Theresa Iacona (Ph D) Down syndrome NSW Newsletter Winter 2008
Most people with Down syndrome experience some degree of communication impairment, although the extent can vary dramatically across individuals. Areas of communication that cause difficulty include articulation, fluency and language. Interestingly, the functional and social uses of language appears to be a relative strength for people with Down syndrome, although some may experience difficulties arising from speech or language impairments. The focus of this article is the profile of language ability in people with Down syndrome, and recent evidence for continued learning into adulthood
|During the 1970s and the 1980s, there was much research effort into identifying language patterns of children with Down syndrome. There was also some debate about whether their language could be described as delayed (that is, the same as normal development, but behind) or different (that is, they were doing something different to that seen in normal development). Jon Miller has summarized much of this early work. He noted that, at least in terms of language production, when compared to children of similar IQ levels or stages of language development, children with Down syndrome do not do anything different. Hence, in terms of the order in which language structures developed, and the relationship between the number of words combined and grammatical endings used, there was no distinct Down syndrome pattern. This finding seemed to support the notion that language development in Down syndrome is delayed, but not different to that seen in children without developmental disability.
Some of these early studies have indicated, however, that there does seem to be something different about language development in children with Down syndrome in terms of two patterns. The first pattern is a mismatch between aspects of language development. In particular, children with Down syndrome have been shown to have comprehension skills that are more advanced than their production skills. This mismatch appears to persist from early childhood through to adulthood. Within comprehension, a developmental mismatch has been found with understanding of vocabulary appearing to be an area of strength while understanding a sentence and grammatical structures falls behind.
An important implication of this pattern is that in order to obtain an accurate profile of the comprehension skills of children and adults with Down syndrome, testing must include comprehension of vocabulary, grammar and sentences, rather than only one of these.
Theresa Iacona (Ph D) Down syndrome NSW Newsletter Winter 2008. The second distinct pattern found in children with Down syndrome is the occurrence of plateaus in language growth: that is where development seems to slow right down and even come to a stand still for an extended period of time. The first plateau occurs in developing single words.
Development at the point of more complex grammar and sentences has been that even if growth continues, it appears to be at a slow pace. The danger is that the child will fail to catch up sufficiently to allow the development of fully mature, or correct and complete sentence production. Hence, it may be that these children and adolescents miss a critical period. An unfortunate result of Fowler’s work has been the interpretation that language development ceases in late childhood or adolescence in people with Down syndrome.
Factors contributing to difficulties
A number of factors have been explored as potentially contributing to the language delays experienced by individuals with Down syndrome. In addition to the presence of intellectual disability, these include the frequent occurrence of hearing impairment, slow brain growth, articulation difficulties, and environmental factors. None of these factors (other than intellectual disability) appear to account fully for the particular difficulties that people with Down syndrome have with language development, particularly with grammar and syntax comprehension and production.
What could be influencing language development are problems with remembering and processing speech. Speech is perceived auditory (through the sense of hearing), and occurs as a sequence of sound units. There is a great deal of research evidence that processing such auditory and sequential information is particularly difficult for people with Down syndrome and results in them having difficulty remembering sequences of spoken information – referred to as auditory short term memory. This ability is often tested by having the person repeat increasingly long series of digits. Most people with Down syndrome are unable to remember more than 3 units, compared to the average of 7 for people without disability. Research has shown that assessment tasks that over-tax an individual’s short-term memory may fail to show a true picture of the person’s language skills. Also, a recent study by Robin Chapman and her colleagues showed that adults and adolescents with Down syndrome tended to use more complex grammar and syntax in shorter utterances than in longer ones. This result suggested a potential trade-off between complexity and length caused by reduced auditory shortterm memory. Therefore, the earlier studies may not have provided a true indication of language skills in children with Down syndrome.
|Preschool children with Down syndrome appear to experience some difficulty with the emergence of spokenwords. The teaching of signs has found to assist with thetransition to a sizeable spoken vocabulary, with the use osigns often dropped as spoken word production takesover. A second plateau can appear in moving from singleto 2-word combinations. In children without disabilityonce their spoken vocabulary reaches about 50 wordsthey start using 2-word combinations (e.g. “more apple,””go shop,” “big dog”). Children with Down syndrome, onthe other hand, often don’t start combining words tiltheir vocabulary reaches around 200 words. The use osigns or aided augmentative and alternative communicationsystems (e.g. picture boards or electronic devices withpictures) have been found to assist children in overcomingthis apparent hurdle from single words to word combinations.
A developmental plateau that has caused particular concern over the potential for continued language growth wasdocumented by Anne Fowler and colleagues. Longitudinastudies, whereby language development is followed overperiod of time, provide a means of identifying patterns olanguage development. These researchers conducted suchstudies, beginning with Rebecca, who was assessedmonthly from the age of 51 to 89 months (approx. 4-7years) and then every 6 months up until 108 months (9years). Rebecca was tested as having an IQ of 57. Sheshowed relatively rapid language development up until thepoint at which she was combining words, and also usingsome word endings (e.g., the “s” at the end of a word tomark plurality – cups). This stage of language developmentmarks the beginning of the use of more complex sentences, such as through elaborating various parts of thesentence, using more sophisticated word endings and developing the verb system (e.g., “I run,” “he runs,” “she is going”)
Fowler and her colleagues found that Rebecca’s progressslowed right down just prior to developing these morecomplex language forms. These and other researchershave found a similar pattern in other children with Downsyndrome. The concern with what appears to be arrested language sample, which are then analyzed for the complexity of the language used.
It seems that trying to engage a child or adult in a conversation will result in shorter and less complex sentences than occurs when they are asked to tell a story. A way of eliciting stories in research has been showing the person a wordless picture book and asking him/her to tell the story.
Further research by Robin Chapman and her colleagues has also shown continued language growth from 8 years to 20 years. These studies provide evidence to argue against a ceiling effect in language development. More research with older adults with Down syndrome is needed to provide greater understanding of their continued language learning.
Research has demonstrated that individuals with Down syndrome do show differences in their language profiles in comparison to typical language development. These differences include mismatches in areas of development and periods of slowed growth. For a while, there was a belief that language growth ceased in late childhood or adolescence. Recent research, although to-date addressing only early adulthood, has provided evidence of continued language development. In fact, Ann Fowler, whose work has often been cited as evidence of a ceiling in language development, argued that in 1995 researchers were only just beginning to develop an understanding of the learning potential of people with Down syndrome. She also predicted the potential for young adults with Down syndrome to exceed prior expectations as they are given greater educational and other opportunities, and research methods improve. Such continued development requires documentation through research that takes account of the potential for characteristics, such as problems with auditory short term memory, to confuse results from language testing, and also includes true measures of underlying skills.
For aunts, uncles and other relatives
Aunts and Uncles of children with Down Syndrome are also trying to get more information about the new child in their family. We cannot stress enough how important it is for family to support the new parents at his time. This is a frightening time for the new parents and they often wonder how their family will treat the new baby. Showing how much you love them and their new baby will help to alleviate these fears; pick up the baby, fuss over the baby, play with the baby.
Sometimes you may not know the right thing to say or what you say is in fact, the wrong thing. We would like to share some suggestions about what to say and what not to say.
The following suggestions are based upon the input of many parents of children with Down Syndrome.
THINGS NOT TO SAY
• “I’m sorry” or any form of pity Pity is not what new parents want or need. What they need is love and acceptance of their new baby.
• “God gives special parents special children” or any variation. The new parents probably don’t feel very special right now. Also, some parents may be a little mad at God. Trying to make them feel better with words like these might be appreciated by some parents and not by others. It is best to avoid this.
• “They are such loving children.” This is a stereotype of children with Down Syndrome and demonstrates that you really don’t know much about Down Syndrome.
•”Do they know how serious it is?” or any variation. Again, this is a demonstration of a lack of knowledge about Down Syndrome. Some parents may be angry and want to reply with, “How serious is it? Well, every single cell in his body has an extra chromosome…is that serious enough?”
• “You are handling this better than I could.” This is an invitation for the new parents to say something like, “No, you would be wonderful.” Suddenly, the conversation has switched to you instead of the parents and their new baby. Plus, you don’t really know how the new parents are handling it, do you?
THINGS TO SAY:
These are the things parents have found comforting or made them feel good:
• “Congratulations” They just had a baby! What better response to show that you love them and their baby than to say congratulations. It made us feel like ‘normal’ parents when someone said that to us. If the hospital allows it, a bottle of champagne could be greatly appreciated.
• “He/She looks just like you” The baby probably does look like someone in the family. All of the baby’s genes are from the family. My son looked exactly like my daughter did when she was just born.
• Friends and family who actually ‘did’ something like reading about the disability (or find information on the web!) This really means something to the new parents. It shows love and concern for the baby. The day after we told Mikey’s uncle about Mikey having Down Syndrome, he came to visit us with a handful of papers dealing with Down Syndrome he had gotten from the web. That showed us that he really cared.
• Offer to baby sit It is a fear of the new parents that their family will not accept the new baby. By saying something like, “Well, when are you going to let me baby sit?” you are showing the new parents that you want to be part of the baby’s life. This will be a great relief to them.
• “He/She will do fine” The new parents are probably pretty worried. They might not know much about Down Syndrome and they maybe concerned about possible medical problems. Having a positive attitude will rub off on them. They don’t need pessimism or negativity from their loved ones.
• “We’ll all learn from him/her” This is another good way to show that you intend on being part of their lives. After all, how can you learn from their new baby if you are ashamed of him/her? Their new child will be an opportunity to learn about love, acceptance, and respect for the disabled.
• “We will always be here to help.”
Another very good way to show that you are going to be there. Let the new parents know that you intend on being part of their lives.
Working in positive partnership with yourchild’s school
Voice March 2010. Down Syndrome Victoria and Down Syndrome NSW Members Journal
“Developing a positive partnership with your child’s school is the foundation of a successful school experience for your child and family”
The two essential ingredients of this partnership are developing a relationship in a way that works best for you and for the school, and developing good communication skills. As with any other relationship, a positive partnership with your school requires mutual respect, listening skills, empathy and communication
Parents sometimes feel that their input is overshadowed by the authority of the professionals they are dealing with. Remind yourself that your family has a recognized natural authority in the life of your child. You care more about your child than others, no matter how committed those others may be, you have a greater stake in the outcomes than anyone else except the child, you have a responsibility for the wellbeing of your child, and you are the expert on your own child. You are the expert because there are many things about your child that only you, as their parent, know: you spend the most time with your child, you see them in a whole range of situations, and you know their strengths and weaknesses, their likes and dislikes.
The teachers and other education professionals you work with bring their specialist expertise to the partnership. In order to achieve the best outcomes for the child, the input from the family and from the education professionals is equally relevant. This is why it is so important to build a good partnership with your chosen school.
In her book Developing inclusive school communities, Fae Kennish describes five strategies to help build an effective and productive partnership: Establish yourself: be visible and accessible by participating in school functions or activities whenever you can. Offering to help and being on site can often be an ice-breaker, and lets the teachers get to know you and you them. It is also a good informal way to observe and get a feel for what’s happening in the school. Try some of the following: walk your child to the classroom, volunteer for work in the classroom or elsewhere in the school, attend school council meetings.
Become a resource: ideally you want the teachers to feel that they can call on you for input should something come up that they are unsure of. You need to be able to give this input in a supportive manner and without undermining the teacher’s professional role.
Be open and honest and give them information when it is asked for. Offer advice and suggestions in response to issues that are raised – do not tell the how to do their job.
Ask if they would like to try any resources or materials you may have used at home or are familiar with.
Be prepared to seek out resources, materials and information that may be helpful and pass these on.
Consider what you know about the ways in which your child learns. Information about your child’s strengths, learning preferences and interests can provide the teaching staff with valuable reference points.
You will often be faced with new teachers who have not had contact with your child before. Be prepared for the fact that you may have to start from scratch and tell the same thing to teachers year after year.
It may be useful to offer a printed introductory profile of your child. One example can be found in Education support pack for mainstream schools produced by the UK Down Syndrome Association, downloadat: