The T21 Difference

Susan Fawcett, PhD, RSLP/Director of Therapy, Behaviour & Family Support, Down Syndrome Resource Foundation and Glen Hoos, Director of Communications, Down Syndrome Resource Foundation

Reprinted from 3.21: Canada’s Down Syndrome Magazine (Issue #2: Let’s Talk Advocacy). Click here to download the full magazine.

The 21^st chromosome is small, but powerful. Having an extra copy of this tiny slice of genetic code, as people with Down syndrome do, can impact an individual in a plethora of ways.

Physically, people with Down syndrome may exhibit a variety of characteristics, such as a flat bridge of nose, a simian crease on the palms, extra space between the big toe and its neighbour, an extra fold of skin around the eyes, widely spaced and upward-slanting eyes, straight hair, structural differences in the mouth and ears, short stature, and more.

Healthwise, individuals with Down syndrome may be extra susceptible to a whole range of health problems, including heart defects, hearing problems, sleep disorders, gastrointestinal issues, dental problems and many other comorbidities.

Developmentally, people with Down syndrome exhibit neurological and cognitive differences, intellectual delays, behavioural and mental health issues, speech deficits, memory impairment and more.

It goes without saying that all these issues will have a major impact when it comes to learning. As parents and professionals seeking to help our daughters, sons and students reach their full potential, it is incumbent upon us to understand how each of these factors impacts their learning and development – and then craft our approach to fit how they learn best.

As we consider the learning strengths and challenges of children with Down syndrome, we will admittedly be forced to generalize. Never forget, though, that every person with Down syndrome – just like every other person – is a unique individual. Down syndrome impacts each individual differently, and any given person will have their own strengths and weaknesses that may or may not align with what we would expect. The number one rule is know your child.

Strengths of Children with Down Syndrome

In the Hebrew language, there is a pessimistic equivalent to the phrase “rose-coloured glasses”: black-coloured glasses.

Though we would hope this is beginning to change, when it comes to Down syndrome, the world sadly views the condition through black lenses. It’s so easy to focus on the negatives and only see the challenges. All too often, parents find themselves leaving doctor’s appointments and teacher meetings feeling discouraged and defeated.

However, those of us who know and love people with Down syndrome know that there are many strengths and positives associated with Down syndrome. So, let’s start there!

In fact, every IEP or learning plan should begin with a list of the student’s strengths. Success in learning isn’t just a product of overcoming or compensating for perceived weaknesses; it also requires understanding the learner’s strengths and teaching in such a way as to maximize and build upon them.

With respect to learning, people with Down syndrome often have the following strengths:

• Empathy and social motivation
• Musical/dance ability
• Gesture use
• Visual learning
• Receptive language, particularly vocabulary
• Certain aspects of literacy development

When we start from a place of strength, it will help us figure out what to do about the challenging stuff!

Challenges for Children with Down syndrome

That extra 21st chromosome has a long reach, touching virtually every aspect of a person’s being including health, physical and sensory issues, cognition, behaviour, mental health and communication. Each of these areas has a significant impact on a child’s ability to learn academic and life skills, and to participate fully in a classroom amongst peers.

Health

Often when a child struggles with learning, we assume it’s a cognitive or behavioural issue. In many cases, however, there’s a health challenge at the root of the problem. Addressing any underlying health concerns can work wonders for a child’s ability to learn and development.

Medical issues to be aware of, check regularly, and act upon quickly include:

• Vision problems
• Hearing difficulties
• Sleep disorders
• Ear and/or respiratory infections
• Nutrition deficiencies
• Gastrointestinal issues
• Dental problems
• Thyroid abnormalities
• Anemia or low iron
• High red or white cell counts
• Atlantoaxial instability

Hearing is a huge issue for kids with Down syndrome. They are very prone to ear infections, as well as fluid buildup in the middle ear. This can result in fluctuating hearing loss, which can appear an awful lot like selective listening and make it very difficult to learn.

Sleep disorders such as sleep apnea and restless leg syndrome are extremely common in individuals with Down syndrome. In fact, upwards of 80% of children with Down syndrome have at least mild sleep apnea (stoppages in breathing throughout the night, depriving the brain of oxygen and preventing the person from entering into the crucial deep REM sleep). Poor sleep affects not only the next day’s behaviour, but it also has cumulative detrimental effects over years.

It is strongly recommended that all children with Down syndrome be assessed for sleep apnea via a polysomnogram (sleep study) by the age of four. There are effective treatments, and they are easier to implement when the child is young.

Parents must be proactive about health issues. Many young people with Down syndrome can’t express when they aren’t feeling great because of communication difficulties. Visit DSRF.org for links to the Canadian Healthwatch Table and the American Academy of Pediatrics health guidelines for individuals with Down syndrome.

Physical and Sensory Challenges

Factors that affect development of gross and fine motor skills include:

• Low muscle tone
• Decreased strength
• Hypermobile joints
• Decreased activity tolerance & endurance
• Difficulty maintaining postural stability (may fatigue more quickly due to the extra effort required)

Even something as seemingly effortless as sitting takes more effort for a person with low muscle tone and a weak core.

In addition, many individuals with Down syndrome face complex sensory issues. Approximately 49% of individuals with DS experience sensory processing difficulties compared to approximately 5-16% of the general population.

Sensory processing refers to the ability to take in, organize and make sense of the sensory information received by the brain from the sensory systems, and respond appropriately. There are six sensory systems, five of which you are no doubt familiar with: sight, sound, touch, taste, and smell. The sixth is our proprioception and vestibular sense: how our body is positioned in space, and our sense of balance.

A child can have sensory sensitivity (an over sensitivity to specific sensory input), or they can be sensory seeking (under sensitive to specific sensory input). In the first case, they may be fearful or avoid certain sensations, and become easily alarmed by unexpected loud noises. In the latter case, the child will require more intense sensory input to be regulated and will seek out greater than average amounts of sensory input. For example, they may intentionally fall or bump into objects or people.

In either case, sensory processing issues are a barrier to inclusion. The child may have trouble staying in the classroom with lots of other students around.

Cognition

People with Down syndrome actually have structural and functional differences in the brain compared to typically developing people. For example:

• Decreased growth in frontal lobes. This is where our ability to plan and organize takes place. The Marie Kondo types out there have lots of neurons firing in this region! The frontal lobe is also responsible for our ability to control our impulses.
• Decreased volume in brainstem and cerebellum. These parts of the brain control basic functions of life support, as well as balance and coordination.
• Differences in temporal lobe and hippocampus structure and function. The temporal lobe controls the ability to process auditory information (what comes through the ears), including language. The hippocampus is responsible for memory.

These brain differences have significant consequences. They result in a reduced ability to process information, particularly auditory information. If a child doesn’t understand what’s going on, this may increase the likelihood of noncompliance – a very common issue for kids with Down syndrome. In a typical school day, teachers may give upwards of 300-400 questions and directions to students. That is a lot of auditory information! Add in fluctuating hearing loss and you can see the problem.

People with Down syndrome often have lower levels of intrinsic motivation. They are simply not as motivated to learn or do things. Think about your own level of intrinsic motivation. It varies; sometimes it’s low. How much harder would life be if it was low all the time? Children with Down syndrome are perpetually low on that internal drive, that “get up and go” factor. It’s on us to find ways to motivate them.

Another common issue is problems with executive functioning. People with Down syndrome may be more impulsive and may lack the ability to plan their behaviour or think through consequences before acting. This may manifest as bolting, hitting, kicking, or saying “no” every time someone asks you to do something. Kids with Down syndrome are experts at living in the moment, for sure!

Memory problems certainly contribute to learning difficulties. The differences in the brain lead to reduced encoding and consolidation of new information. Encoding refers to the process by which new information gets written into our brains; consolidation is the process by which it stays there. This explains why kids with Down syndrome need a great deal of repetition and review.

People with Down syndrome are also often hyper-aware of other people: They can be oversensitive and easily distracted by people and their emotions, making it harder to focus on the task at hand. But this last brain difference has an upside, too. Their heightened empathy may help counteract the intrinsic motivation problem; at DSRF we often find that our students are highly motivated by the approval of others.

Behavioural Challenges and Mental Health

We’re going to tackle behavioural challenges and mental health together because the two subjects are very closely linked. It is estimated that up to 38% of individuals with DS may have an additional mental health diagnosis, most of which have significant behavioural implications. Common diagnoses include:

• Autism
• Disruptive behaviour disorders
• Attention Deficit Disorder or Attention Deficit/Hyperactivity Disorder
• Social anxiety
• Selective mutism
• Obsessive compulsive disorder
• Depression
• Major depressive episode

When addressing problem behaviours, it is crucial to identify the root cause to determine the best approach. If there is an underlying physical or mental health issue, this needs to be addressed first.

Sometimes it can be difficult to determine whether a behavior should be attributed to Down syndrome or to some other cause, such as autism, as there can be a great deal of overlap. If you suspect that there may be something more going on than just Down syndrome, it is very important to consult with a mental health professional.

That being said, sometimes problem behaviour really is just problem behaviour. During cognitive work, many children with Down syndrome exhibit lower levels of task persistence, higher levels of off-task behaviours, and overuse of burgeoning social skills. This last one can be very fun, as a child may resort to the use of party tricks – what we call the “ham effect” – in order to distract from what they are supposed to be doing. Don’t let them see you laugh!

Communication Challenges

People with Down syndrome can have challenges in almost every area of speech and language development. In fact, communication may be the most universal area of difficulty, and the toughest one to address. Specific problem areas include:

• Cognitive skills (e.g., attention, memory, problem solving) – This includes deficits in auditory processing, verbal short-term memory, attending skills, reasoning and problem-solving abilities, sequencing and organization, and generalization and maintenance of learned skills.
• Expressive language – Children with Down syndrome will be delayed in their development of speech and language; development will occur more slowly. They may encounter difficulties with both individual words and sentence structure, including decreased use of function words, increased number of omitted morphemes (e.g. [-ed], plurals), decreased MLU (mean length of utterance), decreased production of connectives (e.g. and, or), and decreased production of verbs. Learners with Down syndrome particularly seem to have trouble going from the 1-2 word stage to combining words into longer sentences.
• Speech sound production and general intelligibility – Speech sound production is difficult due to the shape of the oral cavity and hypotonicity, which make some sounds harder than others (the toughest sounds are s, th, sh, ch, j, r and l). Speech intelligibility is typically moderately to severely reduced, continuing into adulthood. Longer words are harder than short ones. Hearing loss is common, which can result in characteristics of deaf speech (e.g. leaving off ending consonants as in “ca” for “cat”).
• Social communication – Though people with Down syndrome are perceived to have strong social skills, social communication is actually a major area of concern for many. Early on, young children with Down syndrome have trouble with taking turns, interacting appropriately with peers, and greetings. Later, children may continue to have difficulty with eye contact and greetings, and earlier deficits in turn-taking now surface as inappropriate conversational behaviour. Older children with Down syndrome have trouble repairing communication breakdowns, which can make it hard to make and maintain friendships or other relationships.

Using Strengths to Address Challenges

Let’s think back to the learning strengths we identified at the beginning of this article. How can we utilize those strengths to help people conquer their challenges?

For example, we saw that individuals with Down syndrome are often highly socially motivated. I have used this to my advantage many times in my work with adults. For example: “We need to keep working on your speech sounds so that your boyfriend can understand you! Or so that you can get a boyfriend! Or a job!”

Sometimes, it’s as easy as reframing the negative. ‘Stubborn’ is a word that gets thrown around a lot with respect to people with Down syndrome. But stubborn sometimes translates into a good work ethic. How might it change things if we thought of it as “persistence” instead?

The key is to stay positive – especially on the hard days. Remember that just about everything is harder for kids with Down syndrome; considering all the challenges they face, they are doing exceptionally well! Always start from a place of strength, and you can help them become the very best version of themselves.

Sources:

Bruni, M., Cameron, D., Dua, S., & Noy, S. (2010). Reported sensory processing of children with down syndrome. Physical & Occupational Therapy in Pediatrics, 30, 280-293.

Capone, G., Goyal, P., Ares, W., & Lannigan, E. (2006, August). Neurobehavioral disorders in children, adolescents, and young adults with Down syndrome. In American Journal of Medical Genetics Part C: Seminars in Medical Genetics (Vol. 142, No. 3, pp. 158-172). Hoboken: Wiley Subscription Services, Inc., A Wiley Company.

Fidler, D. J. (2005). The emerging Down syndrome behavioral phenotype in early childhood: Implications for practice. Infants & Young Children, 18, 86-103.

Fidler, D. J., & Nadel, L. (2007). Education and children with Down syndrome: Neuroscience, development, and intervention. Mental retardation and developmental disabilities research reviews, 13, 262-271.

Mahmood, Hina. Occupational Therapist, Down Syndrome Resource Foundation.

Wishart, J. (2001). Motivation and learning styles in young children with Down syndrome. Down syndrome Research and practice, 7(2), 47-51.

Yack, E., Aquilla, P., & Sutton, S. (2002). Building Bridges: Through sensory integration. Arlington, TX: Future Horizons, Inc.