Education Angelman Syndrome

Angelman Syndrome - Education
Here are a few educational ideas for your child. This is a simple run down of your options, and each should be investigated thoroughly in your area. Other parents can be a great source of information and offer a wide range of opinions, so ask questions.
 Early intervention- This is often what birth to 3 (IDEA part C) programs are referred to.  This program may be administered by local school district, private organization or through community mental health agency.  Program usually focuses on physical therapy (gross motor skills such as sitting, crawling, walking, balance), occupational therapy (fine motor such as finger manipulation, feeding), and speech therapy (receptive language skills, expressive language skills, object recognition, alternative forms of communication) and sometimes a classroom setting that includes group play and circle time.
 Pre Primary Impaired/ Early Childhood Developmentally Disabled- Most school districts begin their services at 3 years of age, and while the name may be different the concept is the same. This is a preschool setting that has children with different disabilities.  They do pre-math, pre-reading, and activities that get children ready for kindergarten.
Partial inclusion- This is where your child spends part of the day in a resource room and part of the day included with his peers in the general education.
Full inclusion - This is where your child will be included in the general education with his peers all day. Usually with support staff included, such as a 1 on 1 aide, and with a modified curriculum.
Center programs- This is a school that is especially designed for children with special needs. Usually there are no “typical” peers in this setting, and is focused on therapy or activities of daily living throughout the day.
Residential programs- In a situation like this the child lives at school, with occasional visits home.
 Communication
There are many types of communication that are effective with people with Angelman Syndrome. Some behaviors in later years are related to frustration about the inability to communicate, so start early! After all, not being able to speak or communicate must be very frustrating! But just because most children with Angelman Syndrome cannot talk does not mean they can’t communicate. So, try all forms and see what works best for you and your family.
One thing to consider it the total communication approach. That means using whatever type of communication the child can that is appropriate for the situation. For example speaking whatever words and/or word approximations that are understandable, using sign language or gesturing to explain needs and wants, finding an augmentive communication devices at school and when out in the community and request specifics, and having the ability to use picture cards if device is not handy.  Keep in mind the need to teach your child a way to signal an immediate danger (scream, whistle).
Verbal- There are different exercises you can do to enhance the child’s awareness of and increase (or decrease) the sensitivity of the mouth, lips, tongue, teeth and throat. There are also exercises your child can do to learn to form their mouth to produce different sounds. There are also some blowing techniques that can improve the ability to make certain sounds.  One protocol for oral motor training is the Beckman Method.
Gesture/Signing- Some children with Angelman Syndrome can do simple sign language. Lots do simplified signs; a good web site for this is http://www.simplifiedsigns.org.  A sign language class is always a good resource for the parent. You can also buy CDs for your computer that teaches sign language. A sign language dictionary is also a good resource. Don’t worry, you can learn slowly. Start with simple signs such as please, eat, and more.   Pantomime and gestures from songs are also easy to teach.
PECS Picture Exchange Communication System- This system utilizes pictures as a way to communicate. The child picks up a picture and brings it to the parent or caregiver, to make a request. Most people use BoardMaker by Mayer Johnson. At first to see if your child can utilize this system, take pictures of your own and laminate them. Usually copy centers will laminate them, or it can be done at home with clear contact paper. Do not let the picture card be played with like a toy, at first only have them in sight when you are teaching with them.

AAC Assistive/Augmentive Communication- This is where a communication device speaks for your child. Many kids and adults with Angelman Syndrome can learn to use a device appropriately. This takes a lot of patience and work but the end results are worth it.  At this web site is http://www.accproducts.org.you can receive a packet of free catalogs of assistive technology devices.  Some other good sites are www.enablingdevices.com and www.attainmentcompany.com. You can also ask your school for an evaluation (put this in writing) or contact a large university or hospital for one.
 
Behavior Modification
As your Angel gets older you may encounter some behaviors that you will want to change. This is especially effective when the behaviors are hitting, kicking or biting. There are many ways to do this. Some parents do a big bear hug. This tends to calm your child down. This gives a sense of security and also has a calming and soothing effect. Usually a minute or two is fine. This is also effective for crying fits if your child has these. Another technique that is popular is a weighted vest. This gives stability and also a calming or soothing effect (ask your occupational therapist about weighted vests and blankets). Or you can ask your child’s school about a Functional Behavior Assessment.