Angelman Syndrome and strategic education in adults:
1 – Day to day of a person with Angelman Syndrome :
– Non verbal but good understanding and comprehension skills,
– Desire to communicate, need to communicate, knows how to attract attention to make a point,
– Difficulty to understand certain situations,
– Slow to catch on, but possible in simple tasks (capacity to imitate),
– Limited concentration (but increasing in adulthood),
– Every effort deserves a reward to stimulate motivation.
Suggested tips :
– Plan : first, then what, and after that…..(breaking down into sequences the activity),
-Beginning, time spent, end of activity (using a timer to show the time remaining with a buzzer at the end to accent the completion of the activity),
– Apply other types of communication : gestures, signs, pictograms, photos, etc..
– Propose activities based on likes (fruit, animals, …) The first rule of motivation is the use of varied material,
– Head to head activities to limit distraction and dispersion of the material,
– When finished : let it be known that it is finished and put away the material
– Functional priorization,
– Try to see if it is the Syndrome that is hindering apprentiship, learning something, acquiring a competence, or is it that no one has taught him ?
(personal note… in many cases when teaching something and it does not give the required results we have a tendency to not go any farther… this is an error in AS individuals because often they don’t tell you in your language that they have picked up on something and you will realize latter that they did pick up on what was required. Moving ahead even without the required result helps our AS children).
In order to avoid failures in these activities, search what corresponds most to his/her abilities :
Neither too hard, or too easy and working individualy.
Keep in mind this important question : what will serve suc hand such an activity, is it necessary, will it not provoke a level of frustration ?
Keep in mind the theory that witt or spirit is acquired only toward age 4. If not acquired, the person is incapable to do wrong, nor to take vengence on someone, to think that someone else may be thinking differently than them, to be able to understand in what emotional frame of mind the other person is in, and thus be able to adapt to the situation at hand…..
2- Behavioral problems in Angelman Syndrome :
Here we talk of behavior which is inappropriate in a given environment: any unusual behavior, or habits which may apprear strange to others are …not necessarily inappropirate behavior (i.e. arm flapping outside is not a behavioral problem).
It is however if :
– It is dangerous for the person doing the flapping,
– If it is dangerous for others around that person,
– If it hinders in a significant way the person’s integration within that group or his personal education (exclusion factor).
Some reasons which can cause behavioral problems :
– Trouble for the person to express oneself,
– Problem understanding what is required of him,
– Interruption or ending a pleasant activity,
– Sensory stimulation which is unpleasant or causes pain,
– Absense of time for the person to react ( anticipation ),
– Confusion in the situation (i.e. change in itinirary or routeen)
Troubled behavior is often an inappropriate means of communication in Angelman Syndrome.
What can we do ?
– React on the triggers that cause the behavior,
– React on the environment,
– React on the consequences,
– Adapt the environment,
– Structure the space or environment : anticipate, simplify, predict and be flexible,
– Encourage the means to expressive communication,
– Research the possible medical cause(s) – ( 1/4 cause inapropriate behavior )
– Help the person to make a choice ( that which is prefered above the rest),
– Attempt to have the person change their mind.
Odile Piquerez (Charles de Broin Translation)