Finding out your child has special needs is not an easy pill to swallow.  For me, finding out Emma had developmental delays was an even harder pill to swallow.  When we were in the hospital was when we got her medical diagnosis: Septo Optic Dysplasia (from now on I’ll use the acronym SOD).  To us, that was all medical.  Those “special needs” were going to take getting used to, but we’d get there.  Like I said, it was a life sentence, not a death sentence.  However, it was when we had her tested in the public school system that we learned she had developmental delays.  What does that mean?  Well, with Emma, it included cognitive, emotional, social, physical (gross and especially fine motor skills).  She had delays pretty much across the board.  As a parent, that brings up a whole new set of concerns.  We already had concerns for her medical well-being, and now we were facing so many questions regarding her mental well-being.  It was like a dark cloud hanging over us.

When things like this have happened, and they’ve happened quite a few times for us, I’ve learned that it’s best to figure out how to deal with it.  Nothing can be accomplished by wondering “why me?” “why her” “why did this happen?”  It happened…let’s find a way to work with it.

The first thing I typically do is research.  I look up information online, and I look for support.  With Emma’s new diagnosis of SOD, I came across 2 groups.  The first was FOCUS Families.  One of the founders lives right here in Arizona and she’s a great lady!  Her adopted daughter has SOD.  I immediately connected with their online email group and I shared Emma’s story.  I received so many emails of support and encouragement.  To find a “family” out there that can understand what we were going through meant the world to me, especially since SOD is not all that common (estimated 1 in 300,000 kids).   The next group I found was the MAGIC Foundation.  They are based out of Chicago and MAGIC stands for Major Aspects of Growth In Children.  Their foundation deals with any condition related to growth.  Again, just another support system that helped me keep my chin up when it wasn’t easy to do.

My recommendation, when someone is dealt a blow, is to find support.  It’s good to research and find more about the condition, but hearing stories from people who “have been there” is invaluable.  If anyone needs help with finding support for a new diagnosis, or for anything, please leave me a comment and I will do my best!

When you’ve got a Dark Cloud Above, what do you do?

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