Tips for Schools for Catering to Students with Angelman Syndrome

Tips for Schools for Catering to Students with Angelman Syndrome
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Angelman syndrome is a rare genetic disorder that affects the nervous system, causing physical and intellectual disabilities. The disease is associated with a variety of symptoms that usually appear shortly after birth and include severe developmental delay, weak muscle tone, muscle stiffness, and difficulty moving.

Because Angelman syndrome is so rare, many people — including childcare providers and educators — are unfamiliar with the disease. That can make it challenging for schools and daycare centers to cater to children with the disorder. Here are some tips that may help.

Build an individualized education plan

One of the first things that schools and daycare centers can do for a child with Angelman syndrome is to develop an individualized education plan (IEP) together with the child’s parents. The plan should answer questions such as what accommodations the child will need and how the school will meet these accommodations to ensure that the child receives the proper education.

The IEP should be updated frequently to highlight what’s working and what needs to change for the child to thrive in the classroom. Improvements and new symptoms also should be noted.

Keep the child’s treatment plan on file

Children with Angelman syndrome should have a treatment plan on file with the school. A treatment plan contains a description of the child’s disease and its symptoms, as well as information about how the disease is being treated — what medications the child requires, and the dosage and frequency of use. Any side effects of the medications also should be listed. If the child is on a special diet, that information should be in the treatment plan.

While teachers and caregivers may not need to know every aspect of the disease, they should be aware of the child’s current symptoms, what to look out for, and any medications that the child may need while in the classroom. For example, some children with Angelman syndrome experience epileptic seizures. Teachers and caregivers should be familiar with the symptoms of a seizure and the first aid steps they should take if the child has one in their classroom.

Talk to parents on a regular basis

The school should keep in touch with the child’s parents on a regular basis and discuss any issues or concerns, such as any new symptoms that teachers or caregivers may have noticed, or changes in the child’s behavior of which the parents may be unaware. Many Angelman syndrome patients are non-verbal, and it is important for parents and school caregivers to communicate frequently to make sure that the child’s needs are being met.

Any changes to the child’s treatment plant or IEP should be discussed between the school or daycare center and the child’s family.

 

Last updated: Jan. 23, 2020

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Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. 

Emily holds a Ph.D. in Biochemistry from the University of Iowa and is currently a postdoctoral scholar at the University of Wisconsin-Madison. She graduated with a Masters in Chemistry from the Georgia Institute of Technology and holds a Bachelors in Biology and Chemistry from the University of Central Arkansas. Emily is passionate about science communication, and, in her free time, writes and illustrates children’s stories.
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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.
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Emily holds a Ph.D. in Biochemistry from the University of Iowa and is currently a postdoctoral scholar at the University of Wisconsin-Madison. She graduated with a Masters in Chemistry from the Georgia Institute of Technology and holds a Bachelors in Biology and Chemistry from the University of Central Arkansas. Emily is passionate about science communication, and, in her free time, writes and illustrates children’s stories.
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