The Role of Occupational Therapy in the Life of a Person with Angelman Syndrome
What Can an Occupational Therapist Do for Individuals with Angelman Syndrome?
Various Methods of Occupational Therapy for Individuals with Angelman Syndrome
The Role of Occupational Therapy in the Life of a Person with Angelman Syndrome
Individuals with Angelman Syndrome, regardless of genetic subtype, should receive and will benefit from occupational therapy ("OT"). OT includes therapies designed to enhance independence and self-help skills like eating and dressing, improve Sensory Processing (Sensory Integration), and develops fine motor and pre-writing/writing skills.
Sensory Processing is an individual"s ability to process different sensory inputs, such as light touch, deep touch, vestibular sensation (related to balance), sound, light, and joint position. All of this input contributes to feeling where the body is in space, navigating the environment, and avoiding noxious stimuli which are cues to dangerous situations (such as pain and excessive heat). Inputs come from all parts of the body, including the face and mouth regions. An individual can have increased sensitivity or decreased sensitivity to one or more types of sensation, in different parts of the body. When this processing is abnormal in a way that affects an individual"s ability to function, it is termed Sensory Processing Disorder (previously known as Sensory Integration Disorder). Individuals with Angelman Syndrome appear to have a disorder of sensory processing, although each may have a different combination of over and under sensing.
An occupational therapist can institute methods which help decrease over sensation (such as an aversion to food in the mouth) and allow an individual to tolerate the environment (such as the taste and texture of food). Such methods can also improve sensation (such as the ability to feel the fingertips) so that the body part can be used or moved better (such as to hold a spoon for self-feeding). Activities involving practicing use of the hand such as grasping, releasing, using individual fingers, and coloring are designed to build Fine Motor/Pre-Writing skills.
It is likely that all individuals with Angelman Syndrome will need intensive occupational therapy on a regular basis.
In many states, therapies under early intervention, which encompasses birth to three years of age, will focus on functional and medical goals, such as tolerating oral feedings and learning to move the body and handle objects. Once a child turns three, the goals shift focus to educational goals to be provided by the school district, such as learning to hold a crayon in preparation for writing. There are other avenues to obtain OT, potentially through private insurance, for which the goals for therapy usually need to be medically indicated.
Parents, caretakers and therapists should employ multiple methods to maintain interest and work toward goals. Therapists should communicate with each other and work together as a team on behalf of the child. The family may request therapists (physical, occupational, and speech) who have received additional neuro-developmental therapy training and certification. (For more information visit http://www.ndta.org). Parents and caregivers should trust their instincts as great observers of the child, and should be active partners in developing and instituting occupational therapy. However, they are parents and caregivers first, and should not feel the burden of providing therapy all the time. Techniques should be fit into play and other pleasurable family activities.
TopWhat Can an Occupational Therapist Do for Individuals with Angelman Syndrome?
An occupational therapist working with an individual with Angelman Syndrome may work on a variety of approaches to help with sensory integration and skill building. This may include such options as:
1. Increasing body awareness and sensation.
2. Working on body organization for maintaining attention to task, and helping to maintain appropriate behavior for a given task.
3. Helping to differentiate between sensory inputs to allow for tolerance of environmental inputs
4. Improving positioning and seating to help support the body for fine motor tasks, and working on building optimal postures for breathing, eating, and speech production.
5. Helping with performance of fine motor tasks such as holding a crayon, using a pincer grasp and release, pressing buttons, as well as helping with making signs and gestures.
6. Building and developing skills to help with performance of self-help activities, such as daily living tasks like dressing/undressing, buttoning, and finger and utensil feeding.
7. Working on oral-motor exercises to decrease or increase the sensitivity in and around the mouth. In addition, a therapist trained in oral-motor can assist the individual in forming sounds, working on proper chewing skills, and many other areas.
8. Developing a feeding therapy to address feeding difficulties, which may include aversion to any sensation in or around the mouth or to specific flavors or textures, an immature chewing pattern, overstuffing (possibly related to under sensing), difficulty drinking (from a nipple, cup, or straw), choking, and aspirating. A feeding specialist can assist in determining the best way to approach feeding and drinking methods for a child. Feeding therapy and Speech and Language Therapy can overlap. For example, feeding therapy can be linked to tongue lateralization and lip movement and closure that could potentially aid in speech production. Feeding therapy may also be provided by a speech therapist.
9. Helping develop skills used in social interactions. An individual who does not normally process body movement and feels "off-balance" may feel threatened in a group movement game. An individual who is tactile-defensive (finds external touch threatening and interprets it as a danger) may not tolerate the unintentional or intentional bumping up against each other that commonly occurs during group play. Improved sensory processing can improve functioning in social situations.
In a typical occupational therapy session, a speech therapist might begin with sensory integration to "wake up" or "calm down and organize" the mouth and other body parts, to prepare for practicing specific skills (generally disguised as play). These techniques can be replicated outside the occupational therapy session setting, and can be incorporated into daily life, such as mealtimes and play.
TopVarious Methods of Occupational Therapy for Individuals with Angelman Syndrome
Brushing: The Wilbarger protocol employs a soft brush over most of the body, in specified directions, to increase or decrease light touch sensitivity. It can "wake up" the body to increase body awareness. It can also be used to calm and desensitize, in preparation for a potential noxious activity such as a haircut.
Joint Compressions: Systematic pushing together of joints throughout the body, to stimulate channels which provide input to the brain about body position in space.
Swaddling: Deep touch and joint input can be provided by bundling (in a baby carrier, a blanket, between pillows, in a sling-type swing). This can help with organization of sensory inputs, increase body awareness, and be calming.
Positioning, Seating: An occupational therapist can, often along with a physical therapist, select and modify an apparatus used for sitting or standing, which will optimize posture, ability to use the voice and hands, and attend to task. Bumpy cushions, a ball to sit on, or special tape, for example, might provide continuous input to a child to help him stay seated and better focused.
Oral-motor Stimulation: Application of a cold (but not frozen) object or cloth externally, massage with a washcloth or vibration devices or toys, placing sour and /or cold substances within the mouth can all wake up the mouth in preparation for speech or feeding therapy. Some of these techniques can also be used to desensitize the oversensitive mouth, such as with feeding aversion.
Swinging: The therapist can incorporate swings which bundle extremities close to the body as well as other swings which provide challenges to posture and balance. Some families have found hanging a swing from the ceiling helpful for physical and occupational therapy sessions as well as family sessions which provide pleasure as well as a calming effect on the child.
Aquatherapy: Just as physical therapy can be provided in water, so can occupational therapy. Water provides much more sensory information to the body surface, and the buoyancy can decrease movement difficulties even while the water provides some natural resistance to movement. It is thus an adjunct to movement activities. It can be a safe environment for challenging balance and posture.
Hippotherapy/Therapeutic Riding: May be provided by a physical therapist or an occupational therapist. Therapy is provided on a mobile surface (the horse) which offers repetitive deep sensory input (in multiple positions seated, standing, and on hands and knees), constant challenge to balance, and a surface from which to perform fine and gross motor tasks with the arms and hands.
Coloring, Painting, Manipulating Dough, Sorting small objects, Puzzles, Pegboards, Finger Isolation tasks: Improve strength and dexterity as a basis for writing, play, and self-help skills.
Sensory Diet: An occupational therapist can design a type of treatment plan that incorporates sensory integrating activities throughout a child"s day. These activities can be preparatory activities to alert body parts before performing task or skill. For example, a child might start the day with a few minutes of swaddling to wake up the whole body. Oromotor techniques might be used prior to breakfast, to facilitate feeding and speech exercises. Brushing, joint compressions, lotion application, massage, swinging, and swaddling might be introduced between school, play, or therapy activities. The techniques that work best for that child for calming and organizing might be called into play at times of stress and inappropriate behaviors. Bath time can include vigorous washing with a washcloth or towel drying, similar to brushing techniques. Bedtime massage might assist with obtaining the sleep often elusive in individuals with Angelman Syndrome.
These examples are a sampling of the methods available to parents and caregivers to help design an occupational therapy program for the individual with Angelman Syndrome. It is also useful to view what is recommended for individuals with Down Syndrome (who have low muscle tone and decreased body awareness), autism, and sensory integration/sensory processing disorder.
TopPlease check back often as we will be updating the information contained in this document.
This document is authored by Sharon Weil-Chalker and Erin Sheldon.
The Content above is for informational purposes only, it is not a substitute for professional medical and or therapeutic advice, diagnosis, and/or treatment. Do not attempt to implement therapies without first seeking the advice of a professional therapist or medical provider as treatment has many consequences that must be medically and therapeutically addressed.