Monday, February 24, 2014

Life with a Child with Special Needs: One Parent's Perspective

I’ve been thinking a lot about what it’s like to be a parent and particularly a parent of a child with special needs.  A friend of mine recently posted on Facebook about how hard it is and how defeated she felt.  And that got me thinking even more.  My husband hates when I think . . . sorry honey, I’m going to do my best to put my thoughts and feelings into words on paper.  So here goes.

I’ve been feeling pretty darn good lately about things, particularly my ability to parent a child, and now 2 children, with special needs.  No, we didn’t adopt, we have just uncovered some new diagnoses in my eldest.  (See previous post).  Anyway, I have to admit, I was maybe even feeling a little high and mighty.   Still overwhelmed for sure, but most importantly able to fully (or so I thought) “accept” and “embrace” their “special needs”.  But as I’ve delved into my own psyche a little further, I think in truth, that having a child with special needs is a daily. . . well, I don’t want to say struggle. . . how about “daily process”.  Yes, that is more fitting.  I personally, at least, THINK about the fact that my children have special needs daily.  But lately, I’ve been quickly able to calm my, shall we say “doubts”, with thoughts of acceptance.  For example, each day when I have to open a gate so I can go upstairs just because my 5 year old would take off upstairs and get into great mischief, I think, however briefly, “ugh, if she didn’t have special needs, Down syndrome specifically, I wouldn’t have to have these damn gates all over my house”.  But then I quickly catch myself and turn it around and remember that I love Chloe for who she IS and really wouldn’t want to change her because then she wouldn’t be Chloe, with all her joys and wonder.  I am able to quickly accept and embrace her. 

After reading my friend’s post my first reaction was “Oh I feel so sorry for her, that she’s not where I am.”  But the more I thought about it the more I realized it’s not that she’s not where I am. . . as I am often there too, rather she is just in one of the many valleys we as parents, and even more so parents of children with special needs, experience all through our children’s lives.  Peaks and valleys.  The acceptance and embracing of them is ALWAYS there, it’s just sometimes harder to access.  Sometimes we feel defeated.  And that is OK.  In fact, it’s more than OK, it’s normal and healthy and all part of the process. 

I recently revisited some past blogs of my own, particularly one about admitting I didn’t like Down syndrome and then a follow-up about being “back on the Ds train”.  I think my own somewhat adverse response to my friend’s post was my own defense against those hard-to-face feelings that we all experience at one time or another.  Those defeating, overwhelming, what-the-hell-have-I-gotten-myself-into feelings. . .and my words to her may have seemed trite, but I stand by them. . . “This too shall pass”.  Granted, that doesn’t make it any easier when you’re going through it, but maybe just to offer a glimmer of hope that this really is just a phase.  Not just for the kids, but for us.  Just a valley that WILL once again lead to a peak.

So in closing, what IS life like as a parent with a child or children with special needs?  Well, it’s just like that of being a parent of ANY child.  It is just often magnified with greater and longer experiences of those peaks and valleys.  We just have to remind ourselves that although the lows may be lower, the highs are often higher!  And to meet our children, like ALL children, where they ARE and NOT where we want them to be.  If we can remind ourselves of this, we will once again be able to see the joys in what they CAN do. . . and not be focused on what they can’t.  But like many things this is a daily and ongoing process.  Hey, what doesn’t kill us makes us stronger, right?!