Confessions of Moms with Special Needs Children

image from http://www.zippi.co.uk/thestudio/creating-art-using-roy-lichtenstein-art-techniques/  Roy Lichtenstein

There are a lot of things we never tell people.  We keep a lot of things hidden, either out of fear of being judged or because we don't think people can relate.  I'm talking about moms who have special needs children, of course.  So here is my confession:

I'm a member of the group "At Home" on Facebook.  Basically, it's a group of women from all over the US, who share their personal decorating ideas that they use in their own homes.  After joining this group, I figured out that there was a disparity between these women and myself.  The first time I read through some of the posts, this is what I came across:

Woman posts picture of two tiles sitting on a counter.  Woman asks the question:  Help!  Need to decide which one to use for kitchen back splash!  Have no idea, need to decide by this weekend or Hubby will choose for me!  Need advice!

or, Woman posts picture of side table with a display on it.  Woman asks this question:  Is this too much?  Do I need to take away the flowers?  Should I add a giant letter Q?  What do you think of the color? So unsure!

And the disparity I discovered was that while I enjoyed reading this stuff and seeing what people came up with, I couldn't relate to it at all.  I would read these posts, and I would think, I wish the biggest thing I had to worry about was which tile to use for a back splash or whether or not a picture is centered on a wall. These issues seemed to consume these women to the point that they needed to post about it on Facebook.  I couldn't understand it at all, because my life has not been like that for such a long, long time.  

I've talked to other moms with special needs children and they have similar issues.  Some of them get angry, when they hear people complain about their neurotypical children.  Some of them get jealous when they see families out together, having a good time, able to enjoy outings that are pretty much shuttered to us.  Some of them have children who are violent, and they have to lock up anything that can be used as a weapon (I'm not making this up.) Some of them struggle with negative feelings towards their own special needs children, because having that child has changed their lives so profoundly, in sometimes negative ways.  And some of them are so angry and depressed that they self-medicate with shopping, alcohol, food, anything to take the loneliness and pain away.

I think this is something that never gets talked about, because moms like us are often labeled as "superwomen".  People shake their heads at us and say, I could never do what you do.  I really believe that anyone could, if it was their own child, but that's not the point.  These same people who call us "superwomen" or "wonder women" don't know how lonely we are and how isolated we feel, they don't know how often we lock ourselves in the bathroom and just cry, because we've had a really hard day with our kid, and they don't know that we can remember what "normal" was like, before autism came along and changed our family dynamic forever.

This may seem like a really negative spin on the situation, and also very dark, so I want you to understand that of course we know that it's not always like this.  We do have friends.  I'm fortunate enough to be surrounded by really supportive family members and an amazing church family who offers help all the time, and I'm really thankful for that.  What I'm trying to say is that not every woman has this.  Some women who deal with this situation are completely alone; they do not have any family members that are capable of understanding or offering help, and most of their friends have disappeared into the woodwork.  

So, if you're a mom, and you have a child with special needs, and you're reading this, know that you are not alone, that there is a whole army of us out there doing what you are doing, feeling what you are feeling, and experiencing the same thing that you are.  You're not by yourself, you can reach out to me on this blog, you can shoot me an email at rachstogner@gmail.com, or find me at alltogethercleburne.org.