Fragile X Syndrome
Definition:
Fragile X syndrome (FXS) is the most common known cause of inherited intellectual disability, affecting 1 in 8000 females and 1 in 4000 males (Prevalence, 2012).
Fragile X syndrome is a genetic condition that is more prevalent in females than males, but more severely affects males, causing developmental problems such as learning disabilities and cognitive impairment.
Fragile X syndrome is a subcategory of Intellectual Delay (ID), previously known as Mental Retardation (MR) The IDEA states that "Mental retardation means significantly subaverage general intellectual functioning, existing concurrently with deficits in adaptive behavior and manifested during the developmental period, that adversely affects a child's educational performance." (IDEA-Building the Legacy of IDEA 2004, 2006).
Fragile X syndrome (FXS) is the most common known cause of inherited intellectual disability, affecting 1 in 8000 females and 1 in 4000 males (Prevalence, 2012).
Fragile X syndrome is a genetic condition that is more prevalent in females than males, but more severely affects males, causing developmental problems such as learning disabilities and cognitive impairment.
Fragile X syndrome is a subcategory of Intellectual Delay (ID), previously known as Mental Retardation (MR) The IDEA states that "Mental retardation means significantly subaverage general intellectual functioning, existing concurrently with deficits in adaptive behavior and manifested during the developmental period, that adversely affects a child's educational performance." (IDEA-Building the Legacy of IDEA 2004, 2006).
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Facts and Statistics:
Characteristics:
Characteristics of FXS include developmental delays that affect daily life, such as taking longer than other children of the same age to develop sitting, walking, and talking skills. Individuals with Fragile X syndrome have various learning disabilities and experience trouble learning new skills. Along with intellectual difficulties, individuals with FXS experience difficulty with social and behavioral problems in the classroom and at home. (CDC, 2014) Other signs and symptoms of Fragile X Syndrome include (Cafasso, 2015):
Signs and symptoms usually develop by age 2, showing delayed speech and language, hyperactivity, anxiety, and fidgeting. Physical characteristics of Fragile X Syndrome develop in most males and about half of females, becoming more apparent after puberty (Fragile X syndrome, 2012). Resources for Parents:
National Fragile X Foundation: 1-800-688-8765, [email protected] Community Support Network (CSN): run by parent volunteers to support families fragilex.org Blogs: http://www.theotherlion.blogspot.com/ http://marcandrachael.blogspot.com/ http://www.basicallyfx.com/ http://www.fragilexfiles.com/ Books: Dear Megan: Letters on Life, Love, and Fragile X -By Mary Beth Busby and Megan Massey Understanding Fragile X Syndrome: A Guide for Families and Professionals -By Isabel Fernandez Carvajal and David Aldridge Fragile X Fragile Hope: Finding Joy In Parenting A Child with Special Needs -By Elizabeth Griffin Children's Books: Boys with Fragile X Syndrome -By Rebecca O’Connor Riding the Bus with My Sister: A True Life Journey -Rachel Simon An Exceptional Children's Guide to Touch: Teaching Social and Physical Boundaries to Kids -By Hunter Manasco Simulation
http://webaim.org/articles/cognitive/activity One example of a simulation to help students understand intellectual delays is to give one set of directions for doing a new skill (the example given through the link is to build an Origami cup). It shows the students that alternative methods of support are necessary for their peers with ID or processing disorders. The detailed directions and questioning prompts are available through the link above. Simulation video
The video below is a simulation for Autism Sensory Overload, but individuals with FSX also experience sensory overload that mimics the symptoms of Autism. This is the reason I listed 'alone space' and seating the student in the front and side of the classroom. |
Causes:
Fragile X Syndrome is caused by a gene mutation on the X chromosome (females have 2 X chromosomes and males have 1 X and 1 Y chromosome). The gene mutation causing FXS is a lengthening of the gene. Some individuals with the lengthened gene are carriers, and pass down the gene through generations. Because FXS is on the X chromosome, male carriers can only pass the gene to their daughters. Female carriers have a 50% chance of passing down the gene to any child they have. Mutation often increases as it is passed through generations, often appearing in families with no previous history of ID (What causes Fragile X Syndrome, 2013). Diagnosis:
Diagnosis for Fragile X Syndrome easily done through a DNA blood test that is administered by a doctor or genetic counselor to determine if the student has the FMR1 gene that can lead to Fragile X Syndrome. Treatment: Fragile X Syndrome cannot be cured, but there are many treatment strategies to help the child with FXS develop the skills necessary to have the highest level of independence. One method of treatment is therapy sessions that focus on learning skills, especially language and social (CDC, 2015). Medication commonly prescribed for behavior disorders can be used to treat symptoms of Fragile X Syndrome. Most students with FXS qualify for Special Education services (Treatment and Intervention, 2012). Early Intervention: (CDC, 2015) Early Intervention strategies can be utilized to help children birth to three years old to learn key skills and can provide evaluations and interventions prior to an official diagnosis. Adaptations:
Situations:
Martha is a child with Fragile X Syndrome in a constructivist classroom. Students are often collaborating and moving around to do group work. This causes distractions and over-stimulation for Martha. I would seat Martha in the front and side of the classroom to lessen the distractions and prevent students from unintentionally disrupting Martha's learning. Jack is in a fifth grade classroom with an assignment to write a paper on what he did over the summer. Because Jack has Fragile X Syndrome, writing with a pencil is difficult because it is a fine motor skill. I would accommodate Jack by allowing him to record his thoughts through a different mode, such as typing it on a computer or through hand-on-hand writing. |
References
2012 Disability Status Report Minnesota. (2014). Retrieved from http://www.disabilitystatistics.org/StatusReports/2012-PDF/2012-StatusReport_MN.pdf
Cafasso, J. (2015, January 1). Fragile X Syndrome. Retrieved February 8, 2015, from http://www.healthline.com/health/fragile-x-syndrome#Treatment5
CDC: Facts about Fragile X Syndrome. (2014, December 9). Retrieved February 6, 2015, from http://www.cdc.gov/ncbddd/fxs/facts.html
Fragile X Clinic - University of Minnesota Masonic Children's Hospital. (n.d.). Retrieved February 10, 2015, from http://www.uofmchildrenshospital.org/Specialties/Autism/FragileXClinic/index.htm
Fragile X syndrome. (2012, April 1). Retrieved February 6, 2015, from http://ghr.nlm.nih.gov/condition/fragile-x-syndrome
National Fragile X Foundation. (2011, December 17). Retrieved February 10, 2015, from http://www.fragilex.org/
Prevalence. (2012, January 13). Retrieved February 8, 2015, from http://www.fragilex.org/fragile-x-associated-disorders/prevalence
Saunders, S. (1999). Teaching children with fragile X syndrome. British Journal of Special Education, 26(2), 76-79. doi:10.1111/1467-8527.t01-1-00110
Statistics about Fragile-X Syndrome. (n.d.). Retrieved February 10, 2015, from http://www.rightdiagnosis.com/f/fragile_x_syndrome/stats.htm
Treatment and Intervention. (2012, January 2). Retrieved February 8, 2015, from http://www.fragilex.org/treatment-intervention/
What causes Fragile X Syndrome. (2013, January 1). Retrieved February 8, 2015, from http://fragilex.org.au/what-is-fragile-x/what-causes-fragile-x/
By: Melanie Adam
2012 Disability Status Report Minnesota. (2014). Retrieved from http://www.disabilitystatistics.org/StatusReports/2012-PDF/2012-StatusReport_MN.pdf
Cafasso, J. (2015, January 1). Fragile X Syndrome. Retrieved February 8, 2015, from http://www.healthline.com/health/fragile-x-syndrome#Treatment5
CDC: Facts about Fragile X Syndrome. (2014, December 9). Retrieved February 6, 2015, from http://www.cdc.gov/ncbddd/fxs/facts.html
Fragile X Clinic - University of Minnesota Masonic Children's Hospital. (n.d.). Retrieved February 10, 2015, from http://www.uofmchildrenshospital.org/Specialties/Autism/FragileXClinic/index.htm
Fragile X syndrome. (2012, April 1). Retrieved February 6, 2015, from http://ghr.nlm.nih.gov/condition/fragile-x-syndrome
National Fragile X Foundation. (2011, December 17). Retrieved February 10, 2015, from http://www.fragilex.org/
Prevalence. (2012, January 13). Retrieved February 8, 2015, from http://www.fragilex.org/fragile-x-associated-disorders/prevalence
Saunders, S. (1999). Teaching children with fragile X syndrome. British Journal of Special Education, 26(2), 76-79. doi:10.1111/1467-8527.t01-1-00110
Statistics about Fragile-X Syndrome. (n.d.). Retrieved February 10, 2015, from http://www.rightdiagnosis.com/f/fragile_x_syndrome/stats.htm
Treatment and Intervention. (2012, January 2). Retrieved February 8, 2015, from http://www.fragilex.org/treatment-intervention/
What causes Fragile X Syndrome. (2013, January 1). Retrieved February 8, 2015, from http://fragilex.org.au/what-is-fragile-x/what-causes-fragile-x/
By: Melanie Adam