Make a list!

Years ago a very wise woman taught us that Nick was experiencing anxiety.  We had no idea.  For a short period of time, Dr. Susan Alling was a part-time caregiver for Nick.  She taught us to recognize when increased anxiety was the underlying cause of his acting out behavior.  In addition, she showed us techniques to use that helped Nick regain his peaceful and happy outlook on life.  I am grateful to Susan, this information has been incredibly useful as we care for our son.

In a few days from now, we are traveling to Ireland.  Nick loves traveling on airplanes.  Airplanes are his favorite thing.  However, he also has increased anxiety, anticipating and preparing for the trip.  When he is anxious, he will begin to perseverate.  It can be a response to stress, exhaustion or overload.  It is also a way to self-soothe and relax the mind.

According to the dictionary, Perseveration is the abnormal or excessive repetition of a particular response (such as a word, phrase, or gesture) despite the absence or cessation of a stimulus. It is usually caused by brain injury or other organic disorder.  In simple terms, the person is stuck in a repeating pattern.

For Nick, the perseveration can be so compelling, that the repetitive pattern of behavior interferes with his daily routines including rest and relaxation.  We have noticed with Nick, that an increase of perservation seems to precipitate his cluster seizures.  In an effort to avoid these seizures, we do all that we can to arrest these behaviors.  For us it can be very frustrating and frightening.

This past week, Nick was perseverating about packing his suitcase for the trip.  We tried the usual things of redirecting him and creating a schedule on the calendar.  He marks the days and checks off the tasks as we are preparing.  This time it didn’t work.  His anxiety was interfering with his sleep at night and then he got sick with a cold.  More stress for us.

My sister Ann had a brilliant idea.  She asked Nick if he had made a packing list.  He thought for a moment, and replied, “no, I don’t have that.”  So we listed it as a task to complete and Nick’s friend Dave helped him create the list last Friday.  He loved it.

When I read his list, I laughed out loud.  The first thing on his list was his airplanes.  14 of them, each one listed by name.  He did include clothes and toiletries too.  One of the amazing things about people with compulsive, autistic behaviors is that they are very thorough.

Over the last few days, when he has started to spin (our term for his preseverative repetitive behavior) we have given him the list to review.  I am sure that you can tell by the look on his face in the picture how happy he is to have this list.

I am grateful when someone has an idea that works, even if only for a while.  Nick is calmer which makes our life easier.  He is smiling, all is well.

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