Chapter 2: Down Syndrome
Our Special Olympic Superstar Athlete with Down
Syndrome is Joseph
19 year old Joseph has been actively
involved in sports from a very young age. He finds the benefits of sports to be
a huge influence in his life. He states "Swimming is good. I'm good at it.
I like diving in and relays. I swim about 5 times a week and my best mate is my
coach John. I like winning medals at galas. I swam in Rome Scotland , Wales ,
and different places in England Pila ,
Italy Chelsea
Diagnosis
Down
syndrome is a genetic disorder that occurs due to excess of chromosome 21. It
can occur in three different ways. The first way which accounts for 95% cases
of down syndrome is that every cell throughout the body has an extra copy of
chromosome 21, this is called Trisomy 21 Down Syndrome. The next type of down
syndrome is called Translocation which accounts for 3% of cases. In this
instance, extra material attaches and/or replaces a portion of chromosome 21.
The last way Down Syndrome presents itself is through Mosaicism, in which there
is an extra copy of chromosome 21 in certain cells in the body, but not all
cells. This accounts for 2% of Down Syndrome cases. (Bowman-Kruhm, 2000) This disorder is a developmental disability
which impacts intellectual capacity as well as physical capabilities. Down
Syndrome affects muscle strength, muscle tone, joints, and overall physical
appearance and increases health risks including diabetes, epilepsy, hypothyroidism
and eye, ear and heart problems.
The
incidence rate for Down Syndrome worldwide is approximately 1 in 800. Over the
past few decades huge progress has been made in the knowledge of developmental
disorders, Down Syndrome in particular. (Down Syndrome Foundation, n.d.; http://www.alzheimertoronto.org/ad_riskFactors_DownSyndrome.htm)
This
developmental disability can be tested for through a blood test, while a mother
is pregnant between weeks 10 and 18. Ultrasounds during later stages of the
pregnancy can also give indications as to whether their baby has Down Syndrome. Health care providers will measure the
thickness at the back of the baby's neck through the ultrasound. All babies
have some fluid at the back of their neck, but in individuals with Down
syndrome there is a greater amount of fluid, causing the space to look thicker.
Some other indicators are problems with
the heart, kidneys, or digestive system, which are more common in Down Syndrome
children. Mothers over age 35 have an increased risk of giving birth to babies
with Down Syndrome. (Bowman-Kruhm, 2000; http://www.nlm.nih.gov/medlineplus/ency/article/007561.htm;
http://www.cdc.gov/ncbddd/birthdefects/downsyndrome.html
)
 |
| Retrieving amniotic fluid for testing (http://asal-sakti.blogspot.ca/2008/12/down-syndrome-testing.html) |
Another way to test for Down Syndrome before the child is
born is by collecting a sample of amniotic fluid, placenta or umbilical cord
from the mother as these all have the same genes the child will have rather
than the genes of the mother alone. If extra chromosome 21 is present, the baby
has down syndrome. (Bowman-Kruhm, 2000; http://www.cdc.gov/ncbddd/birthdefects/downsyndrome.html
)
Once a baby
is born, a doctor or nurse can easily tell if they have Down Syndrome by their
limp body, distinctive eye shape, or single crease of the palm. When these
signs are noticed a blood sample is taken to make a definite diagnosis.
(Bowman-Kruhm, 2000; http://www.cdc.gov/ncbddd/birthdefects/downsyndrome.html;
Royston, 2010 )
Once the
baby is born, certain physical characteristics and health concerns will become
prevalent in the child.
Outward Physical Characteristics and Health Concerns
Physical
appearances of individuals with Down Syndrome do vary, but they are often
similar due to hypotonia, poor muscle tone. Some common outward physical
features are wide spaced slanted eyes, flat nose, shorter arms, shorter legs,
short neck, loose joints, eyes slanting upwards. small low set ears, broad feet,
broad hands, short phalanges (fingers and toes), single palm crease, and a
large tongue in proportion to mouth size. Due to the poor muscle tone and loose
joints, individuals with Down Syndrome have a huge range of flexibility but can
be more prone to injury for this reason, therefore they need to work hard to
develop muscle strength and protect their joints. (Royston, 2010; http://www.cdc.gov/ncbddd/birthdefects/downsyndrome.html;
http://www.mayoclinic.org/diseases-conditions/down-syndrome/basics/symptoms/con-20020948;
http://www.webmd.com/children/understanding-down-syndrome-symptoms
)
A range of
health concerns arise as they have been found to correlate with down syndrome
over the years. 50% have heart problems,
most commonly a hole in the heart also known as Atrioventricular Septal Defect.
This is caused by tissue failing to come together in the heart during the
embryonic state of life. When the tissue fails to connect, a large hole is
created between 2 chambers of the heart. The heart can in some instances begin
to heal itself, but will most likely require surgery to ensure the baby will be
able to live with a higher quality of life. (http://www.ndss.org/Resources/Health-Care/Associated-Conditions/The-Heart--Down-Syndrome/;
Royston, 2010) Over 75% of
individuals have vision problems and over 50 % have hearing problems. The risk
for diabetes also increases as well as the risk for epilepsy, hypothyroidism,
and digestive problems. (Royston, 2010)
One common
health issue apparent in up to 30% of Down Syndrome cases is atlanto-axial
instability. (Bowman-Kruhm, 2000; http://ndsccenter.org/worpsite/wp-content/uploads/2012/02/AtlantoAxial_Instability.pdf;
http://emedicine.medscape.com/article/1180354-overview)
Individuals with this instability have abnormally large spaces between the
upper vertebrae of the spine. For this reason in particular, many who fear down
syndrome children playing sports and becoming very physically active. However,
these individuals can be as active as they would like and this instability
should not limit them. As long as they wear proper equipment for sports, and
are aware of their capabilities they can keep their bodies protected. In some
cases, activities bearing a lot of weight on the shoulders should be avoided as
well as any huge spinal rotations or impact to the spinal cord that could be
caused by jumping. (Tocci, 2000)
 |
| Upper portion of cervical spinal section (http://medcarepediatrics.blogspot.ca/2013/04/atlanto-axial-instability-and-children.html) |
These are the Special Olympics complete standards on
atlanto-axial instability:
Participation by
Individuals with Down Syndrome Who Have Atlanto-axial Instability.
(article 1, Section F,
Special Olympics Sports Rules)
“In light of medical research
indicating that up to 15% of individuals with Down syndrome have a
mal-alignment of the cervical vertebrae C-1 and C-2 in the neck known as
Atlanto-axial instability, exposing them to possible injury if they participate
in activities that hyperextend or radically flex the neck or upper spine, all
Accredited Programs must take the following precautions before permitting
athletes with Down syndrome to participate in certain physical activities:
1) Athletes with Down syndrome may
participate in most Special Olympics sports training and competition, but shall
not be permitted to participate in any activities which, by their nature,
result in hyper-extension, radical flexion or direct pressure on the neck or
upper spine, unless the requirements of subsections (2) and (3) below are
satisfied.
Such sports training
and competition activities include: butterfly stroke and diving starts in
swimming, diving, pentathlon, high jump, squat lifts, equestrian sports,
artistic gymnastics, football (soccer), alpine skiing and any warm-up exercise
placing undue stress on the head and neck.
2) An athlete with Down syndrome may
be permitted to participate in the activities described in subsection (1) above
if that athlete is examined (including x-ray views of full extension and
flexion of neck) by a physician who has been briefed on the nature of the
Atlanto-axial instability condition, and who determines, based on the results
of that examination,
that the athlete does not have an Atlanto-axial instability condition.
3) An athlete with Down syndrome may be permitted to participate in the
activities described in subsection (2) above if that athlete is examined
(including x-ray views of full extension and flexion of the neck) by a physician
who has been briefed on the nature of the Atlanto-axial instability condition,
and who determines, based on the results of that examination, that the athlete
does not have an Atlanto-axial instability condition; or
4)An athlete with Down
syndrome who has been diagnosed by a physician as having an Atlanto-axial
instability condition may nevertheless be permitted to participate in the
activities described in subsection (1) above if the athlete, or the parent or
guardian of a minor athlete, confirms in writing his or her decision to proceed
with these activities notwithstanding the risks created by the Atlanto-axial
instability, and two (2) Licensed Medical Professionals certify in writing that
they have explained these risks to the athlete and his/her parent or guardian,
and that the athlete's condition does not, in their judgment, preclude the
athlete from participating in Special Olympics.”( http://www.specialolympics.ab.ca/uploads/files/Documents/Policy/M-3001%20Atlantoaxial%20Instability.pdf)
Maintaining
physical activity despite health issues is highly important for individuals
with Down Syndrome. Obesity is a growing problem amongst those who have Down
Syndrome and can lead to further health risks including hypothyroidism, and
type 2 diabetes. Physical exercise is also positive for mental well being of
individuals. (http://www.medscape.com/viewarticle/734672_2)
Affects on Mental Abilities
Down
Syndrome also slows progress mentally and therefore individuals take a longer
period of time learning how to do certain tasks such as talking, standing,
crawling, supporting body weight, grasping, and walking. (Down Syndrome
Society, n.d.)
This can be
attributed to a number of things. First of all, there is mental delay increasing
difficulty in learning new activities. The body of down syndrome babies are
usually smaller than average and due to poor muscle strength and tone, they
take longer periods of time to learn how to gain control of their muscles and
the actual activity itself becomes more difficult. Due to the amount of
individuals with hearing deficiencies, spoken cues are harder to pick up.
Despite their challenges, these children still have great potential and can
reach these stages and master activities; it will most often just take longer.
(Bowerman, n.d.; Down Syndrome Society, n.d.)
The poor
muscle tone and strength creates great difficulty in children with Down Syndrome
learning how to put themselves in good positions biomechanically. The ability
to learn new skills also takes longer due to their slowed learning. (http://dsawa.asn.au/children/recreation.html)
By
participating in physical activity, the individuals are better able to grasp
concepts at an earlier stage. They can gain better control over their body.
Physical exercise also keeps the mind stimulated and more alert leading to
better mental thinking processes. Skills are also learned during the training
stages which can have a positive impact on mental abilities.
Coaching and Training Methods
The Special Olympic Coach Oath
“In the name of all coaches and in the spirit of
sportsmanship, I promise that we will act professionally, respect others, and
ensure a positive experience for all. I promise to provide quality sports
and training opportunities in a safe environment for all athletes.”( http://sonc.net/oaths-codes/)
"Don't walk in front of me, for
I may not follow. Don't walk behind me, for I may not lead. But walk beside me
and be my friend." (http://danielaclapp.com/coaching/coaching)
 |
| Be their friend. (http://www.couriermail.com.au/questnews/south/swimmer-michael-cox-will-not-let-down-syndrome-stand-in-his-way-as-he-seeks-more-success-in-the-pool/story-fn8odwua-1226444188224) |
This is the mentality that is needed when approaching
coaching individuals with Down Syndrome. The way of teaching and coaching
people with Down Syndrome is easiest when using these 5 principles. (Tocci,
2000)
1. Divide
Big Learning Tasks into Smaller Steps
The first
is dividing learning tasks into small steps with cue words and plentiful
repetition. By doing this the individual can grasp the small concepts that lead
up to the larger ones. The repetition increases muscle memory, it associates
certain things into a group or series of events. For example, when learning to
kick a ball, first the movement of the leg would be learned and repeated many
times until the motion is well understood and mastered. The next thing to do
would be to try kicking the ball on its own. Learning how to kick the ball and
what position your foot should be in to kick it so the ball is hit is
important. Some individuals with down syndrome have bad space and depth
perception which could lead to them missing the ball altogether. Once the skill
of kicking the ball is mastered, it can be combined with the kicking skill
before including a proper pre stretch. (Tocci, 2000)
2. Repeat
Learning Tasks
This leads
right into the next coaching method of repeating instructions, repeating
demonstrations, and having the individual repeat the activity. In the soccer
example, the series of activities will need to be repeated on that day for a
set amount of time and repeated in days after to fully commit the exercise to
memory. (Tocci, 2000)
3. Patience
and Persistence are Required
Next, and
also very important is using patience and persistence while teaching sport
principles. Due to the delayed mental ability, down syndrome individuals have a
shorter attention span. Therefore tasks need to be broken down into simple
steps that can be accomplished and allow the individual to see improvement so
they are more inclined to continue working and progressing in their skill
learning. Coaches need to be engaging while continuously encouraging the
individual to work hard. Patience is needed particularly when learning a new
skill which can be incredibly difficult and when they are first unable to
achieve their goal, frustration occurs. This frustration can take over if not
dealt with in a positive manner. This is why patience and persistence are so
necessary in coaching. (Tocci, 2000)
4.
Expectations Must be Well Defined
Well
defined expectations are needed so the student knows what is expected and the
coach has a specific goal to accomplish. This allows the individual to really
focus in on the task at hand. Having set expectations enables them to know what
to do, and the feedback given by coaches should be to improve the given task
and accomplish the goal. (Tocci, 2000) For example, shooting a hockey puck into
the hockey net on the opposite side of the rink. This defines a specific goal
and can provide room for improvement (e.g. shoot the puck in the middle without
touching the edge of the net).
5.
Consistency and a Positive Approach are Critical
Individuals
with Down Syndrome have been found to like consistency, patterns and routines.
This actually allows them to be very successful in sports as they have well
established rules which are to be followed. Once the individuals have been well
taught the principles of the sport they are able to perform well within their
sport. Coaches need to help set these rules and regulations out for their
athletes.
A set
practice routine is also very helpful and practicing in game situations. The
practice routine allows the down syndrome individuals to know what is coming
next. Positive approach to teaching is needed as those with down syndrome in a
way respond much as children do. When they are taught pleasantly with patience
and understanding, they respond by having patience with themselves as they try
to learn. Coaches also need to be able to give positive feedback, helpful specific
comments to help improve and time to recuperate before trying activities again.
(Tocci, 2000)
Abilities in Designated Sports
Down
Syndrome individuals should be physically active and participate in sports and
activities appropriate for their physical well being.
One major
limitation that occurs in individuals with down syndrome is atlanto-axial
instability. Before being able to compete in the special Olympics, athletes
must have an X-ray taken to determine if they have this condition. This instability
is found within the joint connecting the atlas, the first spinal vertebrae, and
the axis, the second vertebrae both of which are in the upper cervical section
of the spine.
The rules regarding special
Olympic athletes are as follows, they are eligible to compete in the special
Olympics but may be limited as to which activities they can compete in to help
keep them safe. The full set of rules can be found above in the "Outward
Phyiscal Characteristics and Health Concerns" section.
Individuals
with down syndrome have most often been found competing in the water. The
biggest sport industry for them is in swimming. ( www.dsiso.org/) They excel in
swimming, and it is incredibly beneficial to them. Swimming involves a complete
body workout and improves cardiovascular conditioning, strengthening/toning of
muscles (incredibly important due to muscle weakness), endurance, posture and
flexibility. With swimming comes a low risk of injury. It is also therapeutic
for individuals with down syndrome as there is no stress on your bones, joints
or connective tissues due to the buoyancy of the water. Being in water also has
been found to be therapeutic as the water can help reduce stress and allow for
physical exercise without having sweat occur and become a distraction. Water
exercise has been found to have benefits on blood circulation and blood
pressure which can be issues for individuals with down syndrome as their hearts
are commonly affected. (http://downsyndrome-singapore.org/content/view/42/108/)
 |
| The love of swimming and its benefits are seen through so many individuals with Down Syndrome. (http://www.elpasotimes.com/ci_21876489/down-syndrome-doesnt-slow-swimmer-training-tourney) |
 |
Swimming is a huge part of the Special Olympics and one type of event in which Down Syndrome individuals commonly compete in.
Therefore, positive mental and physical effects can be seen through participation of individuals in the water. Their participation is incredibly beneficial and they can succeed in swimming events and feel a sense of accomplishment.
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