Children with Angelman Syndrome benefit greatly from selected therapy services and they continue to learn and improve throughout their lives. Though it is best to start as early as possible, many new skills can be learnt well into adulthood. The 3 primary therapy services listed below are of great benefit to early childhood development and to help set children up to achieve their full potential.
Speech & language therapy - AAC
Speech and Language Therapy (SLT)
A Speech-language therapist/pathologist is a health professional trained to evaluate and treat people who have speech, language, voice or swallowing disorders (including hearing impairment) that affect their ability to communicate. A hearing test is often included in the evaluation because a hearing problem can also affect speech and language development. It is ideal to have access to a SLT who is a specialist in/has experience with Augmentative and Alternative Communication (AAC)
Speech and language are tools that humans use to communicate. Language is the set of rules shared by the individuals that allows them to exchange thoughts, ideas, or emotions. Language may be expressed through a combination of speech, writing, signing, gestures, pointing, or using communication devices. Augmentative and alternative communication (AAC) is a multi-modal approach to communication that is very well suited for people with AS. Special augmentative aids such as electronic devices (eg. tablets or iPads) with voice output or picture and symbol communication boards, are now available to help non-speakers express themselves. Having access to AAC will give the person with Angelman syndrome their own voice. This can help to avoid isolation, frustration and behaviours by increasing their social interaction, confidence, learning, school performance, and feelings of self-worth.
See more: The Right to a Voice
Due to neuromuscular and skeletal issues, many children with AS have balance and gait issues, and some struggle to be independently mobile. Physical therapy or physiotherapy (sometimes abbreviated to PT) is the health care profession primarily concerned with the remediation of impairments and disabilities. Paediatric physical therapists work with children and their families to assist each child in reaching her/his maximum potential to be able to move independently and to promote active participation in home, school, and community environments. As primary health care providers, PTs also promote health and wellness as they implement a wide variety of supports for children from infants to young adults.
Paediatric physical therapy promotes independence, increases participation, facilitates motor development and function, improves strength and endurance, enhances learning opportunities, and eases challenges with daily care giving. PT should continue through the child’s education years and form an important component of IEP meetings - from infancy through to adolescence, in collaboration with their families and other medical, educational, developmental, and rehabilitation specialists. PT also becomes necessary after any orthotic operations as part of the rehab plan. Because people who have Angelman syndrome usually love water, swimming and hydrotherapy are both excellent avenues to address fitness, balance, mobility and strength. Hippotherapy is also popular for core strength and balance.
Occupational Therapy (OT)
Occupational therapists and occupational therapy assistants help people participate in the things they want and need to do, through the therapeutic use of everyday activities/occupations, eg. Safe seating in a vehicle, eating with a utensil, pointing at an iPad, etc. OT interventions include helping people with AS to participate fully in school and social situations, and also those recovering from injury to regain skills. OT services would usually include an individualized evaluation, during which the client/family and occupational therapist determine the person’s goals, customized intervention to reach the goals, and an outcomes evaluation to ensure that the goals are being met and/or make changes to the intervention plan.
This may include comprehensive evaluations of the client’s home and other environments (e.g., school), recommendations for adaptive equipment, training in its use, and guidance & education for family members/caregivers. OT practitioners have a holistic perspective, in which the focus is on adapting the environment to fit the person, and the person is an integral part of the therapy team.
Simple therapy techniques that are helpful for AS individuals/anyone with sensory processing disorders, include: Brushing used with joint compression protocol
Equine Therapy or Hippotherapy is a treatment that uses the multidimensional movement of the horse; from the Greek word “hippos” which means horse. Specially trained physical, occupational and speech therapists use this medical treatment for clients who have movement dysfunction. Historically, the therapeutic benefits of the horse were recognized as early as 460 BC. The use of the horse as therapy evolved throughout Europe, the United States and Canada.
Read more here: How Can Equine Therapy Benefit My Child with Angelman Syndrome?
Read more on New Zealand Riding For The Disabled Association (NZRDA) here.
Hippotherapy uses activities on the horse that are meaningful to the client. Treatment takes place in a controlled environment where graded sensory input can elicit appropriate adaptive responses from the client. This approach is not about teaching specific riding skills (that is therapeutic riding) but rather a foundation is established to improve neurological function and sensory processing. This foundation can then be generalized to a wide range of daily activities.
The horse’s walk provides sensory input through movement which is variable, rhythmic and repetitive.
The resultant movement responses in the client are similar to human movement patterns of the pelvis while walking.
The variability of the horse’s gait enables the therapist to grade the degree of sensory input to the client, then use this movement in combination with other clinical treatments to achieve desired results.
Clients respond enthusiastically to this enjoyable learning experience in a natural setting.
Physically, hippotherapy can improve balance, posture, mobility and function. It may also affect psychological, cognitive, behavioral and communication functions for clients of all ages. For those children with AS who enjoy being around horses, therapeutic riding is another activity option that is sure to help improve confidence, overall fitness and general wellbeing.
Hydro / Aquatic Therapy
Therapeutic activities performed in an aquatic environment provide excellent opportunities for children with Angelman Syndrome to develop their motor skills. Most children with AS have a great love for the water, and this is highly motivating in itself.
Therapists use the unique gravity-lessened properties of water to enhance therapeutic activities; to help children explore and practice movements and skills they are not yet able to perform on land. Water provides resistance to active movement through all planes of motion, facilitating gains in strength for all major muscle groups. Movement through water provides increased tactile and proprioceptive input that enhances body awareness and motor learning. It is also an effective form of PT for rehab after orthotic operations.
Aquatic therapy is an effective intervention for many children with AS due to their abnormal muscle tone, muscle weakness, poor postural control and balance, decreased endurance and limited mobility. Children working to develop higher-level motor skills such as breath control, balance, coordination, and gait are very likely to benefit from aquatic therapy.
The Wilson Home Trust, Hydrotherapy
Music Therapy is the planned and creative use of music to attain and maintain health and wellbeing. People of any age or ability can benefit from a music therapy programme regardless of musical skill or background. It focuses on meeting therapeutic aims, which distinguishes it from musical entertainment or music education. It allows an individual’s abilities to be strengthened and new skills to be transferred to other areas of a person’s life. Music Therapy programs are very suitable for those with Angelman Syndrome, as they address a variety of objectives, including socialisation, communication (verbal/nonverbal), relaxation, stimulation, pain or stress management, emotional expression or coping, self-expression, self-esteem, motivation, independence, and physical, motor and cognitive skills. Read more on the Benefits of Music Therapy
Therapy research demonstrates the effectiveness of music therapy programs in many areas including: Physical rehabilitation, speech/language & communication, movement, emotional support for clients and their families, effect on mood and affect growth, physiological responses (eg heart rate, respiration), neurophysiological functioning, pain perception.
More about music therapy in NZ, here:
Many virtues have been attributed to art and how it can contribute to our lives. The therapeutic value of art has been explored and legitimized. Some believe art has the ability to heal, transcend and transform. Regardless of the benefits of art, we know it is fun, it engages, and gratefully it is one medium where there is no right or wrong answer. Art is a way to work with children who have disabilities toward the achievement of all sorts of goals, eg. Eye-hand coordination, Fine motor skills, Color recognition, Sequential thought, Matching, Visual acuity, Action concepts
Pet therapy is a guided interaction between a person and a trained animal. It also involves the animal’s handler. Pet therapy builds on the pre-existing human-animal bond. Interacting with a friendly pet can help many physical and mental issues. It can help reduce blood pressure and improve overall cardiovascular health. It can also release endorphins that produce a calming effect. This can help alleviate pain, reduce stress, and improve overall psychological state. The benefits of pet therapy for children with special needs.
Pet therapy can be used in many different ways. Defined objectives are an important part of therapy, and progress is recorded and tracked at structured sessions. The goals of a pet therapy program can include improving motor skills and joint movement, improving assisted or independent movement, increasing self-esteem, increasing verbal communication, developing social skills, increasing willingness to join in activities, improving interactions with others, motivating willingness to exercise. Pet therapy can include interactive sessions with animals such as horses, dolphins or dogs. It is important to remember that animals which are encountered for the first time, can become unpredictable if something unusual occurs, such as if they become unintentionally hurt or suddenly startled.
Other benefits of pet therapy include:
making you happier, lessening depression, and improving your outlook on life
decreasing loneliness and isolation by giving you a companion
reducing anxiety because of its calming effects
helping children learn empathetic and nurturing skills
Therapies for Behaviours
Dr Chris Oliver has researched Challenging Angelman Behaviours, His presentations explore the more common forms of challenging behaviour in children and adults with Angelman syndrome. There is a description of how genetic disorder can influence behaviour and information on the forms of the behaviours and changes with age, followed by a description of the main causes of behaviours such as aggression to others. Methods for assessing causes are described and a range of intervention techniques are presented with advice on evaluating how effective different techniques are. Throughout the presentation there is an emphasis on early intervention, the importance of consistency across environments and linking cause to intervention. His workshops are beneficial not only for parents, but also therapists, educators and carers.
Funded by the Canadian Angelman Syndrome Society (CASS) and the Angelman Syndrome Foundation (ASF), and developed by the ASF, the informational series on Angelman Syndrome Behaviors is accessible at Angelman Behaviours
Practical skills that can be achieved using various therapies
Yes/No – shaking head in the correct direction
Learning how to point (for communicating & to use technology effectively)
Walking technique on treadmill in physical therapy: Gait Training
Hand-under-hand learning/participation – useful for eating with a utensil
Toilet training by routine
Equipment and other supports
Depending on individual needs and options available in different countries, each person with Angelman Syndrome might require different equipment at various ages and stages of life. Parents, carers and specialists are always on the look-out for new ideas and sources for suitable equipment, as well as better methods for therapy. Ideas for equipment shown here, are sourced from what has been seen to be generally successful. In NZ, therapists will source suitable equipment free of charge to their clients.
Resources for General Equipment
Adaptive Equipment for the Home Environment
Most children with AS require special supportive seating, especially when young, eg. a corner seat for using on the floor (to play or eat in – keeps legs extended/stretched). A wooden TripTrap/Evolution chair or a height-adjustable bucket chair with straps are suitable to use at the table.
Helpful Clothing Products
Incontinence products – eenee swimmers (NZ): StayDry
Bracing: TheraSuit® / TheraSuit Method®
SDO Suits: The Sensory Dynamic Orthosis (SDO) is a made to measure Lycra Garment (Class 1) medical device, designed and produced to the finest detail. It provides dynamic compression to increase sensory and proprioceptive feedback as well as provide musculoskeletal support. Read more...
Independent Feeding (drinking/eating)
Special oval-shaped bowls/plates,some with suction pads at the base, are available.
Utensils with bigger handle-grips,can be helpful to teach self-feeding skills.
A variety of cups with different lips/spouts/sucking attachments are generally trialed until the right fit is found for each child.
Toilet / Bathroom Equipment
Extra assistance can be required for toileting, such as a raised foam seat, padded backrest with support-strap, a footstool for support and side rails for security and balance. A bath lift is important and useful when seizures are prevalent, or during recovery and rehab after orthotic operations. Commodes are very useful for both toileting and showering when the child has difficulty with walking and standing unaided. It is also a very practical piece of equipment to have on hand after orthotic operations, during recovery and rehab.
Safety at night is a top priority for children with AS, and to ensure that the parents can get some rest, too. Enclosed beds work well for many, though some children cope fine on a normal bed, too. When a child has epilepsy issues, many parents use monitors to hear and see their child if they wake up at night due to seizures. Because children with AS require very little sleep as well as 24/7 supervision, it is essential to ensure they will be safe in the night while the family is sleeping. A portable safety-sleeper is great when the child is young. As they grow, something more substantial may be necessary to ensure their safety at night, eg. the Safe-surround plus bed. Beds can be provided by your community OT.
Many young children with AS initially take longer to learn to walk due to balance and low-muscle tone and some may need assistance eg. a wheelchair and/or walking frame, throughout their life. However, most do learn to walk – some as late as in their teens.
Those who have orthopaedic operations to assist with their gait, may need rehab equipment after operations, such as a walking frame. There is a Facebook group for parents whose child has gait/orthopaedic/orthotic/scoliosis/skeletal complications. See Orthopedic issues related to Angelman Syndrome
Adaptive Equipment for Classrooms
An OT can assess what seating and table supports are needed for each student in the classroom. Many ideas for basic support equipment can be easily accessed or even made by a handy staff member or parent.
In addition to the 3 primary therapies, people with Angelman syndrome can also benefit greatly from alternative therapies such as hippotherapy, hydro/aquatic therapy, music therapy, art therapy and pet therapy – depending on each individual’s preferences and inclinations.