, ,

Last night was yet another night that makes me question whether or not I actually understand the depth of complications a hearing loss can bring to a young child.  And again, whether or not I truly do understand and accept that Henry is going to experience some of these complications.

I attended a workshop put on by the county for special ed children moving from pre-k to kindergarten, and in the span of 90 minutes, my emotions ran the gamut, from sorrow, to amusement, to pride, relief, confusion and worry.  I sat there, before the session began, and read through some of the information handed out.  One of the sheets listed all of the previous year’s pre-k students who rose into kindergarten and which category they fell into.  I hated that they were categorized by their disability, and that Henry was in one of those groups.  I got this sinking feeling in my stomach…about how much harder kindergarten is probably going to be for Henry than it was for my other kids.  One of the other booklets handed out was called “Celebrating Special Children.”  I sometimes forget that I have a “special child.”  Yes, it is beautiful at times, it is moving, it is uplifting, it is encouraging.  It sometimes feels triumphant.  But it is also sometimes just plain old sad, to know that he’ll have any type of struggle. 

So I’m sitting in this workshop, and as the panel presents, I begin to realize the scope of the Special Ed program in our county.  All the children they serve…all the problems that some of these special children face.  The difficulties they have in school.  I think to myself that maybe Henry doesn’t have it that bad afterall, there are kids with some real difficult challenges, and Henry is only hoh.  (I sometimes amaze myself with my stupidity.)  Somehow, I routinely forget the challenges he will face.  I am so used to the day to day, the deaf/hard of hearing pre-k program that caters to his needs, the ease of his life right now, I forget. 
As irony would have it, I returned home to find a piece written by Karen Putz in my inbox.  It included the following:  “…hearing loss is often referred to as the “invisible disability.”   Often people are unaware at the incredible amount of work it takes to gather information and understand communication that goes on around us on a daily basis.   And others are often unaware of how much just slides by, because it’s physically impossible to get 100% access to all that goes on around us when the sense of hearing isn’t all there.”
And then I remembered, early on after Henry’s diagnosis, reading a book called Not Deaf Enough.  I remember something in that book about how children that are hard of hearing sometimes fall through the cracks, because they’re not really deaf…  They can “get by”…  Their disability is not really a disability… 
The cold reality is I understand very little about what life sounds like to him.  And I don’t know how to help him because I have no idea what this is like for him.  I can see why being d/hoh is called the invisible disability, because there are always people like me out there that perpetuate the idea.  I wonder if I’m ever going to get it.