journal of Obstetrics & Gynecology, 204, 201-211.[top]

3. Caughey, A. B., Hopkins, L. M., & Norton, M. E. (2006). Chorionic villus sampling compared with amniocentesis and the difference in the rate of pregnancy loss. Obstetrics and Gynecology, 108, 612-616.[top]

4. Evans, M. I., & Wapner, R. J. (2005). Invasive prenatal diagnostic procedures 2005. Seminars in Perinatology, 29, 215-218.[top]

5. Daniilidis, A., Karydas, H., Zournatzi, V., Tantanasis, T., Giannoulis, C., & Tzafettas, J. (2008). A four-year retrospective study of amniocentesis: One centre experience. Hippokratia, 12, 113-115.[top]

6. Hanna, K. E. (2006). Reproductive genetic testing. Retrieved June 11, 2012, from the National Human Genome Research Institute website:http://www.genome.gov/10004766[top]

7. National Human Genome Research Institute. (2010). . Retrieved June 11, 2012, from Learning about Down syndrome http://www.genome.gov/19517824#3[top]

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How do health care providers diagnose Down syndrome?

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Health care providers can check for Down syndrome during pregnancy or after a child is born. There are two types of tests for Down syndrome during pregnancy: A prenatal screening test. This test can show an increased likelihood that a fetus has Down syndrome, but it cannot determine Down syndrome is definitely present.

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This PDF form is an example of how the province of BC and the B.C.T.F. are working together to get children with varying disabilities, and needs into the classroom.

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This academic Journal follows the lives of several families with children who have Down Syndrome. These families are faced with barriers to accessing physical fitness for their children with Down Syndrome. The older a child gets the more they will be phased out of organized sports with their peers.

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Decreased or poor muscle tone

Short neck, with excess skin at the back of the neck

Flattened facial profile and nose

Small head, ears, and mouth

Upward slanting eyes, often with a skin fold that comes out from the upper eyelid and covers the inner corner of the eye

White spots on the colored part of the eye (called Brushfield spots)

Wide, short hands with short fingers

A single, deep, crease across the palm of the hand

A deep groove between the first and second toes

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What are common symptoms of Down syndrome?

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The symptoms of Down syndrome vary from person to person, and people with Down syndrome may have different problems at different times of their lives. Physical Symptoms Common physical signs of Down syndrome include1,2:

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This Global News Article shows just how little time children with disabilities are accessing classroom time with their peers.

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In B.C., it can be a challenge for a special needs kid to attend a full day of school.

And it's a reality that Ann Mariscak and Katerina Gamlin, Nanaimo parents of special needs children, have confronted first hand.
Coverage of special needs students on Globalnews.ca:

In January, Mariscak dropped her son off at school, expecting he would be there for a full day, and then went off to work.

But then, she received a call partway through the day, asking her to come pick him up.

"They're waiting for me to come pick him up from his half day," Mariscak told Global News.

Gamlin has encountered similar situations with her daughter.

"We were basically told that my daughter could not attend school for more than an hour and a half a day," she said.

Mariscak and Gamlin have found themselves among a growing group of parents who say that under-resourced schools and a lack of fully-trained staff are essentially pushing their kids out of school.
READ MORE: The B.C. Teachers Federation is concerned the teacher shortage is affecting special needs students
It's a problem right across the province, said Karen Nordquist, a director at the British Columbia Confederation of Parent Advisory Councils (BCCPAC).

"I've supported families who've told me that they're told that their children are allowed to attend from 9 to 10:30, two or three days a week," she told Global News.

The problem was made clear in a BCCPAC survey.

The survey of 800 parents found 372 respondents saying that their kids were regularly scheduled for less than full days during the last school year.

As many as 132 kids were scheduled for less than half a day, it added.

'On call'

It's a situation that has forced parents to be "on call," Nordquist noted.

"They don't know when the school's going to call and say, take your child home," she said.

"It could be after half an hour in school, a couple of hours, it could be multiple times a week."

And there's a fear among parents of speaking up about the problem, lest even more supports be taken away from a special needs student.
READ MORE: WATCH: Parents say union creates classroom challenges for special needs students
"The fear is very real," Nordquist said. "The fear that their children's supports will be cut back even further, or that it will create a chilly environment in the school."

B.C. Education Minister Rob Fleming said more resources are on their way.

"We'd ask people to be patient," he said. "This is the largest infusion of educational resources in a generation."

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In B.C., special needs kids are accessing school as little as 1.5 hours, 2 days a week

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In B.C., it can be a challenge for a special needs kid to attend a full day of school. And it's a reality that Ann Mariscak and Katerina Gamlin, Nanaimo parents of special needs children, have confronted first hand.

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This article explains that employment can be obtained with supports from the employer. It also states that, often people are encouraged to volunteer in order to obtain life skills to help with gaining future employment.

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In general, there are three types of employment options available to individuals with Down syndrome: competitive, supported and sheltered. Volunteer work is a great option to gain some additional job training.

COMPETITIVE EMPLOYMENT

In the United States, many typical students go to work when their secondary studies are completed. For young adults with Down syndrome and other disabilities, employment may be appropriate if they have both good work skills and previous work experience. Competitive employment is just that-competitive-and it is often a goal that can be reached with limited job supports. Many people benefit from what can best be described as a long orientation to their job. In the service world, it may have a different name such as "employment supports" or "job coaching." An individual called a "Job Coach," "Employment Specialist" or something similar accompanies the person to work for several hours, weeks, months, or until the person is successful independently in the work place.

Another approach to supporting people in competitive employment is fading. Fading is a technique where the support person slowly fades from the job site. They stay involved just enough to ensure the person continues to be successful as with decreasing support that is finally eliminated.

One essential aspect to successful employment is having someone serve as a Follow-Up Specialist. This person, in a mutually agreed upon interval with the employer, checks in with the supervisor and the employee to ensure that the workplace expectations continue to be met and any problems are identified early enough to be addressed. Too often, this important component is overlooked causing people to lose their jobs when a little bit of intervention might have resulted in continued success.

The most overlooked opportunity in employment is the use of natural supports in the workplace. This means providing guidance to coworkers that gives them confidence in assisting, prompting and providing general help to the individual with disabilities-just as they would anyone else. If you think about it, we all use natural supports in our work.

That being said, job loss is a fact of life, especially for persons with disabilities. Supervisors change, corporate expectations rise and under-performing workers are often the first to go.

Job development is essential for successful competitive employment. Friends or family members helping an individual with disabilities to find work should ensure not only that a job is identified, but that it is the right job. A noisy environment will not work for someone with sensory issues and a job in an office won't work for a person who needs more physical activity. It is important to consider the need for physical activity in the lives for people with disabilities when looking for employment that will be a good fit.

SUPPORTED EMPLOYMENT

Supported employment is similar to competitive employment in that is occurs in the community in real work locations. The major difference is that the individual requires long term or on-going support to be successful. In supported employment, any individual with any disability can be successful because the person receives whatever support is needed for however long it is required.

However, many agencies and governments have imposed time limits to how much support they will provide because of the expense it incurs. Persons with more challenges often require more support and resources for longer periods of time. Agencies may not be able to afford those resources, even though they are needed.

SHELTERED EMPLOYMENT

Sheltered employment is a softer term for sheltered workshops. These are settings where people with disabilities attend on a daily basis and have the opportunity to do subcontract work (usually mailings, packaging and assembly) and are paid according to how much they can accomplish compared to workers without disabilities. Department of Labor regulations ensure that accurate time studies are done for each job and payment is accurate.

Sheltered workshops are often criticized for being segregated settings. Some workshops have workers without disabilities because the amount of subcontract work cannot be completed without the addition of these workers. However, even when they do include nondisabled employees, there is little mixing between groups.

VOLUNTEER WORK

Volunteer work is a great option if earning a paycheck is not essential or if an individual would like to gain some additional job training. Some families use volunteer work as a way to get around waiting lists for supported employment programs. It is important to note, however, that a person may not volunteer where others are paid to do the same job. You can volunteer at a library or Meals-on-Wheels where others volunteer to do the same specific tasks but you can not volunteer at McDonald's or the local bookstore.

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Adapted from Thinking About Tomorrow: The Transition to Adult Life by Jo Ann Simons as it appeared in Disability Solutions, Volume 6, Issue 1

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In general, there are three types of employment options available to individuals with Down syndrome: competitive, supported and sheltered. Volunteer work is a great option to gain some additional job training. COMPETITIVE EMPLOYMENT In the United States, many typical students go to work when their secondary studies are completed.

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This is an informative article about what Down Syndrome is. It also explains the characteristics, and the different forms of Down Syndrome. In addition to touch on the history and the prevalence of the disorder.

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What is Down Syndrome?

In every cell in the human body there is a nucleus, where genetic material is stored in genes. Genes carry the codes responsible for all of our inherited traits and are grouped along rod-like structures called chromosomes. Typically, the nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each parent. Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21.

This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm - although each person with Down syndrome is a unique individual and may possess these characteristics to different degrees, or not at all.

How Common is Down Syndrome?

According to the Centers for Disease Control and Prevention, approximately one in every 700 babies in the United States is born with Down syndrome, making Down syndrome the most common chromosomal condition. About 6,000 babies with Down syndrome are born in the United States each year.

When Was Down Syndrome Discovered?

For centuries, people with Down syndrome have been alluded to in art, literature and science. It wasn't until the late nineteenth century, however, that John Langdon Down, an English physician, published an accurate description of a person with Down syndrome. It was this scholarly work, published in 1866, that earned Down the recognition as the "father" of the syndrome. Although other people had previously recognized the characteristics of the syndrome, it was Down who described the condition as a distinct and separate entity.

In recent history, advances in medicine and science have enabled researchers to investigate the characteristics of people with Down syndrome. In 1959, the French physician Jérôme Lejeune identified Down syndrome as a chromosomal condition. Instead of the usual 46 chromosomes present in each cell, Lejeune observed 47 in the cells of individuals with Down syndrome. It was later determined that an extra partial or whole copy of chromosome 21 results in the characteristics associated with Down syndrome. In the year 2000, an international team of scientists successfully identified and catalogued each of the approximately 329 genes on chromosome 21. This accomplishment opened the door to great advances in Down syndrome research.

Are There Different Types of Down Syndrome?

TRISOMY 21 (NONDISJUNCTION)
Down syndrome is usually caused by an error in cell division called "nondisjunction." Nondisjunction results in an embryo with three copies of chromosome 21 instead of the usual two. Prior to or at conception, a pair of 21st chromosomes in either the sperm or the egg fails to separate. As the embryo develops, the extra chromosome is replicated in every cell of the body. This type of Down syndrome, which accounts for 95% of cases, is called trisomy 21.

MOSAICISM
Mosaicism (or mosaic Down syndrome) is diagnosed when there is a mixture of two types of cells, some containing the usual 46 chromosomes and some containing 47. Those cells with 47 chromosomes contain an extra chromosome 21.

Mosaicism is the least common form of Down syndrome and accounts for only about 1% of all cases of Down syndrome. Research has indicated that individuals with mosaic Down syndrome may have fewer characteristics of Down syndrome than those with other types of Down syndrome. However, broad generalizations are not possible due to the wide range of abilities people with Down syndrome possess.

TRANSLOCATION

In translocation, which accounts for about 4% of cases of Down syndrome, the total number of chromosomes in the cells remains 46; however, an additional full or partial copy of chromosome 21 attaches to another chromosome, usually chromosome 14. The presence of the extra full or partial chromosome 21 causes the characteristics of Down syndrome.

What Causes Down Syndrome?

Regardless of the type of Down syndrome a person may have, all people with Down syndrome have an extra, critical portion of chromosome 21 present in all or some of their cells. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.

The cause of the extra full or partial chromosome is still unknown. Maternal age is the only factor that has been linked to an increased chance of having a baby with Down syndrome resulting from nondisjunction or mosaicism. However, due to higher birth rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age.

There is no definitive scientific research that indicates that Down syndrome is caused by environmental factors or the parents' activities before or during pregnancy.

The additional partial or full copy of the 21st chromosome which causes Down syndrome can originate from either the father or the mother. Approximately 5% of the cases have been traced to the father.

What is the Likelihood of Having a Child with Down Syndrome?

Down syndrome occurs in people of all races and economic levels, though older women have an increased chance of having a child with Down syndrome. A 35 year old woman has about a one in 350 chance of conceiving a child with Down syndrome, and this chance increases gradually to 1 in 100 by age 40. At age 45 the incidence becomes approximately 1 in 30. The age of the mother does not seem to be linked to the risk of translocation.

Since many couples are postponing parenting until later in life, the incidence of Down syndrome conceptions is expected to increase. Therefore, genetic counseling for parents is becoming increasingly important. Still, many physicians are not fully informed about advising their patients about the incidences of Down syndrome, advancements in diagnosis, and the protocols for care and treatment of babies born with Down syndrome.

Does Down Syndrome Run in Families?

All 3 types of Down syndrome are genetic conditions (relating to the genes), but only 1% of all cases of Down syndrome have a hereditary component (passed from parent to child through the genes). Heredity is not a factor in trisomy 21 (nondisjunction) and mosaicism. However, in one third of cases of Down syndrome resulting from translocation there is a hereditary compontent - accounting for about 1% of all cases of Down syndrome.

The age of the mother does not seem to be linked to the risk of translocation. Most cases are sporadic - chance - events. However, in about one third of cases, one parent is a carrier of a translocated chromosome.

What Is the Likelihood of Having a Second Child with Down Syndrome?

Once a woman has given birth to a baby with trisomy 21 (nondisjunction) or translocation, it is estimated that her chances of having another baby with trisomy 21 is 1 in 100 up until age 40.

The risk of recurrence of translocation is about 3% if the father is the carrier and 10-15% if the mother is the carrier. Genetic counseling can determine the origin of translocation.

How Is Down Syndrome Diagnosed?

PRENATALLY
There are two categories of tests for Down syndrome that can be performed before a baby is born: screening tests and diagnostic tests. Prenatal screens estimate the chance of the fetus having Down syndrome. These tests do not tell you for sure whether your fetus has Down syndrome; they only provide a probability. Diagnostic tests, on the other hand, can provide a definitive diagnosis with almost 100% accuracy.

There is an extensive menu of prenatal screening tests now available for pregnant women. Most screening tests involve a blood test and an ultrasound (sonogram). The blood tests (or serum screening tests) measure quantities of various substances in the blood of the mother. Together with a woman's age, these are used to estimate her chance of having a child with Down syndrome. These blood tests are often performed in conjunction with a detailed sonogram to check for "markers" (characteristics that some researchers feel may have a significant association with Down syndrome). New advanced prenatal screens are now able to detect chromosomal material from the fetus that is circulating in the maternal blood. These tests are not invasive (like the diagnostic tests below), but they provide a high accuracy rate. Still, all of these screens will not definitively diagnose Down syndrome. Prenatal screening and diagnostic tests are now routinely offered to women of all ages.

The diagnostic procedures available for prenatal diagnosis of Down syndrome are chorionic villus sampling (CVS) and amniocentesis. These procedures, which carry up to a 1% risk of causing a spontaneous termination (miscarriage), are nearly 100% accurate in diagnosing Down syndrome. Amniocentesis is usually performed in the second trimester between 15 and 20 weeks of gestation, CVS in the first trimester between 9 and 14 weeks.

AT BIRTH
Down syndrome is usually identified at birth by the presence of certain physical traits: low muscle tone, a single deep crease across the palm of the hand, a slightly flattened facial profile and an upward slant to the eyes. Because these features may be present in babies without Down syndrome, a chromosomal analysis called a karyotype is done to confirm the diagnosis. To obtain a karyotype, doctors draw a blood sample to examine the baby's cells. They photograph the chromosomes and then group them by size, number, and shape. By examining the karyotype, doctors can diagnose Down syndrome. Another genetic test called FISH can apply similar principles and confirm a diagnosis in a shorter amount of time.

Preferred Language Guide

Use this language when referring to Down syndrome and people who have Down syndrome:

Down vs. Down's

These downloadable versions of the Preferred Language Guide are available to print and distribute:

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What is Down Syndrome? | National Down Syndrome Society

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What is Down Syndrome? In every cell in the human body there is a nucleus, where genetic material is stored in genes. Genes carry the codes responsible for all of our inherited traits and are grouped along rod-like structures called chromosomes.

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I believe that most people with an intellectual disability will face barriers to reaching their career goals. With the love, support, and guidance from her mom Carolyn was able to pursue her dream of opening  her own bakery.
http://reasontobake.com/

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Carolyn Sampson has always loved to bake.

So much so, in fact, that she now runs Reason to Bake, a gluten-free cookie startup in the mountains of North Carolina, along with her mother Elise.

To the Sampsons, the fact Carolyn has Down syndrome wasn't a deterrent.

"In our hearts, we believed she was capable of learning a profession, not just an entry-level job," Elise Sampson told The Mighty.

They just weren't sure what that profession would be.

That is, until Carolyn, now 21, announced she wanted to be a baker.

Elise and her daughter researched gluten-free baking, knowing many individuals with Down syndrome have gluten sensitivity, and then did a little poking around.

"We couldn't find anything on the market that met our standards for taste and freshness," Elise said. "It was a need that wasn't being addressed in our area."

And after a bit of soul-searching, mother and daughter decided to take the plunge.

"I literally had a series of dreams where God spoke to me about listening to what Carolyn was saying, and that we were going to build a business that would provide not only an opportunity for Carolyn, but for many like her," Elise said.

So they secured the use of a local coffee shop's kitchen after hours, set up shop at a farmer's market and contacted a business advisor.

Just like that, Reason to Bake was born. Their cookies come in three popular flavors - spicy ginger, chocolate chip and oatmeal raisin - and are now sold at 13 retail locations in western North Carolina.

Carolyn and Elise have big plans for the company's future. After celebrating the company's three-year anniversary in August, they'll launch a crowdfunding campaign in September. Funding is needed for new shipping-friendly packaging (designed by Clemson University as part of a senior project partnership) and for a new commercial convection oven. They also hope to open an e-commerce store soon.

The bakery has proved a transformative experience for Carolyn - who, according to her mom, has picked up interpersonal skills, a stronger work ethic and a sense of pride in the cookies - and she and her mom hope to extend that same opportunity to other young adults with disabilities.

"I would rather challenge Carolyn to [achieve] great feats, even if she doesn't quite make it, than tell her she can't do something," Elise said. "She will still be farther ahead than if she did nothing."
Reason to Bake offers a blog and email update form on its website.
Have you seen the first film with a national release to star a person with Down syndrome? Check out the film "Where Hope Grows" today!

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Mom Helps Daughter With Down Syndrome Start Gluten-Free Bakery

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Carolyn Sampson has always loved to bake. So much so, in fact, that she now runs Reason to Bake, a gluten-free cookie startup in the mountains of North Carolina, along with her mother Elise. To the Sampsons, the fact Carolyn has Down syndrome wasn't a deterrent.

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This video follows the lives of a couple who's daughter has down syndrome, a Doctors account of how 95% of all pregnancies will be terminated if the prenatal diagnostic test comes back positive for a chromosome defect.As well as a couple who have down syndrome and live independently.

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95% of people in Australia choose to terminate their pregnancy upon pre-natal diagnosis of Down Syndrome. Meet two people with the syndrome to learn about their families, lives, and dealing with their disability. Video journalist: Rachael Thornton. Facebook: https://www.facebook.com/SBS2Australia Twitter: https://twitter.com/sbs2 Tumblr: http://sbs2australia.tumblr.com/

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Osh Kosh is forced to examine why they overlook using children with disabilities in their advertisements.

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Mom Shocked Son with Down Syndrome Was Overlooked By Modeling Agency

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15-month-old Asher Nash is a natural in front of the camera. His mother, Meagan, thought he would be perfect for an OskKosh B'gosh ad, so she sent the photos to an agency casting for the company. After weeks of no response, she says she reached out to the agency, but was told they weren't specifically looking for children with special needs.

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A young woman with Down Syndrome gives a compelling speech about how you can achieve success, and how to be inclusive in the classroom as well as society.

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"DON'T LIMIT ME!"- Powerful message from Megan with Down Syndrome

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BC Teaching Federation has some links to useful resources.

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BCTF > Teaching to Diversity: ESL, Learning Assistance, Special Education

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Inclusive education and support resources.

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We accelerate research to increase availability of therapeutic, diagnostic, and medical care options and we empower Down syndrome families through education, connections, and support

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Education support for teachers and support workers

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Inclusion

Inclusion means all students learn together, in the same class, for the majority of the day. Students with Down syndrome learn and grow best when they are included in regular educational procedures, just as any kids. Inclusive teaching allows all students to learn from each other and gain an appreciation for the uniqueness of all people.

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Down Syndrome Education, Teaching Students in School - CDSS

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Inclusion means all students learn together, in the same class, for the majority of the day. Students with Down syndrome learn and grow best when they are included in regular educational procedures, just as any kids. Inclusive teaching allows all students to learn from each other and gain an appreciation for the uniqueness of all people.

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Strategies for students with Down Syndrome

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Strategies for students with Down Syndrome

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Aggression Management Anger/Frustration Management Anxiety Management Articulation Skills Attendance Strategies Attention Skills Blindness Bullying Management Skills Central Auditory Processing Deafness Depression/Sadness Management Disengagement/Motivation Strategies Eating Disorder Strategies Emotional Regulation English Language Skills Executive Function Fine Motor Skills Gross Motor Skills Hearing Intellectual Ability - High Intellectual Ability - Low Listening

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Another way to access resources is to build a network of front line workers.
such as, T.A..special educators, OT, PT, SLP, social workers and community support workers.

Local AXIS website: http://axis.bc.ca/

local CDC website:
http://cccdca.org/

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Transparency from the field of research 

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Transparency from the field of research 

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This article is a good read, it clearly lays out the modifications and adaptions that where made  in order to get inclusive research contributions from people with anintellectual disability.

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Here is a journal article about how the use of language can be a barrier to growth and development of children with Down Syndrome.