Students with Fragile X Syndrome in Recess.
Lucas, Matthew D.
Students with Fragile X Syndrome in Recess.
Introduction
It is possible that many education professionals have heard of
Fragile X Syndrome but know basically nothing about the disorder. It is
very possible that teachers will work with children with the disorder at
some point during their career. What should these teachers know about
the disorder? What are characteristics of children with the disorder?
What are good practices for working with children with Fragile X
Syndrome? What are poor practices for working with children with Fragile
X Syndrome? Specifically for this manuscript, because of the benefits of
recess that are noted, the question to be addressed is: What are
appropriate modifications to activities for children with the Fragile X
Syndrome in the recess setting?
Definition, Signs, and Symptoms of Fragile X Syndrome
Fragile X Syndrome is a "genetic condition that causes a range
of developmental problems including learning disabilities and cognitive
impairment" (National Institutes of Health: Genetics Home Page,
2016, p. 1). Usually, males are more severely affected by this disorder
than females (National Institutes of Health: Genetics Home Page, 2016).
A problem with a specific gene that normally makes a protein needed for
brain development causes the disease. A person can only make little or
none of the protein as a result of the problem with the gene. This
causes the symptoms of Fragile X (Cleveland Clinic: Diseases and
Conditions: Fragile X Syndrome, 2016)
Although signs and symptoms vary greatly, they often include many
of the following according to the National Institutes of Health. It
should be noted that, as alluded to earlier, many of the symptoms are
often milder in females than in males.
* Intelligence and learning
** These problems can range from the mild, such as learning
disorders or problems with mathematics, to the severe, such as an
intellectual or developmental disability. ** Individuals with the
syndrome also have attention disorders, hyperactivity, anxiety, and
language-processing problems. A person with Fragile X may have more
capabilities than his or her IQ (intelligence quotient) score suggests.
* Physical
** Most infants and younger children with Fragile X don't have
any specific physical features of this syndrome. When these children
start to go through puberty, however, many will begin to develop certain
features that are typical of those with Fragile X.
** Physical features include a narrow face, large head, large ears,
flexible joints, flat feet, and a prominent forehead.
** These physical signs become more obvious with age.
* Behavioral, social, and emotional.
** Most children with Fragile X are afraid or anxious in new
situations.
** Individuals may have trouble making eye contact with other
people.
** Boys, especially, may have trouble paying attention or be
aggressive.
** Girls may be shy around new people. They may also have attention
disorders and problems with hyperactivity.
* Speech and language.
** The children may have problems speaking clearly, may stutter, or
may leave out parts of words. They may also have problems understanding
other people's social cues, such as tone of voice or specific types
of body language.
** Girls usually do not have severe problems with speech or
language.
** Some children with Fragile X begin talking later than typically
developing children. Most will talk eventually, but a few might stay
nonverbal throughout their lives.
* Sensory
** Many children with Fragile X are bothered by certain sensations,
such as bright light, loud noises, or the way certain clothing feels on
their bodies.
** Sensory issues as a result of items such as bright light, loud
noises, or the way certain clothing feels on their body, might cause
them to act out or display behavior problems (National Institutes of
Health: What are the symptoms of Fragile X Syndrome, 2016, p. 1).
Prevalence of Fragile X
The percentage of children with the syndrome is relatively low.
However, Fragile X is the most common known cause of inherited
intellectual disability (Center for Disease Control and Prevention:
Fragile X Syndrome, 2016). One in 4000 boys are born with the disorder.
At a rate less frequent, one in 8000 girls are born with the disorder
(March of Dimes: Fragile X Syndrome, 2014). This is roughly one in every
5300 children. In Virginia elementary schools with 500 students, roughly
one in eleven schools at any time will have a student with Fragile X
Syndrome.
Benefits of the Recess Setting for Students with Fragile X
Recess is basically a planned, supervised activity allowing time
for active, free play. It is suggested that kids participate in a
minimum of 20 minutes of recess a day. Recess should not be taken away
as a consequence of punishment. Simply stated, the benefits of the
recess setting are high for all children. Included in these benefits are
both physical and social and emotional benefits (Praxis Physical
Education: Practice and Study Guide: Benefits of Recess for Elementary
School Children, 2015). In terms of general physical benefits, recess
has been shown to lead to an improvement of general fitness and
endurance levels for children (Kids Exercise, 2009). Also, it is
important to remember that increased out-of-school activity levels is
evident as children usually are involved in physical activities on days
in which they participate in in-school physical activities (Dale,
Corbin, & Dale, 2000).
More specifically for children with Fragile X are the benefits
recess can have on intelligence and learning, physical, behavioral,
social, speech and language, and sensory characteristics. Following the
discussion of characteristics of the disorder are basic methods to
address these characteristics in the recess setting.
Intelligence and learning
Most children with Fragile X have some type of intelligence and/or
learning problems. As noted, these problems can range from the mild,
such as learning disorders or problems with mathematics, to the severe,
such as an intellectual or developmental disability. Learning problems
can stem from attention disorders, hyperactivity, anxiety, and
language-processing problems. Modifications for the recess setting may
include the following:
* Clearly explain and display the proper manner to use
equipment--such as swings.
* Explain items in a very basic format and should be done daily.
This is beneficial for all students.
* Try to provide enough activities/equipment to limit waiting time.
* Provide a peer-partner for the student with Fragile X to help
display equipment and/or participate in activities. This may reduce
hyperactivity, anxiety, and possibly language-processing problems.
Physical
In terms of physical characteristics, most younger children with
Fragile X, as noted, don't have any specific physical features of
this syndrome. When these children start to go through puberty, however,
many will begin to develop certain features that are typical of those
with Fragile X. These features include a narrow face, large head, large
ears, flexible joints, flat feet, and a prominent forehead. As these
characteristics do not usually develop until after elementary school, no
modifications would probably need to be made as a result of them in the
recess setting. Flat feet may be a concern for older children in
elementary school. Modifications for a child with flat feet may include:
* Organize non-competitive games.
* Cut down on activities that bring pain (heavy running and
jumping) and avoid prolonged walking and standing to give arches a rest
(Foot Health Facts, 2016)
Behavioral (social, and emotional)
Most children with Fragile X have behavioral concerns. These
children are often afraid or anxious in new situations. They may have
trouble making eye contact with other people and may have attention
disorders and problems with hyperactivity. Instructional methods, noted
by Lucas and Long (2010) related to recess for children with emotional
disturbances, can also be used to address these characteristics and
ensure participation in recess. These may include the following, plus
additional methods:
* Explain the activity to the student personally emphasizing the
"fun" in an activity.
* Organize all games that require teams.
* Do not allow students to "pick" teams in group
activities.
* Establish clear rules.
* Reduce the number of players on a team.
* Possibly assign a peer that can answer questions for the student.
* Encourage no score keeping (p.28)
* Provide encouragement to all students (Strategies for Teaching
Students with Behavioral Disorders, 2007).
* Hold the same behavioral expectations for all students (Winnick,
1995).
Speech and language
In terms of speech language, as noted, most children with Fragile X
may have problems speaking clearly, may stutter, or may leave out parts
of words. They may also have problems understanding other people's
social cues, such as tone of voice or specific types of body language.
Also, children with Fragile X often begin talking later than typically
developing children or stay nonverbal throughout their lives.
Instructional methods, noted by Lucas and Watson (2013), related to
recess to address these speech language characteristics and ensure
participation in recess may include the following:
* Provide time for delayed responses and verbal rehearsals (Seaman,
Depauw, Morton, Omoto, 2007).
* Encourage and allow students to point, gesture, or use
explanations and similar words to increase the listener's
understanding of expressive language (Seaman, Depauw, Morton, Omoto,
2007).
* Use small, stable groups (Winnick, 1995).
* Use familiar words and supplement with verbal cues (use a variety
of words to describe the same movements if needed) (Seaman, Depauw,
Morton, Omoto, 2007).
* Provide directions that are simple and concrete (Seaman, Depauw,
Morton, Omoto, 2007).
* Provide a comfortable environment.
Sensory
Many children with Fragile X are bothered by certain sensations,
such as bright light, loud noises, or the way certain clothing feels on
their bodies. Such issues may cause some children with Fragile X to act
out or display behavior problems. Instructional methods related to
recess to address these characteristics may include the following:
* Provide an environment with lighting that is neither too dark nor
too light.
* Provide an environment that is not too loud. This may be
difficult to address in the recess setting but may be more possible if
the student is not in a large group.
* Provide a comfortable temperature.
Conclusion
Many children with Fragile X Syndrome are in schools today. The
benefits to these children, including children with disabilities, are
noteworthy. It is very possible that any teacher will have the
opportunity to work with a student who has Fragile X. This paper has
addressed characteristics of children with the disorder and effective
practices for working with children with Fragile X Syndrome,
specifically in the recess setting.
References
Center for Disease Control and Prevention: Fragile X Syndrome
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Matthew D. Lucas, Ed.D., C.A.P.E., Associate Professor, Department
of Health, Athletic Training, Recreation, and Kinesiology, Longwood
University
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