The Invisible Disability

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. 

About kristenkj

Laundry is my nemesis. And also dust.

7 responses to “The Invisible Disability

  1. karen

    If I may share what I have learned the hard way — I had to stop suffering over what I perceived another is going through or going without or hindered from doing. I learned that love isn’t about fixing another person’s disability so that I don’t have to suffer over what I see or predict he/she will go through. I learned to see the “whole garden” and nurture what I can and enjoy watching things bloom and be strong when something doesn’t. Or just “be” and make peace with life as it is — terribly & beautifully imperfect. Not that you are trying to “fix” anything — it’s just what I caught myself doing and making myself beyond miserable, cultivating a terrible stockpile of guilt and self doubt. Life has a way of surprising us – burdens many times bring us unexpected talents, accomplishments, and blessings. You’re an outstanding mother. Your family is strong. All is well.

  2. Oh, Kristen, I can’t imagine the day in and day out of watching your child struggle. I am sorry. There are no other words to say. Praying that your Henry will do more than “get by”, but that he’ll be able to revel in life to the fullest.

  3. I can’t even say I know what you’re going through. I’m sorry you’re going through this. What I do know is that you are a wonderful mother who would go to the ends of the earth for her children. You will continue to do all you can and what’s best for Henry. And you have friends who will stand by you, listen and help when you need it.

  4. Rebecca

    Can I offer a suggestion? Stop reading now if the answer is ‘no’ :).
    Share what your concerns are with Nicole, especially about no know what it sounds like to Henry – you are in a unique position that Henry’s teacher CAN describe just what life might sound like to him AND she can help to make sure that his transition to Kindergarten is as smoot and seamless as it can be (or is for ANY child). She is so open with her hearing loss and will answer any questions you have about it for you – USE HER…if only all children with disabilities were able to have a teacher who actually has walked in their shoes :).
    Ok- end of unsolicited advice…Have a great weekend!

  5. Rebecca

    Sorry for the double comment, but I went back and read your post again and wanted to remind you not to underestimate yourself. You are GREAT mom to Henry (and the other 3 too :)) and you ‘get it’ more than you think you do. Each time you face a ‘next step’ with Henry you will run this range of emotions – so get ready, and prepare yourself by KNOWING Henry is blessed to be in the family he is and that while he does have a disability, the impact on him as a handicap is as small as it can be BECAUSE of you and David. If every parent I ever worked with ‘got it’ like you do – wow, would my job have been SO much easier!
    Ok – I’m done monopolizing your comment space, again, have a grea weekend!

  6. Hey… Everything you wrote could have been a copy of a personal letter of mine own at some point in time. I still have those days… but, for the most part – not very often anymore. Of course, my son is 11 now… and I think in my case, it definetly got easier with time. The more I learned, experienced, and saw with my own two eyes – the better. I have learned that while having a hearing loss makes him “different” – and yes, he will always have certain things he has to deal with because of it – that he really is fine – just the way he is. I don’t expect any less of him than I do from my other hearing son… and that is only to do his best. So far, his “best” is pretty darn impressive. He gives his little (hearing) brother something to shoot for… =)

    I hope the workshop gave you some other good info… All you can do is take it all in… and be on the look out for potential problems, and handle any that arise the best you can.

    To me… it sounds like you are already doing that – and from looking at some of your beautiful pictures – it looks like Henry is a pretty happy little boy.

    =)
    debcny

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