Tuesday, May 5, 2015

Some Angelman Tips

After about five months using a robust system Samantha can order cake!
It is unlikely that any student can make you feel more appreciated than one with the social gifts often
present in a child with Angelman Syndrome. Angelman Syndrome or AS occurs in about 1 in every 15,000 births.  The child with AS is likely to have motor, balance and coordination issues that affect both fine motor skills and gross motor skills.  Medically, seizures occur in many cases and feeding issues may occur in infancy. Problems with sleep are common. 

Children with AS tend to be social, have a happy disposition and may have stereotypical hand movements like flapping.  Apraxia of speech affects all children with AS and most have only a few spoken words or communicate only using alternative methods like facial expressions, gestures, adapted sign language, and augmentative and alternative communication.  Like all children who are non-speaking sometimes behaviors act as communication if no other means is provided and taught.  Many children with AS are attracted to water and enjoy swimming, bathing and water tables. It also is fairly common for children with AS to be attracted to media such as music, videos and interactive electronic games and devices. 

Students with AS may have vision issues including cortical vision impairment, ocular albinism and other problems.  They may also have problems with auditory processing.  Many children with AS have much fairer complexions their the rest of their families.  Most learners with AS are "consistently inconsistent"  they should be measured by their best days not by the days when seizures, a disorganized sensory system or sleep issues are impacting them.  Children with Angelman Syndrome, like children with many other genetic and acquired disabilities who can not be formally evaluated, are almost always underestimated.  High expectations and a presumption of competence are essential in teaching these (and all) children.

Some tips:
  • Remember what apraxia (a key component of Angelman Syndrome) is:

    • a inability to perform a task, especially speech even though:
    • Cracking jokes!
      • the request is understood
      • there is willingness to do the task
      • the muscles work properly
      • the task may have already been learned
    • This means
      • you can't assume a child with AS doesn't understand, is "acting out" or "refusing", is physically incapable or that he or she has forgotten what was learned
      • you can assume that the more the child wants to do or say something the harder it will be and he or she is inevitably more frustrated than you are
      • the child with AS will be consistently inconsistent, not because of intelligence or behavior but because of apraxia
      • a burst of strong emotion may override apraxia 
      • Also since you can't measure the child's knowledge fully because of the combination of fine motor challenges and apraxia of speech, plus possible vision and auditory processing issues, even using high technology, you must assume that the child is competent to avoid causing an developmental disability through educational neglect
Thanks for the gifts.
  • Introduce robust Augmentative and Alternative Communication early
    • but it is never too late (the student in the picture to the right started using a robust AAC system at age 12 and is able to communicate many thoughts, ideas and feelings with her system)
    • remember you have to have words to use words - hence the robust system
    • don't get stuck in the request rut, requesting (manding) is an important skill but it doesn't need to be the first or only thing you work on in AAC, furthermore a child who is only able to request will appear to have severe developmental disabilities even if he or she does not because requesting is such a tiny part of communication and social connection.  Imagine a conversation if you were only able to request.
    • Masked buttons aid learning
      •  "Hi!" "I want iPad."
      • "How are you?" "I want drink.
      • "I see you have your red shirt on today" "I want outside"
    • masking (hiding) some vocabulary on high tech devices is one way to build motor patterns as language increases
    • intensive aided language stimulation is very effective in teaching use of communication systems or devices to people of all ages with AS (as it is in nearly all AAC learners)
    • video modeling is extraordinarily useful in AS, children with AS love to watch videos of themselves and favorite people modeling communication, life skills and academics on a computer, tablet or television screen - even mirroring a live stream of a classroom lesson or aided language stimulation can be a great tool

    • include the ability to communicate about favorite people, places and things as well as favorite past events in the AAC system along with the core vocabulary and student specific fringe words, talking photograph albums are a great way to do this! 
    • social media is an amazing inspiration to get kids who turn to faster methods like adapted sign and gestures to practice using their AAC systems - sending video texts, using Skype or FaceTime or just making and emailing a video to Grandma can create some AAC miracles 
    • avoid forcing communication use when students could be independent one their own (i.e. don't force to ask for each bite of food if they can self feed; don't force them to ask for a book or to turn the page of a book if they can just do like all the other kids and go get the book or turn the page), however these situations are perfect for modeling language on the AAC system 
    • consider alternative access methods if pointing is too difficult this can include using a
      1 for talking and 1 for playing!
      stylus, whole hand pointing, a head pointer, a flashlight, a pointing splint, partner assisted scanning and even, for some children with AS and very complex bodies head tracking or eye gaze run systems (the One Little Finger song is great for working on pointing!)
    • remember to be mindful of vision, auditory processing and sensory needs as you choose an AAC system, as well as when you design and implement instruction  
    • Remember the child needs someone to talk with, something to talk about and something to use for talking this often means a tablet for playing with and one for talking about what you are doing!
    • perceptual salience is key in AS, you must talk about and model how to talk about what is grabbing the child's attention at that moment - even if you ignore it they won't!  Name it and then you can move on, better yet name it and use it to inspire communication teaching!
    • embed AAC instruction into highly motivating activities

  •  Inclusion is a great way to ensure peer relationships and high expectations
    • full time inclusion is ideal
    • but some inclusion is better than none!
    • inclusion should include inclusive instruction (not just "specials" and lunch)  See Erin Sheldon's research on this topic for more.
    • consider inclusion in social rites of passages like birthday parties, religious ceremonies, sleep-overs, dances, prom and graduation and start teaching skills to be part of these things well ahead of time 
    • video modeling is a great way to teach both academics and social skills in the classroom and peers are often eager to help with video creation projects  
  • All Behavior is Communication!
    • Create a communication glossary that shows images or videos of the child using
      Owen's sign for "yes"
      adapted sign, gestures or other communicative behaviors so everyone will understand them.  You can then pair the glossary entries with videos of how to say the same things using the AAC system as a teaching tool.
    • Use visual supports frequently such as visual schedules, social stories and visual rules
    • Be careful not to interpret vision, auditory or sensory issues as negative behaviors
    • Remember learning cannot happen until sensory needs are met, be sure to offer sensory choices appropriate to the child's current state of arousal and teach self-regulation.  Work with OT and PT to ensure the child get enough time to move, is properly positioned when seated and has the sensory tools he or she needs at the time he or she needs them
    • Build positive behavior supports and self-talk into AAC systems.  Respecting a child's communication that she "Does not feel safe because there are too many people" is better than having your hair pulled and allowing a child to cue himself to say "I can have safe hands" is better than creating a reliance on an adult to do that for him
    • Be careful not to socially reinforce something that might be cute or funny the first time but won't be the 300th time.  Remember that it is easier not to socially reinforce something the first time it happens than it is to replace that behavior later!
    • In the same vein be sure to socially reinforce appropriate communication as it happens, individuals with AS tend to be socially motivated and skilled at figuring out how to get their social needs met


  1. Such a wealth of information in this post, Kate. Thank you! Can't wait to share this with my students. :)

  2. Wow! There is so much valuable information in this post. I cannot wait to try out some of these strategies with my own students. Thank you!

  3. Thank you so much for this concise yet comprehensive primer! I will share it with my daughter's school team. She will be entering 6th grade in the fall, fully included since pre-K - yay! Thank you also for not using the term "Angels" when referring to our kids - I am one parent who does not care for it. :)


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