It's about living

One thing we have learned in the last few months is this:  it doesn't do to wait until the crisis occurs to get ready for the onslaught.  I think we were frightened of putting Alan in the hospital for behavior management.  We had heard so many nightmarish stories of adults with developmental delay in these kinds of facilities.

However, our experience has been very positive and it is heartening that the medical community is beginning to recognize the unique needs of this underserved population.  After consulting with the doctor in charge of Alan's care, we understand that this will be probably be necessary again.  It's no longer an unknown and frightening scenario.

While Alan has been in the hospital, we have seen first hand the calming effect of a strict, predictable schedule for our son.  He has lost so much of his ability to "go with the flow" - which was limited by autism to begin with - that we need to provide him with fewer choices, and the security of a known order to every day.  The waiver program we chose for him has had a goal of greater independence and personal choice.  This was appropriate when we placed Alan there two years ago.  Now, however, Alan will only become more dependent, and his ability to make choices will continue to decline.  It is a testimony to the staff who care for Alan that they are committed to helping him stay where he is for as long as possible.  They are willing to amend their goals.  They want Alan to feel safe and secure.

We are working on creating a schedule similar to the one he followed in the hospital.  We created picture icons to go with the schedule; Alan will eventually have difficulty reading and following directions, but he will be able to understand the picture clues for a long time to come.  We are preparing for the crisis before it occurs.

Alan's world is getting smaller, but safer and more predictable.  It is like the changes our family had to make when we finally realized that helping our autistic son navigate the world required us to make our world smaller and more predictable.  Holding on to old ways of doing things is harmful.

When Alan was younger, I remember having a mental picture of Jesus as the Good Shepherd, keeping the sheep inside the gated sheepfold.  The sheep only go out with the Shepherd that they know.  I saw the changes we made as an acknowledgement of our need to be dependent on the Shepherd to stay safe and secure; to only go out of the fold if we are following the Shepherd.   Right now the safest place for our son is inside the fence.  This is Alan's abundant life; a life that will make it possible for him to live happily.

With Huntington's Disease, the world shrinks.  I think of the walls of Alan's world as a way for us to hold and comfort him.  Yes it is sad that this is happening, but our goal now is to help our son live with this disease.  As my husband says about his work in hospice, "It's about living, not about dying."

We will have more episodes to deal with, there will most likely be more hospitalizations, we will see more decline.   This is inevitable, but we can be ready to face those situations if we order Alan's world in such a way that prepares him - and us - for these changes.


  1. I've been reading your upbeat thoughts and have been truly moved.


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