Rett Syndrome
Information on Rett Syndrome
Rett's syndrome is a unique postnatal neurological disorder that is first recognized in infancy and seen almost always in girls, but can be rarely seen in boys. Rett syndrome is not a degenerative disorder. Rett syndrome causes problems in brain function that are responsible for cognitive, sensory, emotional, motor and autonomic function. Rett syndrome strikes all racial and ethnic groups, and occurs worldwide in 1 of every 10,000 female births.
Rett syndrome affects:
-Learning
-Speech
-Sensory sensations
-Mood
-Movement
-Breathing
-Cardiac function
-Even chewing, swallowing, and digestion
One of the major syndromes of Rett's is the near constant repetitive hand movements while awake.
Students are hard to assess, but they understand far more than they can communicate.
(Rettsyndrome.org, 2015)
Rosemary Ash
Stages of Rett syndrome
Stage One
Around 6-18 months of normal development, growth in development comes to a halt and there is a period of regression.
Stage Two
Between the ages of 1-4, communication skills are greatly reduced or lost as well purposeful hand use. Some may show autistic-like symptoms, loss of social interaction or self-injurious behaviors, but other symptoms include slowing of head growth, disorganized breathing, difficulty walking and hand movements (wringing, washing or tapping).
Stage Three
Symptoms begin at ages between 2 and 10 and may last for years. Things may become more difficult, motor problems and seizures, but other symptoms may improve, irritability and communication (maintaining eye contact).
Stage Four
Symptoms at this stage last for decades, these symptoms include reduced mobility, muscle weakness, curvature of the spine. Rett syndrome essentially stops you from doing what you want to do, when you want to do it. The commands of your brain are lost and the body does not obey.
Rosemary Ash
Rett's syndrome is a unique postnatal neurological disorder that is first recognized in infancy and seen almost always in girls, but can be rarely seen in boys. Rett syndrome is not a degenerative disorder. Rett syndrome causes problems in brain function that are responsible for cognitive, sensory, emotional, motor and autonomic function. Rett syndrome strikes all racial and ethnic groups, and occurs worldwide in 1 of every 10,000 female births.
Rett syndrome affects:
-Learning
-Speech
-Sensory sensations
-Mood
-Movement
-Breathing
-Cardiac function
-Even chewing, swallowing, and digestion
One of the major syndromes of Rett's is the near constant repetitive hand movements while awake.
Students are hard to assess, but they understand far more than they can communicate.
(Rettsyndrome.org, 2015)
Rosemary Ash
Stages of Rett syndrome
Stage One
Around 6-18 months of normal development, growth in development comes to a halt and there is a period of regression.
Stage Two
Between the ages of 1-4, communication skills are greatly reduced or lost as well purposeful hand use. Some may show autistic-like symptoms, loss of social interaction or self-injurious behaviors, but other symptoms include slowing of head growth, disorganized breathing, difficulty walking and hand movements (wringing, washing or tapping).
Stage Three
Symptoms begin at ages between 2 and 10 and may last for years. Things may become more difficult, motor problems and seizures, but other symptoms may improve, irritability and communication (maintaining eye contact).
Stage Four
Symptoms at this stage last for decades, these symptoms include reduced mobility, muscle weakness, curvature of the spine. Rett syndrome essentially stops you from doing what you want to do, when you want to do it. The commands of your brain are lost and the body does not obey.
Rosemary Ash
Causes:
Rett syndrome is caused by mutations on the X chromosome on a gene called MECP2. There are more than 200 different mutations found on the MECP2 gene, and most of these mutations are found in eight different "hot spots."
Rosemary Ash
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What does Rett Syndrome look like? |
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What does it feel like to have Rett Syndrome? "The girls can't talk, can't do the simplest things.." "I see them as trapped..trapped in a body that isn't working properly. They have the will and are trying to do things, but their brain isn't connecting" |
Taylor Egeland
Adaptations
Accommodations:
Modifications:
Rosemary Ash
Resources for Parents
Children's Books on Rett Syndrome
- I See Things Differently by Pat Thomas
-Since We're Friends: An Autism Picture Book by Celeste Shally
-Autistic? How Silly is That!: I Don't Need Any Labels at All! by Lynda Farrington Wilson
Rosemary Ash
Accommodations:
- Provide visual cues and instructions
- Use voice output communication devices that "speak" for the child if she/he is unable to verbalize
- Use pictures and objects as a means of communication understanding instead of writing
- Position the student close to materials, and instruction for ease of access
- Provide a para-educator for the student for instruction, comfort, and physical purposes
- Provide instruction in small-group, and one-on-one settings
Modifications:
- Provide grading based upon specific goals listed in IEP; these goals may or may not be curriculum based
- Substitute alternatives to written assignments by creating a story, poster, drawing, etc.
- Provide texts at an easier reading level, presenting the same concepts
5 Resources for Parents
Rosemary Ash
Resources for Parents
- https://www.rettsyndrome.org/ (For information and support)
- http://www.rettsyndrome.org/understanding-rett-syndrome/family-support (For support and programs)
- http://www.girlpower2cure.org/Home.aspx (Support for families, raising awareness, and funding research)
- http://www.rsrt.org/ (Research Trust and Blogs)
- http://www.mrsra.org/ (Midwest support)
Children's Books on Rett Syndrome
- I See Things Differently by Pat Thomas
-Since We're Friends: An Autism Picture Book by Celeste Shally
-Autistic? How Silly is That!: I Don't Need Any Labels at All! by Lynda Farrington Wilson
Rosemary Ash