We see common traits and behaviors in many of our kids with PWS and many of these are caused by an Executive Dysfunction Disorder. Executive processes allow us to create and carry through with goals, to self-monitor and regulate our emotions, to plan, and to inhibit our responses (think before acting). People with PWS have a deficiency in these areas which leads to:
- Poor time management- this will look like avoiding a task and then rushing through at the last minute.
- An inability to form goals because the ability to create steps to achieve those goals is impaired.
- Inflexibility in thinking. If something is true one day then it must be true the next day in order for it to make sense.
- Relying on imitation rather than a thoughtful reaction. It is difficult to understand their environment and therefore people with PWS will often look to others to see how to react. This can be good or bad depending on who the other people are around them.
- Impaired capacity to think before acting.
What can we do about it?
This is where daily schedules and strict routines come into play. We manage their time for them until they can learn how to do it for themselves. We have seen children who had no capacity to manage their own time learn over the course of a few years through daily work on what 5 minutes looks like, what we mean when we say one hour etc.. Children who have been working on creating goals for themselves and what steps they need to take to achieve those goals were once children who could not manage the sequence of dressing themselves. So we do see improvement with practice.
Social stories can help to make children see that they have a choice in every situation and do not need to rely on others to see what their response should be.
A neat, clean and predictable environment. The less clutter in a room the better. It is hard enough for our kids to concentrate and focus as it is and in a busy, loud or cluttered room it is nearly impossible.
Visual schedules for each part of the day, these can be vague in case specific activities need to be changed.
Undesired behaviors are often seen as being stubborn, manipulative or aggressive when in fact they are usually a result of feeling out of control in their environment as a result of the inability to process, manage time and space and inhibit their responses to stress.