Friday, May 17, 2013

PWS Awareness Day #17: OCD and Emotional Regulation

People with PWS very often have obsessive-compulsive tendencies. Sometimes this manifests as a need to perform a certain procedure prior to engaging in an activity, or maybe an insistence on wearing only certain colors of clothing. They might ask the same questions over and over (and over and over...). This can also apply to food, with an insistence on certain foods in a particular order or other routines. Their train of thought gets "stuck" and they might need help moving on to a new activity. And because people with PWS tend to have impeccable long-term memory, the routines are not easily forgotten. For some, the OC tendencies take over to such a degree that psychiatric medication is needed.

Combine this with difficulty in regulating emotions, and meltdowns can occur very easily. People with PWS tend to lack the mechanisms in the brain responsible for regulating emotion, so a negative response to a troubling situation happens as quickly as a reflex. There is no reasoning once the meltdown has begun. This continues well past the typical tantrum ages for most children.

As one can imagine, this can cause great difficulties at school and other public places. The world is rarely predictable, and so families with a loved one with PWS constantly strive to give a heads-up when possible, but this is not always possible. It is common to have to manage an out-of-control meltdown and deal with the stares (and sometimes comments) of strangers.

We are definitely seeing more of this with Dean. His meltdowns are so quick that you don't even have a chance to respond, but luckily, they are short-lived. Every day, with every activity from getting dressed to brushing teeth, we try to balance keeping his routine the same so he is comfortable, and yet switching it up as much as possible so he learns to be ok with adapting to change. It helps, but nothing is foolproof.

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