Isolation

What we call the beginning is often the end. And to make an end is to make a beginning. The end is where we start from.
 - T.S. Elliot

There is no greater hell than to be a prisoner of fear.
 - Ben Jonson

 
  

Whenever I do a particular workshop for families who have children with disabilities, there a specific section of that workshop where we talk about  social issues and how they impact those families.  I always ask these families how many of them find that since their child or children who have a disability was born, that their social world and number of friends have shrunk.  The answer that I get back from pretty much every group over these many workshops has been very consistent.  The answer is that the vast majority of these adults find that they lose friends and their social world often shrinks considerably.  Quite a number of those parents also mention the feeling of social isolation.

The first thing any parent of a child with a disability in this kind of situation needs to understand is that they are really not that unique.  Their situation is not at all uncommon.  So why does it happen? 

While I do not have any hard evidence that I can point to, I can point to a number of conclusions based on personal and anecdotal experience, and I believe that these conclusions will prove to be accurate if any serious, hard research is ever conducted on this topic.   

First, part of it is human nature.  People often distance themselves from stressful, emotional situations.  The truth is (and any parent who tells you differently is not being honest) that having a child with a disability is very stressful and emotional.  Friends and even family often are uncomfortable with those situations or they do not want to hurt their friends, and pull back.  Over time, the friendships and sometimes, familial relationships stretch, weaken, and dwindle. 

Second, parents, especially of school age children, often find that their friends are the parents of the friends of their children.  Usually this people are nearby families in the local school.  Often, for our children with disabilities, they are in a center based program that may not be local, or maybe a self-contained program with few children, or, if mainstreamed, simply may not have strong friendships with any of the children they see during the day.  So what happens?  Parents aren’t exposed to those other adults, reducing their social circles.   It also can often be hard to develop friendships with other parents when they do not have many of the same experiences that those of us with children with special needs do. 

There really isn’t a right or wrong here, this is a ‘just is’.  It is something that we need to be aware of, and if necessary, work hard to overcome, because isolation is not good for anyone.  Personally, I have never had great numbers of close ‘friends’, but a small coterie of people who I trust deeply and call friend.  I have lots of acquaintances, but few that I let into the most interesting parts of my life.  My wife has far more friends, but hers seem to come and go more over the years.  I think a lot of it has to do with definitions of what the word ‘friend’ means and maybe our individual makeups. 

So, the bottom line is that isolation is a concern.  People are social animals. At some basic, and I think, primal, level we crave interaction with others.  We need our tribe, so to speak.  Be aware of this.  Work against it, but realize as well that if you feel isolated, you are not unique or weird.  Do not let that feeling control who you are.  You do have the ability to work through it.   What I say about raising a child with a disability also applies to parents.  Get out and experience the world.