Parents are invested in improving their child’s vocabulary and reading skills. This is especially import for a child who has an autism spectrum disorder (ASD). This article provides a different spin on parent opportunities to help one’s child build his/her vocabulary based on results from the National Reading Panel (NRP) report. It is focused on awareness of a particular way of viewing vocabulary and contains suggestions for some targeted teaching during reading aloud activities. To learn more about the NRP report click here.
Since the NRP report, school systems have incorporated various approaches to address vocabulary enhancement. One of the concepts in the vocabulary field is the classification of vocabulary into three tiers; this concept has particular importance for individuals with ASD.
The Three Vocabulary Tiers
Tier 1 – These basic common words usually have a physical concrete referent and are the easiest to teach with regard to meaning. These are often the words teachers assume that children already know. Educators, however, may teach examples of multiple meaning for these words, idioms, and high frequency everyday expressions. Examples of Tier 1 words include “school,” “block,” “boy,” “walk” or common expressions such as “make up your mind.”
Tier 2 – These high frequency words contribute to the richness of books and conversation and are sometimes described as utility words. There is usually a lack of explicit instruction for many of these words, unless there is a demonstrated need for such. These words are less concrete but students have often acquired the meaning of many through exposure during daily living activities. Examples of Tier 2 words include “simple,” “because,” “for instance,” “estimate,” “plot” and “country.” Mastery of Tier 2 words is important for the comprehension of text books and daily reading material. There are too many words in this class for teachers to teach all the vocabulary words that might constitute Tier 2, so they must be selective. Tier 2 is sometimes called the level of the mature language user; this does not mean only adults users but individuals who have moved beyond basic simple sentences and basic concrete vocabulary.
Tier 3 – These are low frequency words that are found in content books about specific subjects. These are words that children may not encounter until the upper grades. These words need to be consciously learned and/or taught directly since they are not common in ordinary communication or media exchanges. Examples of Tier 3 words include: “isotope,” “phylum,” “Impressionism,” and “Renaissance Period.”
Teachers will vary in whether they choose to teach a lot of vocabulary, usually Tier 2, with traditional drill/dictionary work or to teach a smaller number of words while insuring depth and breadth of word meaning. A parent may wish to be familiar with his/her child’s teachers approach and reinforce the vocabulary being learned.
Implications for Parents of Children with ASD
Understanding Tier 2 becomes important for parents of even preschool children. If one looks at children’s books in the bookstores or at the library, many contain words that do not represent simple concepts. For example, on the site www.storylineonline.net if one views/listens to a pre-school/early elementary school book entitled Sebastian’s Roller Skates, one will encounter many Tier 2 words just in this singular book. The lists includes, “shy, blush, geography, tropical islands, billiard ball, regret, capital of Iceland, heart broken, concentrate, imagine, glide, repair, balance, Sahara Desert, and Mount Everest.” This list illustrates three points: the abundance of Tier 2 words, their frequency, and the futility of trying to directly teach every word. Some words will need to be taught on an-as-needed basis if they have not been learned incidentally. There are no lists of everything that might be classified as Tier 2; much depends on the circumstances.
Parenting a Child with Autism
A parent will want to be aware of the concept of Tier 2 words because of the frequency of their usage, their importance for reading comprehension, but also because of what parents know about their child’s disability of ASD. There has to be concern that children with ASD as a group will have more difficulty with Tier 2 words because they have language learning problems and may:
- Not have an interest in the conversation and dialogue that occurs around them—the source for incidental learning of some vocabulary for other children
- Only attend to key words in the utterances of others and miss the gist of the message
- Not ask about the meaning of words
- Deduct a wrong interpretation of meaning
- Have a shallow or restricted interpretation of meaning
- Have strength in Tier 1 words because the referents are more concrete
- Have delayed development in acquisition of Tier 1; may or may not have caught up to peers
- Require more direct teaching of Tier 1 vocabulary than typical peers
- Decode print words or repeat words but may have little understanding of the meaning
A parent can be in a better position to help his/her child in the vocabulary area if he/she has more awareness of exemplars of the tiers. One source of high frequency words that is age sensitive are the suggested vocabulary lists for augmentative communication users. Four lists are available: PreSchool Nondisabled Children Vocabulary List, Vocabulary List for Augmented Infant/Toddlers, Young Adults Vocabulary List, and 20-30 Year Old Nondisabled Adult Vocabulary. The older the individuals in the sample, the more the lists will include Tier 2 and Tier 3 words. For the younger children, the lists will contain a significant portion of Tier 1 words. Tiers are not identified in the lists so one will need to use the descriptions presented earlier to informally classify words into tiers.
Building Early Literacy Skills
There is no specific list of Tier 3 words either but one can gather ideas from various sources. Tier 3 is for special interests and not just academics. For the parents of an upper elementary aged to secondary level aged child, an interesting site to explore is www.vocabulary.com. This directory leads to extensive vocabulary lists on many topics ranging from baseball to bees to geology. This might be a source for Tier 2 as well as Tier 3 within special topics. For baseball, for example, the list includes “league,” “loyalty,” and “superstition” which might represent Tier 2 while “ERA,” “ground out,” and “triple play” may be Tier 3 vocabulary that is only of interest to someone who enjoys watching/playing baseball. It is easy to under or over-estimate your child’s familiarity with common vocabulary which is why these lists may be helpful.
As mentioned earlier, there is no specific site to Tier 2 words. A selective list, however, called the Academic Word List with 570 words. Kansella states that this list represents “…a very important vocabulary for learners intending to pursue academic studies in English at the secondary and post-secondary levels.” Parents should not feel that they personally have to teach all of these words. Rather, the purpose of this article is to raise awareness and to offer sources of information so tiers might be recognized and teaching done selectively as the opportunity arises. It must be remembered that it is important to distinguish between recognizing a word versus knowing the meaning. Reading skills usually lag behind the ability to recognize heard words during the early elementary years. Heard word knowledge, however, is the foundation for reading. Everyone may receptively know more word meanings than words they could define or would use in their daily vocabulary.
Building Vocabulary While Reading Aloud
Although one may use words of various tiers in oral conversation, a book reading activity by Mom or Dad might still represent the best structured and motivating context for teaching a few Tier 2 words per month (assuming the child has a reasonable command of Tier 1 words). If possible, a parent will want to read through a book or chapter ahead of time, identify potential Tier 2 words, and then select one to three targets. If it is a book that will be read repeatedly, then it is easy to build more recognition or to shift to other choices after the first few seem acquired by the child. Of course, generalization to other situations is crucial or the meaning may become restricted to the situation in the book. Each parent will need to find what works best for his/her child and his/her own comfort level with “teaching” a few vocabulary words that are not as concrete as Tier 1. The child’s teacher may have useful suggestions that may help the process. The school speech language pathologist may have administered a test called the MAVA or Montgomery Assessment of Vocabulary Acquisition that can give school staff and family a picture of how the child stands relative to other children of the same age from a tiered vocabulary perspective.
Developing Your Child’s Attention through Reading
Teachers will use a technique to evaluate prior knowledge about words that might occur in an upcoming chapter, unit of study, or a book to be read (Beck, McKeown, and Kucan, 2002). Parents might also want to use this particular approach with their child to evaluate their knowledge of certain oral (or print) words. This approach will be more successful at home if the child is already familiar with it from school. It can be modified from recognition of a printed word to a question about an orally presented word (the print version applies if the child is reading; the oral word version, if the parent is reading).
|Recognition of Print
|Recognition of Oral Word
|Never saw it before
|Never heard it before
|Saw it but don’t know what it means
|Heard it but don’t know what it means
|Recognize it as having to do with _________ (context)
|Think it has to do with ________ (topic)
|Know it well—can explain and use
|Know meaning well—can explain and use
A parent could keep the oral word version chart handy as a cue when reading aloud to his/her child. A parent would not want to check every Tier 2 word in a story because that would make story-time an unpleasant and lengthy experience but a few words might be checked out prior to reading or just automatically explained during the reading event. Parents do not want to become formal teachers and must use informal methods that fit a home lifestyle if they wish to add some vocabulary to their child’s repertoire. They may need to explain meaning or repeat the sentence by saying it in another way. It may be helpful to use the select target words in many situations and with some frequency over several days. Parents may wish to keep a log of what they are informally targeting and solicit the help of others in the generalization process. They will want to be sure to go back to review on a periodic basis (i.e., make an effort to use the vocabulary word again and again over time and/or re-read the book which was the original source of the instruction).
Research suggests that it is hard for readers to intuit meaning just from a context. Sentence and paragraphs contexts vary in terms of how many clues and information they provide that would lead a reader to a correct interpretation of an unfamiliar vocabulary word. If one only encounters a word rarely, it is less likely to become a useful component of one’s repertoire. That brings learning back to some direct instruction across the age levels. For young children, teachers are advised to select words that represent concepts understandable to the audience (i.e., the young child). Second, it is advisable to select words that can easily be explained to someone of a given age and language ability level. Third, it is important to select words that are useful and which the child is likely to encounter again with some frequency. With reference to the book Sebastian’s Roller Skates mentioned earlier, words like “concentration” and “balance” might fit these criteria for targeting with this book and in other daily living activities.
The primary guideline for teaching new vocabulary words is known by every educator and most parents (i.e., you help the child attach the new information to the old or familiar). So, with the example from Sebastian’s Roller Skates, one might help the child understand “balance” by tying it to concrete examples. One could ask the child to stand on one foot and try to not tip over (i.e., lose his balance). He could attempt to balance a book on his head. He could be reminded of the days when he was learning to ride his bike (i.e., if he lost his balance, he fell off the bike). Depending on the child’s age, one could introduce a broader meaning into the conceptual realm. For example, people balance a checkbook or their checking account on line. They balance sleep and work, work and fun, etc. Your child is much more likely to remember these associated examples than a dictionary definition. One could even give him/her some reward for using the target word(s) in his/her conversation during the week, if this is an age appropriate challenge.
Reading aloud to your child gives him/her an opportunity to hear/learn vocabulary that he/she may not be able to read on his/her own. The read aloud situation allows for an interactional exchange that will not occur when/he/she reads alone at his/her reading level. Building vocabulary is an important goal with life-long implications. Parents can help their child do this (i.e., build vocabulary one word at a time).
Beck, I., McKeown, M. G., & Kucan, L. (2002). Bringing words to life: Robust vocabulary instruction. New York, NY: Guilford Press.
Vicker, B. (2009). Reading with your school-age child: Building vocabulary one word at a time. The Reporter 14(3), 11-14.
Background on NRP Report
The National Reading Panel (NRP) report in 2000 made many recommendations for educators about important components of reading. Good vocabulary development was one area identified as important for reading comprehension. In later elementary school and beyond, mature readers learn new word meanings as they encounter the words in print. Typically, younger children DO NOT learn the meaning of early reading words as they learn to read them. Instead, these new reader’s draw upon their already established repertoire of receptive spoken vocabulary words for the meaning. So, for example, when a first grade child learns to read the word “dog,” he usually already has a mental concept of what constitutes the category of “dog-ness.” Teachers assume that young students have an underlying competency with specific basic words but they recognize the need to teach the meaning of others. Which “others” to teach, is an important question. Since the NRP report, school systems have incorporated various approaches to address vocabulary enhancement. One of the concepts in the vocabulary field is the classification of vocabulary into three tiers; this concept has particular importance for individuals with ASD. To read the entire NRP report visit www.nationalreadingpanel.org.
Dealing with big physical and emotional changes in your adolescent
At a parent group meeting, a mother asked “since my daughter’s mental age is about a third grade level, why is she starting her period? This doesn’t seem possible.” All children go through puberty regardless of IQ or social skills. The brain does not tell the body to stop growing if the boy or girl’s developmental level is younger than their age. Puberty is a stage of development just like moving from being an infant to a toddler. Puberty is considered to begin around age 12 for girls and age 14 for boys. The physical changes of puberty are centered on the development of secondary characteristics and the onset of menstruation (in girls) and ejaculation (in boys).
The physical changes usually begin between ages 7 and 14. Girls begin to have growth spurts, develop breasts, pubic and underarm hair, and have vaginal discharge. It becomes increasingly important to have good hygiene by taking a shower or bath each day, washing your hair, underarms, and vaginal area. A girls menstruation (period) usually follows within a year or two of these changes. The average age a girl starts menstruating is around 12 or 13 but some girls start as early as 9 and others are as late as 17 (Strong, DeVault, Sayad & Yarber, 2005).
For example, as a parent sees their daughter start to develop physical changes of puberty, it is essential to start talking to her about menstruation. A father called Indiana Resource Center for Autism concerned that his daughter screams loudly and runs around the room every time she sees the sight of blood even if the cut on her finger is small from a piece of paper. She doesn’t become calm until they put a bandage on the cut. How will she react about blood from her vagina? It was discussed that the term for the menstrual pad would be called a very large bandage. This language would help their daughter transition to starting to menstruate. In addition, the family decided it was going to be essential to start practicing the steps from wearing a pad to changing it regularly before the important day came. Here are some ideas to assist in that process.
What can parents do about these changes in girls?
- Put red food coloring in her underwear to show what the blood might look like when she starts her period.
- Have her mom model for her the steps to wearing and changing a sanitary pad. If possible, include other girls in the house as well.
- Mark the pad and panties with a different color to show where the pad should be placed in her underwear.
- Go to the store and buy a few different kinds of sanitary pads. One could try different sizes, thicknesses, wings or no wings, fragrances, and brands.
- Make a visual schedule of how often the sanitary pad should be changed. Remember her school schedule. Try to arrange the changing time with the times that she would change classes (normal breaks in the day) at school. The more the schedule is the same at home and school, the easier the transition will be.
- Watch a video on a teens health website if they want to know why the menstrual cycle is necessary.
- If your daughter learns best with facts, go to the bookstore to buy a book on getting your period. Having a full explanation of her menstrual phases may help your daughter transition to this part of her life. For others, the information may be overwhelming. As a parent you have learned what manner your daughter learns best. Apply the information you already know about her to this stage called puberty.
- Plan a celebration party for when she starts her period. Growing into a woman is exciting and should be celebrated.
The physical changes usually begin around age 13. Some boys start prematurely at age 12 while others begin as late as 17 or 18 years of age. Generally, boys’ puberty lags behind girls by two years. The secondary characteristic for boy’s includes: growth spurts, bigger hands and feet, increased muscle mass, deepened voice, facial and underarm hair and more hair in the pubic area. Their penis and testicles also develop (Strong, DeVault, Sayad, Yarber, 2005). Like girls, it is imperative to be showering or bathing each day. Be sure to wash hair, underarms and in genital area.
At puberty, boys begin to ejaculate semen. Many boys are unnerved by the first appearance of semen which will probably occur while sleeping (e.g. wet dreams). It is important to differentiate to your son that he is not urinating in bed. One parent shared that her son didn’t want to disappoint her because he was a “big boy” now and didn’t wet his bed. So when he started having nocturnal emissions (e.g. wet dreams), he was afraid to tell her because he thought she would be disappointed. His behavior escalated and he refused to go to bed at night. In addition, boys may have erections at odd or unplanned times. This is part of puberty and one should not be alarmed. Unplanned erections will go away during puberty.
What can parents do about these changes in boys?
- Don’t overreact or under react. Remember your son probably doesn’t have any idea of what is happening to him when he has nocturnal emissions. Change the sheets or have him help you.
- Use a calm voice. Don’t yell. Use the time to explain what is happening during puberty with your son. Relate the nocturnal emissions to other changes he is experiencing (secondary characteristics), then explain that this is part of puberty and growing into being a man.
- Go to the library or bookstore to read about how boy’s bodies change from being a teenager to a man.
- Borrow books and videos from Center for Disability Information and Referral at the Indiana Institute on Disability and Community (CeDIR) or contact your local library or Family Resource Center.
When talking about boy and girl body parts use the medical terminology. Language concepts are difficult for many individuals with autism spectrum disorder. Therefore, if they learn the word “pee pee” to mean penis when they are young it will be awkward and inappropriate for them to still be calling their male genitalia “pee pee” when they are young adults or men. It is best to start with the medical terminology from the beginning. Get used to saying the words such as penis, testicles and pubic hair for boys and vagina, breasts, and menstruation for girls. Here are other critical points to ponder:
- Before you can effectively communicate your values about sexuality to your children, you need to know what you believe and why.
- You are the main educators of sex for your son and/or daughter. Whether you are comfortable or not, wouldn’t you rather they get factual information from you than to follow a classmate’s or friend’s advice? See www.familiesaretalking.org for information.
- You must be “askable” (Gordon & Gordon, 2000). This means one should be prepared for any question or incident that involves your son or daughters sexuality. Always say, “That is a good question.” You can decide to answer the question immediately or say, “We’ll discuss it when we get home.” If you answer with a positive tone, then your child will continue to ask questions. Also, remember to answer the questions simply and directly. Don’t give too much information to your adolescent.
- Children are not perfect. They make mistakes and it’s up to us to turn their mistakes into lessons.
Remember to use the same teaching strategies that you have used to teach your children other skills. Just apply these strategies to teaching them about menstruation and nocturnal emissions as they go through puberty. Some of these strategies may include visual schedules or check off lists, videos, facts in books, pictures of what is happening to their bodies, stories to predict what might occur, or specific terminology. Think of puberty as just another stage of development. Embrace this time and move forward.
The pleasure watching a child enjoying a favorite meal or birthday cake is familiar to all. Meals are a time for you to insure your child’s proper nutrition to promote health and development and a time for the whole family to share and connect with each other. However, it is not uncommon for mealtime to occasionally be a source of stress and frustration for parents and children alike. For children with Down syndrome, there may be additional circumstances that lead to more challenges with eating and swallowing. There are a variety of ways to improve the skills needed to safely enjoy mealtimes.
Children with Down syndrome may have similar patterns of oral motor challenges, attributable to a seemingly small mouth in contrast to a larger tongue (occasionally macroglossia), their underlying hypotonia, and tongue protrusion. Children with Down syndrome are predisposed to respiratory, cardiac and gastrointestinal problems in many cases, and these issues can greatly impact eating.
Feeding and Mealtimes: Stages
Infants with Down syndrome may have difficulty latching on to the nipple and initiating a strong suck pattern due to hypotonia. For children with respiratory and cardiac issues, it may be difficult to coordinate the suck-swallow-breathe process for feeding. If breastfeeding is difficult initially, mothers may want to give their infants expressed milk through a bottle or a supplementer, like a syringe or gavage, while the infant improves his latch and sucking for breastfeeding effectively. Proper positioning, special bottles if a bottle is being used, and some oral-stimulation techniques may be helpful for these infants.
Respiratory and cardiac issues often reduce a child’s stamina and if feeding takes more than thirty minutes, the baby may tire easily and be expending more calories than he is taking in. When a breastfeeding infant is not gaining sufficient weight, a mother may consider partial supplementation with formula or additional expressed breast milk. This can be done by bottle or a nursing supplementer so the infant can continue to breastfeed.
If the infant tends to sleep through feeding times or is difficult to rouse, feeding only on demand may be inadequate for his caloric and nutritional needs and stimulation of the mother’s milk supply. An infant may need to be awakened for breast or bottle feeding. If the infant falls back asleep without taking an adequate amount of milk, arousal techniques such as opening clothing, gentle movements such as tickling feet or stroking cheeks, talking, or patting may help the infant.
Lactation consultants, occupational therapists, speech therapists, and breastfeeding support groups often have valuable resources and with the guidance of the pediatrician will advise you regarding the safest and most appropriate feeding method for your baby.
As your child progresses toward sitting up and begins to show an interest in what you are eating, you look forward to introducing food. Introducing purees and later food with more texture or table foods may result in the child not accepting the food. Babies must learn to coordinate tongue and jaw movements and if he has a habit of protruding his tongue this may add to the problem of food being pushed back out. To address this:
- Consider if the baby is really ready for solids; you may want to try again in another month.
- Check positioning. The best position is sitting upright, with his legs, head, back, and feet supported.
- Start with small spoonfuls of food so that the child can learn to control tongue and jaw movements.
- If he thrusts his jaw or tongue forward, present the spoon firmly on the center-front of his tongue with gentle pressure. Resist scraping the spoon off on the child’s upper lip and let him clear the spoon himself.
- Let your baby lead the mealtime by respecting what he communicates. Has he finished his bite before you offer another? Is he turning his head away or leaning in toward you with an open mouth?
Your pediatrician may tell you to avoid certain foods, which may cause choking, until your child is one or two years of age. Because there may be a delay in mastering certain oral-motor skills, children with Down syndrome often need to be cautious with these foods until age five or beyond. If your child is not consistently using a mature rotary chew it is best not to offer these foods:
- Hard candies
- Raw carrot sticks
- Hot dogs
- Whole grapes
- Large pieces of meat
There are several techniques you can use to help your child develop more mature eating skills:
- Offer several choices of finger foods at each meal
- If your child shows a preference for chewing on one side of his mouth, place food on the opposite side whenever possible
- To encourage his rotary chewing, place small dabs of yogurt or similar food in the corners of his mouth to lick off so that his tongue can learn to move side-to-side.
- Offer food such as bread or cheese sticks at the molar level to encourage the child to chew with the molars and develop a rotary chew.
- When beginning with an open cup, start with thicker liquids which move more slowly and are easier to control (e.g. fruit smoothie, drinkable yogurt).
When to Seek Help
If at any stage you feel your child is not able to progress with eating, contact your pediatrician or gastroenterologist to discuss your concerns. You may be referred to early interventionists specializing in feeding such as occupational therapists, speech and language pathologists, or nutritionists. Interventionists should be experienced and/or credentialed in working with children with feeding issues. Your child may need help if he:
- continues to resist eating
- will only eat certain foods or textures and nothing else
- is not gaining weight appropriately
- frequently coughs or chokes on foods or liquids
- has frequent, unexplained fevers or pneumonia (signs of aspiration).
Mealtimes are about more than nutrition or developmental skills; mealtimes are a family time. Make the most of every mealtime to enjoy building family relationships through discussing the day’s activities, sharing the joys and challenges of everyday life, and appreciate the moments of being together.
Satter, E. How to Get Your Kid to Eat… But Not Too Much. Bull Publishing, 1987.
Saenz M.D., Rebecca, B. Primary Care of Infants and Young Children with Down Syndrome. University of Mississippi Medical Center, Jackson, Mississippi American Family Physician
Medlen R.D., Joan E.From Milk to Table Foods: A Parent’s Guide to Introducing Food Textures. Disability SolutionsJanuary/February, 1999 Volume 3, Issue 3, p. 1, 3-9.
Every child is unique and develops at his or her own pace. This is especially true of children with Down syndrome whose rate of development is even more variable. Every time you take your child to the pediatrician, the doctor checks to see how your child is doing in the areas of intellectual, social-emotional, communication, and motor development.
Instead of focusing on a particular developmental milestone, attention is paid to the overall pattern of development reflecting the child’s strengths and areas of need. Intellectual delays are usually mild to moderate. (IQ or score achieved on an intelligence test identifies learning potential within the 70–40 range.) Children with Down syndrome tend to have higher abilities in the areas of social and adaptive skills.
Early Intervention to Improve Development
The first years of every child’s life are a critical time for optimal development. Early intervention can maximize each child’s potential. People who help with early intervention include:
- Early childhood educators
- Health care professionals
- Occupational therapists
- Physical therapists
- Speech and language pathologists
- Social workers
Other specialists are involved as needed. The goal of early intervention is to build on a child’s strengths to facilitate further development and to prevent patterns of development that could lead to orthopedic or emotional or behavioral difficulties.
Language and social skills. Children with Down syndrome develop language skills at a slower rate than many children. Some children with Down syndrome also have to deal with some structural problems, such as limited tongue movement, that may interfere with early sucking, swallowing, and eating. Therefore, children with Down syndrome benefit from early help with eating. This will prepare them for speech and language development.
These early skills are called oral-motor skills. Both occupational and speech and language pathologists can help your child with the movement and cognitive skills needed to acquire language. These early interventions with oral-motor skills and early language can set the stage for your child to interact cognitively, emotionally, and behaviorally with other children. You may be encouraged to try oral communication methods, combining speech with simple signs, to further your child’s communication efforts.
Movement development. Many infants with Down syndrome appear to be floppy or have looseness of the muscles and joints, making it harder for them to move freely, roll, sit, stand, and eventually, to walk. The floppiness is called hypotonicity. Some of the floppiness is related to excessive joint hypermobility and ligament laxity.
Children with Down syndrome may appear weak and unable to initiate typical infant movements, such as kicking and reaching. But early intervention by physical and occupational therapists will help a child learn to gain head control, roll, sit, stand, and walk. Each child with Down syndrome will move through the developmental stages at his or her own pace, but therapy will provide the encouragement for children to actively engage in gross motor activities.
Early therapeutic activity decreases the chance of developing orthopedic problems that could interfere with movement later in life. The therapists work with each child individually and in group activities to develop motor control through play and some focused exercises. Learning through gross motor play can also improve aspects of your child’s cognitive skills, such as the ability to focus, develop persistence, get a sense of cause and effect, and explore or develop curiosity.
Parents and extended family members are a very important part of each child’s early intervention activities and programs. Speech and language and physical and occupational therapists, as well as learning specialists, will work with both you and your child so the exercises or activities are fun and effective when incorporated into daily life.
Down syndrome is a genetic variation that affects one out of 800 to 1,000 babies born in the United States. More than 350,000 people live with Down syndrome in the United States. Although all children are unique in their patterns of development, children born with Down syndrome learn differently. They have more variations in their intellectual, language, and movement development.
Symptoms of Down Syndrome
The symptoms of Down syndrome can vary a great deal. However, these are some of most common symptoms of Down syndrome:
- Decreased muscle tone and loose joints
- Upward slant of the eyes
- Flattened face
- Depressed nasal bridge with smaller nose
- Mental retardation
- Small mouth
- Abnormally-shaped ears
Some children with Down syndrome also have visual, hearing, heart, and gastrointestinal problems. Many of these can now be corrected through medical interventions. With appropriate medical care, early intervention, education, and support throughout their lives, many adults with Down syndrome enjoy meaningful work and recreational opportunities. They may even live independently within the community.
The Genetics of Down Syndrome
The first comprehensive description of children with Down syndrome was published in 1866 by John Langdon Down, MD. His description still guides doctors who often make the clinical diagnosis shortly after birth. Because there is considerable variation in physical characteristics among children with Down syndrome, doctors confirm the diagnosis with genetic or chromosomal testing.
The genetic basis of Down syndrome was identified in 1959 by Jerome Lejeune and colleagues who found that Down syndrome was due to triplication of the 21st chromosome.
We are born with 46 chromosomes. Half are contributed by the mother and half contributed by the father, to equal 23 pairs. In Down syndrome, though, there are 47 chromosomes with an extra, or third, copy of chromosome 21, instead of two. This is why the scientific term for Down syndrome is “Trisomy 21.”
Today, through a blood test, physicians look at the karyotype to look for genetic abnormalities. A karotype is created by staining the chromosomes with dye and photographing them through a microscope.
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