Webpage Created By: Megan Scherber, Minnesota State University-Mankato, Elementary Education Teacher Candidate
IDEA Definition of Rett Syndrome:
Rett Syndrome falls under the IDEA (Individuals with Disabilities Education Act) definition of autism spectrum disorder: "a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age three, that adversely affects a child’s educational performance. A child who shows the characteristics of autism after age 3 could be diagnosed as having autism if the criteria above are satisfied.[34 CFR §300.8(c)(1)]" (NICHY, 2010).
Other characteristics often associated with autism: - Engaging in repetitive activities - Stereotyped movements - Resistance to environmental change - Change in daily routines - Unusual responses to sensory experiences
**A child that doesn't meet specific criteria for autistic disorder, but shows similar symptoms, may be diagnosed as having Rett syndrome.
Rett Syndrome can be specifically defined as: A neurodevelopmental disorder in a child that falls under the IDEA definition of autism spectrum disorder. Rett syndrome occurs almost exclusively in girls. This disability can lead to difficulties with language, communication, learning, coordination, and other brain functions. Similar characteristics associated with autism can be found in a child with Rett syndrome. Other names used for Rett Syndrome include: Rett disorder, Rett's disorder, Rett's syndrome, RTS, RTT, and autism-dementia-ataxia-loss of purposeful hand use syndrome.
Characteristics of Rett Syndrome: -Loss of muscle tone is most common characteristic distinct from other autism spectrum disorders -Difficulty crawling or walking -Diminished eye contact -Compulsive hand movements: wringing, washing, clapping -Lose purposeful use of hands -Ability to speak is affected -Slower growth and small head sizes - Breathing abnormalities - Sleep disturbances - Curvature of spine (scoliosis) - Can lead to seizures - Can lead to inability to perform motor functions throughout whole body What it feels like to have Rett Syndrome: This video shows families explaining in detail what it's like for their child to have Rett syndrome and how children live with Rett syndrome.
Examples of children who have Rett Syndrome: This video discusses the life of children with Rett syndrome and the challenges that these girls work to overcome. The video includes ways these children are supported as students in schools.
Causes of Rett Syndrome: - In majority of cases of Rett syndrome, the girls affected have a genetic mutation on the X chromosome of the MECP2 gene - Disruption in the making of protein for normal brain function - Disrupting normal function of neurons and cells in the brain - "In more than 99 percent of people with Rett syndrome, the condition is not inherited and there is no history of the disorder in their family" (U.S. National Library of Medicine, 2015). - Males with mutations of the MECP2 gene will often die in infancy
4 Stages of Rett Syndrome: Stage 1: Early Onset (6-18 months of age)- Slowing of development occurs. The child shows reduced interest in toys, limited eye contact, and delayed gross motor skills may occur in sitting or crawling. Stage 2: Rapid Destructive Stage (1-4 years of age)- Child is losing purposeful hand skills and speaking ability. The compulsive hand movements occur during this stage such as wringing, washing, clapping, and repeatedly moving the hands to the mouth. Breathing irregularities and unsteady motor movements are apparent, and a slowed head growth is usually noticeable. Often during this stage, autistic-like symptoms will be noticeable, such as loss of social interaction and communication. Stage 3: Plateau or Pseudo-Stationary Stage (2-10 years of age and beyond)- Continued loss of motor skills occurs during this stage. Seizures could start to occur. Symptoms can start to be managed, improving behavior and communication skills. It's common for a girl with this disability to remain in this stage throughout her life. Stage 4: Late Motor Deterioration Stage (Typically beyond 10 years of age)- Characteristics of this stage include, reduced mobility, muscle weakness, curvature of spine can occur (scoliosis), abnormal posture, and loss of ability to walk. In most cases repetitive hand movements will decrease during this stage and eye contact will improve. Important Facts on Rett Syndrome: -Affects approximately 1 in 8,500 females -Diagnosed by observing signs and symptoms during a child's early growth and performing ongoing evaluations -No cure for Rett syndrome, but focusing on managing the symptoms through the use of occupational and physical therapy, as well as providing support services will help these children -Many individuals with Rett syndrome are able to live to middle age and beyond
Accommodations for an individual with Rett Syndrome: 1) Keep a consistent schedule for this child throughout the day. 2) Break tasks into smaller steps for the child to master systematically, while providing the child with more time to enhance the learning process. 3) Provide frequent breaks for the child to improve balance and flexibility. Swinging is a fun activity for a brain break, but it's important to provide these children with choices often. 4) Provide the child with special services and support within that child's least restrictive environment. For example, have a paraprofessional in the mainstream classroom with the child. 5) Provide artistic activities to encourage self expression. Music can be soothing for these students. 6) Provide a classroom environment that is suitable to children with physical disabilities. For example, make sure the classroom is easily accessible and there is space for a child in a wheel chair.
Modifications for an individual with Rett Syndrome: 1) Working with the child on lower grade-level concepts that meet their learning needs, which are less demanding than the grade-level standards being assessed in the mainstream classroom. 2) Change the way tests are given and graded. For example, provide picture exchange communication or the use of sign language throughout learning. Avoid pressuring the child to perform by reducing the number of problems on a test and adapting the test to the level of difficulty or grade-level standard that child is learning in.
Scenarios of a student with Rett Syndrome: 1) If there is a child in a classroom with Rett syndrome who has lost the ability to speak, an educator should accommodate to this child's needs by using visual representations and allowing the child to complete artistic activities in order to express oneself. (Accommodation) 2) If there is a child in a classroom with Rett syndrome who has compulsive hand movements that may be distracting to other students, an educator should provide this student with a hand-held item, such as a stuffed animal or an item that the student desires. (Accommodation)
Resources for Parents on Rett Syndrome: 1) International Rett Syndrome Website: http://www.rettsyndrome.org/ This organization provides parents with information on the latest research being done with Rett syndrome, ways to support an individual with Rett syndrome through education and at home, as well as ways to manage life with Rett syndrome. 2) Rare Connect: Connecting Rare Disease Patients Globally Website: https://www.rareconnect.org/en/community/rett-syndrome This resource allows parents to join a Rett syndrome community online. It provides parents with the opportunity to share their story, connect with other families who have a child with Rett syndrome, and learn more about Rett syndrome. 3) Genetic and Rare Diseases Information Center Website: http://rarediseases.info.nih.gov/gard This information center provides parents with answers to specific questions about Rett syndrome. 4) The Early Childhood Initiative Foundation: http://www.teachmorelovemore.org/SpecialNeedsDetails.asp?id=9 This foundation provides links to checklists with suggestions on how parents can help their child's physical movements and development, as well as speech and language skills. 5) The Rett Syndrome Handbook: http://www.rettsyndrome.org/for-families/resources Parents can download this Rett Sydrome Handbook through the International Rett Syndrome website. This handbook includes everything a parent needs to know about Rett syndrome, and a PDF copy can be downloaded for free.
Children Books: 1) DC Super Hero's: My First Book of Girl Power by Julie Merberg This book provides girls with super hero role models with fun, colorful art. The book focuses on attributes from physical strength to intuition. 2) Just Because by Rebecca Elliot This picture book is about being loved unconditionally, no matter what. The boy in this story has an older sister who can't walk, talk, move around much, juggle, or cook. The boy talks about all the fun things they do together and how he sees her special needs as being wonderful. 3) They Call Me Horse by Pat Lopez This book was written to teach children that although not all people look and act the same, we all have feelings and needs. This book was dedicated to all girls with Rett syndrome.
Sources Used: LoveToKnow Corp. (2015). Activities for Rett Syndrome. LoveToKnow Autism. Retrieved January 24, 2015 from http://autism.lovetoknow.com/activities-rett-syndrome#R.
National Institute of Neurological Disorders and Stroke. (2014). Rett Syndrome Fact Sheet. National Institute of Neurological Disorders and Stroke. Retrieved January 24, 2015 from http://www.ninds.nih.gov/disorders/rett/detail_rett.htm#109743277.
NICHCY. (2010). Autism Spectrum Disorders. Center for Parent Information and Resources. Retrieved January 24, 2015 from http://www.parentcenterhub.org/repository/autism/.
Rudy, Lisa Jo. (2014). Rett Syndrome. About Health. Retrieved January 24, 2015 from http://autism.about.com/od/autismterms /g/RettDefinition.htm.
U.S. National Library of Medicine. (2015). Rett syndrome. Genetics Home Reference. Retrieved January 24, 2015 from http://ghr.nlm.nih.gov/condition/rett-syndrome.
Virginia Department of Education. (2010). Guidelines for Educating Students with Autism Spectrum Disorders. Retrieved January 24, 2015 from http://www.doe.virginia.gov/special_ed/disabilities/autism/technical_asst_documents /autism_guidelines.pdf.