Educating Our Girls

RSRT focuses on research with the ultimate aim of a global reversal of Rett Syndrome. When this happens, intense remedial therapy and teaching will be required to integrate new levels of functioning. We will want Rett patients to be starting from as broad a learning base as possible.

Rett Syndrome has traditionally been categorized as a cause of severe mental retardation. This was widely accepted as a part of the clinical diagnosis. Some families felt this accurately described their daughter’s capacities, and some didn’t. Brochures and informational pamphlets distributed in the 1980’s by the first parents’ association, IRSA, noted that true intelligence was difficult to measure due to motor difficulties and lack of speech. Parents who sensed that their daughter understood much more than she could communicate found little support from educators and therapists in the effort to bridge this gap.

Since the link to mutations of MECP2 was established it has become clearer that, as with autism and other disorders, there is a wide range of cognitive abilities in children and adults with MECP2 anomalies.

Evolving strategies in teaching and the field of augmentative communication have provided fresh perspectives, and new technology is fostering different attitudes about what sufferers of Rett Syndrome can achieve academically. These revised expectations help create a much more sophisticated and positive foundation for unlocking and nurturing the potential of our children. We do not know all the factors that impact differences in learning, but increasingly we understand that interactions between environment and genetic expression are profound and ongoing.

The Enriched Environment

Rett mouse models exposed to an enriched environment do better. This will not be a surprise to parents, teachers and therapists working with people who have Rett Syndrome. But they may not be aware of some of the data generated with these models, showing, for instance, increases in levels of BDNF (brain-derived neurotrophic factor), improved memory and mobility, and decreased anxiety. In other words, some of the symptoms and deficits caused by MECP2 abnormalities can be mediated environmentally.

What constitutes an ideal enriched environment for a child or adult with Rett Syndrome? Active and passive enrichment must be devised with the tastes, needs and sensitivities of the individual in mind. What is a delight to one girl may be noxious sensory overload to another. We want to bring the world to children whose independent exploration has been severely limited by motoric and nervous system impairments.

By passive enrichment we mean thoughtful exposure to all the tactile, visual and auditory aspects of a child’s environment. Shapes, colors, the quality of light and sound, textures, visual patterns all convey information and affect mood and the desire to interact or the need to withdraw. Pay attention to what engages your child and build on it; conversely, notice what overwhelms her and protect her from such stimuli.

Active enrichment includes all the input good parents provide to a typically developing child, including talking to her. This is hard with a child who cannot actively engage in conversation by asking questions or responding verbally. Nevertheless, we want to expand receptive language by giving her a rich vocabulary in the context of information. Be aware of how you speak both to and in front of your child. You are shaping her self-image and conveying expectations, to her and to others. If yours is a bilingual household, give your child the advantage of immersion in more than one language.

In our desire to help our children “catch up” we sometimes forget the importance of unstructured, relaxed play. Though there are many ways therapies can be blended fairly seamlessly with playing, remember to make time for enjoyable, open-ended activities in which goals might be discovered (or not) rather than dictated. Life is about more than therapy.

Parent Centers

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Communication Resources

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As with most children, the development of literacy begins with pre-literacy skills through exposure and repetition. When we spend time reading to our children, we are bringing information to them and exercising their capacity for imagination. A Rett child who seems not to be interested in narratives might respond better to rhymes and poems, or to song. There are many ways to tell stories and familiarize a nonverbal child with the structures and richness of language. Learning is good for the brain, no matter what the neurological challenges may be.

Learning Styles

Learning styles and strengths differ, so observe your daughter for clues about what works well for her. If she is mobile, is she a kinetic learner? Does it help to link cognitive work with movement? Is she reassured by repetition? Is she more engaged by novelty? What is a good ratio for her of fine motor to gross motor work in the context of academic learning? What settings are comfortable for her—what kind of lighting, noise level, positioning? What stresses her, and how often does she need a break? Learning should be a joy.

A Rett child who is fatigued or flooded with sensory overload or anxiety must have these issues addressed to be a successful student. It is also important to remember that variability, week to week or day to day or even hour to hour is very typical. We all have our peak moments and those days when nothing seems to work well, and for many of our daughters such swings seem to be more frequent and more intense. Make sure that the professionals who work with your child see some of those peak moments, with the challenge of expanding them.

Schooling: Home Schooling, Home-Based Programs, Special Education Classrooms, Full Inclusion

There is no single correct choice for every child in every location. The quality of available resources, demands on a parent’s time and energy, and the specific needs of your child are factors in determining how your daughter will best be educated. Talk to experienced families, both Rett parents and those with children who have other disorders, who have successfully navigated your local district and are familiar with teachers and administrators. Visit classrooms, gather information from therapists and other professionals who work well with you and your child, and arm yourself with a thorough understanding of your child’s legal educational rights and the strengths and weaknesses of your school district.

Communication and Technology

As is the case with all computer technology, augmentative communication equipment continues to become more powerful, sophisticated and user-friendly. There are girls using eye-gaze devices such as My Tobii, using iPads, using laptops. The input of a well-trained augmentative communication specialist and an OT (occupational therapist) who specializes in augmentative communication can be invaluable. There are also centers for augmentative communication where equipment can be tried out. Many Rett clinics now offer support in augmentative communication, and there are many online groups and resources where you can find ideas and feedback. It is important for Rett children to have plenty of relaxed time to explore the viability of any particular communication system or piece of equipment. And it is vital to remember that communication takes many forms, and no one should be locked into a single mode of expression to the exclusion of others.

Real communication is a two-way street. It isn’t a test, and it isn’t yes/no interrogation. Nonverbal communicators require their listeners to be attentive to gesture, facial expression, body language, even the look in someone’s eyes. No child learns well being defined by her deficits instead of her strengths. Give her the benefit of high expectations. Let her know you believe in her and model this belief, so that others will learn how to relate to her in a genuine and respectful way. Until we can cure her, nurture her.