Isolation. One of the Realities.

Isolation is one of the realities of our family.  We are often alone together.  This is not necessarily bad, nor is it necessarily good.  It just is what it is.


We were talking at dinner tonight about one of the realities of having an adult child with autism - the isolation of our family unit.  Not that we are shunned or ignored or that people run screaming from us in the other direction. It's partly the result of having a child on the spectrum, partly from being exhausted (often from issues related to have a child on the spectrum), and partly due to the logistics of trying to plan adult time away.  All of this equals isolation for our family as it becomes easier to simply stay home together.  I have often told my husband that we would do just fine on an island by ourselves as we are pretty used to that.  The island would be warmer and prettier than our house though.   


Our younger daughter informed us that married couples spend less time with other people.  It's apparently been researched.  I can vouch that this is true for this married couple.  Add to that the reality of having a soon-to-be twenty-two year old who cannot be alone.  Ever.  This means we have to plan everything ahead of time if we want to have any adult time, be it just the two of us as a couple or if we want to do something with other adults.  Planning includes finding somebody to watch RJC and paying somebody to watch her.  On top of that, there is no spontaneity.  It's not like we turn to each other and say, "Hey, let's go to ___ tonight!"  Other couples are pretty much freed up when their kids are 12,13,14?  And certainly they are no longer paying babysitters as  they can have their kids invite other kids to come over and hang out so they are not completely alone.  This is not an option for us.


This makes for a complicated family dynamic.  I can get melancholy, feeling like I'm missing out or tied down to my house.  I miss my gal friends a great deal.  But when I have an opportunity to get together with them I feel guilty that my husband is left behind with our gal (though he assures me it's fine).  Going away for a weekend?  I would absolutely love to but that is a long time to leave the two of them on their own.  On top of that I feel guilty going away for a weekend and leaving my husband behind when we rarely get away ourselves.  So even if I were to get away I'm not sure I'd actually relax and enjoy it.  With all of this negative emotion associated with getting away it's not a surprise that we don't.  And so the result is isolation.


I should point out that the unexpected benefit is that our little family spends much more time together than many families I know.  We eat dinner together every night then watch some tv - Red Sox for sure - while we snack together.  For the most part our Saturdays and Sundays are also spent together (though my husband may work a few hours).  RJC plans our weekends and we can usually sneak in some errand that we need to do as well but again...we do it together. When we do have the opportunity to vacation we are constantly thinking about how to plan a vacation that RJC can not only tolerate but will enjoy, and secondary to that is the consideration of what the rest of us will enjoy. Sometimes the attempt to plan is overwhelming and we  simply do not go on vacation.  As a side note, Disney really ruined our one awesome vacation that our family counted on.  Thinking about it - our social life is almost completely planned by our almost twenty-two year old on the autism spectrum.  Ok, somebody else must see the irony here.


At one point we had a specific date night but my work schedule changed because there is no transportation to RJC's adult program so I spend over an hour in the car before landing at work at 9:30 AM.  This also means I work until 6 PM.  By then I'm not really energetic and excited to go out and about.  We have recently found somebody who has started to take RJC for a good few hours on Sundays and we have tried to enjoy that time together.  I will admit - I have been known to steal long naps during that time.  Somewhat counterproductive to our goal of spending time together.  But it's a start.


I completely understand that much of this isolation is self-imposed.  My anxiety kicks in (see previous post and you will understand).  But an equal amount is just reality.  The reality is that there is a great deal of work to be done in planning to get out.  The reality is that we have to figure out how to best pay for getting out.  The reality is that we have to find somebody whose schedule allows them to watch her and who is trained to watch her.  The reality is that when we do manage to have time alone we often have some errand to take care of instead of enjoying the adult time.  The reality is that I'm tired.  Often.  And the thought of going out is then overwhelming.  Which starts the cycle of isolation.


To be completely clear, I am not complaining.  I am sharing our reality.  I have given this a great deal of thought and I know that changes need to be made in mindset as well as actual action to be taken.  Some days I'm up for it and other days, not so much.  In the meantime, I will cherish the times we manage to organize adult outings, and I will just as equally embrace our isolation.  For it is our reality.  And it is ok.