Last week I talked about the Down syndrome behavioral phenotype and what it is (and is not). That cliffhanger brought us here wherein I’ll discuss characteristics of the phenotype in four major areas: cognitive, speech and language, social, and motor skills.
Hyperlinked text below will take you to websites with definitions, and often usable resources. Brace yourself and pour a cup of coffee; this is a long post full of information. I hope you’ll find something valuable here.
Cognitive Characteristics – related to gaining knowledge and understanding
- Processing information presented visually (information seen)
- Visual imitation – imitating actions one observes others doing
- Nonverbal intelligence – solving problems using manipulatives (hands-on problem-solving), but not using words
- Processing information presented auditorily (information heard)
- Spatial memory – making sense of objects in space (e.g., the classic “memory” card game, navigating an unfamiliar place)
- Executive functions, which control and regulate other abilities and behaviors (e.g., working memory, attention, ignoring distractions, and shifting attention to new information)
Speech and Language Characteristics
- Using gestures (pre-speaking), generally, especially in drawing someone’s attention to something
- Frequency of non-speech sounds in infancy
- Understanding what is communicated to them (receptive language) consistent with level of cognitive ability
- Strength in pragmatics – using language socially (e.g., taking turns in conversations, using appropriate tone for a situation)
- Using gestures (pre-speaking) to request things (e.g., toys, food)
- Repeating sounds or words (vocal/verbal imitation)
- Ability to express thoughts, ideas, and feelings (expressive language), relative to cognitive ability
- Use of correct grammar and syntax (word arrangement) in speaking
- Time it takes to express oneself
- Articulation and intelligibility of speech, affected by physical characteristics, difficulty coordinating muscles, and occasional hearing loss caused by fluid in ears
Cognitive & Speech/Language Applications
The ability to communicate does not reflect level of cognition. In other words, people with DS can process information at levels beyond what they may be able to effectively communicate. So, always presume competence. Within safety constraints, assume an individual can do something until they prove you wrong. And if they can’t *yet* do that thing, put supports in place to help them achieve the skill. One of Grace’s first therapists used to tell me, “Keep shoveling it in. One day, she’ll spit it back out.” That basic advice has proved invaluable.
Specifically related to communication, capitalizing on strengths in imitation and visual learning can help. My first piece of advice for new parents of children with DS is to start using sign language with your baby as soon as they begin looking at you. Babies with DS are shown to be very socially engaged with caregivers. Sign language is a visual means of communication, which utilizes strengths in visual learning and encourages expressive communication before speech develops into a reliably usable tool. Years after we’ve abandoned the regular use of signs with Grace, I still use some signs and gestures to help her when she is having difficulty understanding a command or request.
Choice boards are another visual tool that assist in expressive communication. Multiple step activities, routines, or expectations can be visually reinforced using visual schedules. These types of visual supports are commonly referenced as being assistive for individuals with autism. Even without being dually diagnosed with autism spectrum disorder (ASD), people with DS benefit from these resources because several aspects of the DS behavioral phenotype, including strength in visual learning, comfort in routine, and difficulty in expressive communication, are shared with the ASD behavioral phenotype.
- Motivated by social interaction – from a young age, people with DS are more motivated by interacting with people than by interacting with objects (e.g., toys).
- Interested in engaging socially with others
- Have positive, reciprocal peer relationships at school-age
- Use social skills to compensate or distract from areas of weakness (e.g., engaging a teacher or therapist socially to avoid a task that is challenging or undesirable)
- Communication challenges may impact ability to verbally communicate with peers efficiently (i.e., peers may not allow enough time for person with DS to express themselves effectively)
- May not limit social interest (e.g., hugging in inappropriate situations)
The social piece of the phenotype is a prominent strength. Meaningful relationships are important, and what the research describes as the agreeable, sociable nature of many people with DS lends itself to such relationships. Social strengths in individuals with DS can not only enhance quality of life, but can also be used when working to improve areas of challenge.
I have always been impressed by Grace’s levels of empathy and her social intelligence. She is very attuned to other peoples’ feelings and values relationships with family and peers above most all things. When Grace started giving her physical therapist (PT) a hard time during sessions at preschool, her therapist allowed her to bring a friend from class with her, which did seem to promote cooperation. We think she just didn’t like being pulled away from class and missing out on time with friends.
We must also be aware of attempts to use social engagement as a means of task avoidance. You know what I’m talking about, right? The moment when you ask a child with DS to do something difficult, and they smile that sweetest smile at you or draw your attention to something across the room, or tell a joke…. Research indicates that children with DS commonly use social skills in these task avoidance situations and are also more likely to ask for help in tasks. I see this in Grace, as she will often ask for help before even attempting a task herself. Adapting a task to promote success can help.
Using visual supports and manipulatives (objects that can aid in visualization and nonverbal problem solving) can bring areas of strength to tasks that may involve domains of weakness (e.g., expressive language and math skills that require working memory). I keep this in mind while building The Extra Life Pinterest boards with learning activities.
Motor Skill Characteristics – movements of muscles to perform a specific action
- Gross motor skills, especially running speed and agility, comparable to typically developing peers in late childhood
- Visual-motor control (eye-hand coordination)
- Delays in progressing through gross motor skill milestones (i.e., sitting, crawling, walking), starting in infancy
- Slower, less efficient movements in infancy
- Oral motor skills such as speech and feeding affected by atypical anatomy (e.g., smaller oral cavity), protruding tongue, difficulty closing lips, atypical tongue motion, and lack of jaw control
- Difficulty making precise movements with limbs and fingers (lack of muscle control)
- Difficulty in motor planning – planning movements to achieve a task, such as using a utensil for eating
Motor and Speech/Language Applications
Organized therapy should not dominate the life of someone with DS, but speech and motor development can benefit from formal therapy with therapists as well as informal therapeutic activities in play and daily routines. At the NDSC convention last summer, many of the presenters I watched had older children with DS. Every one of them emphasized the importance of continued speech therapy throughout school. At the time, I thought Grace’s enunciation was great, and I wondered if she would really need that continued support. As I learned more, I realized that being able to understand the word she says is just one piece of a complicated puzzle involving the correct use and order of words in sentences. The amount of time she takes to express a thought, and appropriate social applications of language are also important skills that I see now are important to work on into adulthood.
Regarding motor skills, honestly, after Grace could walk independently and navigate stairs safely, PT took a back seat for me. But the muscle weakness and dexterity issues pop up in often unexpected ways. Right now, Grace is working with a PT on strengthening to help with toilet training (post forthcoming). And her lack of balance still makes me nervous when she’s on playground structures, surrounded by kids who are larger and more energetic. Her PT as school works on these skills. She also hones them at dance and gymnastics and through play at home.
As we approach kindergarten, I’m impressed with Grace’s fine motor skills in using utensils for self-feeding. Now, we focus on self care (bathing, toileting, clothes fasteners) to promote independence as well as cutting and pre-writing in preparation for school.
It’s wonderful and necessary to celebrate when obvious goals are achieved! Based on the phenotype, we know there is continued room for support that can improve quality of life. As children approach school age and progress through the school system, I’ve heard parents lament the difficulty in getting their child necessary therapeutic services. Research on the DS behavioral phenotype supports the need for continued intervention to optimize opportunities for independence.
Did you make it through?
That was quite a bit of information! I hope the list format and blatant overuse of parentheses helped to condense it into a manageable, useful portion. If you’ve made it this far, thanks for sticking with me.
Moving forward, I’ll build on what we know about the DS behavioral phenotype to discuss more specific applications. Until then, subscribe to the blog below to receive the latest posts in your inbox, follow The Extra Life on Facebook, and check out some practical resources on The Extra Life Pinterest boards.
The Emerging Down Syndrome Behavioral Phenotype in Early Childhood: Implications for Practice. By: D. Fidler
Down Syndrome: Cognitive and Behavioral Functioning Across the Lifespan. By: J. Grieco, M. Pulsifer, K. Seligsohn, B. Stotko, and A. Schwartz